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migraine and speudo tumor/rcvs syndrome?

HELLO 😀 im new and come asking questions because have started topomax and with my symptoms i already have im nervous on how to tell if a problem occurs with info ive read. I have an unusual combination diagnosis and wondering if any similar situations on forum? I was diagnosed rcvs syndrome with thunderclap headache due to mri findings a yr ago but migraines daily now sometimes without pain and more aura. Had recent spinal relieve daily migraine as well as ringing and wooshing in ears. Due to spinal temp migraine relief neuro has looked ar pressure cause i also show empty sella as well neuro treating as speudo cerebral tumor(ideopathic intercranial hypertension ) with vasoconstriction and migraine syndrome.. now im on topomax and a bit nervous due to i have tia like symptoms with my issue and already have blurred vision as well as bouts of word finding and concentration such as triyble remember what i was going to do or what day it is etc. Numbness and tingling in arm into fingers ive had all along. Constriction is in left side i get symptoms short on right like stroke even in face. Short lived episodes but frequent. I am am reading this can happen on topomax and worried about how im supposed to continue to "judge" if its a stroke or rcvs symptoms like i have had to for last year or possibly topomax effects now. Just for note. Im difficult case for neuro. I have autoimmune going on too and some of my symptoms are overlapping neuro with immune.

  1. Hi Kitkat1,

    Thank you for your question and welcome to the discussion forum - we're glad you are here!

    It sounds like you have a lot going on, as many of us do, which makes it difficult to tell which symptoms are coming from which condition. Like you, I have autoimmune issues, migraine, IHH and a few other disorders. It's hard to tell where the pain is coming from. And as much as I wish I could tell you exactly what is going on, only a qualified doctor can do that.

    At this point, you may want to think about seeing an expert who treat migraine/headache disorders rather than a neurologist. The thing is neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many different conditions such as stroke, epilepsy, Parkinson's, multiple sclerosis and others. Migraine/headache disorder specialists ARE experts in one disorder - ours - migraine and headache and are board certified in headache medicine which is different than being certified in neurology. Let me share this information with you on how these doctors are different and how to find one; and

    Here is information on IIH;

    I wish I could be more helpful, please let me know how you make out,

    1. Thank you for your input it us greatly appreciated 😀 i had a follow up with rheumatologist tge otger day for other stuff and he took xrays thinks i may have psoriatic arthritis which isnt even what i saw him for but i guess i have signs and he put me on naproxen for now . I tokd him im told not to take nsaids by neuro he said id be fine so i have to double check with neuro to make sure i dont cause a issue. I am going to look at the info now and my primary said even though he referred me to her he suggest second opinion never hurts i can ask about migraine specialist im sure he will put in referral 😀

      1. Sorry^ typing on phone is difficult with vision!

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