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Family and friends don't understand

I have suffered with chronic migraines as long as I can remember. I remember in kindergarten going to the nurse almost daily with one and having sensitivity to all my senses, as well as severe nausea. I am 21 now and still dealing with migraines about once a week. I got a daith piercing and I helped with the pain on one side of my head for a few months but they have returned with even worse symptoms including blurred vision and dizziness as well as fever and trembling. I have seen a Dr for my migraines and he prescribed sumatriptan. I had a severe reaction to it and he said he didn't know what else he could do for me.

I miss work at least one day a week due to my migraines and I know my boss is extremely frustrated about it. I am worried that I may be fired soon because of missing so much. My family is also upset with me because they think I need to just "toughen up" and go to work. None of them have ever experienced migraines. They constantly give me suggestions of things that they're "sure will work" like "just drink more water" or "just go to bed earlier."

I don't know what to do since no one I know seems to experience migraines the way I do.

  1. Oh gosh, I am so sorry you seem to be surrounded by very uneducated people. Let's tackle these things one at a time. For family and friends, I might send them to this site to do some reading, or print some articles from here.

    Your doctor (I'm guessing this was not a headache specialist??) only tried sumatriptan? Have you ever tried any preventatives? (topomax, anti-depressants, beta blockers, etc) If you're having one migraine per week, sounds like you need to go see a neurologist for your migraine care. "Sumatriptan and that's the end of the road in migraine treatment" almost made me start laughing if I didnt' feel so terrible for you for having probably cried when you heard that answer. That's like suggesting mankind will never invent that pesky wheel. There are tons of medications to try. Get thee to a neurologist, a headache specialist if you have one in your area since they're the most knowledgeable.

    Staying hydrated and keeping a good sleep schedule are good (well, for everyone) migraine hygiene, but they do nothing to cure the fact that some people have migraine disease and some do not. And to imply you need to toughen up (especially when said by a clueless person without migraine who isn't experiencing pain) and that's the solution is just stupid. You need to get yourself to a non-idiot doctor who can assess you and get you on a treatment plan to get your migraines and pain managed to the best degree they can.

    And with idiot boss. Put everything in writing. Get a voice recorder if boss likes to come in and rant about you missing again. Save emails or texts or phone messages. Don't resign.

    1. Hi Em.Smith,

      Thank you for sharing your story with us and being part of the discussion forum!!

      I'm sorry you are having a rough time right now. I understand how debilitating and frustrating a migraine attack can be - you're not alone!

      One of the best things we can do for ourselves is to get an accurate diagnosis. There is no image study or blood test that can detect migraine disease; it is diagnosed after a qualified doctor gives you a complete exam, goes over your symptoms and discusses your medical history. Once we have an accurate diagnosis we can learn about our disease and get the correct treatment. There are over 300 different types of migraine and/or headache disorders and it's possible to have more than one. When you get a minute take a look at this article;

      Now a word about doctors, if I may. GP's and neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many different conditions like multiple sclerosis, stroke, epilepsy, Parkinson's and others. Migraine/headache disorder experts are just that, experts who treat one condition all day, every day - migraine and headache. These experts are board certification in headache medicine (different than being certified in neurology) while all neurologists may not be. Let me give you some information on how migraine specialists are different and how to find one; and

      If we have four or more severe migraine attacks a month, it's time to discuss migraine prevention with our doctor.There are over 100 medications and supplements that can be used to treat migraine disease; try not to lose hope! Let me share information on migraine prevention medications before we talk about doctors:

      There are other triptans that can be tried and it would be great to have a knowledgeable doctor to help you with this. I've been through ALL seven of the triptans and cannot tolerate the pill form. I however have great luck with sumatriptan nasal spray! Here is more information on triptans;

      I'll stop for now so I don't totally overwhelm you! Please feel free to ask questions after you go over that information!

      1. Hello! Thankyou so much for sharing your story. It is really great and helpful.

        1. I know what you mean. I feel like no one understands. I am sorry that you feel like you do and sorry you have to go through that migraine cycle. Just know you aren't alone.

          I get so sick of it, of feeling so misunderstood. And I don't know about your family and friends, but mine get an attitude!

          Like I can help it.

          My husband is great through, even if he tells me to "just go to bed." He is a real sweetheart and he sincerely thinks he is helping me because I tend to power through pain and keep working. He is just trying to encourage me to take care of myself and I know that. But it doesn’t make it better.

          I HATE that vicious cycle of falling behind when I have an attack then struggling to catch up. I lose a day or three or a week and come back to an impossibly full email box, overdue projects, and all sorts of “fun” surprises.

          This last time, just a couple of weeks ago, I wound up in the hospital. When I returned my phone has done this upgrade and now it randomly labels phone calls and texts as spam. I am finding legitimate, IMPORTANT texts in this spam folder.

          I don’t need that stress.

          I lose my vision too, so that's fun.

          This article helped me a lot It has a lot of good information from a psychologist who works with people with chronic pain. She has some good ideas. I tried some of the stuff and feel a little less flustered with the process.

          Have you worked with a doctor to try to find an abortive or, better, a preventative? They have headache specialists. I once read an article on how to find one and it has a link to a database. I can't put my hands on it at the moment but if you are interested, let me know and I'll find it.

          Another thing that helped me was migraine glasses. Have you ever tried them? I got mine from Axon Optics and I love them.

          I wish there was more information educating the non-migraineurs around us. I feel like parents, spouses, employers, and friends would act a lot differently if they understood the condition better.

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