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.

Mental-Health-Humor-Medication_cartoon-a-thon_7_500

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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#MHAMBC Migraine & Headache Awareness Month #27: Anger Management: Goosefrabba: How do you constructively deal with the anger and resentment that arises as a result of living with Migraine/Headache Disorder?


June Migraine awareness month

Managing anger, resentment and rage at a disease like Chronic Migraine Disease is a daily but hourly challenge. As those of us that have to deal with this monster non-stop as it’s always prevalent in our lives, we have to find healthy ways to vent and release or it will eat us alive.

Blogging helps and being able to share and interact with other sufferers on different online support groups is another great outlet. We can vent, share, exchange idea’s and lift up each other and support each other. And what’s said in the support group stays there so it’s a safe sanctuary. Blogging is a little different because you open yourself up and make yourself vulnerable, but getting the word out is more important that sparing a few harsh words from some non-believers or non-supporters. Everyone gets bashed and knocked down once in a while. You just find a creative way to release this anger.

Having a close personal friend is also a good way to release the frustration, anger and fear that comes with this Chronic Disease. Even though they may not fully understand, having someone to listen to you and not judge you is so important.

I have even punched pillows on the bed, ranted to myself vocally in the house when no one is here of course-the dogs look at me like I’m off my rocker but they don’t judge me.

But trying to manage anger is a constant battle and one cannot sit back on their laurels and think it will just go away on its own, because it won’t. And if one doesn’t acknowledge the anger they are fooling themselves and those around them because you cannot help but be angry at all this disease has taken away from us, from me. It’s robbed me of my life and I want it back, darn it!

Learn more about the MHAM Blog Challenge and 

Other MHAM events by visiting:

2013 Migraine & Headache Awareness Month Information Page

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com.

#MHAMBC Migraine & Headache Awareness Month #26: Men in Black: Migraine Neuralizer: How do you cope with the way Migraine/Headache Disorder can impact our memories?


June Migraine awareness month

I am constantly struggling with memory issues. I even went so far as to as my Neurologist if I was going senile, or early Dementia or worse Alzheimer’s because I cannot remember from one minute to the next. And also having Fibromyalgia on top of Chronic Migraine Disease I get the double whammy of Brain Farts I call them.

It has made a huge impact on my life for the worse! I have turned on the kitchen faucet and walked away to come back to a sink overflowing because I forgot I had the sink filling-and in such a short amount of time. I’d put food on the grill and make something inside and forget about the grill completely until much later-crispy chicken jerky later, slightly charred. I’ve burnt stuff left and right, which is not the normal me.

Of course everyone gets to that stage where you “normally” forget things, but it’s been running more rampant and on a day to day hour to hour basis it seems. I’m always forgetting where I put my cell phone and spend several minutes looking for it. I do the same with my glasses, if I take them off it takes quite a while to find them again. I’ll set down my water glass as I’m always chugging down water and forget where I put it. I set alarms on my cell phone for when to take medications, and even have a chart on the cabinet door, but if I turn off my alarm and get slightly distracted I forget about my meds and end up taking them late and not on schedule. I get so angry with myself. My spouse and daughter get more aggravated with me and I’ve explained to them many, many times that on top of these Brain Farts that come with these diseases, it’s also a side effect from some of the medication.

I lost count of how many lectures I get about how I forgot to do this and that. I just sit or stand and wait for them to finish and then I have to remind them I have no control over it. I wish I did, but I don’t, and that is a depressing and stressful part of this condition. I have also forgot to pay bills. Not normal for me at all. And then I write checks from the WRONG bank, in which the account was closed-don’t ask me why those checks were still around but they were. That mess is fixed at least.

But I would give anything to get my memory back and make it better. If only there was a way short of finding a cure for this horrible disease. Then I can toss all these rotten pills and injections and would not have to see so many doctors and clinics. In my dreams for now.

Learn more about the MHAM Blog Challenge and 

Other MHAM events by visiting:

2013 Migraine & Headache Awareness Month Information Page

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com.

36 Million Migraine Campaign – Mayo Clinic & American Migraine Foundation


playing in water

6-27-13

Finally, today the Mayo Clinic and The American Migraine Foundation, with the support of Mrs. Cindy McCain, a long-time Chronic Migraine Sufferer, are launching the 36 Million Migraine Campaign. FINALLY a voice is being given to Chronic Migraine Sufferers and public awareness and education in the forefront as well as funding for more research. This made me so happy when I watched the Today Show and saw Mrs. McCain being interviewed for this campaign launch-if I knew how to do cartwheels I would be doing them right now!

Check out the links

 

http://youtu.be/23ZG0cc7TXg

http://www.americanmigrainefoundation.org/support-the-foundation/36-million-migraine-campaign/

Sending you all Blessings, Love and Support. Have a great day!! Julie

#MHAMBC Migraine & Headache Awareness Month #23: Bruce Almighty: How does spirituality and/or religion help you cope?


June Migraine awareness month

I was not raised in a quote “Religion” but I was raised w/Christian beliefs and morals. My dad was a Baptist and my mom was a Catholic. They were not in favor of each religion stating they were the “only” religion and one was better than the other-or the age-old belief “If you don’t believe in the way we do your destined for Hell“.

I am a Christian and was Baptized later in life, but I am non-denominational. I do not preach any particular religion is the “be all” and “end all”. I believe that as long as you believe in God, profess your belief, read the bible and practice in a loving Christian matter then you have nothing to fear.

