The Life of this Chronic Migraine Sufferer: Like a Soap Opera many Plot Twists and Turns


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11-7-13

When life throws you for a loop, after years of fighting chronic pain, you either curl up in a fetal position and take it or learn to stand up and fight back. After years of fighting Migraines, then tossing in SVT, IBS, OCD, SAD, Depression, PTSD and add FM and CFS for good measure and stir up the pot and let it simmer and stew you have a nice Chronic Invisible Disease Stew sewer sludge. Add to that lots of Stigma, idiots who like to throw in 2 cents worth of advice they really cannot afford to give away as they have no idea what the heck they are commenting on, or for that matter, they have no education or knowledge on the topic they are knocking or giving so-called advice on, and the stew of sludge just simmer and boils more. The chronic pain builds and no relief. The anger over the idiots and retards with their so-called “health” advice over neurological and genetic conditions and the Stigma just abounds and astounds me more and more.

http://migraine.com/blog/invisible-illness/

http://stanfordhospital.org/clinicsmedServices/COE/neuro/headache/patients/faq.html

http://www.ninds.nih.gov/disorders/migraine/migraine.htm

http://www.helpforheadaches.com/articles/mx-stroke-risk.htm

Couple that with the idiotic uneducated so-called “expert” specialists I’ve seen over the years who have not only mismanaged me but mishandled my so-called healthcare as well. I’m not a slouch, not a “couch potato”, not a “junk food addict”. In fact I go out of my way to avoid fast food. I avoid a slew of food triggers-high tyramine, high histamine, MSG and hidden sources, Soy and hidden sources, Gluten and hidden sources, Dairy and hidden sources, Red food dye, Nitrates and Nitrites-all proven food triggers for me for my Migraines and IBS/Fibro triggers. I have strict food control. I cannot eat anything pre-packaged, frozen, canned, dried-I must eat everything freshly prepared. I have to steer clear of most chicken and turkey products that have “chicken broth” injected as that has MSG even though it says “no MSG” added there are “hidden forms of MSG such as “yeast protein” and other hidden sources. The food manufactures can get away with the outright lie of saying NO MSG ADDED as long as the words MSG do not appear on the label, but they can use other hidden sources. The “truth in labeling” campaign does not exist. Same goes for Gluten and Dairy. I have been more careful the past 10-15 years of what I eat than I have ever been. So I dare anyone to tell me to eat any healthier! Bah to them I have gone Caffeine free even after years of being a coffee and cola addict. And nix to chocolate, even though it hasn’t proven to be my trigger why take any more chances. Why toss gas to an already raging fire I say? Better to eliminate all known triggers and any and all “possible” triggers to be safer than sorry.

http://www.tacanow.org/family-resources/hidden-sources-of-gluten/

http://rense.com/general92/hidename.html

http://naturalandfree.blogspot.com/p/alternative-names-for-soy-and-soy-free.html

http://www.balancedconcepts.net/3moprog/dairy_sources.pdf

http://www.red40.com/pages/foods/index.html

So when ignorant people bash Migraine sufferers about diet at first it irritates me, angers me, then it just goes to show how stupid they are and how idiotic they are because they really don’t know. They don’t know how restricted our diets are and how careful we have to be and how much we have to cut out and how much we have to be careful and how we have to be wary of every spoonful, forkful and every meal is a challenge. Every holiday is an ordeal, a challenge and a major obstacle to those of us who cannot eat what others take for granted and call “normal” holiday fare as it will put us in a major tailspin and make us so horribly sick and not just with unspeakable horrible head pain. But also unspeakable visual aura’s, sensitivity to light, smells, sound-dizziness to rival that of a drunken spree (not that we’d know as alcohol is forbidden and on the no-no list) balance issues, trouble making sentences, bowel issues, sensitivity to temperatures (chills or episodes of heat spells) clamminess, numbness in limbs or face, symptoms similar to a stroke. Migraines are in fact, despite constant how often many unbelievers dispute, they ARE genetic and neurological and they can be severe enough that they can cause strokes. If someone is going to comment on someone’s blog, PLEASE take the time to get some education FIRST on the subject matter BEFORE you spout off. You don’t want to show off your ignorance anymore than what you already are. I mean, why shoot yourself in the foot on the Internet for all the world to see?

http://migraine.com/blog/top-10-myths-about-migraine/

http://www.healthcentral.com/migraine/cf/slideshows/10-things-not-to-say-to-a-person-with-migraines?ap=830

http://www.migraineresearchfoundation.org/about-migraine.html

http://www.americanmigrainefoundation.org/about-migraine/

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/vestibular/conditions/vestibular_migraine.html

And all this while being the good patient that I am, keeping my Migraine Diary and Abortive Medication and trigger logs (including weather and the dastardly Barometer Pressure log) and taking my research in and discussing it and making my notes, being very studious and diligent and taking my instruction well. Also making my concerns being heard very plainly the past few years-the intense stabbing behind the eye that was relentless, the chronic neck pain increasing over the years to the point of crunching sounds and limited ROM the past few years. The frightening and increased lingering side effects from each Migraine attack that would linger and the length of each attack that would get longer and blur into each other until it seemed they were nonstop and never-ending. Last year I begged my last neurologist who I thought was empathetic, after all he professed to also be a former Migraine sufferer himself, to try Occipital Nerve Blocks on me. Nope, no he said I didn’t need them-after all he said that didn’t seem to be my problem. HUH?? My migraines were predominantly in my occipital area and were horrific in pain and my migraine abortive meds would not even touch the pain when it got geared up! No he said I needed to try Botox. WTH??!! The frosting on the cake that ended it all for me with him was this past July. It was a Thursday almost 5:00 pm. I tried calling and God forbid anyone answer so close to closing time. I had one of those God awful Migraines that I wanted to dig my eye out and bash my head into the wall. I took everything I could and it would NOT touch the pain. I got this after hours answering service. The one woman was a real #itch!! Snotty, rude, hateful and obnoxious. Not helpful in the least. She said that the Doctor tried to call me back. Bull-fricking crap!! She said the Infusion Center would have to take care of me. Well great. What is the phone number, where are they located, how do I get there and what are the hours? Well they were not allowed to give me that information! WTF!!!! Friday the doctor’s office was closed. My husband was off work. He was making calls for me since he and my daughter witnessed my meltdown as I swore I would not make it through the night with the pain. I was told to go to the ER. Oh no. Not be treated like a drug addict after waiting for hours in those bright lights, loud noises and rude people after driving for over 30-45 min 1 way. Not going to happen. Take me to the funeral home 1st and bypass the ER.

Funny-doctor-cartoon

So my husband finds my now current Pain Management Doctor on the Internet. The PM Dr. tried like heck to get me in ASAP but since my bunghole neurologist/joke migraine specialist was closed he could not get copies of my office notes. So I suffer through the week. And boy oh boy did I suffer. Monday out of the blue my quack Neuro calls with info to get me to the Infusion Center. About 4 days too late, but I was still in a bad one so I go to the hospital 4:30 pm that Monday for about 5 hours and my husband picks me up. That was the only time I heard from my Neuro. A day or 2 later I get into my new P.M Dr. What an answer to prayer he’s been. At first he was not going to take me because of all the quacks I’ve seen and what he “thinks” they’ve done for me. But as he interviewed me he found out they just used me as a pill Pez dispenser basically. They never listened nor took seriously my severe eye pain or neck pain or other complaints of intense Migraine/Head pain. He ordered an MRI of my neck and did some probing. My next visit he did Bilateral Greater Occipital Nerve Blocks and the horrible Occipital Migraine I was getting instantly went away. I went Ah Ha I knew it! My MRI was back I had damage to my C4&5 disc and diagnosed me with Degenerative Disc Disease, Cervical osteoarthritis and Occipital Neuralgia and Occipital Migraines with Chronic migraines. Since then I’ve had several Cervical Nerve Blocks, Nerve Ablations. I’ve had my medication changed and reduced from when I was with the useless neuro. I’ve had PT to work on my FM and neck ROM and have an at home Cervical Traction Unit.

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I’m a far cry from being stabilized but I don’t have as many disabling occipital migraines as in the past, although this past Monday I did have a severe one that had me in a non-stop nauseated and vomiting stage and my prescription Phenergan with Benadryl was not working. Thank God my sister-in-law and brother-in-law that live 10-15 min away were able to drive me to my P.M Dr where he was able to do Bilateral Nerve Blocks on C2 Cervical to stabilize that horrible Occipital Migraine. It’s been a long, long time I had one that bad where I was actually throwing up. And it’s quite embarrassing to get car sick to boot, especially in front of family like that. My Dr. from heaven did tell me he could eliminate possibly 35-40% of my migraines which to me is a Godsend. I’ll take it. I know there is no cure and he never promised a cure. My spouse is ticked I’m not “better” or “cured” in his eyes or mind but I do have the Fibro issue to contend with which now is putting me through hell. The chills are hard to contend with and it’s adding to the migraine factor and it’s making my IBS go haywire even with keeping tight reigns on the diet. I’m learning more about This Fibro and CFS as I go along and it’s not nice. It makes for a nasty mix to the factor. When I was doing PT I could not exercise as long nor as hard and heavy as I wanted to because I felt like I was going to pass out from pure exhaustion and I’d feel like I was ready to fall asleep on the exercise equipment, or on the way home or as soon as I walked into the front door. And I found I could not recover from that exhaustion. You can’t sleep through the night, you wake up exhausted, you can’t take a nap as your eyes don’t know how to close, you fall in bed at night exhausted, but you struggle to try to fall asleep and stay asleep. Yep, the nasty side of Fibro and CFS. Sleeping pills, antidepressants to make you sleepy-they don’t work-they just add to the side effects. More side effects-that’s all I need. NOT. Maybe a rubber mallet by the side of the bed to hit myself so I can sleep and a bucket of ice water in the morning to wake up with??

migraine witch

I’m not drinking caffeine to keep me up, nor alcohol, nor chocolate, nor sugar. I’m not eating carbs, or heavy meals at night. Actually I’m having a hard time eating much at all. With the stomach and digestive issues not much settles well so I am almost scared to eat a lot of food and when I do get a migraine I’m afraid to eat too much as I’m afraid of it coming  back up. This past Monday I could not even keep down clear liquids. I finally ate solid food about 6:00 pm and kept down clear fluids about 4:00 pm. That was a good afternoon after a really bad start for me. I try not to push it too much. Light protein, very light, and lots of water when I can stomach it and if I feel nauseated I cut it off. As one blogger ignorantly replied to my post I cannot do honey, I don’t do sugar of any sort and honey is way too sweet. And I have to be very careful of fruits and vegetables-those in the high Tyramine and high histamine category are a no-no. Research your fruits and vegetables before you dare lecture me on what I should consume as I avoid my migraine triggers at any and all costs. Even though I’m caffeine free I will take a shot of it to help my migraine abortive medication get a kick-start. Some medications do have caffeine in them to make them more effective.

http://www.migrainetrust.org/factsheet-migraine-triggers-10505

What is interesting too is that we often get picked on that were lazy, couch potatoes, when it’s far from true. Many profession athletes suffer from migraines and I dare anyone to call them lazy or couch potatoes. Go ahead, I dare you, as well as many motivated famous people who lead active lifestyles:

http://www.northshorelij.com/cushing-neuroscience-institute/news-events-multimedia/anthletes-and-migraines

http://www.migraines.org/myth/mythgood.htm

Be that as it may, the Internet is all around us. Almost everyone has a smart phone now, even middle school kids have access to them, as well as tablets with Internet access and just about everyone has Internet at home via a PC, Tablet, smart phone, integrated TV and many people spend hours surfing the net either on social networks or blogging. Some people even do useful things like researching health topics-imagine that! Using a helpful tool to actually gain knowledge on topics that either relate to themselves or a loved one. So maybe while your on someone’s blog instead of replying with useless unrelated BS replies, people could get their heads our of their rumps and actually research to learn something for once BEFORE they reply and make an educated stance. Or else they will just sit there on their brains and starve them from oxygen and make useless and pointless and illogical replies that do not apply to the topic at hand. The choice is yours audience. While you have a piece of technology in your hands so powerful, make use of it and LEARN. Make a difference if not in your own life then in someone else’s. I will not let the idiots hold me back. No, I will continue to rise to the challenge. I will retort when someone makes the stupid idiotic remarks that Migraines are just headaches! Excuse me-but what idiot just said THAT! And say that to my face and not  behind my back like a sniveling coward that you are!! State your full name and your email address for a reply!! If your going to make comments like that stand up behind them or shut the heck up and stay off my blog!! Same goes for my FB page and my Twitter. If you can’t back it up then shut up and stay off! I don’t bother you with such idiotic BS so don’t disrespect me in that way.

Idiots-are-Everywhere_001

 

Next time I will share my recipe for homemade organic body lotion. A hobby I learned over the summer that came about over my experience with aromatherapy and from a fellow FB supporter.

Until then to all my fellow sufferers in all avenues and all areas of Invisible Illnesses Diseases, be what they may, I wish you peace, pain free days when you can get them (and cherish them when you do)  and many blessings. Just because you cannot “see it” does not mean it isn’t real and it doesn’t exist. One day we will get that through society’s head. Until then we will all band together and stay strong.

