I just started Topa 25 mg nightly 4 days ago and definitely have a different type of increased dizziness. I am hoping it subsides in a week or so. For those of you that have had success with Topa and had a transient increase in dizziness, did you take anything to help you thru it? A benzo or phenergan? I have both meds …just haven’t tried them. Also, is a week sufficient time to wait for the dizziness to hopefully improve?
Hello
How are you getting on?
I’m new to all this and I’ve just found this site. I have been on topiramate for a week and feel pretty awful, vertigo is a nightmare and really nauseous, can’t even leave the house. Hoping you could tell me if it gets better after a week? Not sure I can do this for much longer but I really want it to work.
Anyway, hope that you had success, for both our sakes!!
Take care
My one week mark is Friday, two more days. I still feel pretty awful too. No improvement in the dizziness. Also having bad headaches. Trying to bear with it and hoping it lets up soon. Supposed to increase the dose to 50 mg, 25 mg in am and pm, at one week. If I’m not feeling any better there is no way I will tolerate the increase. I just don’t know how long to bear with it either!
What were your symptoms before you started the Topa?
My goodness, I’m so spaced out I got muddled up with when you Joined the site and when you started the medication, sorry.
Looks like I’m actually one day ahead of you, I’m supposed to increase to 50mg after two weeks but completely agree with you on not managing this if the side effects don’t pick up. I’m getting headaches too, spasms at the back of my head and facial aching.I have to rest most of the day as I’m like the walking dead trying to get around the house. All in all not fun. But I so want it to work I feel I have to give it a good go.
I was diagnosed with viral labarynthitis in June 2010 (at the age of 30)and then MAV in dec 2010 when this just got worse and worse. I get vertigo everyday set of by patterns,gravel, walking, busy places etc pretty much leaving my bedroom does it and it makes me exhausted.I feel like I’ve had a couple of vodkas all of the time and I can’t walk very far and if i over do it i really pay for it. Im fortunate i dont relly get the migraine type headaches that i used to get pre MAV, i get odd spasms and aches that dont compare. Not working and I’m going crazy with boredom. All in all a bit of a rubbish time. Otherwise had a very healthy and happy life but always suffered with the occasional migraine with aura from a very early age. Never had trouble with motion sickness or anything like that as a child and infact love sailing, cant ever imagine doing that again! Currently on 300mg Pregabalin and the 25mg topiramate.
What’s your story? Any tips? I love this site but I think I need to get a it more familiar with it so bear with me if I’m being a bit blond 
Although I really wouldn’t wish this on anyone, it’s kind of nice there is someone going through this with me.
Let’s hope tomorrow will be a better day for both of us!
YES. This is common. Topiramate will make you feel iike S*** for as much as 5 or 6 days when you start it. It will do this again every time you up your dosage. It is a dizziness that is very similar to the dizziness that I get along with my migraines, but slightly different.
When I first went on Topiramate, it took me back to my lowest point, as if I had triggered the motherload of all migraines. But it gets better. For me it starts fading around day 3 and I feel pretty much normal again on day 6.
I didn’t do anything to get through it except just grit my teeth and bear it. And in my case it’s been worth it–the topiramate has almost 100% eliminated all of the rocking sensations that I was experiencing. It hasn’t eliminated all of my symptoms, but I’d say I’m at 85% of my original self with almost no side-effects.
I may be one of the lucky ones, but if you are just starting out on it, I would at least give it a chance. Know that it makes you feel crappy for a week every time you change dosage. But at least for some people it DOES get better. A whole lot better.
Thanks so much JamieH, that’s cheered me up no end!! Just popped another tablet and the thought of potentially getting back to 85% of normal is really exciting, I so hope it works.
May I ask what dose worked for you, did you settle on 100mg topiramate?
Thanks again!
I am still reasonably new to it. It worked on my much faster than expected. So I do feel that I was a bit lucky.
I’ve only been on 100 mg for about 2 weeks now. I was on 75 mg for several weeks before than, probably about 2 1/2 weeks. I’ve only been on the medication total for about 6 weeks.
I don’t know if I will stay at 100mg long term or not, but I’m staying here for now. 75mg was clearly helping, but it wasn’t helping me enough. My doc actually wanted me on 100, I had just stopped at 75 because it was helping so much. I hadn’t seen any side effects yet and I was thinking “less is better”. But it becamse clear after 2 weeks that it wasn’t helping enough. Even though it was stopping the rocking, I was still getting a bunch of other migraine symptoms (numb brain, head pressure) pretty consistently.
