For anyone who has had success with topamax, maybe you could help me. I was so on the fence today about just quitting. It’s only been 3 weeks, but I havent seen any improvement yet. I’m currently taking 50 mgs at night. So, I called my doctor telling him I wanted to get off of it. He said “No, you havent even gotten to the dose where it will help you yet”. (Which is 100 mgs - 50 mg twice a day) It isnt causing me any side effects. I’m just super tired -which may or may not be from topamax - every drug -vitamin,or some foods I take has this effect on my body so I never know whats causing it. However, I guess because I’m sooo anxious for this medication to just work NOW I want to give up. I will hang in there until I get to 100 mg b/c I really want to be able to say …“Well I really did give it a try and it didnt work”. My goal is to take 50 mg in morn and 50 mg at night - God help me. Is there anyone who is currently seeing pretty good results with this dose?
YES! It took care of the dizziness for me, I’d say about 99% of it. And I had a few different types of dizziness to deal with: severe dizzy spells complete with tunnel vision aura, mild to moderate dizzy spells, daily wobbliness, and head motion intolerance (the feeling that my head was still moving if I moved it up or down or side to side and knew I’d stopped moving it).
The worst symptoms - severe spells with tunnel vision aura - stopped when I started the 25mg dose. The milder spells gradually decreased. But the daily symptoms didn’t go away until I’d been on the 100mg dose for about 3 months. This is NOT a quick fix. I wish I could tell you it is, but that’s just not how it works.
But the main thing to know about it is that for a lot of us - me for sure - it DOES work!! Now I rarely get a fleeting sense of wobbliness, or a little head motion intolerance. That’s it. This stuff really works for me.
Hope it does for you too!
I am still at 25mgs. Been there around a month now. It has not helped my visual problems yet, but possibly helped with some of the brain fog and cognitive stuff. I do know that the side effect I had at the beginning, like being tired all the time, has diminished and I no longer have any negative side effects from the drug. I plan on titrating up more next week.
I think 50mg helped to keep away an episode of vertigo not that long ago. I felt it coming on and thats where it stayed for about an hour and that was it. Never developed to full blown. It has also helped the random dizziness. That being said, my 24/7 ear symptoms it hasn’t even put a dent in. I’m up to 75mg now. It will be a week tomorrow that I’m on it and I have to say that I am feeling a little more like myself, not so groggy and tired all the time.
Hang in there! I hear it works wonders, thats the only thing keeping me going!
Topamax worked great for me but it took awhile. I was on 50 mg twice a day for about two or three weeks before a noticed a difference. I still have my visual problems such as problems in grocery stores, wallpaper, carpet, and looking at computer screens but it got rid of my brain fog and my head motion intolerance. I am still pretty fatigued a lot but a beleive thats because I’m still fighting so much of the visual stuff. Kind of wears me out after a while. I was on topamax about two months before a noticed a difference. Its a long time but it was worth the wait. Good luck and hang in there.
Thank you all for the replys! so glad topa has helped you in some way…it seems like it just takes time wishing everyone the best!
I actually started seeing some minor help from 50mg (25 mg twice a day) after about 2 weeks but my doctor said that was very rare, so I wouldn’t be disappointed that you haven’t had the same result. I didn’t really see the full benefit until I got up to 100 mg (50mg twice a day) and had been doing that for a bit. If you aren’t seeing any large negative effects I would say it is worth sticking with it for at least 60 days from when you started to see if it starts alleviating your symptoms.
Hey everyone! I have successfully made it up to 100 mgs! 50 mg in the morn and 50 mg at night. I still have not noticed any improvements yet but I am so glad I made it to the 100 mg point. It was not easy getting here, as it made my symptoms worse each time I increased and also made me feel tired. However, now I am back to feeling like I did when I started. My doctor said to give it 6 weeks at the 100mg dose and see how things go. I am hoping for the best! Hope everyone is doing well!
I have been at 100mgs for about 9 weeks now. Still no real improvement. I still have the constant visuals as well as the horrible brain fog. I am also tired and fatigued all the time. I plan on seeing my Neuro in two days. No idea what his plan is. He is treating me for migraines, but it’s not like he is a specialist. Does anyone have any suggestions? Should I try going higher? Should I stick with Topa and add another med? Get off it altogether? I was really holding out some hope with this drug, but besides the two good weeks I hit when I first got up to 100mgs, I haven’t felt much better on this drug…
My suggestion would be to either up the med and see if it helps since u did have a good two weeks. With migraine most docs go up to 200 mg with topa and then stop if no result. Im at 175 mg now. If it doesnt work at least u can say u gave it a full trial.
Are u on the diet?
I did the FULL diet a long time. Stuck with it about 6 months. It didn’t do anything. Right now I’m kind of just eating real healthy and trying to avoid the big ones on the diet, but to be honest, I don’t worry about it much anymore. Nothing that I eat ever makes me feel worse, and nothing I don’t eat ever makes me feel better. I always feel about the same. Very baseline. I obviously stay away from wine and don’t eat much cheese. Still watch my sodium intake and such. But like I said, I stuck to that Heal Your Headache diet to a T for 6 months and nothing changed, and once I reintroduced foods back, nothing changed. Now when I eat bananas and nuts and such, I never feel a difference. That’s what was always hard for me. Nothing about my condition has ever been episodic. The last two years or so, my brain fog is always the same. I never get dizzy spells or vertigo, I just have no balance (vestibular deficit in right ear). Any visual aura I have isn’t true aura, it’s just entoptic phenomena I see every day. I basically feel like there is just a wiring problem in my head that needs a fix. I am hypersensitive to my environment and I can’t tune it out. Anti epilepsy meds sound like the right choice, but this has done nothing for me…
Hmm, ur lucky!! I feel as though certain foods trigger my MAV…which sucks, I love coffee, cant handle it anymore, not even decaf ugh! But if I were you id try upping the topa or adding in nori at this point. People have had success with that. My doc has given me some klonopin for nightime relief as needed…that could be an option too. That always helps me, even in small doses!
Yes, I guess I am lucky, if you can call it that! I still do avoid caffeine and coffee as much as possible. It does not make me overtly worse, but I do feel a little “buzzy” when I drink coffee, but that could be because I rarely drink it anymore. But like I said, nothing I ingest ever makes me feel noticeably worse.
I was on Nori for about 9 months a few years ago by itself. At the time I had no visual problems, but I do not recall it helping much with the cognitive or balance issues which is why I came off of it. The scary thing is, when I was halfway through my taper, all the visual problems began. The floaters, photophobia, Scheerer’s Phenomenon, etc… I still have no way of knowing if that drug actually caused all these visual problems or if it was just a coincidence. Maybe being on that drug and coming of kickstarted a migraine syndrome? I have no idea. Either way, I am reluctant to try it again…