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Living with Migraine

Dealing with misinformation and ignorance

  • By SK

    I suffered migraine without aura when I was a teen. The headaches disappeared through my 20s and 30s and then gradually returned and worsened after a bad case of the flu and later the same year a surgery to repair a retinal detachment – about 3 years ago. The eye surgery seems to have been the biggest factor in the return of my migraines.

    About 50% or better of my migraines are silent. For the last three years I’ve dealt with a GP who insisted my ongoing digestive issues were just IBS, and that I was just an anxiety sufferer. He tried me on all kinds of anxiety meds…of course nothing worked. Then one night I suffered an incident of paralysis, lasted about 5 minutes but I absolutely could not move my legs during that time. It has never happened since. My GP finally started paying attention and referred me to a neurologist. I was screened for MS, stoke, seizure and about every autoimmune disease known. My neurologist finally decided I likely had two problems, 1) Migraine with aura, and 2) thoracic osteoarthritis. Some of the symptoms have resolved since I started seeing a NUCCA chiropractor on a regular basis, the other symptoms/auras remain.

    Triggers seem to be wine and alcohol (pretty much any aged food), weather changes or changes in altitude, menstrual cycle, and the eye surgery left me with retinal migraines, of which 90% are silent and the other 10% produce a mild to moderate left sided headache – no clue what triggers the strictly retinal migraines, theory is that it is eye strain or perhaps my ongoing problems with dry eye. Visual disturbances range from mirage like hallucinations, to brief flashes of light in my central vision (eye surgeon says they are not connected to retinal tear or detachment), blurred vision, scotoma, halos etc. Weather related migraines seem to set of a different chain of events, usually the left side of my face goes numb, I drool a little and get this awful metallic taste in my mouth, usually followed by a sledgehammer headache (I call this particular one the Stroke)…but not always. Wine…well…food triggers just seem to skip the aura and go right for the sledgehammer headache. That leaves the worst of the triggers, my menstrual cycle. These auras are never consistent and range from feeling shaky and dizzy, to nauseated, to feeling like my legs are suddenly half their normal length, ear pain, jaw pain, visual auras, noise sensitivity, sensitivity to various odors, and sometimes sensitivity to touch, confusion, digestive issues (my GP continues to blames these on IBS), sudden irritability and mood swings.

    If learning to deal with scary neurological issues isn’t enough, I’m finding I have to deal with ignorant migraine free co-workers and family members who all think migraine isn’t a migraine without the headache. They think I’m faking it or slacking. HA!!! I wish they could all experience what I do when an aura hits, sometimes the end phase of the migraine cycle is worse for me than the headache when it does decide to make an appearance, (lethargy/fatigue almost feeling like I’m recovering from the flu is only solved by going to sleep for a few hours). I’d love just once for my co-workers and bosses to have to try to communicate effectively during an episode or to just walk from point A to point B when they’re legs feel like they’re half their normal length. Family members don’t understand how I can feel bad so often and not have a headache. I get pushed into activities I don’t feel up to doing by family members. I get pushed into driving elderly family members who can’t drive when I probably shouldn’t be behind the wheel myself.

    I’ve made it a policy to cut those out of my life who are not supportive because I simply don’t have the energy to deal with them anymore. That has helped some. Little harder to do this with elderly family members but I’m learning to say no more effectively and pushing them to public transportation options. That leaves my co-workers and boss. I work for a law firm, which means episodes that impair my ability to communicate effectively are really starting to affect my job, not to mention my attendance record is not so good at this point either. I worry daily about getting fired. I eat regularly during the day now, which includes not skipping breakfast like I used to. I take magnesium supplements regularly. All of which helps some but none of that solves ignorance I keep running into. “You look healthy. You can’t feel that bad!”, “How can you feel bad so often?”, “If you didn’t want to go just say so, don’t make things up about having a migraine you obviously don’t have.” etc etc etc.

