Kenny - we’ll be thinking and praying for you! It’s so disconcerting to have symptoms return and it’s also horrible to deal with the intense tingling (I sometimes get some of that budt mostly just get deathly cold) from the topamax. Sorry you have to switch gears but these things have a way of working out for the better especially if your current neuro isn’t up to speed on MAV - what the heck?? That’s odd. Anyway, hopefully the new doctor can direct you well. This condition is so slippery. I agree with DizzyB about the possibility of the gabapentin or other anti-seizure med. They’re not known for the intense side effects of topa.
Gail
Hi Kenny.
Good luck with your appointment tomorrow, hope the new doctor is really knowledgeable about this condition and can offer some good advice re meds, and general support.
Let us know how it goes,
Hx
Hi Kenny,
I’m really sorry your wife is sick , on top of everything else you have to deal with.
Kenny, I went from 75mg straight to 25mgs with no trouble.
Then nothing 3 days after that.
I felt better for it as I had shocking side effects on it.
Another fellow from this site,his name is Rich, he lowered his topa back down to 50mg due to side effects (itching) if I remember correctly.
And he did really well on only 50mg and still is doing much better, it might just take your brain a while to adjust.
Good luck with it Kenny.
Stay safe.
jen
My visit with the new Dr. update…
Well I got to meet Dr. Steven Jon Millen yesterday and I am impressed to say the least. He is one busy fellow but still took the time to look at my case in depth and come up with some thoughts. He is a neuro-otologist and specializes in disorders of balance, one of three in Wisconsin, he is also a friend of Dr. Hain. I do have to have another CT scan, he started me on .5 mg lorazepam twice a day and made no other changes in my other meds. He told me that of the many MAV cases (several hundreds perhaps thousands, as I googled him, he is 63) he works with I am the most severe and he suspects there is more than MAV involved, perhaps some post concussive vertigo from an old injury which he said is much more difficult to treat. I left his office with some hope that I can find some relief in the near future. Dr. Millen asked if I had read his book and mentioned the name but darned if I can remember it. I’ll have to ask him about it on my next visit and share it.
Hi Kenny
That’s great news that you saw such a great doctor. I searched Amazon.com for any books by him but couldn’t find anything… maybe it’s out of print or a collaboration with another doctor..?? Good you got some more ideas and direction. Hope you feel better soon. These conditions are so unpredictable and difficult to pinpoint.
Gail
Hi Kenny – good news re the appointment! I had a look too for his book in other areas of the internet but came up with nothing. I’ll check the university library when I get to work.
Scott
I believe that book is quite recent, I also googled for it with no results, I’ll do more research. Also the lorazapam (sp) did well yesterday cutting the dizziness 55% or better. I actually slept the night through last night and feel refreshed this morning., different, now what?
Ain’t it amazing how well benzos work for MAV? Seems to be the one universal remedy for this junk.
has anyone had good luck without too many side effects with gabapentin (neurontin)? just curious
chris
Yeah Scott, but I gotta wonder about benzos and the long term. Chris - I have been on gabapentin for years for neuropathy and it works OK for that but my dosage has no affect on the dizzies, nor has any Dr. recommended an increase.
I’m just catching up with this thread. I took gabapentin for a few years for my MAV with success. It has been the only med I found whose benefits outweighed the side effects. It was when I was given Nortriptyline for something else that it stopped working, even after I quit taking the Nortriptyline.
Well so much for lorazepam. I had some pretty severe side affects and Dr. Millen took me off and I have to go a week before trying another. No Idea what it will be. At the moment I am pretty dizzy and recovering from a moderate migraine, miserable would be the word. I’ll be on something new by Wed. so will post and let you know what it is. All this is getting a bit discouraging, seems everything I try works for a bit then backfires. This year will mark my 7th year of battling this disease and it’s getting old to say the least. Well, off the pity pot on on to something to keep me busy…
Hey kenny
Sorry to hear that. I think Lorazepam is Ativan, right? Have you tried Valium or Klonopin? Ativan has a short half life, and maybe the up and down of it was causing some firing in your neurons, thus making you feel worse? The other two have really long half lives and slower mode of action. I would consider that in the meantime, as you can add a benzo to pretty much any drug you will try next.
Since you responded well to Topamax, I really think an anticonvulsant would be in your future…either Lamictal, Depakote, Keppra…have you tried any of these? One of our members is doing pretty well on the addition of Depakote in low dose to her Nori…and few side effects…
Hang in there Champ…
Kelley
Kenny – I can’t take Ativan either. Makes everything worse but all is great on Valium. Might be worth a go if you haven’t tried it.
Well, after an extended break i’m back. It has been a tough few weeks. Took me three weeks to get the lorazepam out of my system and another two weeks to get in to see Dr. Millen. During that time I was back to daily migraine and MAV. Dr Millen said that there is more than MAV going on with me as he had never seen a a more severe case than mine and he has treated thousands. He feels that an old head injury has a lot to do with what I am experiancing, but there is no pathological evidence for such. Other than a specific CT scan Dr. Millen said I had every test possible and any more testing would be a waste of time and money. He did give me hope and said it would take some time since there was no easy way to deal with the MAV in my case. He left me on the 50mg of topo, 300mg of gabapentin and now has me on cloraz dipot 3.75mg 3x a day. I have been on the cloraz two weeks now and the only thing I noticed is I get very tired and I do not trust myself to drive. I sleep about 14 hours a day, BUT I AM NOT DIZZY and while I have had a tension headache or two I have not had a migraine. Do you good folks know how hard it is to type with your fingers crossed?
All in all I am doing a lot better and have some of my life back, I’ll take whatever I can get. A nap sure beats a migraine and/or dizzienss - any day.
Thanks to all on the forum, there were times you kept me going, even though I did not post I lurked - Blessings - Ken