Well hello there. Sorry it’s been so long! It’s been a long and very hard time last year. I’ve had some major set-backs that have made some chronic illnesses more severe, and then I’ve had intensive cervical nerve blocks followed by a couple of rounds of ablations to control my Cervical Osteoarthritis and Degenerative Disk Disease which in turn has toned down my Occipital Neuralgia a few notches. Now that has not cured my Occipital Migraines. Not in the least. It just keeps me less suicidal that when I was in 2010-2011 and keeping me from bashing my head in the wall to try to either dull the pain or end it. That idea always sounded like it would make it better for some odd reason. I think fellow Migraine sufferers that have this horrific pain that starts in the back of the head and feels like Satan himself is drilling relentlessly out your eyeball thinks sort of along the same lines. I’ve had 4 rounds of Botox for Migraines this years + the 2 the prior year. I do not think they are being effective. Along with the medication trials, those I’ve had since 1996 since the present time I had a week long migraine 2 weeks ago. Not a really fun time over the holidays.
And the Fibromyalgia and CFS has really been deteriorating into the severe mode. My PCP started letting me do Vitamin B12 Injections at home, 1ml every 2 weeks. Then just 2 weeks ago he changed it to every week. He’s hoping this will help for the CFS. If not he was talking about trying a low dose of Ritalin but I don’t want to go that course. My Cymbalta was increased from 30mg to 60mg and added Lyrica back 50mg 3x a day. That helps with Fibromyalgia and Chronic Pain.
I have been trying to stick with therapy but have had medical issues and medical crisis interrupt my schedule. I hopefully plan on 2015 being a better year as my PTSD and Major Depression are not getting better. And my therapist helps with pain management. My Diazepam was changed from 5mg to 2mg. I take 2mg in the am and 4mg in the am. Helps with my PTSD and Anxiety/Panic Attacks. Yep, those still plague me.
My SSD comes up for review this coming December 31, 2015. I just happened to come across my SSD Court Decision papers and I emailed my SSD Appeals Attorney what I do. So I’m waiting to hear back. I’m still in constant pain and the severe Fibro pain, CFS and Migraines make it hard to even work at home. I try but I need some help every so often from my BFF of over 30+ years. Very depressing to need so much help.
I belong to CMA and a few CMA branch FB support groups. I started my own FB support group: Making all Invisible Illnesses Visible. There are really awesome members in all groups, especially mine. I have pretty cool fellow co-administrators. If not for ALL these groups support this past year, my BFF and my Bible Study Group, I would have lost my mind and ended up hospitalized again. Normal people just don’t understand how bad Chronically Ill people feel. We don’t make this stuff up. We’d give ANYTHING to be more productive!!! It is NO FUN being sick all the time!! We hate this way, WAY more than you normal’s hate it!!! And all we ask for is a little compassion and empathy! Not hatred, sarcasm and spite.
This is all I can write for today. I’m exhausted. The Insomnia has been acting up again. I wish you all Peace, Love and many Blessings. Julie. xoxoxoxoxoxoxoxoxo
“Hard times build determination and inner strength. Through them we can also come to appreciate the uselessness of anger. Instead of getting angry nurture a deep caring and respect for troublemakers because by creating such trying circumstances they provide us with invaluable opportunities to practice tolerance and patience.” ― Dalai Lama XIV
Chronic Diseases bring out The Dark Side in everyone. The person suffering one or multiple Chronic Illnesses (until they recognize and correct their attitude-if and when they do) family, friends and significant life partners-loved ones, co-workers, bosses, clients (customers) health care providers (nurses, receptionists, doctors, PT therapists, nurse practitioners, massage therapists etc). Anyone and everyone in the public and those in support groups-Facebook, Twitter (etc).
Egos are at play, how people are raised are a major key issue. Were they in a loving, stable, emotionally secure family situation. Or was it unstable, emotionally lacking in love, emotionally abusive by one or both parents. Was one parent an absentee parent-always missing to avoid the other parent due to issues in the marriage-lack of a true loving emotional bond, or to avoid confrontation to the dysfunction family situation due to their “own” dysfunction family upbringing. Or missing due to being the sole bread-winner, death, divorce or non-traditional marriage/relationship as in the past year status quo? Some dynamics in relationships and personalities in people make them seem almost emotionless, backstabbing, unloving, unstable or downright evil.