    How to you keep going on the job when you have to work and live with people who don’t understand and brush you off when you try to explain that migraine is more than just a headache and that migraine can be just as individual as the person suffering them? I’ve been looking for a new job, something a little less stressful and a little more flexible, but am running into the “you’re overqualified for this position” and “I don’t think you understand exactly what job you’ve applied for”. Its frustrating. and I’m beginning to think 1) I’m going to have to go back to school and train for a different career at this point and 2) move to Alaska to gain some relief from the demands of my relatives.

    S.K.

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  • By Meaghan Coneys Moderator

    Hi S.K.,

    Thank you for your post and thank you for sharing so openly and honestly with us here at Migraine.com. We are happy you are a part of our community. It sounds like you are experiencing many symptoms related to chronic migraine that significantly impact your daily functioning and relationships. I am so sorry to hear this. Please know we are here for you, and we definitely understand you. Chronic migraine can be so debilitating as well as frustrating as the condition in itself is often misunderstood by those around us. I thought you would be interested in the following article, as perhaps you can relate to the writer – https://migraine.com/blog/30-things-holly/. Also, the following articles discuss ways to cope with family members who misunderstand or are unsupportive of chronic migraine symptoms – https://migraine.com/blog/holiday-migraine-management-accepting-the-limits-of-family-friends/, https://migraine.com/blog/family-and-friends-that-do-not-understand-migraine-disease/, https://migraine.com/blog/the-support-of-friends-and-family/. You mentioned struggling with work. The following articles discuss ways to cope at work and workplace accommodations -https://migraine.com/blog/community-ideas-managing-at-work/, https://migraine.com/living-with-migraine/migraine-and-work/, https://migraine.com/blog/migraine-workplace-horror-stories/, https://migraine.com/blog/migraine-disclosure-work/, https://migraine.com/blog/migraines-and-unexcused-absences-from-work/, https://migraine.com/migraine-basics/ada-accommodations-the-workplace/. I hope you find them helpful. Additionally, the following articles provide self care tips for managing symptoms while in the midst of an attack – https://migraine.com/blog/a-list-call-for-creature-comforts/, https://migraine.com/blog/community-responses-what-are-your-go-to-techniques-that-bring-you-comfort/. Maybe you will find something helpful in there to ease some of your symptoms. Again, thank you for sharing with us. We love hearing from you so please continue to reach out when needed. Sending loads of good energy your way.

    Warmly,

    Meaghan (Migraine.com Team)

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  • By Delaney

    For what it is worth, you still get ignorance even if you have migraine with the headache. Telling people that you have “a neurological disorder… Sort of like MS…” can help set the tone for something unpredictable or varying yet serious. Re: the jobs, try “I’m dealing with a health issue in my family so need a good work/life balance right now.” Good luck!

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  • By leb212

    Hey SK, just wanted to let you know that I have experienced allllll of these feelings. You are not alone and you are not strange for feeling this. Migraine disorder can be so, so, so, isolating. I totally know where you are coming from.

    You have to find what works for you, but just in case it helps, something that has helped me is to 1) sort of stop expecting as much out of others (except for your very nearest and dearest) in terms of support, and 2) as much as you can, remember that you don’t have to appear strong and “together” at all times. These were huge hurdles for me to jump, and they still are. I get so, so, so tired of suggestions from everyone under the sun telling me what to do for my migraines (“have you heard that sleeping in causes them?…. have you ever tried cutting out caffeine?… did you know diet coke can cause migraines…”)……. it could not be more exasperating.

    I look at chronic migraine syndrome as a disease. When this is your life–constantly warding off, or dealing with, or recovering from migraines in all their many forms–it is a disease, no less so than Lupus or Crohn’s Disease or others. And honestly, not having those diseases, I don’t understand them fully and have probably said annoying things, without realizing it, to people who suffer from those diseases. Sorry to ramble a bit. But it helps me just to understand that people are misinformed, uneducated, and don’t have compassion until this really enters their life in some close way. I have lost many friends and close relationships because of the lack of understanding, and like you said, I don’t have the energy to waste on convincing someone that I’m really sick or that I’m not a flake, but that I’ve been curled up in a ball on the bathroom floor for two days.

