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Diagnosis of Migraine & Headache Types

When Healthcare Profressionals Don't Listen

  • By Wolfe837422

    I’m 30, and have had migraines since I was 14. The hardest thing I’ve found in my entire experience with migraines is getting healthcare professionals to listen to me. Unlike most, I don’t experience the nausea, or the aura with my migraine, but I will wake up with them in the middle of the night and it feels like someone is shoving a white hot poker through my left eye. While I do wear corrective lenses, my ophthalmologist says there’s nothing wrong with my eye to be causing this, but because the biggest symptoms I experience are photosensitivity (photophobia), hot flashes, and the inability to focus, they brush it off and tell me to pop a Tylenol.

    I’ve been to 6 different doctors trying to find something – anything – that will help, but have pretty much been left to deal with this on my own. Almost all of them have told me that light isn’t a migraine trigger, but for me it is. The other hard part of it is, I have a very high pain tolerance, so a migraine I would describe as a 5, or 6 on the pain scale, is the same level that would have my friend running to the ER for hers. We both have migraines, but on some level, it seems as though it’s easier for someone who has a lower pain tolerance to be taken seriously by doctors.

    Roughly two out of seven days a week, I’m wearing an eye patch over my left eye just to lessen the amount of light that gets in. The migraine at that point will become worse in the sense that it is all-over instead of the pinpoint pain when I have both eyes uncovered, because my right has to compensate for the loss of vision. I don’t know if it’s just my experiences, but it seems that if you don’t go in screaming or crying in pain, the doctors don’t listen.

    The OTC medicines that are out there – Excedrin migraine, and Bayer to name a few, have no effect at all on my migraines. They don’t even take the edge off. I have Vitamin B12, and D3, but those don’t seem to do much. I’ve honestly gotten to the point where I’ve given up on doctors completely and am just dealing with it the best I can on my own. ‘Cowboy up’ as they say.

    ~Wolf

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  • By Nancy Harris Bonk Moderator

    Hi Wolf,

    You shouldn’t have to “Cowboy up” when you’re in pain, that’s just not acceptable. We hear this story all too often – doctors who don’t seem to know what to do for people who have more than an occasional migraine. Let me see what I can do to help.

    Even though you have seen six doctors and I’m sure don’t want to see anymore, you may not have seen the correct one. Let me explain – migraine and headache disorder specialists are THE experts who treat one condition – migraine and headache disorders. Neurologists may be very good doctors, but have a hard time being experts in one area (even though they are certified in NEUROLOGY) because they treat so many different conditions such as multiple sclerosis, stroke, epilepsy, Parkinson’s and others. Migraine/headache specialists have extra board certification in headache medicine and will have the most current accurate information on migraine/headache disorders. Take a minute to read these links for more information; https://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/looking-for-a-migraine-specialist/.

    These expert doctors will tell you that light, sound, certain foods, odors, changes in the barometric pressure, skipping meals and many other things can trigger a migraine attack. It’s important to know what our triggers are so we can avoid the ones we can and try and cope with the ones we can’t avoid. Let me share this information on triggers with you:https://migraine.com/blog/migraine-management-essential-trigger-management/.

    I’m not sure how often you are taking something to relieve your pain, but we can create another problem that is truly awful – medication overuse headache or moh. Moh can occur if we take pain relievers and/or migraine medications, whether they are prescription or over-the-counter, more than two to three days a week. If we have moh our migraines will be much more difficult to treat and we will commit ourselves to an endless cycle of daily pain that too is hard to get rid of. Here is information on moh I’d like to share with you; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.

    I hope this helps and please keep me posted on how you are doing, OK?

    Nancy

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  • By Wolfe837422

    Hi Nancy,

    Thank you for this, the articles truly do help. I’ve gotten to a point where I only take medications, specifically Midol and Advil when it’s that time of the month. Nothing works for the migraines at all, so there’s not much of a point in taking anything for it. I’ve been looking at the list of headache/migraine specialists in my area, and am trying to find one that’s accepting new patients. That can often times be the hard part.

    Until I saw this article https://migraine.com/migraine-types/migraine-with-aura/ I didn’t know that there was more to aura than flickering lights or seeing a brighter outline to objects. Not one doctor I’ve seen has ever asked me if I get blurry or cloudy vision, or loss of vision entirely, which is what frequently happens with mine.

    I’ve downloaded a migraine journal to keep track of. Hopefully when I find someone that specializes in this and can set an appointment, the journal will make them listen. I’ve heard from a few people around me with migraines that they had to fight with the doctors to make them listen, and it almost seems pointless, to be honest. If you have to fight with someone to make them believe what you’re saying and understand that you’re in pain, how effective will their treatments actually be?

    Wolf

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  • By omymigraine

    My doctor too will not listen. When I tell him I can identify at least 4 different kinds of migraines I have. I have clusters..ice pick and thunderclap. I have aura and no aura. I think that the one I have that makes me photo phobic, pain to my eye to the back of skull and it changes sides! Nose running and eye tearing up and nausea, sometimes my mouth and eye droop. Fioricet works for 2 hours tops but only with the aura type. Cluster do not even phase by it. He told me it was in my head. lol no pun intended. I am 51 and have been having these headaches since i was in my 30’s. They progressively got worse. I have been to the ER for demerol and phenagren coctails. they work but knock me out for days. Sunlight and fluorescent like ballasts that flicker trigger me. Perfumes trigger me ( cinnabar and sandelwood) mostly.
    msg, red , blue green and yellow dyes are a trigger. Aspartame has no effect so far. I tried topamax i had almost all the bad reactions listed. Topamax actually made the migraines worse.

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    • By Katie M. Golden Moderator

      @bneill,
      When your doctor doesn’t believe you, it’s time for a new doctor!! Are you seeing a neurologist? Do you know about Headache Specialists? These are neuros who have specialized training and only see headache patients. Here’s more info:
      https://migraine.com/blog/how-are-migraine-specialists-different/

      You have quite a few symptoms and it is likely that you suffer from more than one type. Due to your complicated symptoms it’s so important to have a doctor that can help you weed through them all to come up with a proper treatment plan.

      On another note, Have you ever used oxygen during an attack? Sometimes that can help with Cluster Headaches.
      -Katie
      Migraine.com Moderator

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