So why do people act this way? Why do people reject those who are chronically ill? Why do they choose to disbelieve those who are chronically sick? Why do they always put those who are sick to the test time and time again, and yet those who are NOT sick seem to get away with anything like calling off sick from work with hangovers or trivial things, while those who are truly sick are discriminated against enough for employers to legally get away with it. Sometimes to the point of pressuring employees to quit so they don’t have to fire them, getting away with not having to pay unemployment and thus not having to come under fire with breaking any discrimination laws.
That was how I “forced” to leave my job. That and I was indeed becoming more chronically ill at the same time. I do believe my cesspool of a job was triggering my illness to come on at a rapid speed. Not that it wasn’t there before simmering and boiling and occasionally acting up on occasion giving them fuel to toss onto the slow burning fire. But I was a longtime loyal, dedicated, hardworking employee with morals and standards. I did not believe in what had become the new “norm” called brown-nosing instead of actually working. The so-called “team leaders” got their jobs that way instead of actually earning their jobs, and they kept their positions that way, making us peons do the dirty work and they took the credit while they shopped online at Amazon, eBay and checked their own Facebook and Twitter accounts, or texted on their cellphones to each other or their then boyfriends who became husbands or live in significant other half. occasionally we’d have to work out-of-town on “jobs” and on the way home after injuring my shoulder I started to complain of pain. The “team leader” was so busy trying to text her boyfriend whom she must have been afraid was doing something other than what he said he was doing (she was texting him during the “job” too but was I allowed to say anything afterwards-NO) and on my other side was the mother of another team leader who had to stay “mum” as to “protect” the business you know. Well the next business day (this job was on a Sunday) I reported my injury to HR. Well later in the morning I was told that since I didn’t report it ASAP as soon as it happened I could NOT file workman’s comp for on the job injury. When I stated I did complain I was told that lo and behold “no one recalled my saying anything”. Then HR said she had to quote “do what she had to in order to protect the company”.
So goes to show when someone wants you out of the job, out of their lives or make it as hard for you as they want (intentionally or not) there may or may not be much you can do about it. As for my job as the pressure on me was increased I had my doctor put me on FMLA then Temporary Medical Disability which was extended. I then filed for SSD. I was denied. My husband was against my going on temporary disability and FMLA. I got NO emotional support from him at all as my disease progressed from episodic to intractable daily occipital migraines and panic attacks. He did not and would not understand. Stems back from the childhood he was raised in. This was really brought home again this weekend after he was gone for a week in Florida.
I got a Total Gym Platinum Plus with 8 attachments & 4 DVD’s to duplicate the pulley exercises I learned in PT last year. I have bad Fibro, CFS, Peripheral Neuropathy as well as long-standing Occipital Chronic Migraines, Occipital Neuralgia, DDD, Cervical Osteoarthritis, etc. I CANNOT do strenuous exercise as I’ve told him time and time again. Someone else in his family has fibro and it’s always poor so and so. She doesn’t do anything major around the house-her poor hubby who is a saint does, w/o complaint or thanks does and his health is not that great does so-does he get credit. NO. Does he drop the F bomb when he does so w/o being asked. NO. I have several issues and several food intolerance/allergies and I cannot help it I have chronic diseases that prevent me from doing things-like mowing almost 2 acres-granted I could not do for most of last summer, but SHE has NEVER mowed. But I get hell for not doing a lot and when someone “else” around this house (he) has to do something the “F” bomb goes off like crazy as well as a slew of other blue words and negativity galore. Of course in that household as they were growing up chronic illness was NOT tolerated as 1 child was blacklisted and outcast due to a serious illness (life threatening asthma) by her own mother who raised 2 of her children to hate the 1 who had the asthma, and turned them against the sick one & still to this day blames her OWN daughter for disrupting mommies life with being so sick as a child!! She blamed her for everything-for things that went missing-she must have taken it-even as an adult when she moved out of the house and was never allowed a key, somehow she mysteriously vaporized into the house and took valuable rings (that mother dearest misplaced & later found but no, no that could not be bad sick daughter that disrupted her life took them & must have come in when she wasn’t there & put them back, geese) It’s a wonder she let her live to adulthood! Anyway I’ve been made an outcast also, just to give you and idea why giving you a “taste” of the family history. Anyway my Total Gym isn’t good enough for him so it’s just not good enough so I have to send it back I was told as it was “junk”. Well Bull flipping #hit!! NO #ucking way am I sending it back!! It’s set up on 6 month easy pay. It’s in the convenience of my home so with my CFS I don’t have to worry about falling asleep like I did w/PT on the way home or during my sessions and if I get too fatigued during my workout I can pause and start-up later! I’m tired of making some thick-headed insensitive dense people understand. I will continue and try NOT to be bitter, but I do need my outlet and to vent. Thank you for letting me do that here on my safe haven. But it still feels like a daily battle of good vs. evil.
