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My insane migraines……

Hi, I really don’t know where to start. I guess I’ll start by saying I never had ANY major health problems till I was diagnosed with an autoimmune disease “Guillain Barre Syndrome” back in 2008. Well after a relapse and another hospital stay and physical therapy thats when my migraines started. At first they came just now and then but have gotten worse over the years to the point of almost being homebound completely. I have been told I have high levels pf protein in my spinal fluid and that is what is causing my constant daily headaches and my insane migraines that hit me mostly without any warning at least 3-4 days a week. They are so bad that I pass out from them, I’m always dizzy, no balance and fall down a lot. I don’t have any specific triggers that I can track and stay away from since I’m never without a headache I don’t know. Sometimes smells can send me off the deep end and then other days I can’t name a thing. It just hits me like a wall and I’m in bed for a week. I have taken almost everything the doctors have prescribed me till at one point I was taking 13 different meds a day. I finally got off of all that but can’t find anything to help. I usually give myself Immetrex shots to help abort my migraine but they have started to not be as affective….I feel like my doctors just don’t listen…I have researched this till there is almost nothing I have not read, and with my protein levels being so high but my WBC count normal there seems to be some type of nerve damage. Since my autoimmune disease attcked my nerves, it seems like that could be a reason. I tell my doctor what I believe and nothing…like I was talking to the wind. I need help! Has anybody ANYBODY had or heard of migraines like mine?

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  • Katie M. Golden moderator
    4 years ago

    Anne raises a good point- have you had an MRI? Since your doctors believe there are high levels of protein in your spinal fluid, I’m assuming you’ve had a spinal tap at some point? Do your headaches ever get better when you lay down? There is a condition involving the spinal cord and Migraines, but usually it gets better when you lay down. If they are happening 24/7, then I doubt that’s the cause.

    You clearly need to go see a Headache Specialist. The docs you’ve been seeing haven’t addressed your issues. Here’s information on these special types of neurologists:

    While it’s not fun to spend so much time in a waiting room, get a second or third or forth opinion until you find someone who will help you. You deserve that.
    -Katie Moderator

  • khorne author
    4 years ago

    YES I have had MRIs and spinal taps, my last doctor was hoping reliving some of the pressure of my spinal fluid would help but it didn’t. Thank you for the information 🙂 its so hard to keep going like this..I know I can’t give up though,there has to be something out there that will give me some relief I just have to find it. I’m just so confused about it all because none of my symptoms seem to be like any of anybodys I have read about or talked to.

  • Anne
    4 years ago

    Do migraines run in your family? It could be that illness just coincidentally coincided with the migraines. I know because migraines are so painful and disruptive, we look for a reason they’re happening. If migraines don’t run in your family, have you gotten an MRI?

  • khorne author
    4 years ago

    Yes I have had countless MRI’s and they keep saying everything looks normal….and no migraines don’t run in my family, I pray my kids don’t end up suffering with this!

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