I know it doesn’t work for everyone, but I know a few people on this forum have gotten some relief from Topiramate. Anecdotally it seems to be effective against the rocking sensation that some MAV patients tend to get.
I went up to 100 mg and the dizziness got worse, then better, then really really worse. The doc wisely took me off of topiramate. Be careful!
There is no question it doesn’t work for everyone. For me the pattern every time I change dosage is total suckage for 2 days with things starting to get better on day 3 and things back to normal by day 6. If you are well past a week and things are still way worse then there are other medications to try. I just don’t want anyone to give up because of those first 2 or 3 days. I almost did and I would have missed out. But someone on here told me that they had experienced the same thing so I kept going. Topiramate has worked tons better for me than the other meds I’ve tried (Verapamil & Nortriptyline). There is no question that it is a strong medication and you have to be careful with it.
Thanks for the advice.
I really will be careful and try not to put too much faith in the drug, I’m a bit desperate to be honest and I’m well aware that can become a bit dangerous when trying these drugs.
I was feeling a bit better yesterday, and then typical me style overdid it a bit and now feel pretty awful and can barely function. My guts telling me its more MAV today than the drug itself. I’m not very good at resting when i need too.
Thanks again!
I have been on Topamax since December and have titrated up very very slowly!! I actually got up to 75 mg and then titrated back to 50 which seems to be my “sweet spot”… Also when I say slow… I mean slow… Titrating up every 3 weeks or so and titrating up half of a 25 mg tablet. I am on the name brand as I was allergic to the generic, but it has helped me tremendously!! It is a very powerful med however and each titration up had challenges for me. I took Ativan when needed tp help with extra dizziness… I am very pleased with Topamax and feel that it is giving me back my life… I have a long, difficult history… I’m very hopeful that I will be posting a success story in the future! Good luck … Take it slow and easy and give your body time to adjust… We MAVers are very med sensitive…so keep that in mind!! I wish you good luck!! Dee 
I went up to a pretty high dose of topamax (I can’t exactly remmber but perhaps 200 mg). I went up very slow and was very hopeful at the time as I was new to MAV. It was not until I came off the med that I realized how much better my head symptoms felt. It definitely made me dizzier in my head and did not touch my rocking at all. In retrospect, since the med did not help me at all I should have dumped it much earlier on, although I have to admit I had to lose a few pounds at the time and enjoyed the weight loss aspect of the med. But I since gained it all back and then some. I guess you have to know your own body and go with your gut in terms of what is reasonable to tolerate in term of extra symptoms.
Thanks for all the advice… The way I see it I have three choices at this point
- Stay at 25 mg for another week. Maybe the dizziness will settle down
- Increase the dose. If I feel even worse then I know the dizziness is drug related and not MAV symptoms.
- Quit the Topiramate
Still trying to decide which choice to make… I have an appointment with Dr. Rauch June 29 th and part of me wants to stop everything and take a drug holiday for a few weeks and see what his advice is…ugh.
Jen.
Jenn , how much worse would you say you feel than you normally do? My personal choice (without being able to feel what you are feeling) would be to give it at least a few more days to see if the extra dizziness subsides. That choice is of course colored by my own personal positive experience with Topiramate.
I don’t recommend increasing your dose until you at least get back to where you were when you started. If you bump your dose up, I’m pretty sure you will feel like crap again for another 5 days to a week minimum even if the medicine is eventually going to help you, so all that will do is encourage you to quit it. You need to find out if your body is going to adjust to it or not.
Some people on here have mentioned going up by smaller amounts (12.5mg) at a time. I’m not sure how you do that–maybe with half pills. I was told not to break the pills so I’m not sure.
I had a lot of increased dizziness with dose increases, and like Jamie, it would take up to 5 days sometimes to stabilize. At first that meant just getting back to my normal dizzy before I could increase the dose again. And I did split tabs and only increase by 12.5 mg at times when needed.
Take it slow–no need to rush this! It will take your body time to adjust to the target dose anyway, so ease into it to lower the chances of the increased dizziness and let it settle before adding the next dose increase.
Good luck, hope it works for you!
Thanks Anne and Jamie,
I think I will wait a few more days to a week for things to settle. If they do, I will Increase the dose as you suggested by 12.5 mg. I have trialed so many meds and given up but I really want to give this a fair try. Thanks again, this forum is helpful My husband is tired of hearing me complain and just doesn’t know what to say anymore.