As for social media you come into that as well unfortunately. There is a pecking order sometimes and you come across those who may feel jealous or feel more superior to you and want to push you to your limit or others that you have come to love and admire. And a few years ago if you had asked me if you can build real lasting friendships on Facebook I would have laughed in your face and said hell no. But now I’m here to say you most definitely can. I have met some really amazing people on Facebook through some support groups I have been a part of and I’m still in. One I can speak of as its public but restricted as you can only be invited into is Chronic Migraine Awareness-CMA. A couple of others I’m just a member of are Migraine related are private and by invitation only and I cannot mention those names. They are pretty awesome. 2 groups I am co-administrator on and they are private. There are some really amazing people in those groups and I have made some really super amazing friendships there and some really close bonds the past year or so. I have also had a few clashes with a person or 2 that were not solely about building people up, but about power struggles, superiority, ego bashing, back stabbing-it was almost like my toxic work situation all over again but in cyberspace. Just when you think you find a safe haven……………………………………………… Moral of the story is you can trust but at the same time watch your back and always, ALWAYS trust your instinct. If your gut is telling you something is amiss, trust your gut-it is rarely wrong. Save yourself from an ensuing bloodbath and free-for-all that will be up for public display that is out of your control.
Until next time sending you all blessings, love, hugs and prayers. Julie
DISCLAIMER:
Nothing on this site constitutes medical or legal advice. I am a patient who is engaged and educated and I enjoy 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.
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.
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.
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?
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.
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.
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??
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.
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:
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.
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.
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.
Everyone that experiences Chronic Migraine Disease and other Chronic Pain Diseases, know all too well that along the long and bumpy road of Medical Care and Self-Help, there will be many stumbling blocks and pot-holes that we come across and must find a way to navigate and deal with these issues. For us seasoned Veterans in this ongoing war we should be use to these setbacks, and we do expect them and for the most part we can get around them pretty well. But once in a while you get thrown for a loop and try to struggle to recover and march on. Or rather, ease on down this long and difficult road.
For those of us who suffer this disease there are many Comorbid Conditions that go hand-in-hand with Chronic Migraine. It could be Fibromyalgia, Chronic Fatigue Syndrome, Depression, PTSD, IBS, Lupus, Lyme. I could just go on with many other devastating diseases but want to focus on my key issues for now. Chronic Migraine Disease, Fibromyalgia and Depression. I have a few others but these right now are my main areas of concern/problems.
As most of you know by now that have followed me, I have suffered Migraines for over 25 years. They started out as Episodic and turned Chronic in 2010. I get them daily and no matter how many identified triggers (of which my list seems to grow in leaps and bounds lately) and alternative therapies I use in conjunction with Medical Care and Medications, there seems to be no relief.
Since 2006 I’ve seen 4 Neurologists, 2 Gynecologists, and 2 GP’s. All this time I have always complained about constant neck pain. I’ve actually had neck pain longer than that. I was in a car accident in the mid 80’s where I suffered whiplash from being rear-ended by a negligent driver. At the time they didn’t think it was serious and through the years I sought Chiropractic care that would temporarily help the problem but it never eliminated it. It would always come back a day or 2 after treatment and even with my doing cervical exercises at home and neck strengthening exercises, to no avail the pain persisted slowly getting worse over the years. For about the past 10 years I would hear crunching in my neck when I would rotate it and I could never fully rotate my neck to the LH side as it would hurt and pull, becoming more painful the further I’d rotate, to where eventually it felt “stuck” as it would not rotate further. My rotation to the RH side was not impeded. I did have a great Chiropractor in Bridgman that did take the time to x-ray my neck and showed it curved the opposite way of what it should. She worked tirelessly on my neck, doing accupressure and trigger point stimulation. It was feeling a little bit better and sadly this Chiropractor moved away and I could no longer get the care I was accustomed to. Good Chiropractors are hard to come by, as is Medical doctors.