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DISCLAIMER:

Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and enjoys sharing experiences and news about Chronic Pain Conditions. Please consult your own health care providers for advice on your own unique situations and do not take any information on this site as a Diagnostic Tool or Procedure for your signs or symptoms. I will not be held liable for any misinterpretation you may misconstrue from any presented information on this informational only page.

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About Me (5-4-13)


Julie Head Shot (2)

I have got a lot of questions about myself and my experience that contributes to my blogging. I am the sole writer on this blog and any links or quotes I may use from other sites I will indicate so.

So this post I will dedicate to the boring aspects of my life that have led me onto this journey of blogging about a subject I am very passionate about. Passionate because it is a major part of my life-Chronic Migraine Disease, Depression, Panic Attacks PTSD, OCD, IBS, SAD, Fibromyalgia and CFS. I write about subjects I know because I suffer from them and I have done exhaustive research to learn as much as I can to be a better educated patient and in the interim in return I’ve had to educate some of my doctors along the way as they are not as well-versed in Daily Intractable Migraines. I was just recently given the official diagnosis of FM/CFS in the winter of 2012 so I am still in the process of trying to gather information and learning materials to be better educated on that. But an educated patient is a better patient. It teaches you how to manage your disease, how to manage the doctors that care for your disease, and along the way you pick up tips, tricks and ideas from fellow sufferers and some I just picked up on my own. I am the sole writer for this blog and I admitted from the beginning in the fall of 2012 that I am a novice to this media and I am still learning-a work in progress. I try to use the spell checker that is available in this blog editor for WordPress but it’s not as efficient as the one I’m use to in Microsoft Word. So if my spelling seems off at times I try my best, but suffering from daily Migraines where the lowest pain level might reach a 6 the Migraine Fog and the Fibro Fog kick in and I’m not 100%, but I feel it’s still important to communicate and to share what I know and what I learn, as we chronic pain sufferers rely so much on media for their information and interaction with fellow sufferers alike. So bear with me as I learn to blog better and hopefully write better content.

I was born in a very small town in Missouri called Ste. Genevieve. Most of my family originates from Missouri. Due to my dads job we relocated several times and I have been to about 4 different schools when we arrived in New Buffalo Michigan in 1974 for good-our last move and I was currently in 5th grade at the time. I did have a long bout of stomach ailments for that year due to the yet again unsettling move. It seemed that as soon as we got settled into a place and made friends it was time to move yet again. So it was nice to hope that this would be the last move. We were a close-knit family and we were not raised in any particular religious preferences, but we were taught the ethics and morals. We were taught right from wrong and got a paddling when we did wrong to reinforce it so we would not do it again. But it was done in love. Every night we got hugs and told we loved each other and when we went to school, off to work or moved out of the house it was likewise. When we became adults and lived on our own and came over for visits there was always hugs and the I Love you’s said. Never take those moments for granted. So we were raised very strict. I was not allowed to date until I was 16. As was my younger sister. I’m the 3rd in line of 4 children my parents had. My mom did have a stillborn before she had me but refused to talk about it. I have 2 older brothers. The family relationship is strained for various odd reasons. It became more apparent when my mom passed in May 2003 from a sudden stroke at the age of 69. She was diagnosed in 2002 with stage 4 colón cancer that spread to the lymph nodes. She had Alzheimer’s and CHF. The stroke was an end result of the colon cancer. My dad was diagnosed with type 2 Diabetes in 2001 after almost losing his leg to cellulitis. He had high blood pressure and high cholesterol. He had a sudden hemorrhagic stroke in April 2005 just shortly after turning 77. Watching him in the nursing home struggle for breath as he held on for 3 weeks until he passed was agonizing.

I turned 50 years old late last summer of 2012. I have suffered from infrequent Migraines for over 25 years but on May of 2010 they became daily Intractable Migraines-that was how it was diagnosed at that time. My panic attacks also became unmanageable through will power alone as I was not officially being treated for them at that point. I had IBS I was suffering from since about 2000 and I learned on my own to control it through restricting or refraining totally from dairy and soy based products. At that time there was not a lot of education, or rather should I say, there were not educated doctors that would tell you how to control IBS on your own. They were just ready to get out their prescription pads and write you out a quick fix instead of digging into the problem as most doctors do. I had suffered from an arrhythmia problem called SVT around about that time as well and it was mostly controlled by medications as I was too leery to have the than older version of the Catheter Ablation they used to go into all 4 of your major arteries and insert a 5th electrode into your heart to kill part of your AV Node natural pacemaker. So I struggled with that for years trying new medications as the current ones my body adjusted to and would not longer work. I’d have spells of uncontrollable heart racing that would have to run its course until it decided to stop. When I started having problems with this the doctors at first said “your drinking too much caffeine, cut down”. So I would and problem persisted. Then I was told it was exercise induced so I cut back on my strenuous aerobic exercise and that didn’t curtail it either. Then they decided to try one of those 48hr Holster Monitors to monitor heart rate and function. Wouldn’t you know it of course it wouldn’t act up in that 48hr time frame. Then they started hinting I was a hypochondriac. I had to argue with them and reason with them I was having a real problem until they finally decided to put me on a 30 day monitor. So here I’m going about my regular routine and I didn’t change anything more and I was getting distressed because it wasn’t occurring. I was beginning to question even my sanity when the month was almost over until on day 28, remind you it was 28 days until I got a flare up. And it’s a flare up I will not soon forget. It started at work (I was working in an elementary school at that time as a Head Cook) and the monitor kicked in. I was trying to slow down my pace at work hoping it would go away like it usually did. Well, it didn’t. I was starting to get really weak and jelly legged as the adrenaline was rushing through my veins. I eventually had to call the doctor who dialed into my monitor and said I needed to go to the ER for intervention as it was not going to stop. They said I had an arrhythmia that will not correct itself. I had to call my husband to come get me as I was not able to drive and called my boss to tell her what was going on.

In the ER they hooked me up to IV”s and started pushing meds into me that I cannot remember to try to halt the arrhythmia. It was not helping and I was panicking and the nurses as well as the ER doctor attending me were getting quite worried kept trying to keep me calm. It was into about 8hrs of non-stop heart racing and I was weak, clammy and getting nauseated. I cannot remember what last med they used but they were getting ready to get the shock paddles out to shock me back into rhythm. I remember praying so hard for the medicine to work as I didn’t really want to get electrocuted into a normal sinus rhythm, or worse. Thank God the medicine worked. They kept me there for a while to make sure I was under control before they’d release me. Then I was referred to a Cardiologist that I didn’t like at all. His bedside manner was horrendous and I fired him after 2-3 visits and told my GP to refer me to a better one. I got a nice, elderly, very patient gentleman who came with a good referral by my husbands then boss. I stayed with him until he retired and my GP took over my medicine care. I would get regular stress tests and EKG’s once or twice a year. He informed me about that procedure but I was still to chicken. I didn’t want my 4 arteries compromised and all the listed complications that they listed that could happen w/the procedure. In 2008-2009 they arrhythmia started getting out of control and occurring at more frequent intervals and medication was no longer working. I had actually ran out of medication options by that chance. I was referred to an amazing Cardiologist in Memorial Hospital. He’s the head of the Cardiovascular Institute and I immediately like and trusted him. He told me I basically had no other options but the Ablation procedure. They had perfected it by then and would only go into 1 artery instead of all 4. So I agreed and had the surgery as outpatient on Sept 11 2009. Problem corrected so far-knock on wood.

All this time I was still having the migraines, chronic upper back, shoulder and neck pain. The shoulder pain didn’t help when I had taken a fall down our narrow and steep basement steps and put a slight tear in my rotor cuff. I had PT and Cortisone shots through South Bend orthopedic and it did help for a while. When I re-injured my shoulder at work they repeated the Cortisone shots but to no avail. I would not have surgery to correct it because A. it was too small of a tear and B. a close friend of ours had the surgery, was laid up for 6 months and had just as much trouble with his shoulder afterwards than he did before. So nix that option. I said “no way Jose”. I also had infrequent bouts of panic attacks but they were not uncontrollable at that time.

Up until 2010 I had several alternative treatments to try to help my Migraines and these were options I started back in the late 80’s and they were not doctor recommended or approved-at that time GP’s thought alternative treatments were bogus and not credible and these were the treatments I found online as I was constantly searching to find my own answers as I was not getting them from my doctors. But I have tried:

  1. Chiropractic Manipulation
  2. Acupuncture
  3. Acupressure
  4. Massage Therapy
  5. Vitamin Supplements
  6. Herbal Supplements (discovered I cannot take Feverfew due to a reaction)
  7. Water Therapy-Jacuzzi
  8. Binaural Beats Meditation Music
  9. Guided Imagery
  10. Progressive Relaxation Therapy
  11. Moderate Exercise
  12. Elimination Diet-I did this on my own to find food triggers and I’m aghast it was not suggested to me prior

Then when I went to Diamond Headache Clinic in Chicago in 2006 through 2007 I tried the following therapies, some were at their recommendation and others I still found on my own:

  1. Biofeedback
  2. Meditation
  3. Relaxation/Stress Therapy
  4. Specific Stretching Exercises
  5. Elimination Diet-again to pinpoint more food triggers
  6. Migraine Diary
  7. Low Tyramine Diet

This in addition to the medications they experimented on me. After a year of traveling in horrible traffic 2 hours there and 2 hours back and spending countless hours in the waiting room to be seen behind schedule-they were always behind schedule when I was there-and the hassle of my husband and I having to take off work as I would not drive myself into Chicago traffic. Are you kidding? Me with Panic/Anxiety issues drive in bumper to bumper traffic? It didn’t bother my husband as he is from that area so he was in favor of it to begin with as he was the one that suggested it. But after a year with no real results I quit going and asked my GP to take over if he was able and at that point he said he could. So my status as a profession un-paid lab rat continued with the medication trials, and in the meantime I continued to search online for answers and to see if there were any new treatments. At that time of course there was not much in the way of Migraine treatments. My Chiropractor did write a letter to my then manager to ask to have my work station altered to be more friendly to my neck stress which she thought was adding to my Migraines. So my PC monitor was put on a stand so it would be eye level. I asked several times at my former job to have the stereo sound lowered above my desk-each speaker in the ceiling had an adjustment knob where it could be turned down. After a while those requests went unheeded. I was becoming a nuisance to them and during that time I think is where the Red Bulls-Eye was put on my head and they were going to pressure me to quit as they could not legally fire a person w/a disability, at that time the Bush administration included Chronic Migraines as a disability, little good that did at that time or today as people who suffer migraines are still discriminated against.

My then current boss would deliberate walk by my side of the cubicle doused in a whole bottle of cologne, strutting his stuff (of stuff he thought he had worth strutting which was nothing, trust me) to make my work situation more unbearable. I do have to say that boss was as intelligent as a pea pod. I called him a Baboon silently and away from work. He was not smart enough to manage a banana cart out in the parking lot, so how he got this job was retarded. He only got it because he was married to the owners daughter, who also works there. It’s a family run business and past history shows that most family run businesses end up running themselves into the ground if they don’t have the qualified management team in place. And he was fast on his way to running the company down, honestly. Why else would be have all of a sudden left that job a little over a year of my leaving? My then Team Leaders who were all part of a close-knit group of friends in high school were conspiring to put pressure on me. I was criticized all of a sudden for work I had done the 12 years prior with no complaints until now all of a sudden. All my calls were monitored. I know they are to monitor calls from everyone in the call center from time to time but mine were ALL the time. Two of them were even making a point of talking about me behind my back, over their phones which they were just one cubicle apart, but making sure I could hear it. They would call in sick for no reason and of course never be called into account. One girl often had hangovers as to why she called in and the boss even had a running joke about it, but then she never was held accountable. A lot of them did personal online shopping and checking of personal email accounts, but my computer was closely monitored for any of these actions because then it would be grounds for termination.  For a few years when I had to call into work and call off I would be the only one required to bring in a doctors excuse, but no one else was. It was out-and-out discrimination and I finally filed a complaint with the manager and then of course I was made out to be in the wrong! I knew then my days were numbered. But I didn’t know it was my health that would ultimately pay the price but at the same time come to my rescue. The pressure got so bad that a week prior to my leaving work on FMLA and then Temp Disability I was having frequent panic attacks. On my last drive home from work my panic attack was so bad I didn’t think I was going to make it home. How I did is a miracle. My last day of work was May 10 2010 when my FMLA was put into effect and I left that toxic hell hole. In hind-site that was the best thing that ever happened to me. The worse was of course my health suffered for it.

My GP at that time put me on Temp Disability, where he’d been trying to do for the past couple of years but I held off thinking, stupidly, that things would get better. Of course they didn’t. He started trying different medications on me and raised my Topomax to 300mg per day. He put me on Xanax and another anxiety drug I cannot remember the name to save my soul. But after being on it a couple of weeks I had hallucinations that scared the holy crap out of me. I’d see moving black ink blobs moving on the wall in my peripheral vision. I hear semi-trucks blaring their horns at me when none were around. I imagined things missing and blamed innocent people. Of course later when taken off those meds I discovered what I did I apologized for my behavior and at least one member of my family has yet to forgive me for. Resentment runs high in my family they tend to harbor grudges than to forgive and forget and move on. That is the same in my husband’s family as well-hold those grudges until the day you die. How productive and healthy. NOT. So not only was my workplace toxic so too my family life. I had it coming and going and I didn’t know which end was up. All I know was panic attacks were frequent and the Migraines now became daily. I was put on a waiting list to see a neurologist because my GP said he was out of options and didn’t know what more he could do. My best friend and patient advocate was with me on my last few appointments as I was not able to drive myself. The Migraines had gotten so bad they affected my vision and made me a danger on the road. Besides the doctor wisely banned me from driving. I had to wait 3 months to get into seeing this Neurologist who’s last name starts w/an A so I named him Dr. A-Holio. His bedside manner was non-existent. He was a jerk. Plain and simple. He made me feel like I was wasting his valuable time with my “trivial” complaint. He said on my 1st visit which was my referral consultation that I was not disabled and to go back to work! WHAT?? I cannot see straight to drive a straight line, horrible Migraine pain daily and everything that accompanies that! My IBS was flaring up again but I was not eating dairy or soy so I had contributed that at that time to the stress I was undergoing.