I use prayer a lot when suffering with chronic pain. But I also Meditate as well, as was taught to me by my Therapist and by a former Chiropractor I had seen years ago who is no longer in this area 😦  There are quote “Christians” or other “Religions” that frown on Meditation saying it’s not practicing the Christian Faith. I brush that off as ignorance and often brain-washing, as when people are brought up in certain “Religions” they are repeatedly told what they are supposed to believe in and what they are not and they are not given free will to choose their own way and they refuse to see any way but their way. I think that is so wrong!

But I will look up verses, read them, repeat them and pray. Then I will use Meditation to try to make it through the pain-sometimes I will silently chant a favorite verse over and over and focus on the meaning of it, and other times I will use visualization instead. But I do think that one is entitled to their own beliefs and thought process and I will not bash those who don’t believe the way I do.

But I do think that using these methods is not wrong and I believe that whatever helps someone cope and make it through the pain is a must-needed component to this Chronic Disease. You need something to give you guidance. And I do often send out prayers to those in my support groups who are suffering so and I offer up prayer for them, as well as in Bible Study Group. I do think prayer is important and how you practice it is up to you-each individual.

Blessings to you all.

Learn more about the MHAM Blog Challenge and 

Other MHAM events by visiting:

2013 Migraine & Headache Awareness Month Information Page

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com.

Negativity: Migraine Disease Bashers: Invisible Chronic Illness Community is adding to Stigma


blue face of depression

It saddens me to think that everyone that is in the Invisible Chronic Illness Community, that includes Chronic Migraine Disease as well, do not band together to get the true issue out about what is fact and fiction when it comes to someone from the outside touting that “alternative” therapies are the “only” treatment for a known Neurological and Genetic Disease of Migraines. I have struggled with this disease for over 25 years and have tons of research as I’ve had to in many cases be an educator for my Neurologists and PCP‘s as they still as of today don’t have a clue as to what is going on with Migraines. Many doctors do not get skilled teaching on Migraine Disease as it is such a complex Disease requiring a lot of time, effort and research. And there are many different types of Migraines as well, so to get correctly diagnosed and treated properly can take years. There is no “one size fits all” diagnosis or protocol for any one patient. But the fact remains clear, those who do suffer Chronic Migraine Disease do need pharmaceutical intervention in ADDITION to alternative to make a well-rounded approach to the care of everyone who suffers from this terrible disease.

No one ever once stated that Aromatherapy was not a good treatment. It was only pointed out that when a “sales person” was promoting a product she sells as the “only” solution was where the problem began. And again, I cannot stress it enough, as with any other chronic disease or illness there is NO one size fits all answer and there are more pieces to the puzzle than just essential oils. I have on some of my past blogs where I have noted I use alternative treatments as well. We all do. But it’s part of the “complete” regimen and does not replace medical care as this person professes.

ALL of us, myself included, do practice healthy living-eating right, avoiding dietary triggers, exercise, physical therapy, massage therapy, cognitive therapy, Chiropractic, Acupressure, Acupuncture, Bio-Feedback-to name a few. We all have tried and do use aromatherapy when it’s tolerated. We all have tried and use different muscle rubs on the head, temples, neck and scalp to help reduce pain-those are alternative therapies, as is using ice packs, heating pads, bed of nails mat, Chillo‘s, cooling patches-all again are alternative therapies-we all do anything and everything possible to try to stop the pain. But we use all these things in ADDITION to preventive RX medication and RX abortive medications prescribed by a qualified physician. Everyone I have come across, and myself included, have tried just about every alternative therapy known and then some, as well as trying all types of medications to try to manage, stall and abort a Migraine Attack. When all approaches fail we often have to resort to emergency intervention, be it the dreaded ER or to get into an infusion center, or have our doctor call in a cycle-buster. I am not a lazy, incompetent, self-serving, attention seeking Migraine Disease Sufferer. I have fought and battled this beast for many years and will continue to do so. I have spoken out in the past when approached with a Stigmatizing statement and will continue to do so. If someone reading this doesn’t like it then it’s your problem, not mine. I will continue to investigate, research and blog on what is medically sound information. If you don’t agree you can offer your own Medical and Scientific research to dispute that.

It is nice to be able to go into support groups and be supported for a Chronic Disease. People always have opinions that differ, but that does not mean people have to be mean, nasty, hateful and disagreeable. Especially when someone is SUPPORTING the cause, not fighting against it. This part I do not understand and never will. All Chronic Disease have a Neurological factor. They just don’t appear out of thin air for no rhyme nor reason. Like cancer, we know some forms are genetic. Is anyone going to dispute that as well and say the “only” way to cure it is with aromatherapy. While it may soothe it cannot and will not banish those nasty cancer cells. For that you need trained medical intervention. The same with Migraine Disease, Fibromyalgia, Lupus and many more diseases. If you’re not being treated correctly you need to shop for another doctor who will. You just don’t sit there and settle and not try to get better. You have to fight with all your might and all your worth.

We also know that it is neurological and it is genetic. I can paste the webpages yet again from well-known institutions that support this fact. But again this is all getting to be so repetitive. If you cannot support the correct education of what this disease is then you should not promote anything. I’m for the truth, will remain truthful and tell nothing but the truth. Some people cannot understand that concept but that is what I’m about.

In closing I’d like to wish all of you-Chronic Illness Community and all those who do and do not agree, a low pain day and sending you Blessings to you all as I do not wish to be a disagreeable person. I just merely want to present the facts and share the truth in this Disease. I do not lead people astray.

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