    On the second thing I said, I don’t know if you’re like me at all but I always felt this need to present a strong, healthy, trying-my-best front, and I don’t have the energy for that anymore either. Sometimes it’s honestly opened the door to understanding and compassion when others truly experience a piece of what I’m going through–my friend learned more about migraines when she had to drive me home from the beach and pull over three times for me to throw up. My dad learned more about migraines when I ran out of medication allowed by insurance for the month, was in the middle of a 3-day migraine, and he picked up my $200 prescription and a bottle of gatorade for me, realizing how costly this disease is for me. One of my former coworkers realized I wasn’t kidding about a loss of vision when I asked her to drive me home from work because I could not see.

    All this to say… you must be incredibly strong and courageous to live each day, knowing that some days are going to be ok, some good, and some horrible, but you have kept the fight and thus to an extent kept the faith. Believe in yourself; as much as you can, thank and give generously to those who do understand, and try your best not to live your life trying to explain everything to everyone. I wish you the best! Hang in there.

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  • By Jojiieme

    (Haven’t been back for a couple of weeks; appreciate the log-in changes)

    Hi SK
    Just wanted to quickly comment on your passing remarks re wine and aged foods: you’ve worked that you’re allergic to tyramines. Yep, allergic, not intolerant. There isn’t a specific test for it, so it’s hard to prove with IgE, but it is an allergy; I have it too.
    This means hard yellow cheese is out; vinegar is out; miso and soya sauce is out; marinades, dressings, fermented foods; sliced cold cuts & sausage meats; pre-prepared meals; most beef; shellfish, frozen foods, most fish that is not sashimi-grade.
    You need to watch your glutamates and nitrites too: particularly in the USA, because your packaging and labelling laws are different to those here in Australia, so your chances of accidental cross-contamination are much higher. This means being exceptionally aware of additives, colourings and flavours especially when they’re “natural” because what we react to are natural food chemicals. They’re often added because they’re antioxidants, and flavour enhancers.
    If you can, find a copy of the Failsafe/Friendly Foods low food chemicals diet, and try 3 months on that. (I got mine from the Royal Prince Alfred Hospital website, on my immunologist’s advice) most people don’t last 3months!
    I’m really excited because I started on 18 Feb (readjusting after discovering that my ‘safe’ foods had been recategorised 20yrs ago). So my 3 months are just up. Migraines radically changed, and I can work through most of them (I work part-time). My night-time meds were changed today!!! REDUCED! 😀 Half the nortriptylene and no more verapamil! Woohoo! We review topiramate in 8 weeks, and then the daytime doses.
    (Full disclosure: I’m on the strictest levels of low food chemicals. But it’s worth it, and mostly I don’t miss anything. If I do, then I know something’s brewing. Oh, and my old Rescues stopped working because they were loaded with stuff I can’t tolerate: gluten, dairy sugars, colours, buffers, flavours, emulsifiers…)

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  • By Jojiieme

    Leb212, if you’d told me at the beginning of Feb that I’d be drinking decaf coffee by June I’d have laughed in your face! Never thought I reacted to it; I’d been tested and was OK, had gone off without withdrawals, and also used it to help stave off worsening auras.
    But my immunologist said only one full-strength cup a day, and the rest decaf. Even though I use beans. She also said rice ‘milk’ (a particular brand for here, you’d need to check for there). And she limited me to one teaspoon of sugar a day, total, no matter what I consume. (Luckily I don’t sweeten my drinks)
    While there’s comfort in the rituals of making tea or coffee, the combinations of the tea/coffee, dairy, sugar overstimulate a migraineing brain… The rush of micro nutrients and glucose helps to tip us towards the precipice… In my case, the glutamates needed for neurotransmitters to message the immune system and make pain messages is just too much, and I basically mentally collapse.
    I tell you: half an hour with her, it’s like a night at the theatre! 😉

    Oh, and SK: it’s taken a while, but my boss has finally seen my “migraine faces” and seen me being the realer-me. She can finally tell the difference, and I no longer feel guilty when I say “it’s a migraine day, and this time I think I need to leave early’.

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