And stress is a mild word. I was sinking into a deep despair. My best friend came over to check on me and I walked her out to the car when she was leaving. I cannot remember exactly how it happened but I was leaning onto her car door for dear life to keep from falling flat on my face. I almost blacked out. She had to physically guide me into the house and made me sit down and she ran out to the pole barn to get my husband for help. I was having issues with Hypoglycemia as it turns out. It would run in the AM low 50’s and after I’d eat it would get up to 90. At that time believe it or not I was borderline “UNDERWEIGHT” I was so sick I could not stomach anything. Well the Neurologist took care of that real quick. When he tried a new med and it didn’t work he’d order a steroid to break my cycle. Now mind you I have not NEVER abused my medication. I’ve never overused it. In fact I could be blamed for sometimes not taking it at all because it scared me first off and I didn’t want to get used to it and have to go to something stronger. I do not react well to steroids. I pack on the pounds fast and I’m a witch on wheels (broomsticks are outdated). I lost track of how many times I was given steroids when he would run out of solutions. But it was too many because by the end of the year I had gained a lot of weight. And it was December 2010 when I got my 1st round of Botox for Migraines. It had just been approved for that type of therapy in Sept of that year. The insurance at first approved it, then denied it. We appealed with them 3 times, the doctor’s office appealed 2x. I appealed to the state of Indiana Insurance appeals to no avail. We, or I should say my spouse paid the then $1500.00 out of pocket expense for this treatment that did not take effect. My spouse has always resented “me” for this, for some reason, instead of the insurance company where the fault lies. But this remains a sore subject with him as he kept stating all along I couldn’t all of a sudden be that sick I need to get a job. But when I did have a job and had to call off he’d tell me I better not call off or I’d lose my job. My mind was spinning-make up your flipping mind, but no matter what I was in no shape to work. I could barely stand up w/o falling flat on my face.

In the meantime I went online and did exhaustive research on food additives and all the hidden names that these poisons go by. I’m sensitive to just about every food additive there is but what appalls me is that manufacturers are allowed to put the names of “hidden” sources for these additives but can boldly put on their label “no MSG added” when yeast protein, or glutamic Acid (the list is too long to name each one but that is just 2 of many) is listed in the ingredients and they are hidden sources of MSG!! Same goes for Soy and Gluten. See these sources I have bookmarked for more information:

http://www.bibliotecapleyades.net/ciencia/ciencia_geneticfood01.htm

http://www.balancedconcepts.net/3moprog/soy_sources.pdf

http://rense.com/general92/hidename.html

http://www.tacanow.org/family-resources/hidden-sources-of-gluten/

And go to my Face Book Page-I have a lot of links to food additives, red dye and the likes and the hazards related:

https://www.facebook.com/Julieg350dayinthelifewithmigraines

I found out on my own all the toxins I needed to avoid that were migraine triggers. I also purchased a book (one of many) that became my food additive bible: Excitotoxins the Taste that Kills by Russell L Blaylock MD who is at that time of the books publishing a practicing board certified neurosurgeon. He points out these Excitotoxins (MSG, Soy, etc) have led to the epidemic of Alzheimer’s, Lou Gehrig’s and many other diseases including Diabetes. And while your at it get this book as well: The Whole Soy Story, the dark side of America’s favorite health food but Kaayla T. Daniel, PhD, CCN. A real eye opener. It was after this I decided I can only eat fresh prepared foods made from scratch. Nothing canned, pre-mixed, frozen, prepackaged and no fast food.

During this time my friend had to intervene because I was so depressed I didn’t want to go on anymore. And a very nice pastor came once a week to counsel me until he got to the point that he professed I needed professional help. Finally by May 2011 I asked the nice nurse who worked for Dr. A-Holio to refer me to a therapist I found online who specialized in women’s issues and pain management therapy. During several sessions and after voicing my dislike of my current Neurologist she recommended one that specializes in Migraines and she had personal experience with him through her father’s illness. So in Sept or Oct of 2011 I got into to see my new and still current Neurologist. He has been a Godsend. He also has empathy for what I’ve gone through and what I suffer because he too suffered Migraines. He vowed he will try every trick in the book and find new ones and he will not give up on me. My Professional non-paid lab rat job was still intact. I have always and will continue to be willing to try new treatments and drugs to try to find a solution that helps.

All this time during Oct 2010 I filed for permanent SSD. Of course my spouse was not supportive. He said I won’t get it, don’t bother with it, it’s a waste of time and then of course his famous line during this period “go get a job”. In May 2011 I got denied as I knew I would. They always deny you on the 1st try to try to discourage people from appealing and to get benefits. Of course my husband delighted in telling me “I told you so, now go get a job”. I didn’t give up. I can be a stubborn as he is if not more. I appealed and got a good appeals attorney that wouldn’t take a fee unless he won. He worked long and hard to gather up all my old medical records dating past 2006 to present and he said I had a good case because I had a lot of medical documentation. I repeated this info to my hubby and he was his usual gruff non-supportive self. He was non-believing, as usual. he gets that from his mother’s side, sorry to say, being very negative, non-supportive, borderline hateful, resentful, nasty, non-trusting and hording grudges. As he gets older he gets more like her. It’s pretty scary at times but the sins of the parent fall on the child and it is oh so true in his case. Why do I stick around you ask? Well, like my parents I take the vows I made serious-always have, always did and always will. I’m not a quitter. In fact when faced with a challenge sometimes I fight harder. I almost gave up the summer of 2012 when I again hit rock bottom and my best friend had to intervene again and this time hospitalization and intense personal and group therapy had to take place. Of course I was blamed for that too-it was my fault, all in my head, it’s you not me-on and on, yada, yada, yada. But anyway to finish the story of the SSD appeals I had my appeal hearing in April 2012. My Neurologist submitted a letter on my behalf per the request of my therapist. My therapist even showed up at my hearing and testified on my behalf which just blew me away. She believed in me and my case so strongly that she wanted me to win my SSD appeal. The appeals judge was impressed by this and declared me totally disabled on the bench that very day, Friday April 13th 2012. My husband’s reaction was he told me it was just “good luck”. My best friend was ecstatic for me as was my therapist and attorney. I was in a fog as I was fighting yet another migraine and had to take medication right after my testimony to the judge, when I was allowed to leave the chambers. During my hospital stay was when I was diagnosed with PTSD stemming from a past childhood memory that happened to me at the age of 11 by another family member. I had repressed it for so long it was coming back in night terrors that I found out later were causing my severe insomnia.

Since that time I have tried more alternative therapies that I have come up with my own and some I learned in the hospital and from other bloggers, as I was starting to get involved in blogging late 2012:

  1. Guided Meditation
  2. Meditation Music Therapy
  3. Subliminal Music Therapy
  4. Winter Light Therapy for SAD
  5. Nintendo Wii for hand to eye coördination (recommended by PT Therapy staff at hospital)
  6. Aromotherapy
  7. Cupping
  8. Journaling
  9. Individual Therapy
  10. Pets as Therapy (I already knew this from past experience)
  11. Elimination Diet-yes, again. I tested negative for Gluten but could be intolerant to it and it was expanded that I cannot eat any leftovers more than 6-8 hrs old. If I was going to have something as a leftover it had to be frozen immediately and once thawed heated immediately and then eaten right away. I joke that pretty soon I will only be allowed organic home grown grass and drink distilled water. So my diet got even stricter.
  12. Bible Study Group-as social interaction is vital to ones overall health and well being.

In the fall of 2012 I got into blogging after I was journaling for a while. I got turned onto it by http://www.terirobert.com/ and http://somebodyhealme.dianalee.net/. Every month this is a Migraine Carnival Blog where you create a post that fits that months theme and out of all those that are submitted (the number I’m not sure of) they select about 6 posts. Of course you must have a blog to send a post and so I got started. Prior to that I was an almost daily regular on http://migraine.com/blog/ and would learn more about Migraines, treatments, medications used and at that time I found a blog from Dr. Dawn Marcus on co-existing conditions that can occur with Migraines. It was this link in particular: http://migraine.com/blog/migraine-comorbidities-fibromyalgia/ That is when I started putting 2 and 2 together. Through the years I was developing Fibromyalgia because all the pieces started to fit together in a jigsaw puzzle. Slowly it dawned on me as I thought back all these past years as my health started to take a nosedive. The light bulb went off! Are the Migraines part of the FM. Is the non-stop neck and shoulder pain along with the back pain related to the Migraines or the FM?? I took this newly learned info to my new GP where blood tests were done to rule out Lupus, Lyme and Thyroid along w/a slew of other things and I passed my Tender Point Test-I had all but 1 that responded. But now that 1 that didn’t respond before has now been responding. Figures. This cartoon sums up my history thus far with doctors when I have to take them the information to be diagnosed:

Doctors

So I take Cymbalta and Lyrica along with my other Migraine preventives and abortive. We’re still in the experimenting stage and my next appointment with my Neurologist is this May 6th. This will be to the follow-up of the 2nd Botox treatment for Migraines I had on April 16 2013. I got major eyebrow issues and eye dropping from this session that I did not get before. Still having the Migraines but was told can take a min of 3 wks to kick in and up to 4 wks to see results if it’s going to work. So on this coming Monday I will find out if we yet again change medications as it’s been 3 months on Cymbalta and Lyrica-at the same dose I started. I think it’s time to change it up again as the Lyrica doesn’t seem to be helping with the constant muscle spasms. That is a real bothersome pain and prevents me from doing a lot of lifting and a lot of the exercises I want to do.

But I will still continue to experiment with items I find online on my own or as suggestions by a great online support group I have acured over the past few months. I keep searching for pain relieving gels and liniments, pillows (just now got a buckwheat pillow and so far neck not hurting as bad but jury still out as I will not rate it yet) my bed of nails for at home Acupuncture treatments, my Breo-eye massager. I have yet to find a really dark pair of sunglasses for outdoor use. I’m trying to do Gentle Yoga but the poses you get on your toes sends my feet into major cramping and spasing. I have learned to be more organized in my Migraine Rescue Regimen. I put together a large kit on my bedside table with everything I need during a major Migraine attack. I have that featured on an earlier blog. I then decided I had better duplicate that kit in a smaller scale and carry with me in my purse because I’d borrow a med from my kit to take with and forget to return it or visa versa. It’s a bad, bad situation to be stuck out away from home and needing your abortive and pain management meds. So I have learned how to organize and streamline that to make things easier for me. Well, as easy as they can get.

Through therapy I have learned to be more calm and at peace with myself and my disease. To be angry, bitter, resentful and upset makes more stress which in turn makes muscles stiffer and does add more to the chronic pain. I lean more on Meditation and prayer to see me through the rough spots and my meditation music. I’ve made my bedroom my fortress-where I can seclude myself and be in the dark and quiet with most everything I need. I only need to leave to refresh and Ice pack or reheat a heating pad. Those Bed Buddies and those Bed Buddy Booties are great but don’t stay hot for long. I like to share new ideas and tips when I come across them and I just love getting ideas in return because I’ve said before and I will say it again-I’m always willing to try something new and see if it helps. And I owe a lot to Teri Robert, Diana Lee, Dr. Marcus, Ellen-all those on Migraine.com and the fellow sufferer’s I’ve encountered as well as to my FB support group CMA-Chronic Migraine Awareness and The Coolest Fibro Chicks around town for Support and Love. Without all those wonderful outstanding members on all these groups I’d be lost. Social Media does play a key role in Chronic Illness. I wish I had it to have tapped into it earlier in my disease but better now than never. Always try to stay positive. That is my goal and to get well. I also plan to connect with as many as I can that suffer the same as I do. If I can help ONE person it’s worthwhile.

I hope this answers everyone’s questions about me. If you have anymore please feel free to ask. You can also go to my FB page and post a question as well. I do have Twitter and I don’t know why I’m having so much trouble with it. I try to update to get current tweets and it crashes. I reload it and try again and it still crashes. I’m trying to get to the bottom of that so in the meantime if you send me tweets and I don’t respond right away that is why-technical or user error problems. But I will get to the bottom of it. Again I apologize if there are any spelling errors that irritate any of you. I am using the Word Press spell check and it is not as good as Microsoft Office but this is all I have to work with. And I cannot yet afford to add media to this site. In the late fall when I upgrade this site I will be able to do so then, but I cannot do so now and I hope you understand why.

