So I have been on 100mg of Topamax for just over 2 weeks now and feel like the dumbest person in the world. I titrated up 25mg every week as per Granot’s recommendation. I am forgetting things quickly, words are in my brain but just don’t come out of my mouth, unable to concentrate, extremely lethargic, sweets and drinks taste wierd, lips are dry and itching all over my body. Those of you on topamax, how long did it take for all these side effects to lift? I know these are very common side effects so I am going with the flow. It has not made my symptoms any worst or any better. Maybe a bit worst because of the side effects so I think its probably not letting the Cymbalta let it work to its full potential. I was definately much better off on the Cymbalta alone doing 80% on most days. Im gonna still continue the the topamax and give it a fair trial on the right dose before giving in so I need to know how long do these sides effects last?
I’ve been on Topamax for over a year now. Starting at 25mg and now up to 100mg.
To be honest with you, the bad memory and finding a word problems haven’t got any better, in fact they have got considerably worse since going up to 100mg.
If I up the dose further and this side effect got any worse, I would come back down and stop the drug at this dose and say my ride with Topamax is over. I end up looking rude when really I’m just bloody forgetful- I think I asked Anna 5 times how old her kids were. I forgot to ask Rob what he wanted from the bar. I ask my boyfriend what the time is 4 times in a row. They are little things but work is getting difficult now too.
One side effect that never changed at all for me: carbonated drinks still taste yucky. But I don’t mind because most of them are bad for you anyway.
I still have word-finding trouble, but mostly for words that I seldom use. I had tingling in my fingers and even in my lips, but that’s mostly gone - except on a rare occasion I will feel it again. I thought I was going into a “dopey” phase when I hit perimenopause anyway, so I’m not sure that I’m really much worse due to the medication. A little less sharp, a little less “quick on the draw” - I just wonder how much is due to age and the fact that I don’t work out a lot (some injuries haven’t helped). You’re mentally more alert when you exercise regularly, and I haven’t been able to. My mental sluggishness isn’t a significant enough change for me to be worried about it. Nearly falling over when I tried to walk (which happened during my worst dizzy spells) WAS a big deal, and Topamax fixed THAT, so by comparison I’m very pleased with the benefits vs the small “costs.”
Itching all over your body doesn’t sound good - did that happen at 75 mg? I don’t think this is one of the more common reactions, and to endure this for 2 weeks is a long time. If it comes and goes, maybe it’s worth sticking it out awhile, but if it’s constant, I don’t know if this side effect is worth tolerating.
For me the brain fog did improve quite a bit after about about a month at a stable dose. While I was continually increasing my dose, it got pretty bad. I can still have trouble if I’m tired or not feeling well, but over I seem to have adjusted to the Topamax. I had some other odd symptoms while I was adjusting, but didn’t have any itching. Good luck! I feel like the Topamax has really helped me.
Yes I am seeing my neuro in a couple of weeks to see what he says. The dopey side effects of this drug is really shitty. There was no way I would be able to push forward if it wasn’t for the cymbalta. No wonder I could not tolerate it the first time when I tried it.
You know I started the Topamax well before you. I have been on 100mgs for a full 2 months now. I fortunately did not have any real side effects. I do have the terrible brain fog, but I have had that continually for 3 years now. It is hard for me to tell if it is much worse or just a little worse with this drug. It is no better, that’s for sure. As I mentioned on here before, I did have a two week stint when I first hit 100mgs where I felt much more clear headed and positive, but since then it has been worse. At this point and time, I am not finding many benefits from the Topamax, but I am trying to give it a full trial, because I don’t want to give in too early. It’s not causing me any real problems, and like I said, I have had this “spaced out” feeling for years, ever since my Vestibular Neuritis hit me. I’m starting to feel like my fog will never be lifted, but every once in awhile I read about people on here finding relief from medications, so I am keeping my hope alive.
I’m guessing you haven’t found relief from any of your visual symptoms Nabeel? I’m seeing my Neurologist next week. I’m going to talk to him about the possibility of Keppra, Sibelium, Sodium valproate and Lamictal to continue this trial of drugs, drugs and more drugs in an effort to feel and see normal once again…
Spoke to my mums opthalmologist who will be doing her cataract surgery this week. He said that he has seen a number of patients like me in his years of practice and I can tell you he is extremely experienced. He outright said that its something to do with an imbalance in electrical activity somewhere in our brain. He basically said its nothing to worry about as all the tests will come out clear which is true for me and the only thing I can do is ignore it. He said i wont go blind from it. Although his words were not a cure, but the fact that he knew what visual snow was itself a big thing unlike most doctors who have no idea. He has referred me to a neuro opthamologist for an opinion so will keep u Posted. I guess we r one of those unlucky people with a very rare condition. We just have to console ourselves by saying that we can still see with our 2 eyes.
Really feel for you guys who have the visual snow on top of the other crap. It sounds horrible. I hope more is found out about that in medical circles and SOON! x
Nabeel…interesting that the opthomologist was so familiar with this. Besides visual snow, do you have any dizziness when looking far right left or right? If it’s electrical, then you need to try another med and see if that helps. I forget which one it is…but I will look it up.
You have my email so shoot me a message and I will find out.
Kelley
I am resurrecting your thread Nabeel as I am on the Topamax journey. This weekend I titrated from 50 mg to 75 mg. Jeepers creepers it is awful! I am so foggy and spaced out it is not funny or pleasant at all. I am clumsy, dopey, foggy, brain dead, spaced out, tired, lethargic…you name it. Given that I am on Topamax to try and knock out some vertigo that was ‘uncomfortable and annoying’ I am really not at all convinced that this is worth it. I can handle the buzzing in my fingers and feet but the rest - eugh! I have to go to work and function!
the side effects will eventually will wear off but it will take some time. i am patient of granot too but i dont agree with his titration schedule of his weekly 25mg increments for topamax. its too fast for our migraine brains. it agrees with the information sheet which comes with the box but for us migraineurs there is no given or set rule. u just do what suits u. so eventually i came off topamax altogether at the time and started all over again after visiting my new neuro dr shaun watson who prescribed topamax again but left it up to me when i was comfortable in increasing my dose. it took me ages and now i hav been on 100mg for 2 months. no great benefits but no great problems eitherr. dr watson told me to take the whole 100mg at night instead of dividing the dose equally between morning and night. this drug does have many side effects so u may have to go slower than what granot recommend but do not give up cz it is great drug and im sure it will pay off for u if u continue.good luck