About 8-10 years ago I suffered an injury to my shoulder. I suffered a small tear in my rotor cuff as a result of falling down my basement stairs on my back all the way down the entire length. I unwittingly put my LH arm up and out to try to stop my descent and that arm ended up being twisted behind me. Stupid me thought I could go to work as the panic wore off and the adrenaline, I was sitting at my desk and the horrible pain kicked in. I had to leave and get an x-ray and then be referred to an Orthopedic Specialist who gave me Cortisone shot and PT to strengthen my shoulder. The tear was too small for surgery but big enough to require injections, which were pretty painful. I’ve had those before in my hip for Bursitis and in both heels for heel spurs and those didn’t hurt. But the one in the shoulder hurt like a son of a hockey puck!! I had prescription Motrin to help w/the pain.
All during this time I was a guinea pig trying all kinds of medications and alternative and traditional therapies for Migraine Prevention and treatment. No combination seems to have helped so far. And all this time I still complained about neck pain but it was always glossed over and ignored. I was told “oh, it’s a part of the migraines-the migraines are causing it. I let it pass, like a fool. About a month ago after having a really bad experience with my current Headache Specialist who is a Neurologist, I sought out the help of a Pain Management Specialist. I was desperate. The neck pain was getting worse, even though I’m currently in PT and they assigned me a home cervical traction device that helps only temporarily. This doctor finally took my neck pain complaints seriously and ordered an MRI. I got my results last week and I have DDD-Degenerative Disk Disease in my 4th and 5th Vertebrae. I have arthritis settling in as well. I have some spurring and cartilage missing. And also the jack hammer ice pick Migraines I was having that no one else would pay attention to-well he finally did and I got a Bilateral Occipital Nerve Block. I was fighting one of those monsters and getting nauseated while waiting to see him on that day. Within seconds of those injections the occipital pain went away as did the nausea. He is waiting to see the results of this step before he will proceed with zapping those nerves. This coming Monday I will get more nerve blocks in my neck-Trigger Point Injections, to help with the neck pain I pray.
But I have suffered another set-back. Even though last week I was finally seeing light at the end of the tunnel, my Depression had to make a rude reappearance, and it made it big time. I thought it was under control with the meditation and other holistic approaches I was taking, but I do believe it started to skid out of control after my lack of care from my recent former Neurologist-he was not available for a major migraine due to medication withdrawal as he didn’t want to be quote “contacted for Migraine emergencies on a Friday” unquote from his answering service. And I refuse to go to the ER with a migraine and be treated like a drug seeking addict. So I had a major meltdown in front of my husband and daughter. Up until that point they never took the pain I was having serious until that night. I was at the end of my rope with all the chronic, improperly treated Occipital Migraines and neck pain. Even though this new doctor is helping this Depression is not letting up and seems to have gotten worse. With the Fibro and CFS the Insomnia has been really bad again. To the point I’m getting more forgetful, more clumsy, more touchy and more in the dumps. I can’t shake it off. When chronic Insomnia builds up it really damages the psyche over time.
When you are down and in your weakest point emotionally and physically, it’s easy for the dark thoughts to take over and crowd your mind. If the Depression is left untreated it can become really dangerous, especially if one has a history of entertaining thoughts of ending it all because the fight is too hard to maintain over a long period of time, and you just get battle weary. Battle fatigue sets in along with the chronic fatigue and pair that with poor medical care and poor pain management, well that is like throwing gas on a raging inferno if left untreated and unrecognized. After dealing with this for so long you think I would know better by now, but the subconscious mind is very powerful and oftentimes hard to break free from. And I don’t care how religious you are, until you suffer the unrelenting pain of horrible daily Migraines, if you haven’t been there you have no idea and have no right to judge that a person is not “Christian” enough to battle the demons of Depression. Support groups are essential for those in Chronic Pain. But recognizing and validating the pain someone is going through is sometimes better medicine than you could ever imagine.
The Social Stigma for Chronic Migraine Disease, Fibromyalgia, Chronic Fatigue Syndrome and importantly Depression has got to be put to an end! It’s the stigma and public perception, as well as the poorly educated Medical Profession, that makes people become more desperate and sink deeper into despair.