Until next time praying you all have a Blessed and pain-free day. Julie

Encouraging-Quotes

I just don’t get it! (update 5-4-13)


Homer Confused

The more I think of it the more confused I get. Why is Migraine Disease to Stigmatized and why is it not recognized as a the Chronic Disabling Disease that it is? Those of us that suffer this horrible disease know all too well how it affects the mind and the body and how it attacks every fiber of our being. Living with migraine is a challenge, to say the least, and to get others to recognize it as more than “just a headache” is even more of a challenge to say the least. Migraines are rated in the top 20 most disabling diseases in the world and it’s been described as more crippling than having a broken bone. But yet “healthy” people still ignore the statistics and demoralize the illness as being trivial and all in one’s head. Well, it starts in the head but it does affect every part of a person’s body. The pain and suffering people experience with this disease can and has led to cases of people committing suicide because it is too much to cope with-the pain, the stigma and the lack of emotional support from those who are closest to them-spouses, siblings, parents, friends and other loved ones. The isolation alone is enough to drive a person over the edge and then top it with what Migraine does to a person and it’s no wonder that Severe Depression is also a contributing factor. But yet Migraine Disease remains to this day a trivial and non-issue to the public as a whole. A lot has to do with the commercialization of OTC medications that tout being able to stop and cure your migraines. Well, if it were that easy don’t you think we’d all be storming the stores and buying this junk up like crazy? It may work for mild headaches that are brought on by tension and stress, but Chronic Migraine is a complex and neurological disease that to this date is still not fully understood by the medical community. And treatment for Migraines consists of second-hand or “off label” use of many prescription medications that were originally designed for dementia, Alzheimer’s, cancer, blood pressure, seizures, depression, bi-polar-just to name a few. There are no Migraine drug specific medications designed solely for Migraines as preventives.

How does Migraine affect the body you may ask. Here are just a few examples of what a Migraine Attack does to a person as a whole in the 3 stages of a Migraine Attack:

Phase 1-Prodrome:

  • Temporary vision changes that usually go away after 30 minutes (but not always)
  • Temporary loss of vision in left eye or right eye, usually one spot or on one side
  • Temporary blurry vision
  • Seeing bright spots
  • Seeing floating lines
  • Seeing shimmering, colored or flickering lights
  • Seeing zigzagged lines or different patterns
  • Changes often occur in just one eye
  • On very rare occasions, the vision change is permanent
  • aphasia: difficulty finding words and/or speaking coherent sentences
  • constipation or diarrhea (IBS flare ups are common)
  • difficulty concentrating and remembering
  • excessive yawning or sudden fatigue
  • food cravings and insatiable appetite
  • hyperactivity
  • increased frequency of urination
  • mood changes — feeling depressed, irritable, etc.
  • neck pain
  • sleepiness

Phase 2-Aura:

  • Alice in Wonderland Syndrome: a rare form of Migraine aura where the distinctive symptom is a type of metamorphosing, a distortion of body image and perspective, which Migraineurs know, while it’s occurring is not real. “Alice in Wonderland” syndrome can occur at any age, but it is more commonly experienced by children.
  • allodynia: hypersensitivity to feel and touch  to the point that what would be “normal” is painful
  • aphasia
  • auditory hallucinations: hearing sounds that aren’t actually present
  • confusion
  • decrease in or loss of hearing
  • increased sensitivity to hearing-unable to tolerate loud sounds
  • dizziness, clumsiness, unsteady on ones feet-running into things or falling down
  • hemiplegia: one-sided paralysis (occurs in hemiplegia Migraine only)
  • olfactory hallucinations: smelling odors that are not present
  • being more sensitive to odors that are present
  • one-sided motor weakness (occurs in hemiplegia Migraine only)
  • paresthesia: prickling, stinging, burning, numbness, and / or tingling, usually of the extremities or face
  • vertigo: sensation of whirling or spinning, not to be confused with dizziness
  • wavy lines (sometimes described as “looking like heat rising from pavement”)
  • “blank” or tiny blind spots
  • blurry vision
  • partial loss of sight
  • increased sensitivity to light-especially fluorescent lights and bright sunshine
  • unable to tolerate fast movements made on a movie or TV screen
  • phosphenes: brief flashes of light that streak across the visual field
      • scotoma: an area of decreased or lost vision. Some people describe scotoma as being like having tiny blank spots in their vision. Some compare it to tiny snowflakes.
      • unilateral (one-sided) (occurs in retinal Migraine only)

Phase 3-Migraine Attack:

  • headache
  • frequently unilateral (one-sided). The headache can shift from one side to the other, become bilateral (on both sides), or be bilateral entirely
  • often pulsating or throbbing
  • worsened by physical activity
  • duration of four to 72 hours in adults, one to 72 hours in children
  • Because the trigeminal nerve becomes inflamed during a Migraine, and because of its location, pain may occur around eyes, in the sinus area, and the teeth and jaw.
  • confusion
  • dehydration
  • dizziness
  • depression, anxiety, panic
  • diarrhea or constipation
  • fluid retention
  • hot flashes and / or chills
  • nasal congestion and / or runny nose
  • nausea and / or vomiting-or dry heaving
  • neck pain radiates to shoulders and upper back
  • osmophobia-heighted sensitivity to odors
  • phonophobia-heighted sensitivity to sound
  • photophobia-heighted sensitivity to light
  • vertigo
  • intense stabbing behind one eye (occipital Migraines) radiates to temple. Occurs on one side only

Phase 4-Postdrome, or the “Hangover”

  • fatigue
  • lowered intellect levels
  • lowered mood levels, especially depression, or feelings of well-being and euphoria
  • poor concentration and comprehension-may still have trouble finding words or making coherent sentences.

(Reference material obtained by Migraine.com)

Some migraine symptoms mimic the signs of stroke. That is why it’s vitally important that all Migrainers keep a Migraine Diary and know the pattern of their Migraines. Any Migraines lasting over 3 days is considered a Medical Emergency if the Migrainer hasn’t experienced a Migraine Pattern like that before, and immediate medical attention is required. Migraines can be life threatening as they have in the past caused a Migraineous Stroke in otherwise healthy people.

Chronic Migraines are classified when Migraines occur more than 15 times a month and aggressive preventive as well as abortive medications are sought after and applied to the Migraine Sufferers regimen. Chronic Migraine is diagnosed when the following criteria are met:

Has at least two of the following symptoms:

1. unilateral location

2. pulsating quality

3. moderate or severe pain intensity

4. aggravation by or causing avoidance of routine physical activity (e.g. walking or climbing stairs

And at least one of the following

1.  nausea and/or vomiting

2. photophobia and phonophobia

Treated and relieved by Triptans or ergot for at least 8 of the Migraines per month.

Here is quote direct from Migraine.com stating the impact of Chronic Migraine Disease

The burden and impact of chronic Migraine

Studies have revealed data about Chronic Migraine and the difference in the impact of Chronic Migraine when compared to that of episodic Migraine (EM):

  • Based on the MIDAS questionnaire (The Migraine Disability Assessment Test), the impact of Chronic Migraine is significantly greater than that of episodic Migraine EM.
  • Over a three-month period:5
    • 8.2% of those with Chronic Migraine reported missing at least five days of work as compared to 2.2% of those with EM.
    • 33.8% of those with Chronic Migraine reported at least five days of reduced productivity at work as compared to 2.2% of those with EM.
    • 58.1% of those with Chronic Migraine reported at least five days of reduced productivity in household work as compared to 18.2% of those with EM.
    • 36.9% of those with Chronic Migraine reported at least five days of missed family activities as compared to 9.5% of those with EM.

Chronic Migraine and stigma

In a study designed to “characterize stigma in patients with chronic and episodic Migraines, researchers found:6

  • Participants with Chronic Migraine scored higher on the Stigma Scale for Chronic Illness scale (SSCI) than participants with EM.
  • Participants with Chronic Migraine also scored significantly higher on the SSCI than a mixed panel of patients with chronic neurologic diseases; stroke, epilepsy, multiple sclerosis, Alzheimer’s, ALS and Parkinson’s disease.

The more I think the more confused I getSo given the facts and statistics of the impact of Migraine on the sufferer and on the economy I’m still confused as to why people just don’t get it? People see us suffering and so ill we can barely walk or talk right, and when we cannot tolerate light, noise or smell and cannot keep food down, yet they question that this is a real illness? These are the same people that don’t question the validity of a cancer patients illness when undergoing chemo and radiation and the effects it has on them. You sure don’t see people barking at those patients telling them to get out of bed and stop lying around all day and get a job, now do you? You don’t see cancer patients or quadrapaligics being bombarded with requests to do this or that, to get outside and they will feel better, or if you exercise you will feel better. You don’t hear people telling them to stop taking all their meds because it’s not making them feel better fast enough to meet the others expectations now do you? They see us at our worse and knowing full well we feel bad we cannot participate, but yet they continue to guilt us. I just don’t get it. Do you? Do you see them being told to “snap out of it” or “it’s all in your head”? Well heck no. Cancer is an Invisible Illness but it gets a lot more respect than Migraine Disease. Migraines can be more painful and debilitating than Cancer, not to downplay the seriousness of Cancer, but a lot of people recover from Cancer. There is as yet no cure for Migraines so the Migraine Sufferer continues to be in chronic, debilitating pain and with no empathy, respect nor validation from the public that it is indeed a true disease. And then you wonder why we suffer such severe Depression and repressed anger towards those who don’t get it and don’t want to get it. I just don’t get it-why people act this way. And if you do offer words of encouragement to a Migrainer I’d see this post first on what NOT to say: http://ohwhatapain.wordpress.com/2013/05/01/what-not-to-say-to-someone-in-chronic-pain/comment-page-1/#comment-825

I told you to stop bothering me-frustrated kid in bed

We go to any and all doctors imaginable to seek help, to seek adequate treatment. Some of us run into brick walls as there are not that many well-educated doctors well versed in the treatment and prevention of Migraine Disease. More and more lately patients are being “under-medicated” making their Migraine attacks worse by prolonging them and as a result increasing the pain and suffering of the patient. We the patient have to go online and search out the latest treatments and therapies and take them to our doctor to be given a new potential Migraine therapy regimen because the doctor hasn’t tried it or know of it.

Doctors

The insurance companies restrict our Migraine Medications and limiting to what we can get monthly through our insurance, totally overriding a Doctors express written prescriptions when we are prescribed the right amount of medication, and that too results in more Migraines because we’re not allowed to have our allotted prescribed dose because the Insurance Companies are now into the act of playing doctor. Or rather playing God to where we have to have our doctors contact them and plead our case so that the Insurance Companies can “consider” increasing our monthly rations of much-needed medications.

frustrated-faceI get so riled up when I hear of a fellow Migraine sufferer being treated as a drug addict or drug seeker! It makes me want to go ballistic! This is a chronic on-going pain condition, and pain needs to be treated with medication, and OTC medications don’t cut it for us who have Chronic Migraine Disease. We are being constantly experimented on with a mix of different cocktails to see what will work. We have to give it a 3-month time frame for a medication to reach its highest potential to see if it will prevent or reduce the frequency and intensity of the Migraine attacks. If that med doesn’t work it’s on to the next. It can take up to 25-30 years to find drugs that work because there are thousands of “off-label” medications that can be tried as preventives. As for the abortive medications they can become more complicated. For some people Triptans are life-threatening and they cannot be used. So here is where the Opiates come into play. And these medications are used as a last resort because of their addictive shall we say “history”. NOT ALL MIGRAINE PATIENTS ABUSE THEIR MEDICATIONS! Migraine patients know all too well if they use their medication too often and too frequently they will get caught in the “Rebound Migraine” syndrome in which it will take a course or 2 of steroids to break the cycle. But they also know if they overuse the Opiates that they will become addicted, so therefore they are only used when needed. This is where some uneducated doctors and those in the Emergency Room see that when a Chronic Migraine patient comes in for intervention because their medications have not worked and they are in excruciating pain and suffering, many are treated with disrespect as well as treated as drug seekers and get poor if any care. This is where Depression grows by leaps and bounds and can add to the risk of suicide when a chronic pain patient is not taken seriously nor treated correctly and with respect. This will rebound into a vicious cycle-the Migraine sufferer not taken serious by family, friends, loved ones, co-workers and the Medical profession and therefore leads the Migrainer into a deeper Depression that can and often does spiral out of control and if no intervention is enacted it can and has led to tragic consequences.

