So I saw the neurologist for the first time yesterday and I will try and keep this short. Apparently I am suffering from "Silent Migraines" and these are causing my ataxia symptoms. She ruled out all the other possible "nasty" causes and has prescribed Topiramate which she says will prevent the migraines and alleviate my symptoms. I expressed concern about ruling out other causes like MS (I have so many MS symptoms) and about the possible side effects of the medication which are similar to some of my symptoms not because I want it to be something worse but I guess because I don't want to be placed in a position of false hope that the medication will fix everything. Despite her reassurance that these migraines can cause symptoms as severe and long lasting as mine I am still skeptical. I am going to take the medication and I hope that it works but am still worried. I would love to hear from anyone who has been diagnosed with these migraines and/or has been prescribed Toprimate.
Hey...when I was first starting haveing problems with balance I was told after a ton of tests and the doc couldn't find anything on the M.R.I's and I quote this from her " Do you want to know what you have or do you want me to sugar coat it " I told her to just tell me and she said " You have Migraine without head ache " and If i didn't believe her that it exists, she told me to look it up. I did....It's called silent migraine.....and it never lasts for more than 72 hours and you would have no issues after that time period. She gave me some meds for the headaches wich I never had any way and also gave me some for depression and anxiaty...which I also never had.Needless to say my condition kept progressing and never got any benifit from the meds or from her...My advise is to see someone else because the doc's are so quick to dismiss everything else that my be going on...and too quick to perscribe stuff that could make it worse....Really...If it were me and you don't have any reliefe after 3 or 4 days see a new doc...A.S.A.P.
Hi Ken, Just wondering have you gotten any other diagnosis from your doctors since the migraine one?? I was certainly skeptical of her diagnosis and made her well aware of that at the time. The research that I have done since the diagnosis hasn't really helped because migraines whether they are silent or not can also be related to many of these other conditions so I can't see why you would rule out other conditions if you are ruling in migraines. Anyway I've started the medication have seen some changes but now can't tell whether they are symptoms or side effects - it's really frustrating. I've also been seeing a sleep specialist who is the only doctor that I trust at the moment - he suspects I have narcolepsy and thought MS but I have to undergo a further sleep study before he will diagnose - I am going to wait till I see him again before seeing another neuro. Thanks so much for your response.
I hear ya...It dose suck not knowing if the meds are making it worse or if they are indeed sympyoms....or even what is really going on for sure....I saw a sleep specialist too.....he was only able to diagnoss sleep apneia but thats perty vague because many conditions cause that....But he did agree that something is causing it but he was unable to go any further....He was the first Doc who admitted to me that this was just out of his expertise...and told me he wished he was trained better....and this came from a doc with over 30 years in his field....But most likely your doc won't be able to do much either unless he has a vast experiance outside of just sleep disturbances....and most likely just send you to a specialist who is specializig in what he is suspecting you have...Hate to be so blunt and speculative but from hearing other patients thats what seems to be the norm.....As of yet The only real Diagnosis that I did get was Ataxia....but from everything I have learned about Ataxia from the Neurologists is that is just a way to describe the symptoms....and there is an underlying condition that has to be found.....So I keep going in circles with the Doc's and they keep finding more problems but are still unable to pinpoint what is really going on.....A.L.S...P.S.P....Parkinsons...M.S. are just some of what they bsuspect and tell me It will eventualy show up in the tests....But it has been a long and enduring way to live.....But ya gotta never give up...keep fighting .....