And if left unchecked and untreated it is an all-consuming anguish that some people think the only escape from the pain is to end it all. They cannot focus on other people or their “religion” because the pain is too severe and all-consuming. And if you have bad doctors who are not there when you need them the most, and no support from family and friends, you are more of an outcast than someone that has Leprosy. Getting people to understand that these “Invisible Illnesses” are real, legitimate and not just “in your head” is so vitally important. I know I can talk until I’m blue in the face to people, especially family and friends, but to no avail I get a blank stare and then get “unsolicited” advice on what I should try when in all due respect I’ve more than likely tried it more than once already in the past 25 years!! So please don’t tell me something I already know. I’ve been to a so-called “Headache Clinic” in the past and they do the same that all the other doctors do-turn you into a guinea pig and just experiment with different drugs. I was told to go to Mayo Clinic, but they don’t have the answers either. Why do you think they were partners in the launch of the current campaign :36 Million Migraine Campaign. Check out their YouTube video at this link:
I was so happy when I saw this on the National News when it was first launched with Cindy McCain, also a long-time Chronic Migraine Sufferer. This will hopefully bring more awareness, education and much needed funding to further develop Migraine Treatments. But also so that we can be treated with more respect and not less than 2nd class citizens.
If you know of anyone suffering Chronic Migraine Disease and think they are suffering un-Diagnosed Depression, or even if it is diagnosed, PLEASE do not tell them to “snap out of it” or “it’s all in your head”. You are just adding to the burden and the ostracism they are experiencing and will cast them further into that dark abysses of despair and desperation. It could very well add fuel to tragic thoughts they are thinking. When someone is Depressed and contemplating suicide it’s not a chicken way out, and they are not thinking what it will do to those that are left behind. They are too consumed with pain, anguish, untreated suffering and unrelenting Depression. They are not thinking like a normal healthy person because they are NOT healthy and may not be for quite some time. Not until they find a cure or better medication for this Neurological Disease. Please have empathy for us who suffer sometimes in silence. And offer a helping hand, not medical advice. But best of all be a friend in time of need and do not pass judgment. In reality all too sadly those who are in deep despair internalize their deepest thoughts and keep them hidden so as not to be labeled “Psycho” or “Psychotic”” or “crazy”. It can have tragic consequences. Just recently the Chronic Migraine Community lost yet another beautiful soul to suicide. We have to work to eliminate the stigma of Chronic Migraine Disease, Chronic Pain Sufferers-all those who have an Invisible Illness are ostracized and stigmatized and scared to speak up. Some are afraid of being locked up and institutionalized. Please don’t add to this stigma anymore and please help us fight to bring theses diseases to light and get rid of Stigmas.
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.
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.
He was very well educated and won many academic awards through his schooling. He was born to a Clergyman and raised in the rectory. He was the eldest of 11 children. He had a stutter but would be able to communicate with children fluently, so he targeted that audience with his most famous book “Alice in Wonderland” and in doing so put some of his Migraine Aura‘s to use with the characters that he came up with during his era. He was born in 1832 in Daresbury, England. He died in 1898 Guildford, England; http://www.biography.com/people/lewis-carroll-9239598
Carroll did keep a diary and mentioned some of what he called hallucinations and often complained about the vision in his right eye. He did seek professional treatment for it and was told to not read as much and keep by a bright light to reduce eye strain. But there are striking similarities to what Migraine Sufferers do experience during the Aura stage that proceeds the pain: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(05)74368-3/fulltext
Since I have always loved to read and love books I had to pick Lewis Carroll out of many famous Migraine Sufferers. He was a talented writer that took a disease and made it to his advantage and he still lives on in his books.
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.
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.
But yet people are Oblivious to this scientific backed information. A “regular” Headache cannot give you a stroke or kill you. And the fact it’s Neurological also bears fact that a Migraine attacks the WHOLE body and not just the head. Head pain is only ONE out of many symptoms of a Migraine Attack:
Sensitivity to sound, particularly loud sounds ”phonophobia”
A “regular” headache doesn’t cause any of the above symptoms. A Migraine sufferer will experience many of those symptoms and maybe more. The whole person as a whole is under attack. And yet the public continues to stay in their Oblivion to this Disease. Those who are not privileged to suffer the regular old run-of-the mill “headaches” are not bombarded with an overwhelming menu of Preventive Medications to try to control the disability that comes with Migraine Disease:
Methylergonovine, aka Methergine (the only ergot used as a preventive)
Leukotriene Blockers:
Montelukast, aka Singulair
Zafirlukast, aka Accolate
Zyleuton, aka Zyflo
Other:
Baclofen, aka Lioresal
Botulinum Toxin Type A, aka Botox
Medication for Alzheimer’s Type Dementia:
Memantine, aka Namenda
A person who suffers the occasional standard headache would not be prescribed any of the above preventives nor the following array of Abortive Medications:
Analgesic Agents:
acetaminophen (APAP).
aspirin (acetylsalicylic acid, ASA), which can be used alone or in combination.