http://ohwhatapain.wordpress.com/being-treated-like-an-addict/

crying-tearsDepression and Chronic Pain go hand in hand. And it’s not just those who suffer Chronic Migraine that know this all too well. This goes for those who suffer PTSD, Fibromyalgia, Chronic Fatigue Syndrome, Aids, Lupus, Autoimmune Disorder-just to name a couple as there are so many “Invisible Chronic Illnesses'” to list. Depression has been widely stigmatized due to the recent tragic events in Sandy Hook and Colorado. But not all Depressed people go on random killing spree’s. Instead they harbor these feelings inside, they repress them as to not embarrass family, and they end up taking it out on themselves. Sometimes with tragic consequences-they take their own life as they feel they are not valued and not taken seriously.http://www.foxnews.com/health/2012/03/23/severe-headaches-tied-to-suicide-attempts/    http://www.usatoday.com/story/news/nation/2012/10/03/migraine-headaches-sufferers-therapies/1609505/It was estimated that in the year 2012 that up to 70% of suicides were a result from chronic pain. http://www.surgeongeneral.gov/library/reports/national-strategy-suicide-prevention/full-report.pdf The Human Psyche can be very vulnerable when it’s constantly under attack and there is no escape route that they can see but the ultimate one made by too many people.http://www.healthcentral.com/chronic-pain/c/5949/130560/fibromyalgia/ Suicide is on the rise and people need to wake up and see this as a serious Disease and stop Stigmatizing people. Suicide rate has risen for our veterans who come back and feeling out-of-place and often misplaced and they oftentimes suffer PTSD. They are not being treated properly and a lot as a result commit suicide. According to US News the Rate of suicide for military personnel for 2012 hit a record high-349. During 2012, there also were 60 suicides among active-duty members of the Navy, 59 in the Air Force and 48 in the Marine Corps. Throughout the U.S. military, suicides increased by nearly 16 percent from 2011 to 2012, figures show. The Department of Defense has been issuing annual reports that track suicides since 2008, said spokeswoman Cynthia O. Smith. Only 176 (which is 1 too many) died in active service-combat. http://usnews.nbcnews.com/_news/2013/01/14/16510852-military-suicide-rate-hit-record-high-in-2012?lite

crying and anguished faceChronic Pain is no laughing matter. It’s not to be taken lightly nor disregarded or disrespected. Given all this evidence I still have to shake my head in bewilderment and say again “I DON’T GET IT” and why don’t people get it! The public needs to wake up and recognize that not all Chronic Pain Illnesses need to be VISIBLE and to stop stigmatizing these diseases and treat the sufferers with respect and better treatment plans. Doctors need to be better educated in long-term Chronic Pain Management so we can benefit from less pain and lead a more productive life. I belong to a couple of Chronic Pain Support Groups on FB: CMA-Chronic Migraine Awareness and The Coolest Fibro Chicks Around Town. I also follow several blogs and websites where everyone has the same chief complaint-they are not taken seriously, they are not treated properly, they are scorned, disrespected, demoralized, dehumanized, stigmatized and in a lot of pain both physically and emotionally as a result. They are cast aside by loved ones, family and friends who chose not to understand or just don’t get it. I just don’t get it when you try to educate those around you to what is going on all it does is go in one ear and out the other! It’s so frustrating to talk to a brick wall-it bounces off and smacks you right in the face as a result. Your then labeled a whiner, a crier, a complainer and lazy. Totally inexcusable way to treat another human being. It makes me want to pull my hair out. We already feel bad enough as it is-with the pain and all the symptoms that go with it, and we lose friends as a result, we are often left isolated, abandoned and beyond misunderstood. We want to contribute to society and be productive. We want to attend family functions and not have to cancel. We want to go on family vacations, family gatherings, on shopping spree’s and have parties and go to parties. We want to do all this and more but for reasons beyond our control we are stuck in bodies that are Chronically Ill and we fight it for all we’re worth and sometimes it’s a losing battle. WHY WON’T PEOPLE LISTEN TO US AND UNDERSTAND US? I JUST DON’T GET IT.

Frustrated_girl1All we ask is what others give freely to those who are not ill: To be treated w/empathy, kindness, respect, understanding and to LISTEN to us and try to understand what is going on in our life and what is going on. Stop standing on the sidelines and judge us-jump in and help us. Even a small gesture like lending a shoulder or an eye can have amazing results. And to offer to do something without being asked like picking up something on your errands, offering to refresh an ice pack, or bringing a fresh glass of water to keep us hydrated w/o being asked, or reheating a heating pad, picking up after yourself as to not add to the burden, dividing up household chores when the ill person is down and out for a while until they get better, offering to cook a meal and bring it over. There are many things you can do to help out those who are Chronically Ill. But the most important thing would be to understand and not to belittle, criticize or ostracize the person and treat them as a leper and an outcast. We as humans need to have love, nurturing and understanding. And don’t bark orders at us like we’re healthy and expect us to do everything you can do and more because it’s just not possible-not without a high price to pay-more pain.

http://ohwhatapain.wordpress.com/pain-is-not-pretty/

sad20face puppyCall me crazy but I thought to attempt to put out an article explaining things a little better from a patients perspective might have some impact on regular people-that is if they read this blog. Those who suffer as I do will just nod their head in agreement, at least I think so, and they will say “been there, done that, I’m right there with you”. If everyone makes an attempt to better understand those who are chronically ill and come to a better understanding then maybe we can have a harmonious life, or at least be a little more compatible and hospitable towards each other. We don’t need to dehumanize people as that is not the way we were intended to treat our fellow humankind. We are to be loving, gentle, accepting and accommodating, Can we please try to be that way for the betterment of not just the Chronically Ill, but for all mankind in general. And PLEASE stop judging people. Learn to walk a mile in their shoes if needed to get a grip on reality. On the reality of a person who suffers Chronic Pain on a daily basis that is.

happy_faces dog and babyI want to get along with others and be happy when I’m not in excruciating pain. And I will NOT stop fighting these Diseases and I will continue to work with my doctors for better treatments. Until a cure is found, if there is that is, I want to be treated with love and respect. I don’t think that is asking too much. Do you? Don’t you want to be treated the same way as well? We’d all be so much happier wouldn’t we?

In closing I pray for more pain-free days for us-the Chronically Ill and I pray for more tolerance and understanding. Peace and Blessings to you all.

Julie

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Update 5-4-13

 

This is not intended as a Medical site and this does not constitute Medical Advice in any shape or form.

Please consult your family doctor or a medical professional if you or a loved one is going through Chronic Pain and Illness and is showing signs of Clinical or Severe Depression so that they may get the appropriate treatment needed. Speaking from personal experience, when you enter the deep dark abyss of Depression it’s hard to get out on your own. You need help if not by way of Clergy by qualified Therapists who can help you navigate your pain management strategies and therapies. I have been fortunate to have had an intervention not once but twice by a dearly loved close personal friend. On the 2nd time I was so low I needed drastic Medical and therapeutic intervention. If it was not for the intervention of that dear friend I would probably be 6ft under pushing up daisies. Depression is not to be taken lightly nor to be ignored. Those who are in the deep throes of it usually cannot recognize nor want to, the deep trouble they are in and the slippery slope they are trying to navigate alone. DO NOT let this happen.

An do not trivialize the importance of online support. I have met MANY amazing people online who have been a true blessing and a Godsend. I have made many a good friend. I support those that need it and when I’m down I get the support in return. I wish I had turned to online support groups sooner, but better now than never. Thank you to all my online supporters-you are indeed amazing.

God Bless you all.

With much Love, Hugs and Prayers, Julie

People in the ICI Community need to be more supportive and less judgmental of fellow sufferers


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I was dismayed, sad and shocked by recent posts in the Invisible Chronic Illness Community bashing, criticizing and cussing out another in the community that found a way out for “himself” and he posted and shared his experience because he was finally able to break free from the vicious pain cycle and find happiness. I thought in this community and in the midst of all this blogging we were to share our experiences w/o fear of repercussion from another in the same category. I thought we were to be supportive of one another and encourage each other on, and then rejoice if someone has a breakthrough and feels better. I’m shocked at the lack of support I found. If a person was diagnosed with cancer and then was found to be in remission and for the time being considered “cured” that person would be ecstatic and that person’s supporters and other cancer victims would cheer that person on now that they don’t have to fear cancer anymore. Cancer is an Invisible Illness and often misunderstood and stigmatized as well. So when a fellow Migraine sufferer finds a way out of the dark tunnel we bash him? That would be like telling the cancer survivor “you don’t deserve to be better and happy-suffer with the rest of us and be ill!” Now I’m sure if you all sit back and think about it you would agree-we would not wish for a cancer sufferer to regain their cancer, so why would we want a Migraine sufferer to continue to suffer?

I have blogged about my 25 year journey with Migraines and how in May 2010 they progressed to daily intractable Migraines for no apparent reason, and I was not misusing my medications either. My panic attacks also got out of control as well as the Deep Depression I was in over the years long battle with what I then called the Migraine Curse and then everything else piled up on top. I felt like I was drowning in a deep dark abyss of pain and suffering. I had heart surgery Sept 11, 2009 for my long battle with an arrhythmia problem called SVT and by May 2010 I felt my whole world was caving in because one thing after another seemed to go wrong. I was battling Hypoglycemia and non-stop pain. I don’t have to tell all you Migraine sufferers out there how debilitating a Migraine is. You know all too well. But to recount my spells I can have them for 2-3 days at a time, get barely a break for a day and here comes another cycle. I have bad Aura’s prior and during an attack. I’ll  get a partial blind spot in 1 eye and very dizzy and easily confused and lose my balance often. I was already clumsy to begin with but the balance issue just gets worse with a Migraine attack. I get those lovey Icepick Migraines which I renamed Jackhammer Migraines-the stabbing pain behind and in the eyeball was so intense I’d think it would fall out if I bent over, or actually the pressure increased when I did bend over. I think whoever penned the name Icepick never had one in his/her life or they would not have labeled it with such a lame term. That temple on the same side hurts like heck and the skin will be sore to the touch all over my scalp. In fact after I get one of these Migraines I cannot not wash my hair until the pain subsides and even then it’s often too sore to wash-my scalp has always remained tender and sore to the touch and I’d lose more hair than I would have normally pre-2010. If I come into contact with anything artificially scented-someone wearing cologne, scented lotion, hairspray, cleaning supplies, candles, soaps-it will set me off. I am so hypersensitive to smells. Even the smell of Bacon is evil and I cannot tolerate it, but still my husband and daughter love for me to cook bacon, and I suffer afterwards.

I get very nauseous as a result and sometimes if I didn’t hurl into the porcelain throne I’d dry heave, which is worse than the actually vomiting. And I will often get chills or break out in a clammy sweat-it all depends I guess on how my internal thermometer wants to operate on any given day. If I get chills they seem to be deep to the bone and I put on my electric blanket for a couple of hours before I will stop shivering, yet my skin would feel normal if my husband or daughter would touch my forehead. Explain that phenomenon if you can. I cannot tolerate bright light or those artificial fluorescent lights. My husband will come home from work and complain the house is always dark because I live like a vampire-the curtains and shades will be closed and I will not turn a table lamp on unless I absolutely have to and I make sure it’s not too close to me. I have yet to find a dark enough pair of sunglasses to block the sun, that is how much the bright light hurts my eyes and adds to the pain. I cannot watch TV for long or read a good book, oh how I miss reading my books, because of the constant pain, the lack of visual focus and the side effects of the migraines is that I cannot comprehend what I’m reading most of the time because the confusion sets in. I have a ton of books and I love to re-read them but I have a lot of new ones I cannot even crack open and start and it’s like they are just begging me to pick them up, and I so miss my reading. I cannot stay on the computer long because the screen glare (even with the additional anti-glare applied to it) makes my eyes water, burn and adds still to the pain. How I’d love to go to the Movies when a new one comes out-but the noise and the moving screen would be too much. At home I can walk away every 5-10 minutes to recover and come back.

I turned my bedroom into a dark cavern I call my Fortress. Window darkening blinds, cark foam backed curtains, dark walls, dark floor, dark sheets-everything dark. My husband is not too happy it’s so dark but that one room is my Fortress-to slink away, curl up in bed with my ice packs and heating pads, turn on the fan and ride out the storm. I have my Migraine Survivalist Kit on my bedside table. A kit I put together over the past couple of years based on what I found were my essential needs during an attack to make it easier on me, and some various tips from other bloggers. So I only have to get out of bed to go to the bathroom or get more ice packs-everything else is within arms reach. I have an emergency kit in my purse for when I got out with my rescue meds and Migraine essentials. It makes my purse weight a ton and it’s a burden and my husband always loves to rag me about my “suitcase” but hey, I’m prepared.

And the noise. When I’m home alone during the day the TV is off! But when my husband and daughter come home the 1st thing they do is turn it on and ramp up the volume like they are deaf. OUCH! When I can get control of the remote (yep, good luck on that one) I will turn it down. Way down. When I use my iPod for meditation with my soothing meditation and Binaural Beats tones to relax and meditate during the pain I have it turned as low as possible where I can barely hear it. But then when my husband drags me out to his “playhouse” which is the Pole Barn to help him with his car project the noise is horrific and I must wear those noise reduction ear muffs. But the sound still comes through them. In the house when someone comes to the door the dogs bark like crazy and the one will howl like he’s on the hunt (he has Beagle in him) so imagine hearing that when your head is in excruciating pain along with everything else. Or when a major project is going on in the house and the spouse rips out the saws, electric drills, mini-compact air compressor, nail gun-HORENDOUS!! And then he likes to think I’m part male with as much testosterone as he and haul a monstrous humongous frig through the front door that barely fit through the doorway! Just to name one of many, many times I’ve been called upon during my Migraine pain the tasks to help him perform! But I’m not allowed to say “no” because he has no one else that can help him and then he rampages and goes on a tirade. Best to tough it out and suffer more later.

So I know all too well what goes into having Migraine Disease. And I was in such a dark hole of despair, anger and resentment I seriously considered ending it all. Yep, I actually considered suicide. Not once, or twice but a few times. My best friend intervened twice to stop me. The other times I  just chickened out and could not go through with it. But I was in the planning stages the other two times and I was so close to going through with it and I think that is why I told my friend so she could intervene and stop me. I was in such a dark hole of despair and thought I wanted to die to get away from it all, but deep down inside a voice told me NO. So that is why I believe I told my friend, so she could stop me.

