Still not sure I have MAV and Topamax

I am tyring Topamax to see if helps my constant off balance feeling. I have been have extreme motion intolerance, esp walking in general, in crowds, stored etc. also have a daily sore neck. I definatley have a total hypofunction of the right ear (ENG). The left if fine. I have no other positive lab findings. (MRI, labs, neck MRI all clear)

I do however seem to feel slightly better, clear vision just menatl sharo immediately when i lean my head to the floor. i;ve told the docs, but they saw it’s not a vascular issue?

I have tried amitryp, verpamil with no help. I just took topamax last night and

Today feel awful, lightheaded, sweaty, flushed, hot… I am not sure I can continue on this, I am taking 50mg. maybe I should try a lesser dose? Any suggestions is appreciated. Thanks

Hi there,
Yes, I would definitely say start at a much lower dose. With Topamax, and all anticonvulsants, a slow taper is best. Some people start as low as 6.5mg. The side effect profile is a rough one for lots of people, so be patient with yourself.
Your symptoms sure sound like they could be MAV, and even if ther are some things going on with your ear, it doesn’t mean it excludes MAV.
I didn’t get any relief from Amitriptyline either…never tried Verapamil, as I already have low blood pressure.
Good luck!! I’m sure you will hear from others, and also check on the board index for more info on user reviews of their Topamax experiences.

Best of luck
Kelley

Hi,
Yep I agree with Kelley, I’d start out much lower than that.
The lower the starting dose, the less you brain waves will jump up and down about it, they need time to acclimatize.
How high did your Doc say to go ?

jen

Hi, In total agreement, started topomax 25mg a few weeks back and even that dose knocked me for six for a good week. They advised to reduce to 25mg every other day if side effects too severe and increase dose by 25mg/day every fortnight as tolerated. You need to back right off if you’re to have any hope. On a positive note - I’m up to 50 now and handling it ok, so it can be done. Good luck.

Dizziblonde, is the 50mg helping you?
Kelley

Hi Kelley, sorry for the delay, it’s easy to miss posts on this section of the board.

Jury’s still out on the topomax for me I’m afraid. I went up to 75mg about 10 days ago and it definitely has had an effect on my symptoms and stabilised them to a degree, but I’m still feeling pretty lousy a lot of the time with pretty severe nausea being an issue that seems to keep resurfacing and I’m finding my mood is a lot lower - I’m sure some of that can be explained by the general condition but I generally would say I’m quite a positive optimistic person in life yet am really quite low and teary of late. Sleep is also problematic on and off and insomnia kicks in for a good week or so whenever I up my dose.

I suppose I feel like my condition has improved with the topomax but feel quite “toxic” and unwell from the drug. Hard to know what to do for the best really, contemplating going back down on the dose for a while and seeing if that improves the sides a bit. Always seems to be a trade off and my neuro wants to put me on Epilim next which to be honest I’m pretty keen to avoid so would love for this to work.

Anyone else had any problems with these side efffects?, do they subside with perseverence?

Hx

I can only speak for myself, but I started at a “baby” pediatric dose of only 15 mg. (the neurologist said that she even gives kids more than that but I’m extremely sensitive to meds). I’m now taking 15mg in the morning and 30 mg. at night and it’s been almost a week. I seem to be tolerating it all pretty well but this is a small dose, ofcourse… and, I’m a petite person. I think anything above 25 mg to start sounds too high but I’m not a doctor. Side effects for me are slight headache, cold hands and feet. Hope it all goes better!!
Gail