How high (how many mg) have folks gone on this before it is (1) too scary for the doc (2) too scary for the patient (3) you have keeled over dead
tcs
Haven’t been on Topamax (yet!) sorry can’t be of service here 
I believe 200mg is the max dose dose for migraine and for epilepsy people have gone upto 1000mg and over
ah shit…i am only at 75, i got a long way to go :shock:
thanks
t
i went up to 200 mg with no problems. well, one problem… it didn’t help at all! has it helped you at all? i kept pushing up the dose on my own, as my doc told me that if i did not get any effect at lower doses, the likelihood of it working was small. but, it was one of my last med trials and i wanted it to work so badly!
Is it helping you? Topamax made me soo much worse. But it seems to work great for so many.
nada. it has done nothing at 25mg, 50mg, 75mg. no changes whatsoever.
i just bumped up to 100 mg last night.
we shall see :?
100-150mg took away all my various types of dizziness, but not all my headaches. But each time I’ve gone up to 200mg I haven’t stayed there for very long, having had different “issues” with this dose. I’m giving it another go since I’m sick of the headaches and I’ve managed to get used to every dose short of this. It’s been a few weeks now and it’s definitely made a dent in the headache situation, and so far I’m managing OK. No sign of keeling over dead either. Will keep my fingers crossed for you too!!
planning on going up by 25 mg every 2 weeks until i reach recovery or make my way into the new england journal of medicine, whichever comes first.
will keep you guys posted
tcs
I went up to 100g but did nearly die so I came off it all together.
In the UK 100mg is the recommended maximum dose in their medicine book, I’d say if you aren’t seeing any improvement on 100mg it’s probably time to try something else.
Are your fingers tingling yet???
I have been on 100mgs for about 6 weeks now. The first two weeks I felt great. I felt like I could think with more clarity and or the first time in years I felt very optimistic. I also noticed that my vestibular problems (imbalance, head and eye movements) felt much better. Now, for the last few weeks, I have felt the brain fog come back, been very lethargic, hard to think and the vestibular problems are very icky again. I know they say drugs at the proper dose can take up to 3 months to show improvement, but now I am at a loss. I want to keep taking the Topa since I had those 2 great weeks. But now I wonder if I need to go up to a higher dose? Or is it possible that the Topamax is causing this side effect? I have had brain fog and concentration problems every since my vestibular problem started, with or without drugs, so it’s hard to tell nowadays. Any thoughts?I plan on seeing my Neuro in a few weeks.
awalkerpheonix, that sounds almost exactly like my story, after about 3 weeks on 50mg I felt really good for a couple of weeks. The it all went down hill from there.
The fatigue, breathlessness and the rest of it just started getting progressively worse.
When I saw my GP to say I wasn’t coping with the side effects they tried increasing me up to 100mg, but I was bed bound with it.Never felt so ill!
I never got the good two weeks again, and came off the topamax shortly after. I am self managing now and feel so much better.
Try increasing maybe, but don’t push it too long Topiramate is an aggressive drug that works for some, but if you are susceptible to the side effects it could make you feel worse than the MAV!
Jor,
I think the hardest part is, what is side effects and what is migraines? Also, what is anxiety? I know that all of these things can be playing a factor with me… Would I really be getting side effects this long into Topamax? I would imagine the first few days or weeks would be worse, not 6 or 7 weeks later. I am seeing my GP this week, but not sure how much she will help since she generally thinks this is Neuro territory. I also want to start seeing a Psychiatrist, but that always makes me nervous that they will point a finger and blame all my problems on anxiety.
I’m just scared at the moment to try an ween off another drug (it took me months to get the strength to even try Topa) as I worry about side effects of coming off and I also worry about starting all over with a new drug. I keep hoping that something will give me some optimism, and for those two weeks I really thought I had found it.
— Begin quote from “Go Gonzaga”
planning on going up by 25 mg every 2 weeks until i reach recovery or make my way into the new england journal of medicine, whichever comes first.
will keep you guys posted
tcs
— End quote
A good sense of humor is very important when approaching the Topa. I started at 25mg on 10/03 got to 100mg by 10/19. Side effects through the roof. Somewhere around mid Nov added another 25mg…hell I can’t remember I had Topa brain (seriously though some side effects had really abated by this point). Waited until a break from very, very part-time work to go up to 200mg. Started 12/08 and reached 200mg on 12/13. Side effects beyond through the roof. 12/27 couldn’t handle it anymore and started tapering back down and am holding at 100mg.
I know I was very aggressive with my dosing, taking advantage of time when I had family support etc. I have yet to feel any benefits from Topamax other than losing weight. I am still dizzy 24/7…yeah, I’m one of those people…ugh.
I’ve seen on here that Topamax is a life safer so…best of luck. Hope you get better (a much better option than the New England Journal of Medicine in my opinion)
Judy
For me the side effects got worse the longer I was on it, for some of us I just don’t think our bodies can tolerate it.
I was on it 6 months and never stopped with them.
I’d give it a little longer but if things don’t get better I wouldn’t keep pushing it