Nervous about Topamax

Just got prescribed Topamax…nervous…seems like it is a third line of treatment…I feel like I did not give the nortriptyline a good enough shot (conflicting with my zoloft), and since I have low blood pressure, he did not want me on any antihypertensive…ugh! He is starting me at a very low dose…what does everyone think? Thanks!!!

It is not a third line of treatment. Many migraine docs feel it is actually the most effective migraine drug they have, and it has been proven effective in several medical trials. It is often not prescribed as a #1 option because it is difficult to adjust to and has some serious (but rare) side effects so other options are considered better for initial attempts.

I’ve been on it for 3 1/2 months now as Nortriptyline definitely did not work for me. Be prepared that adjusting to Topamax is difficult and will likely take at least 5 days or so (and probably again anytime you change dosages) during which you will likely feel rather poor. Also, if you have ANY change in your vision, talk to your doctor immediately as it can cause a serious vision problem that usually will show up very early on when you start taking the medication if you are going to have problems with it.

That being said, Topamax has controlled my migraines wonderfully and has me at pretty much 100%, so it can be a very effective medication.

Thank you for your response. It sounds like you are having a great amount of success with it, so that is very encouraging. Took it last night…feel ok this morning so far(a bit more sluggish I guess)…we shall see. thanks again!!!

100% agree with Jamie.

Read this :

Good luck!

Thanks…that is good news then. So I guess it is not a third class drug. Just popped it for the second night…so far so good. Felt ok today. Crossing my fingers. Thanks again!

Absolutely not a 3rd class drug, not at all. Just the opposite–it’s very powerful. Like all migraine medication it doesn’t work for everyone, but several on this fourm have had at least some success with it. Good luck!

Thanks…so far so good!

OK…so now I am beginning to feel increased dizziness…started a bit yesterday and now today was a bit worse.Do you think it is worth going up more slowly on the topamax to help avoid the increased dizziness? Has anyone done this and found success? I was just chatting with a pharmacist who suggested taking the dosage every other day instead(have not spoken with my dr. yet), but I am just wondering if anyone has had any success with this. Would love to get any feedback/ Thanks!

How much are you taking? 25?

I personally found it only caused increased dizziness for about 5 days from when I started taking it or when I changed doses., so if you are already a few days in you might only have a few more days of “bad” to get through. Some people don’t tolerate it, but those that do seem to settle down within about a week of taking it give or take a few days.

I don’t know of anyone who has tried the every other day thing so I can’t recommend that. i do know people who have gone up by 12.5 increments instead of 25 and I know that has worked. Going up 25mg at a time isn’t fun, that is for sure. But for me, I was back to “normal” by day 6 pretty much like clockwork every time I upped the dose by 25mg, so perhaps if you can hold on for a few more days you will start to feel better.

Please keep us posted.
I have also just started so I am interested in peoples experiences.
I have only had one day on 25mg and apart from some drowsiness I have to say I am impressed with my first vertigo free day… fingers crossed.

I will see how today goes and how bad the dizziness is…last night was day 4 of taking it, and I have had the dizziness for 2 days…I took the full 25 last night. I sort of want to try and see if I can get through the week with that amount rather than going with half the dose. but if I really feel horrible, I may just have to do that. Thanks for your feedback and I will keep you posted!!

Mandcha I always found day 3 or 4 after changing things to be the worst and then I started getting used to the new dose, so hopefully you start feeling a bit better soon.

Tangled–not to be a downer, but there isn’t much chance that the Topamax could have stopped your vertigo after just one day of taking it. Even in the most optimistic of situations it takes a few weeks to start working and in general it is expected to take several months to be effective. I’m very glad your are feeling good, but I wouldn’t attribute it to the medication this quickly. Obviously I hope you continue to feel good!

I just recently starting taking topamax on August 5 and just increased my dose to 3 pills last night. And I always feel my worst around day 3 every time I up my dose. My first 4-5 days were hell. Week two was much better. Every time I was supposed to increase by 25, I would increase by 12.5 for a couple nights first just to make it a slower increase. It has been a hard pill to adjust to but I am determined to get through it as its such an effective drug for MAV. And if we don’t give a drug it’s fair time than well NEVER know if it was going to be THE drug to fix us. And than we end up spending months to years trialling drugs. My dr who is a specialist in MAV said to give it 6-8 weeks once I’ve hit my full dose.

This is an incredibly effective drug and the initial side effects suck. But most side effects go away. For me, I was severely depressed, nauseated, tired and dizzy. But I got through all that.

Good luck.

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I am so torn about what to do. I have a friend who is a naturopathic doctor who suggesting cutting the dose and titraing up rather than sticking with the current dose. I have just felt so incredibly dizzy today, just wanting to stay in bed(hence spending most of my time online); I know I won’t know if it works unless I give it a shot, and it will be a long road if i decide to take it slow…ugh, it is tough. Also, I am having slight eye discomfort…not sure if I am creating these feelings because I know these are a possible serious side effect. Does anyone know since topamax contains sulfa that if you are allergic to sulfa(the antibiotic) if there is a concern…I thought I was reading something related to sulfa allergy causing eye issues, but I am reading so much stuff(I need to get out more!) that I may not even know what is fact anymore.