That was a turning point for me. I realized that I had become so unhappy, bitter, angry, resentful, sad, lonely, lost, isolated and I blamed everyone including myself-even though I was doing everything right by avoiding all my triggers, trying to eat right, exercise and follow my doctors instructions and to not over-medicate to get caught in the rebound cycle. I was in such despair and mad at the world. I’d hear people make friendly suggestions to me on what they read or saw and I would blow up-I was so angry because I had done so much research all these years to learn what I could and even take info I found to the doctors to try out. I would think they were criticizing me for not doing enough when I was already doing more than my fare share. For someone to give me advice on a book to read because they just saw it online, but I had the book already a few years prior to their suggestion and I’m like “hey, I know this stuff already, so tell me something I haven’t tried cause I’m already doing it all”. I’ve done holistic, natural remedies, diet elimination and raw foods along with vitamins, supplements, massage, biofeedback, chiropractic, cupping, meditation, acupuncture, acupressure-the list goes on and on what I’ve tried to get these blasted things under control. And that’s not counting the traditional medical approaches. I’ve been to Diamond Headache Clinic in Chicago Illinois. All they did was experiment on me with drugs like the other doctors out here were doing. After a year of driving into Chicago with no improvement I quit going there. The drive was too much for me and would trigger a bigger migraine because my schedule would be so disrupted. I tried Botox in Dec 2010 a month or 2 after it was approved for Migraines. The insurance denied it because they were trying to argue it was NOT approved, then I had to have the doctor submit detailed documentation it was medically necessary due to the severity and duration of the migraines and to state even at that time I’ve tried everything else to no avail. The insurance company still found a way to deny it stating it was not covered under “preventive protocol” in their handbook and guidelines. So my husband had to fork out the THEN #1,500.00 out of pocket for the full cost and paid it monthly. I will never hear the end of that from him! I had written pre-certification from the insurance it would be covered, then they don’t and deny it. I fought the insurance and appealed, they still denied after all the documentation was submitted and I even went through the Board of Indiana Insurance appeals and they sided with the insurance company, of course.

So that added to the stresses mounting up on my marriage. I was unemployed and getting temp disability at that time. My husband puts a lot of importance on money and when he had to fork over that amount it just put a bigger strain. He could not understand for one how bad the migraines were even though he saw me in bed with ice packs and in a pitch black room, and all the doctors I’d been seeing and the new medications to try. Even telling him how much pain I was in with all the other effects of the Migraine, and still he doesn’t get it. Then I’m not working which is a big no-no with him. He kept railing on me to get another job so I can contribute. It was a sin to him that I was not bringing in a regular paycheck. When I applied for SSD he was against it saying I’d never get it and basically implying I’m not that sick. Yes I was denied the 1st time because they do that to discourage people. They don’t want to pay out anything unless they have to. So I was told “I told you so” too many times to remember. I appealed my denial and got an attorney that deals with SSD appeals. He would not take payment unless I won. He worked hard on my case and gathered my long extensive list of medical records from all my doctors over the last several years. He said I had a good case. My spouse was still not supportive and still ragging on me to get a job and give up on the appeals. When I had my appeal hearing my best friend drove me because again I was not safe to drive myself. At the hearing my therapist showed up to testify on my behalf, she felt so strongly for me. I did win my appeal and got my back pay and my monthly benefit. All my hubby said was that I was “lucky”. So that is the support I’m dealing with while I’m going through this ordeal-no support from the spouse I have to get it from other sources.

I was hospitalized in August of 2012 for a week. That was my turning point. With intense therapy I realized I could not let my negative feelings rule my life as they were making me more miserable and contributing to the pain, stress and suffering I was enduring. I realized through counseling that how you perceive things in your mind and how you process them effects the body as well. So if I’m all stressed out and negative it adds additional stress to the body and therefore increases the pain because that is all I’m focusing on. I was so intent on focusing on the pain and how miserable I was that I blocked everything else out. No wonder people would not listen to me anymore. Who wants to listen to someone complain all the time and being negative about this and that! I couldn’t blame them when I stepped back and took a good long look at everything. I realized attitude is part of the problem, but not all of it. I started to journal and then blog and interact more with people online who are going through the same thing. I began to realize if I started being more positive about things in my life and learn to accept the fact there is no cure for Migraine Disease and let go of my anger, hate and resentment over it, and just learn to accept it and that all I can do is find ways of managing it better. If I would meditate more during the painful cycles it would distract my mind from the intense pain and I would not feel it as much as I would if I was tuned into that only and all the negativity surrounding it. Yes, Migraine Disease sucks. It’s horrible. It’s terrible. It’s a curse I would not put on another person. The side effects from the countless medications suck. The cost of the medications suck. Going to the doctor all the times sucks. But you know what, if you just learn to go with the flow and accept it you can go with the flow a little easier and be a better person to be around. So I focus on that-being a better person and going with the flow because I cannot change what I cannot change. If that sentence makes sense to you. Why vent and rant and get all tied up in a knot over something you cannot change or cure? At the end of 2012 I was diagnosed with FM and CFS. I was a little deflated at first and almost got into that mind-set again of “oh great, another curse”. But with the support of a network I set up of people who provide positive influence and positive feedback I got back on track again.

Now I’m in NO WAY preaching to people that you need to be more positive to “cure” Migraines. Heck no!!! I know there is no cure for one thing, and what works for me may not work for everyone else! I know that. I get that. I am only blogging about what works for ME and I am in NO WAY telling everyone out there that suffers with ICI MUST follow my thought process and my routine. NO. You can disagree with how I handle migraines or my thought process to make it through a bad cycle all you want to. It will not change the new way I’ve come to handle them. I found that for ME being positive and focusing on what I can do instead of what I can’t do is a big help. And I did use my positive reinforcements this past weekend when I had a horrible 3-day Migraine attack when I had to use my Imitrex Injections. I tapped into my friend “hotline” I call it for a moral boost and it helped. It didn’t take away my pain, but it helped me to battle through it with no anger, bitterness, resentment, malice or being mean. I stayed positive which is a day to day, hour by hour process. I have to be constantly conscious of it and work on it for it to work for me. And I state “work for me”, not a “work for everyone else”. I do not profess to be a doctor and have the answers for everyone but I can go by my own experience and what works for me. Period.

So if someone writes a post about how they found a way that works for them and that they found happiness in the middle the deep dark abyss, I am happy for them. I will not resort to being angry, bitter, resentful nor criticize them or curse them. If someone finds some kind of relief from this horrible pain I say “all the more power to you” and that will be it. And if I see a post that I don’t agree on I just pass it by and I don’t let it phase me because you know what? It’s not worth the extra energy your putting into bashing that person when you could be putting the energy into yourself. Now if I do come across a site that states “guaranteed cure” I will speak up because I know enough that a statement like that is a bunch of bunk! BS if you prefer. So I’m happy someone could find a way to be happy in spite of suffering from a horrible disease like Migraine. Yes, I know it’s a neurological disorder that has genetic factors to it. I had 2 parents that suffered from it years ago when there were no medications for Migraines. My sister suffers from it and has told of many terrible, horrific ER stories. Which in fact I’d rather roll around in my bathroom floor in extreme pain like this last weekend-a pain level 8-9 and deal with it on my own than go to an ER, thank you very much!

I feel sorry for those who are bitter and angry over someone that has found a way out. Someone who can be happy in spite of it all. I don’t envy the contempt this person is facing and which I might face as well after this post. But life goes on and you get out of it what you put into it. And for me I will put in positive attitude and deal with this my own way. I do not force anyone to read my blogs or agree with what I’m saying. But we can agree to disagree in an agreeable fashion. There is no need to curse or be vile over it. That is an attitude I cannot accept. That is nothing short of Cyber-Bullying. Have we stooped that low?

For that I will sign off wishing you all better health, peace, harmony and good will. Try to have as pain free a day as possible and I wish I could make it all go away for everyone, but that is not in my power. Instead sending you all good wishes to be Happy, Healthy and Be Well.

Julie

DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.

So

My tricks and tips for dealing with unexpected changes in day to day life due to Migraines


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First and foremost I make sure I stay hydrated each and every day by drinking a lot of water during and cut back on caffeine. Dehydration is a #1 cause of most migraines and if your dehydrated I found out personally it can take longer for your medication to kick in and take effect and compounding the situation. Other than that I have found the following my best way of trying to cope in a day to day basis that is so unpredictable:

I have a few tools that I use to keep ahead of the weather, as some of my migraines are weather related due to changes in the barometric pressure. On my iPod I have three go-to tools: Migraine Mate which will let me know if my risks for that day are elevated based on weather patterns due to my GPS location-I can add my pain rating and it will keep a Migraine Log that tracks your Pain vs. Temperature; Barometer which will give me the constantly changing pressure, temp and wind speed based also on my GPS location; and ecoHeadache paid version so I can customize with all my medications and alternative therapies-this is my migraine log and I can print a report to take to my doctor based on my documentations and settings. I downloaded those apps from Apple online store and they are very helpful in helping me keep track of migraines and triggers. On my cell phone I have a paid app through Google Play Store called My Pill Reminder: I have all my meds listed with the doses and times and it will sound an alarm that will not stop until I shut it off so that I do not forget to take my preventive meds on time. Missing doses or forgetting the times and not being on schedule is another big trigger for a Migraine to take root. You must take your meds on time and the same time every day and if you take the same med twice you enter it in twice and have the times set. The night before I have a pill box where I put my doses for the next day so I can have them ready when my timer goes off, that way there is no confusion and no forgotten pills.

With those techno tools I can try to keep ahead of any of those migraines that are weather created by taking my abortive at the 1st sign of an attack to hopefully prevent a devastating migraine. Along with watching the weather updates on TV there isn’t much more I think I can do in that department.

And then I make sure that my Migraine Survivalist Kit on by beside nightstand is replenished often-after each and every use. I will do an inventory and pre-fill any anticipated RX’s in advance regardless if I need them at that moment or not. It’s best to have them on hand so that I do not run the risk of running out in the middle of an attack, which would be a nightmare and unimaginable.  I also ordered a couple of those old fashioned ice caps, the kind my mother use to have years and years ago. The bag you fill with ice cubes and it has a screw on cap and the outside of the bag is cloth covered so you don’t have to use a hand towel with it. I found these last longer than the gel filled and cost around $6.00 to $10.00 depending on where you buy them. I got mine on Amazon for about $7.00 each. Any freezer gel packs I have I will often check to make sure they have not developed a leak. After repeated use of thawing and being refrozen the plastic weakens over time and I have had some of the gel ooze out and get on my dark navy sheets. Plus with a dog around I’m sure it’s toxic and I won’t have to worry about my dog getting into it 1st If I don’t catch it in time.

If I try to make any plans with friend or family I always leave an opening in advance. I will tell them I’d love to have them over or go with them, but I forewarn them that if I get a Migraine that will prevent me from participating to not get upset and be prepared if I have to call or tell them I cannot make it the day of so that they are not caught unprepared. I know no one likes to be cancelled on last minute, but my family and remaining friends have known me long enough and know what I go through and they have learned to expect a possible last minute no-show. Family might get a little upset but friends are more understanding. So on that point I try to maintain and keep open lines of communication with everyone I relate to on a day to day basis and keep them informed of medication and therapy changes as that can play a role as well. Communication is key.

When I actually do get to make it out of the house, I have learned to carry a couple of pairs of ear plugs in case I end up in an environment that is too loud since I’m really sensitive to loud noise. I have also learned to carry with me at all times, regardless of the weather, my sunglasses because I can even use them indoors under that terrible florescent lighting. I might get some odd looks if I use them but it’s to my advantage and not those passer-bys. I always make sure I have back-up medications with me as well and even have a pair of my Sumatriptan injections w/alcohol swabs just in case. In my cosmetic bag that’s been changed to my medication bag I also carry a printout of my current medications, OTC supplements, current doctor information and contact information-just in case an accident should happen it’s in print so that there is no lack of communication or confusion when the occasion occurs. In an emergency who can remember the names of the meds, doses and all their OTC items-or those of their doctors contact info or who to contact in case of an emergency? I sure couldn’t. I also carry a mini tablet and a couple of pens to document when I take meds away from home along w/a few short notes so that I don’t lose track of that information. And I will have my mints as well that will soothe my stomach and a pair of Sea Bands for the nausea if it should hit me all of a sudden. And I do a last minute check before I go anywhere that I have my driver’s license and insurance cards and a method of payment in case I end up in the ER to pay the co-pay, so my checkbook or debit card is always with me as well. I’ll have some portable wet wipes with me as well, just in case……….

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(My cosmetic case that I have made my Travel Migraine Emergency Rescue Kit)

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(As you can see it’s stuffed to over capacity w/anything I can think I’d need away from home to abort a Migraine)

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(These are the essential items as I had listed them out for display-a duplicate set of my backup abortive meds and the rest-medical info printout, etc)

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(My billfold clutch that contains checkbook, coin and paper money along w/ID’s, insurance card, medic alert card and debit card & store discount cards)

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(Once this items are loaded into what I once thought was a good sized purse it’s bursting and any extra room for anything is pretty sparse)

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(I add my sunglasses and by the time I’d put my eyeglass case and cell phone in there I can barely zip it up. I guess it’s time for purse shopping, UGH)

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(The front zipper pocket barely has room for lip balm and house keys. I hate to purse shop because I’m so picky about what I get)

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(this is my new purse, or should I say “suitcase” to carry my On the Road Migraine Kit. I’m already catching jibes about it-hey Julie, couldn’t you have picked out something a little bigger-sarcasm abounds. I’m not too happy w/it myself but I need the size and it’s leather and it was under $30.00. Sold)

I make sure my cell phone is always on a full charge and I have my contacts phone number information updated. I have my most important ones set on speed dial and I love the feature where I can put my important contacts as a direct dial app on my home screen, so then I just click on their picture and it will automatically dial them up. That would be a great life saver when you can’t think of a name off hand-you turn on your phone and your screen lights up, you see a picture of a face and you select that picture and it direct dials. Because oftentimes when a migraine strikes confusion sets in and you cannot think too clearly, so this is a good tool I like to use even at home. Technology is so amazing this day and age we need to take advantage of every tool as well as the tricks learned on these amazing devices to our advantage. And I make sure in my phone settings I have my GPS turned on so that it’s track able.

