I was hoping that someone could offer some feedback regarding MAV. I am new to the site and not sure that I am even using the forum correctly. I was given a diagnosis of vertigo about 18 years ago and have had 8-10 episodes over the years - most of which I have controlled by focusing on a point on the floor. Most recently - I was driving in a parking lot and it came on so suddenly - i could not gain control - I woke up in an ambulance and was unconscious for about 1/2 hour. Following that episode, my health quickly deteriorated. In the next 6 months, I had severe bouts of mental lapses, memory loss,extreme fatigue,loss of cognitive function, word and memory retrieval, impaired vision, taste, and hearing. I also have numbness, tingling, and shocking sensations in all body parts particularly legs, back, and side. Hot showers and perspiration put me in a state of confusion. I was given brain MRI and was tested for MS. My brain MRI showed spots on my brain, but I was negative for MS. After seeing 3 Neurologists who could not figure out what was wrong - I went to Dr. Hain and Dr Cherchi. Dr Cherchi diagnosed me with Migraine associated vertigo - of course - I said - Migraine WHAT? However, after reading some of the stories, some of my symptoms do fit the bill - but some still seem a bit weird. I have been on Topamax for 5 months - I feel that I am operating at about 70% and do not feel that I have made any progress in the last 3 months. I guess my question is this - for someone who has had this for awhile - do you ever get back to 100% and if so - how long does it take? The 2nd thing is - I have been active my whole life - very physically fit - since I have had this - my entire left arm feels completely weak. I can’t do push ups - I can’t hold things - is this normal?
Some of what you’re describing is very similar to my onset. I had weakness, shocking pains in various parts of my body, vertigo, weakness, numbness, tingling, amongst other things. However, I did not have it to the point where taste was impaired, nor was I so weak that an arm wasn’t really functional. Some of what you’re describing actually sounds like hemiplegic migraine.
webmd.com/migraines-headache … treatments
As far as the question regarding whether we get back to 100%. I don’t know. What I do know was that when I went through the initial phases of this 5 years ago, I was in a bad way. Multiple emergency room visits, pretty much bedridden, not sure what all this was, and I was just thinking about making it through each day…sometimes barely. I remember typing my symptoms into the computer one day…with vision impaired…and what popped up?..sure enough…multiple sclerosis. I broke out in a sweat. Thankfully, it wasn’t that beast. This one is bad enough.
5 years later. Am I symptom free? No. Will I run 10 miles and do 1,000 sit-ups on my 46th birthday late next month? Yes.
Having said all of that. Please consult a physician asap. Hemiplegic migraine has stroke-like symptoms. As a precaution, make sure you get stroke tested as soon as possible. Please do that…asap.
Interesting that Topamax got you to 70%. What dose are you up to currently? I wonder if you kept pushing the dose higher and higher if you can get to 100%. Just a thought as I know some docs go very high with this med to treat MAV (not Dr. Hain). Dr. Priesol from Harvard usually goes as high as 300-400 mg and Dr. Newman at the headache center at Roosevelt Hopital in NY will keep going as high as necessary as long as there is some improvement.
All the best,
Thanks for the good news - I was cleared for stroke - and you give me hope - at least, at some point getting back to a work out routine. This disease or condition has knocked me down to the canvas - I am ready to get back up - I am going stir crazy!!!
I have been gradually progressed on Topamax to 100 mg - I started getting severe headaches and was placed back to 75 mg. I also was put on Effexor for about 2 weeks - but that was making me dizzy and taking away what little energy I did have - so I stopped taking that on my own. I have read on this site that meds alone will probably not work - you need to also change diet and lifestyle. Any thoughts?
Hi Mark, and welcome to the site. Just wanted to say that if you reached 70% already on Topamax, that is very good! It is often difficult to find a med that works for you without having to trial many over and over. Keep in mind that there is no time frame in which you will feel completely better, unfortunately. Some people feel great quickly, others it takes a very long time, and for some, they have yet to reach 100%. You can’t put a date on it. And some meds only help so much, to some degree in other words. Docs don’t know why this is. Some people react well to one medication, others don’t. Some people require multiple medications. To answer your question, yes, many find that a combination of medication and lifestyle changes help them. The most common lifestyle changes include diet, exercise and sleep. You may also find that you have times where you feel that you have regressed. That too is normal. It’s all part of the mystery of MAV.