These medication lists are just a sampling and are reserved for those who suffer Chronic Migraine Disease who cannot get relief from OTC Medications used for regular headaches. More medications that are not marketed for Migraine Prevention and Abortive Treatment are being tried on a daily basis. I don’t think they can even compile a complete lists because doctors everywhere are trying other medications out of desperation. Now some Migraine Patients have been advised they can utilize OTC WITH their medication regimen but it doesn’t take the place of. We use other “alternative therapies” along with our prescribed medications to help with our own care, but not take the place of regular Medical Care.
But yet the public still remains Oblivious to the chronic suffering of Chronic Migraine Sufferers. They prefer to see them as “drug seekers” “whiners” “complainers” “attention seekers” even going to the point of telling us it’s “all in our heads” “we’re making it worse than it really is” “get out and do something and you’ll feel better” “it cannot be that bad” or my favorite “can’t you just take a pill for that”. Even some in the medical profession still do not take Migraine Disease as a legitimate Disabling Neurological Disorder and will treat patients who come to the ER’s for emergency treatment. These patients in desperation are turned away, again labeled as “drug seekers” and treated with contempt. They too remain Oblivious even though there is more proof it is a “REAL” disease. And yes, it can prove fatal to some who can get no help for their chronic condition, who can not get relief from the relentless pain, and they will tragically take their own lives to escape the ridicule, disdain, mistreatment, mismanagement and isolation: http://www.puttingourheadstogether.com/2013/06/dont-tell-me-migraines-dont-kill.html
Enough is enough. People, stop being Oblivious and open your eyes. Become educated to the plight of Chronic Migraine Disease. Don’t walk around in Oblivion to the plight of those who are suffering and need support.
THIS SITE DOES NOT CONSTITUE NOR TAKE THE PLACE OF PROFESSIONAL MEDICAL ADVICE. PLEASE SEE YOUR OWN PHYSICAN FOR DIAGNOSIS AND PROFESSIONAL CARE. I AM ONLY A BLOGGER THAT LIKES TO DO RESEARCH ON MY OWN AND SPREAD THE WORD TO GET THE STIGMA OF MIGRAINE DISEASE TAKEN AWAY, AND EDUCATE OTHERS AS WELL AS MYSELF.
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.
Star Trek: Generations: What role do Migraine/Headache Disorders play
in your family history? Do others live with it? Does this make a difference in
how you talk about it?
I have inherited the genetic makeup from my parents for Migraine Disease. My dad had them when he was young, before his teen years, but in that age they called them “Sick Headaches“. He would get the horrible pain in the head and sick at his stomach. He said after he would throw up he’d start to feel better and slowly it would fade away and be gone the next day. He said he stopped having them when he became a teen. My mother developed Migraines during her Pre-Menopause and during Menopause stage of life. She started early in her mid to late 40’s. I do remember going over to visit (I had moved out then as I was married in ’82) and she’d be in a dark room we called The Den with wet wash cloths, ice pack and at that time the only thing they prescribed for her head pain was Darvocet. It didn’t work very well for her and sometimes she would get very nauseated and they didn’t give her anything for it. My sister was still home at the time as she is 9 years younger that I am so she witnessed the brunt of it. But it would take my mom a couple of days to fully recover. They didn’t have any information back then on Migraine Preventive, Triggers or Abortive Medication. I started doing some research on my own at that time and they were slowly coming out with possible food triggers and at that time they were only reporting Nitrates and starting to uncover MSG. We would have heated debates over what I told her she could not eat and she would refuse to give up those foods stating “I’ve eaten them all my life and never gave me trouble so why now”? I remember being so frustrated and after a few head-to-head disagreements I gave up. There was no getting through to her. But I did not know I was gathering info that I would later have to use at that time.