Stop reading!! Seriously… I did the exact same thing… After I took my first dose of Topamax I just cried and cried… My husband said… “honey, you have two choices… Take it or don’t … Relax… Let the medicine do its job”. He was right!! I titrated up very slowly…stopped reading about side effects and horror stories and just did it… That was 8 months ago and I’m still here :wink: we all understand on this board… This is a horrible disease and the meds to tart it are scary as well… I’m going through a similar issue with the possibility of starting Effexor in a month… I actually googled “Effexor horror stories”… Ridiculous!! But I did it and scared myself to death… But as my best friend (who is a physician) says… If you read the warnings on Tylenol… You would never take another one again!!

So…hang in there!! I know it’s hard… Titrate slowly and just screw up your courage… Obviously if you feel anything out of the ordinary, talk to your doctor, but I’m doing okay… So hoping you will too!!

Hi Madcha,
I don’t want to hijack your thread but it looks a bit like we are at a similar place and maybe we can share some fears and supports. I am day two on 25 mg… it seems I have vestibular migraine without headache so dizziness is my main problem off meds. Because I have a general sense of off balance I don’t feel as though the topamax is causing dizziness but my vertigo disappeared overnight. JaimieH, thanks for your input, I don’t read it as a downer because I really do want some experienced input. The nature of this condition is that things do change overnight and this is a new med for me so I had to ask the question.
Madcha, I know what you mean when you say “am I creating these feelings”?? I feel like so much has been written about side effects and so forth that I wonder if I’ve read too much! Then I remember that many, many people take much higher doses for epilepsy with great success for many years.

I didn’t realise until I read the post by mavprincess here that the nausea i was feeling last night was from the topamax… it seemed to improve once I took my evening dose .
On the positive side… for those people that this works for … they push through for a week or so and its all good. I know two days without vertigo is nothing but 8 weeks will be a miracle so that’s my benchmark and I am really hoping to stay on just 25 mg.
good luck Madcha - hope my input helps.

And I’ve just read Dee’s post above - GREAT ADVICE :slight_smile:

(posted twice in error)

Hwy Tangled…yes, your input definitely does help, and it is great to have someone in a very similar situation. I have been dx with vestibular migraine with dizziness being the main symptoms…I think I have had it really for over 20 years since college where I had my first real episode that lasted a while…since that time, I have “attacks”, “episodes”, but about 3 months ago, after some sort of gastrointestinal virus thing, it came on full force and had not left me. I have had headaches which has not been typical for me, so I am not sure why that is. It generally has been head pressure, swaying in my head(called them head sways in college) and the feeling that someone is pushing me down. Anyway, this time around, my neurologist started me on nortriptyline and went up fast with it…in the meantime I was on zoloft at a high dose that he said to come down on at the same time(and xanax)…anyway, it was too much for me…so I went off the nort and went back up on the nort. My neuro otologist suggested klonopin instead of xanax so I switched over…felt so relief at first but then started getting headaches…so that is when we started topamax…day 4. Still on zoloft and still on klonopin. Dizziness has been really bad today and slight burning in my eyes. Noticed that topamax contains sulfa which is something I am allergic to, so I am not sure if I should be concerned. Going to go down to 12.5 tonight instead and see how that makes me feel tomorrow. I just honestly hate this stuff. I know I am not alone, but all of this honestly sucks.

One thing I Decided very early on once I starting taking meds was that I would NOT read about possible side effects. I would not go on here even before I start a drug because I did not want to hear it. The mind is a very powerful tool and if you truley believe you are going to get something, there’s a very good chance you might. I made this decision before I went on Effexor because the medication I was on prior to that I made the mistake of reading everything on it an I ended up with almost every possible se. With Effexor, I put the paper away, I literally kissed and blessed the pill every night and it ended up being the best drug for me with maybe 1 minor se. Now if I get a side effect, I will get on the forum or Internet to ask about it.

I started topamax and have done the same thing. But I had already heard some stuff about it. I have had some yucky side effects but they are going away. And the people on this forum have helped. I will tell you to stop getting on the Internet and trust the drug. Increased dizziness almost always happens with most of these drugs. Now the eye problem, I would report to your dr immediately because that is not something you want to mess with. I know it says to report that to your doctor right away. Don’t worry about bothering him on the weekend. There are some things that you don’t want to wait and that is one of them.

As far as tirating slow. I personally don’t ever see a problem with that.

Let us know what dr says about eye. You can call pharmacist.

Thanks for your advice. I am going to try and follow it. I have too much time on my hands and not enough energy to do other things. I chatted online with a pharmacist who was sort of on the fence…since there is not vision problem and not clear pain…more of a burning sensation. I know I should call dr…just not sure if I have creating these symptoms on my own. Thanks again for your support.