If I leave the house I will always let someone, spouse, daughter, and friend-know where I’m going and what route if possible. And I’m learning that I need to take the GPS with me so that in case if I get confused if a migraine hits and I cannot find an alternate way home, that I will not get lost and if I have to call someone for help the GPS will show where I’m at. In the past when I’d get lost on my way home I’d call and I’d be embarrassed to say I didn’t know where I was for sure. That is just not a safe place to be-it’s terrifying and could be life threatening if something else should happen like if you get too dizzy to drive or your vision gets too obstructed w/an aura. When you’re out on your own a GPS device and a cell phone are a must have. And if you think you may be gone longer that a couple of hours take along a cell phone battery charger that plugs into the cigarette lighter. And make sure someone checks out in advance the cigarette lighter actually works so that you know you can use it if your battery runs down. You don’t want to be stuck out away from home with a dead battery. And I make sure I have a bottle of water to stay hydrated and of course in case I need to take pills.  And I try to concentrate on staying focused, calm and not to panic.

If I get a migraine at home and need the quiet and silence I will put a sign on my front door that will state a Migraine is in process and please do not disturb. Many people have been very courteous and have not knocked or rung that God awful doorbell when I put that sign out. So that is a good way to deter unexpected would-be guests or solicitors when you’re in a not so hostess friendly mode. And if I’m home I retreat to my bedroom that I have made a dark and quite fortress, I will shut off the ringer to the phone, turn on the fan for white noise and use my iPod with meditation music and have turned down low, and I now have an aromatherapy humidifier on my side of the headboard w/soothing essential oils to calm and soothe me.

My Comforting Blend Recipe:

5 drops Lavender Essential Oil
5 drops Ylang Ylang Essential Oil
4 drops Clary Sage Essential Oil
4 drops Tangerine Essential Oil
2 drops Vetiver Essential Oil
2 drops Frankincense Essential Oil
1 drop Marjoram Essential Oil
1 drop Sandalwood Essential Oil
1 drop Myrrh Essential Oil

I combine these oils in a European dropper bottle and keep in a dark, dry cool place-my bedside stand drawer. I will add 8-10 drops in my diffuser because it can take that amount. Some diffusers take less and some might take more. But I found that the pure unadulterated essential oils do not irritate nor do they trigger a migraine. Only the commercialized, manufactured scented items will trigger me. This will not abort my migraine but it will soothe, comfort and relax me so that I can better endure and ride it out.

All the essential oils I use are pure therapeutic oils. They are not pre-blended nor are they perfumed oils-those would trigger a migraine, so stay away from perfumed oils.

(I will carry a small vial of pure essential Peppermint oil as well to sniff if needed when a migraine starts to flare up)

And I avoid my triggers: food, beverage and atmosphere like the plague. I eat freshly prepared food and stick to the NHF Low Tyramine diet guidelines where 1 restriction is to not eat anything that is more than 6-8 hours old-so no leftovers. Protein the longer it sits the more Tyramine builds up and is a major migraine trigger. And of course I avoid my other triggers: MSG, Nitrates, Nitrites, Diary, red wine, aged cheese…..

I hope some of these tricks and tips will help out someone. If you have a few of your own to share or add to this list please let me know. I’m always on the lookout for new tools and tricks to use for my own intervention.

Check out this months Migraine Carnival Blog postings listed as of 5-13-13 for other bloggers tips and tricks and coping with Chronic Migraine Disease:

Coping with Change May 2013

DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.

May 2013 Headache Disorders & Migraine Blog Carnival: Theme-Practical tips & tricks for coping with the changes brought about in our lives by Migraine & Headache Disorders. Posted 4-8-13

Unexpected Lessons Learned and Old Ones Renewed


long road into the sunset
Who would think that suffering with a chronic disabling Migraine Disease, and other invisible Illnesses, that during the course of time you could find any good to come out of all the pain and suffering. Let alone to find any blessings in any of the chaos-with all the conflicting diagnosis, tests, trips to doctors offices, being yanked from one specialist to another, and trying all different concoctions of medications as well as a slew of alternative and holistic approaches, to try to find some sort of relief of any sort! Some people would not blame you if you just walled yourself up, shut yourself off from the outside world and wallowed in  your own pity, crying day after day “why me”. Some people actually do that for a while until they wise up and too fortunately others still stay stuck in that self-pity mode. If you stay in pity mode for too long you end up living a life on your own. My Blessings are my Lessons learned because as you go through life and your given a task or a lesson, you work on it, trouble shoot it and overcome it,  and then apply it positively to your day-to-day life I consider that a Blessing-to take a negative and make it a positive to live by, follow and hopefully inspire others.

Human nature is self-preservation. It’s in our genetic makeup and being human and all we cannot overlook that flaw we all have built into us. We can however change our perspective and relearn a new thought process and coping mechanisms if and when we get out of the initial grief process given a diagnosis of a disease that has no cure. Of course the process is far, far worse for those with a terminal illness. But pain is pain no matter which way you slice it and to live in it and with it day in and day out not only wears out the body but the mind and soul as well. NOT to minimize those with terminal illness, I would never do that. BUT you do have a way out by learning to put others first and not focusing on your own pain so much but by putting empathies’ on others above yourself. In the process this makes your suffering seem less catastrophic and gives you a better mind-set makes for a more peaceful transition into a balancing act of normalcy, or what we can come close to in the Invisible Illness Community. You take the hand you’re dealt with and make the best of it. Oh sure you can moan and groan and have a little pity party and bombard friends and family with daily or weekly emails of how sick you are and how hard it is to manage. And it could be very well true as we all know. But after a while those people that you moan to and complain to after a while will turn a deaf ear to it all and become desensitized by your plight and minimizing your illness and you as well. And that as a result will diminish the plight of all chronic pain sufferers everywhere in the long run.

I have seen over the years waiting in the doctors or specialists waiting rooms people worse off than I am on an outward appearance and I feel empathy towards them. I’d go out of my way to open doors for them when entering or exiting the building,  or letting them get ahead of me in line-no matter where I am: at the store, the pharmacy or at the check in desk at the clinics. And then I would get to wondering about the people that didn’t show any outward sign of distress (as it can be easy to hide sometimes in public, based on the severity of pain that is) and I would silently wonder what demon (s) they are dealing with and I’d feel empathy for them. Not many “well” people wait for an hour in the neurologist waiting room for the heck of it if they feel well, let’s put it that way. And I’d marvel at how composed some people were that they’d keep their pain hidden from the public. Other times some people would persistently go up to the desk and demand to be seen sooner than the others that came in ahead of them. I would not know their situation fully so I would not sit and judge unless on a few occasions they carried on because they had an audience. But again you cannot judge that person’s circumstances like they cannot judge yours. I’m sure if I allowed myself to be taken to the hospital with a full-on horrible migraine I would not be a pretty picture, so one could only imagine.

I do admit at first I was in the denial, weepy, self-centered “why me” phase for a while and I moaned and groaned and went on about the injustice of it all. Then you look and see newborn babies born premature or with devastating birth defects then you start to feel foolish. Then you see people have strokes, get cancer and die of Diabetes and you feel more foolish. Pain is pain and sickness is sickness. It does not discriminate-we are all destined to be grasped by its devastating effects. I have learned this humbling experience along the way and slowly I learned to put others first and to pray for others first. Because in the end we are all in the same boat one way or another-suffering and trying to cope. And when I’m struck down with another debilitating migraine and as I do my meditation in my dark room with my  Migraine toolkit and fight it out,  I take a moment to remind myself that there are others out there less fortunate that I am and who have it worse.

I have learned that there are people who cannot afford the medical care and medications I receive and that is unjust.  I feel blessed that I do get good care and pray that others can have access to even better health care. I will always try to think the best and wish for the best of others as I fight through my attacks. I learned I am blessed to be provided for as I look at people in line at the grocery store, and especially the senior citizens. I see them digging in their purse or billfold to pay for their groceries and I wonder what hard time they are having and say a silent prayer for them. Or if I see a handicapped person I give them the immediate right of way or help them reach for something on the shelves if they appear to have trouble. Any kind of helping hand is better than none at all. I often wonder if they sacrifice food for meds or visa versa and what a terrible predicament that is. Then I’m humbled and shame myself not to complain. Then I will be at the deli counter and someone has waited longer that me, so I let them go ahead of me. Also if someone is in front of me in the checkout line and lacking some change for their purchase I will offer it if I have it not judging, but with empathy that they are having a hard time making ends meet-do they have to spend their life savings on food and/or medicines I often wonder. I do not judge but I have empathy and I realize that after all these years that yes, I suffer horrible pain, but I will recover and continue on. I have shelter, food, medicine, family and good medical care so for that I have learned my pity party is No More. And I interact with people online that are more ill or as ill as myself, and I put the focus on them-not me. I will share my experiences if it feels right and maybe that is why I have this Chronic Invisible Illness-to help others with my experience and insight.

We don’t know the master plan of why this and that happens, and we are not supposed to know why, but we can do our best to conquer, survive and thrive. I have also come to realize that yes indeed there are others that have it worse than me and how dare I whine and complain about what may be trivial as compared to someone who may be terminally ill or have a more chronic condition that I do. It is not a contest of who is the sickest and it’s appalling when you see that play out in life, the “I’m sicker than you are because of this or that” or make a competition out of it. Come on, grow up people and see the bigger picture. It would do no good in the end and would only end up adding to my suffering and make me or someone else lonely, bitter, and resentful ole hag. And who the heck wants to be around that? NOT me! Attitude is half the battle and if you win that you’re on the home stretch. Life is what you make of it, as it’s been often quoted but so very, very true. And your attitude impacts your health-mind over matter. It’s been proven and from what I’ve tried to practice I’ve found it to be true. I’m human and I slip up from time to time, but then I will catch myself and put it all back on track. It’s a constant learning experience. I’ve learned doing a daily gratitude journal is a great way to reinforce this mindset, and to practice writing daily what I have to be grateful for. It’s all about keeping things in perspective. And also by doing daily Bible Devotions as well and incorporating them into my journaling and remembering while meditating through the pain or even on tolerable days-it doesn’t matter what the circumstance remember what I have to be grateful for and how fortunate God gave me the gift of another day so I make the best of it as best as I can.

I have learned to be a better patient as well. To research online before my appointments and take any documentation with  me and especially make sure my information sheet I make up and take with me is better organized and updated with current medications, supplements and symptoms I’m having trouble with. I learned a valuable lesson from a pier online how to make a better patient form and my last visit I took my draft and the doctor was very appreciative. They see so many patients in a day that they don’t have the  time to go through the electronic files and remember everything about each patient. I keep mine to two pages max as not to overload him/her and I update it as soon as my medications are updated and/or changed so that I don’t have to do it last-minute before my next appointment. I have come to be more organized in some areas but a work in progress in other areas.

**These are by far the best lessons I have learned-to be unselfish, compassionate, , patient, calm, focused, forgiving, dedicated, spiritual, humble and self-sacrificing. I have finally learned to stop fretting and worrying about tomorrow or the future-it’s out of my hands to an extent as God has the master plan. So I take each day as a present and consider tomorrow a gift.  I have learned to love unconditionally even if it is  not returned, to let go of past grudges-let it go and don’t fester on it-it only hurts you not the person your grudging. And to live each day like it’s my last. To not hold material possessions as more important than family, friends and life-you can’t take it with you and it’s only temporary while we walk this earth. We didn’t grow up with much and mom and dad always told us you came into this world without a penny and you will leave without it, so don’t put value on meaningless material things-God first, family second and friends. It helps too that my parents raised me this way-to do unto others as you’d have them do unto you. We were constantly told that as we grew up. It was actually hammered into us as well as to respect your elders and to always say please and thank you, and to always be humble. And it’s not worth it to fight-who cares who’s right or wrong. Usually the person you’re arguing with will not change their outlook or perspectives, so why waste your breath and time. But to stand up for friends and family and lend a helping hand to others  in need when possible.  It hammers home the practice of turning the other cheek, which for people as a rule we are prideful and do not want to turn the other cheek and let any insult or wrong-doing pass. No, we want an eye for an eye and a tooth for a tooth.  We want punishment-we want revenge. It eats us alive over time because we let it, and that negativity also feeds to chronic pain. We are not in general forgiving people. I have worked hard to overcome that thought process and have forgiven a past horrendous act against me physically and emotionally. My attacker did not ask for forgiveness, but I gave it after years of repressing it then seeking help and dealing with it to get my PTSD in control.  I do feel freer to have done this and talking about it helps-that in and of itself if anyone takes away anything from this post it should be that-FORGIVE any past grievances, work on it with a counselor if needed like I did, talk to friends and pray, pray, pray on it. With work you can let it go and that too improves your outlook on dealing with chronic pain. There is truth in mind over matter. Practice and believe it because it’s true. Again, it will not cure you but makes the whole situation more tolerable. It’s ok to have bad days and slip, but recognize it, correct it, and get back in line.

