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My Dr doesn't know what's happening to me

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Bexwarnke24
Bexwarnke24

I've had migraines since 13, I am now 30. Two years ago I was diagnosed with vertigo. Only it's not vertigo and it's been getting worse. I will feel fine one minute, then the next thing I start getting extremely dizzy. My face starts to tingle and get a cold sweat. My arms and legs tingle and ger very heavy. I can't move. I can't lift my arms or legs. Sometimes I shake. Not alot. But it's all uncontrollable. I get very nauseated and extremely dizzy. While all of that is going on, I can't talk. My speech is so slurred and my vision blurs and doubles. It's almost like I'm very drugged up, but I'm not. Dr says it's aura symptoms from my migraines. Why would it change so suddenly? Why am I experiencing paralysis when these attacks come. It gets so bad I can't hold anything, or even look around with my eyes. Otherwise it gets worse. These attacks have always lasted no more than 3-5 hours at a time but they are becoming more frequent. My blood pressure has been checked, heart, I've had MRIs, cat scans.......the doctors don't know what causes it. Please help. I can't live like this anymorw.

1 like, 21 replies

21 Replies

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  • margaret22116
    margaret22116 Bexwarnke24

    Posted

    Hi. I had similar migraine attacks with auto immune disease. If you have other problems like gi issues or joint pain or other symptoms ask for a referral to a rheumatologist.
    • Bexwarnke24
      Bexwarnke24 margaret22116

      Posted

      I was just diagnosed with Fibromyalgia. I deal with a ton of pain in my hips and lower back. And yes, the GI issues are there as well, unfortunately. Thanks for the advice. I will talk to my Dr about seeing a Rheumatologist.
    • margaret22116
      margaret22116 Bexwarnke24

      Posted

      Yes do. Fibro very common in auto immune sufferers. Have a google of migraine in Lupus. Not saying you have Lupus but a lot of forms of vasculitis can cause that kind of migraine symptom. I have Behcet's disease and get it. Bloody awful. Often misdiagnosed as hemiplegic migraine.

  • StevenRose
    StevenRose Bexwarnke24

    Posted

    Hi,

    Yes I can understand why the symptoms are so distressing they mimc a stroke, and your symptoms match mime as well.

    They told me its called Hemiplegic Migraine and I get admitted to hosp everytime as they think its a stroke.

    Since starting Botox and taking Flunarizine at night, the attacks have reduced considerably.  I havent had an attack since January!

    But when I get these symptoms my GP always tells me phone for an ambulance as you dont know and neither do the paramedics, if it is a stroke or not.

    Good luck and hope I have been of some help.

    Best wishes

    • Bexwarnke24
      Bexwarnke24 StevenRose

      Posted

      I've never heard of a Hemiplegic Migraine before. I will definitely have to look into that. Thank you so much. My Dr did say my symptoms are imitating strokes. But we have no proof of said stroke. I have not gone into the doctor when I have these attacks. I can't move, walk, talk, drive. I can't afford an ambulance ride, so I ride it out at home. Thank you so much again! I will look into what you suggested!

    • Bexwarnke24
      Bexwarnke24 margaret22116

      Posted

      Thank you. I will put that on my list if notes for the doc. Do you know if the Hemiplegic migraines are reversible? How does he check inflammatory markers? Does it hurt?
    • StevenRose
      StevenRose Bexwarnke24

      Posted

      I take it you dont live in UK, when you say you cant afford an ambulance?  You need a specialist headache neuro to diagnose HM really as many drs dont even recognise it
    • Bexwarnke24
      Bexwarnke24 StevenRose

      Posted

      No, unfortunately I don't. I have always wanted to visit. We have five children and I was on medical leave for six months. I went back to work for two months and then had to quit. I can't afford much right now.

  • margaret22116
    margaret22116 Bexwarnke24

    Posted

    Get him to check inflammatory markers too x
    • margaret22116
      margaret22116

      Posted

      If it is auto immune related not likely to be hemiplegic migraine but more likely to be something auto inflammatory like mine. My migraine was controlled with immunosuppressants and interferon. But there are various treatments. Inflammatory markers are est and crp and also worth checking ana.

      Do you get anything like flushing in your face or upper torso?

      Or do you have dry eyes/ mouth or any recurring ulcers/canker sores?

    • Bexwarnke24
      Bexwarnke24 margaret22116

      Posted

      . I get flushed in the face right before an attack and during. It also happens alot when i get dizzy. It happens alot inbetween as well. I have had so many canker sores in the past year and I never use to get them and yes I have dry mouth and dry eyes. I use droos for my eyes and I usually chew gum to help with the dry mouth. I get very weak and tired for days after an attack too.

    • margaret22116
      margaret22116 Bexwarnke24

      Posted

      It just sounds more and more like auto immune disease. Flushing in face points to Lupus. Dry mouth eyes points to Sjogren's. I will send you an amazing story later from a woman in the states finally diagnosed with Sjogren"s.

    • StevenRose
      StevenRose Bexwarnke24

      Posted

      they also point to Hemiplegic Migraine equally, but the truth is we are NOT Drs and you need to see a specialist in the field.

      Good luck

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