My sister started getting Migraines in her teenage years. She was just like mom at the time-would not give up her favorite foods. My family stubbornness runs deep and hard to break sometimes. She still gets them from time to time and I’ve heard her horror stories of trips to the ER for intervention and I vowed I would NEVER go to an ER and be treated that way! I started getting Episodic Migraines in the mid to late 80’s, exact year I’m unsure. It was a couple of years I believe after the birth of my only child in ’85. My 1st one I remember I felt like I was dying, rolling around on the bathroom floor near the toilet. Pure agony and the only thing I had was Excederin. Didn’t touch the pain! Tried Tylenol. Nope, didn’t work either. My parents having experienced them 1st hand and knew the agony I was in-well my dad hopped into the car and drove me over some of my mom’s Darvocet. I know it’s a no-no to share medication but I was so desperate.
A little while after that is when Imitrex 1st came out. Of course my PCP gave me an RX for it and of course as it was a new drug the insurance would not cover it as I found out when I filled it so I had to pay full price for 9 pills. I remember vividly at K-Mart Pharmacy in Niles squeaking out loud to the pharmacy tech ringing up my bill “what, $175.00 are you flipping nuts”???? I was over a barrel and had no choice and paid for it. I think at that point I was debating which is worse-the money or the head pain? I was very stingy with those pills and took them as a last resort, which was not a good idea. But they were just too expensive and could only get them filled once a month. Yep even back then the insurance had limits on what you can fill monthly. In 2010 I became Chronic having Migraines daily at what is now considered my “norm” of a level 5 and I take my abortive med when the pain escalates at least 2 times a week to a 8-9 and sometimes 10. When it’s gotten so bad and nothing will touch it I have gone to the spare bedroom or bathroom and laid on the floor rolling and crying in pain as I still refuse to go to the ER. Just earlier this month for the 1st time I called my Neuro after hours emergency phone number on a Thursday. Never got help after many , many calls until that following Monday when they called me to admit me into the infusion center. The migraine was still raging and I went, but I’m shopping for a new doctor. What kind of doctor would leave a message with his phone service that he will not accept calls on a Friday for Migraine Emergencies when he specializes in Migraines? Go figure.
Things have come a long way since then but the cost of the medications are higher, there is still a really bad Stigma about Migraine as a legitimate disease. Some doctors are still not educated in Headache and Migraine Disorders. Patients still have to research online for alternative treatments, medication options and medical procedures to take to their doctor. More information is available online as they are slowly learning more about this horrible disease. But we need to get the word out about how debilitating this disease is and how many people it affects and get the Stigma taken away from it. It’s not “all in our heads” and it won’t just go away with a OTC med in a majority of cases. It’s a neurological disease that affects the WHOLE body.
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.
The Chronic Migraine Awareness Group (CMA) lost a kind, warm, loving, beautiful and generous soul this past Friday. But her family has lost so much more-a daughter, sister, granddaughter, niece and best friend. After a long battle with Chronic Migraines and Chronic Illness, she could no longer take the pain anymore. As a close-knit online community we are truly devastated by her loss. A tragic loss that could have been prevented if there were more awareness of the debilitating pain of Chronic Migraine Disease-that the pain is real and it takes a toll on a person’s life as the pain and suffering is never-ending. People need to realize that Migraines are not “just a headache”. It is a REAL neurological disease that not only involves excruciating head pain, but has many other symptoms as well: Partial or total loss of peripheral vision in 1 eye, dizziness/vertigo, persistent nausea, chills, stomach pain, painful stimuli to light, sound and smell. The list goes on. Even those in the Medical Profession have stigmatized Chronic Migraine and when a sufferer goes to the ER when their at home rescue meds fail, oftentimes they are turned away after a long wait and treated with contempt and disbelief-they (we) are often treated as drug seekers and treatment to ease the pain is withheld. Even with primary care, neurologists and headache specialists the standard of care for Migraine Disease is poor, to say the least. So everyone with this dreaded disease is often cut off and left to suffer alone, which adds to the despair.
Melissa reached her breaking point, and even though she counted on her mom as her true friend who stuck by her through thick and thin, she still could not find relief from her chronic non-stop suffering and chronic pain. This is a tragedy that could have been avoided if there were better awareness and better treatment and medical care for this God awful disease. I pray they find it soon before we lose another beautiful, loving and precious soul. God now has a beautiful angel, but she has gone far too soon. Prayers to her mother and the rest of her surviving family and friends as they try to cope with this senseless tragic loss. And we in the CMA community also will try to come to terms with this tragedy and will not let Melissa’s death be in vain. God’s Speed Melissa. RIP.
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JulieG350 A Day in the Life with Migraines 