I have also learned over time and research there is NO cure for this disease and have come to grips with it. I have made peace with it and even when I have sometimes well-meaning family and friends say I need to work harder and go places to be “cured”, it’s fruitless to try to re-educate them that this is cureless, I let it now go over my  head and pass by me like the breeze and not upset me anymore. I have learned, the hard way, that they will never get it even seeing reports in print and online so why fret over it and stress over it. I’m at peace with it and let it pass me on by. That is a Blessing that I can come to terms with the disease and almost make friends with it by letting it be my teacher.

Well, mom and dad, it finally stuck and yes I did learn something after all. As they are watching down from heaven I can only hope I’ve done justice to their lessons taught. You cannot take Southern manners out of a Southerner, even when I’ve been transplanted to a Northern location 🙂

Sometimes Chronic Illness can be a blessing in disguise with all the lessons you learn along the way. Especially for me as these are my experiences and what I have learned and can attest to. You can learn how to be a better person and leave a positive footprint in the lives of others. I think that being so ill and struggling with chronic and most times excruciating pain daily, and focusing on being positive, peaceful and calm-meditating and praying through it with my calming mediation music, my darkened sanctuary, essential oils and my best puppy friend. That along with my parents teaching has made me a better person. At least I like to think so.

 

DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.

Migraine Carnival April 2013 Theme: Unexpected Blessings that have come out of our experiences living with Migraine Disease and other Headache Disorders.
(Submission 3-27-13)

Unexpected blessings that have come out of our experiences living with Migraine Disease and other Headache Disorders.

Migraine survivalist kit and tactics


My Migraine MUST HAVE Survivalist Kit  

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(The Step Bench is for my Dog to get on bed)

1. Dark Bedroom (shades closed, curtains closed, door shut, and cell phone shut off-sanctuary in place

2. Several Ice packs (different shapes for different applications all frozen and ready to go)

3. Cool washcloth to wipe off face or place on forehead

4. Bed Buddy (1 for neck and shoulders and 1 pr for feet for microwave, and a few homemade rice packs)

5. Warm fuzzy socks 

6. Warm, loose fitting, comfortable fleece pajamas (or men’s over sized fleece separates-the baggier the better)

7.*1-2 bottles of water for bedside table (I can tolerate water at room temperature better and keep nearby at all times)

8.*7-up at room temperature (room temperature settles better if I need to take w/saltines so I keep one nearby at all times)

9. Ziploc bag w/straws for 7-up

10.*Abortive Medication on bedside table (Imitrex injector pen kit w/refill, alcohol swabs, Migranal Nasal Spray w/portable O2 tank nearby)

11. *AYR nasal gel packaged in small Ziploc bag w/Q-Tips for use w/O2 to keep nasal passages moist

12.*Backup Medication on bedside table (Indocin and Fioricet-experimenting w/herbal Hylands Homeopathic Migraine Headache Relief Tablets)

13. *Anti-Nausea Meds (Zofran)

14. *Sea Bands for nausea

15. *Organic all-natural peppermints (Yummy Earth Organic Refresh Mints, Wild Peppermint-got these off Amazon.com) great for tummy upset

16. *A pkg of saltines (in 2 large Ziploc bags (to keep from going stale faster)

17. Notepad on bedside table to document medication w/ 2 pens and 1 pencil 

18. Post-it notes for spur of the moment thoughts or to-do’s

19. **Box of Kleenex

20. **IPod loaded with soothing meditation music w/comfortable aftermarket ear buds

21. **Over sized eye mask to block out light

22. **Package of ear plugs to use when IPod not in use

23. Electric Fleece Throw (under comforter on top of blankets and sheets)

24. Extra pillows

25. *Essential Lemon Oil (for use on temples only-massage in and on tender points on scalp)

26. *Small package of hand wipes 

27. Small bedside lamp w/dimmer setting or switch

28. Small flashlight to use in middle of night to get medications and document on notepad as to not turn on any lights

29. Picture on bedside table-family members, friends, or scenic to comfort and focus or meditate on (I change randomly depending on mood)

30. A lined waste can (Just in case)

31. Nightlight in bathroom so you do NOT have to turn any overhead or bathroom lights on

32. Cell-phone w/ringer off (we have no land line)

33. Timex watch w/Indi-glow face (emits a soft glow to tell time to write down medication doses so no need for lamp or blaring screen on cell-phone)

34. My glasses (of which without them I am totally blind as a bat when it comes to reading)

35. *Un-scented lip balm for dry lips (seem to get extra dry during a migraine attack and if using O2 w/Migranal)

37. Heavenly Acupressure MAT & PILLOW Combo (got this off of Amazon as well. I use it on the bed as the floor is too uncomfortable)

38. I make sure to try to remember to post my re-usable laminated “do not disturb-migraine in process” sign on front door

39. My bible and Journal if I feel up to trying to read a scripture bookmarked for inspiration and my Journal to write down something positive for gratitude to focus on positives and not negatives

40.  And last but not least, my most important Migraine Med-my little cuddly dog Paco who snuggles and keeps a watchful eye over me when I’m ill. 

*(I keep most small items in a small basket on my bedside table in an organized layout and what doesn’t fit **I have on my little cove on the headboard, all easily accessible. The only things I need to get up and get is the ice packs in the kitchen and re-heat my heat pads in the microwave)

When I first started getting Migraines over 25 years ago the house we had then had a window in it so when we built the house we live in now we customized it and I made it Migraine friendly, which meant NO windows in the bathrooms. A lot of people thought that was strange but I spent a LOT of time on the bathroom floor in the early stages of my Migraine episodes (and still do from time to time) near the toilet, or porcelain throne if you’d prefer to call it that. And also the feel of the cool floor against my head was comforting in a strange way as I made a pallet to lie on as comfort was not the main focus at that time. Little was known about Migraine disease and there were no medicines at that time targeted to abort nor prevent them so it was just riding the storm out the hard way. Earlier in those times my dad brought me over my mom’s Darvocet as that was all she had been given to fight her migraines. Now I know that is a big no-no sharing ones medications but there was nothing for me to take that would take the edge off. 

Thank God they were not that frequent but after a few years Imitrex came out and I went to see my family MD. I was officially diagnosed with Migraines and when I got my RX filled I about had a heart attack as this was a new medication, not yet covered and had to pay full price for 9 pills and it was an ungodly amount of money-almost $200.00 at that time! But by then I learned to add to my arsenal Ice packs for my head and neck as they seemed to favor one side of my head it was a challenge to keep the ice pack in one place. So I moved to the bedroom and tried to make that a refuge. When we designed the house I made sure that the only bedroom window was facing North, so no direct sunlight would come through and that side is mostly in the shade, but any light is agonizing. The bedroom was still too light so I got room darkening curtains and tried to make due. Then I got soft over sized eye mask and that seemed to work. I used an ace bandage to try to keep the over sized ice pack in place, but that was a hassle when it was time to swap out ice packs when the one I was using melted and I needed a fresh one.  Plus sometimes I got it either too tight or too loose.  I cleared all nick knacks off my side table to keep meds handy and a glass of water. Then later on to keep a notebook to keep track of when I took my meds and what the pain level was-I started keeping a pain diary of sorts,  and also a small lamp that was adjustable in brightness in 3 clicks-from low on the 1st click to too bright on the 3rd click. I know have a handy organizer tray on my bedside table to keep almost everything I need in one spot. 

Then I painted the bedroom a soothing dark blue, the curtains a dark blue and I installed room darkening shades to cover the windows, and I call it my little cave-my sanctuary. I have a dark blue comforter bed set and when the bedroom door is shut and the shades and curtains closed it’s nice and dark.  At first I liked the room cooler and had a small fan on the floor for white noise. I searched online and found ice packs that would form to the head but it was a narrow one, but I got it anyway figuring it was better than nothing. Then later on I connected with a fellow migraine sufferer and she sent me a skull freezer cap! Kathy has been amazing and I will not share her full name but that we met when she posted on Migraine.com which I have followed for a few years. I don’t know what I would have done without Migraine.com!

Then I started getting a lot of neck and shoulder pain and found that heat worked better than ice so I had gotten one of those bed buddies that you warm up in the microwave. I also made some of my own out of men’s white tube socks and raw long grain white rice to use on other body parts that hurt and felt raw-back, hip, knee, shoulder, and elbow and in the interim on my neck when I was waiting for the bed buddy to heat up. My daughter got me Bed Buddies Heat warmers for the feet. Wow, do those feel great. And I am once again a big fan of over sized loose fitting fleece pajamas. I don’t care what the size label says anymore-the bigger and looser the better. Anything that is constricting adds to the discomfort. Even in the summer I am too sensitive to the temperature and now I found out why. I also have Fibromyalgia and Chronic Fatigue Syndrome. That would explain the muscle spasms, sensitivity to temperatures, chronic fatigue and maybe the daily chronic Migraines. But that is a different story for a different time. I cannot do aromatherapy but I found that lemon oil was suppose to be good for migraines after researching online so I got some and apply it only to my temples and tender spots on my scalp and neck. It warms up and does something-I cannot explain it, but it smells fresh and doesn’t overpower and I can tolerate it. I cannot tolerate lavender oil as it is too overwhelming and for those that are the same way try lemon oil. I have read that eucalyptus and rosemary essential oils are good for sore aching muscles so I might try those at some point down the road. 

I turn on the fan and point it away from me now, but the white noise helps drown out any noise that goes on the other side of the door and through the house. I will pop in my ear buds and turn the volume on low and play soothing meditation music and focus on an object in the room-picture on table or wall or maybe a statue and meditate. Sometimes a 7up will help the stomach instead of water and saltines. When it gets bad eating solid food is out of the question and I know they say not to skip meals but come on! When you’re so sick you cannot keep anything down the last thing on your mind is food. So I try to Zen out, chill out and replenish my ice packs as needed and reheat the hot pads also. If I’m home alone that means I am disrupted a lot. If I’m not then I can ask for help when others are in a fair mood. I try really hard to focus on the positive and when others around me are negative I still try to maintain a positive attitude and if I find it hard to do I focus on trying to block it out because negativity makes the pain worse. I found that out by concentrating on it and focusing on it and realizing that it was true. Being positive does not take away all the pain but it makes the burden easier to bear and being negative or around negative people not only brings you down it magnifies the pain. So meditation and chanting a mantra on staying positive helps and working really hard on keeping that up, and I cuddle with my little dog Paco who turns into a little nurse aide and he keeps a watchful eye on me when I’m ill. He will not leave my side and is extra cuddly and affectionate and gives me the unconditional love that I need the most to help me endure and pull through yet another bad spell. 

If my migraine lets up some to where I can semi-function I will get out my laptop or tablet and connect online to get a pep-talk of sorts. But that is only when I’m up to it because sometimes, well most of the time, when I get online I don’t know how to cut it short. I start seeing topics or conversations and I get carried away. Or I think of something I want to search about and before you know it I have a lot of pages bookmarked that I have to check out later when I’m functioning better. I try really hard to keep technology out of the bedroom as it’s suppose to be a sanctuary, but once in a while I break my rule. That is something I’m working on really hard. I have to admit last week I did really well and I did not take them into the room with me, so I’m making some progress there. But this is how I survive my Migraine episodes. Some of these I picked up on my own by trial and error, some from blogging with others on Migraine.com and from other bloggers. 

I hope I have something in my “Kit” and “survival tactic operations” that might help someone else. This is how I stack and prepare my safe zone as I call it-to feel like my sanctuary to ride out the storms and have most of what I need at fingertip reach. Looking into a very small freezer for bedside, but not very practical at this point, but my ice packs would be a lot closer-not that it kills me to go to kitchen except if the lights are too bright. We have a skylight in the kitchen ceiling-that was a bad idea-and a lot of sun comes through it. 

DISCLAIMER: THIS SITE IN NO WAY GIVES MEDICAL ADVICE OR DIAGNOSIS. SEE YOUR OWN PHYSICIAN FOR ANY CONCERNS OR QUESTIONS YOU MAY HAVE THAT ARE MEDICAL. THIS SITE IS TO JOURNAL AND BLOG ON MY “OWN” PERSONAL EXPERIENCES AND WHAT WORKS FOR “ME”. THIS DOES NOT INDICATE IN ANY WAY THAT I SUGGEST THAT OTHERS MUST FOLLOW MY THOUGH PROCESS OR MY WAY OF DEALING WITH CHRONIC PAIN. THIS IS WHAT I HAVE FOUND TO WORK FOR “ME” IN THE 25 YEARS I’VE BEEN DEALING WITH THIS CHRONIC CONDITION AND HOW I FOUND A WAY TO COME TO TERMS WITH IT. YOU MAY OR MAY NOT AGREE-THAT IS YOUR CHOICE. BUT I AM STRESSING THIS IS WHAT WORKS FOR “ME” AND I’M ONLY JOURNALING TO INFORM MY PROCESS ALONG THE WAY FOR “MY” BENEFIT AND FOR ANYONE THAT WANTS TO LISTEN. NOT INTENDED TO BE A LECTURE FOR HOW OTHERS SHOULD DEAL WITH CHRONIC ILLNESS OF ANY SORT.