For those with the Topamax success stories

I just started Topamax at a very low dose of 6.25. My dizziness is now so bad that I am hanging on the walls for balance and my vision is quite blurred. I know from reading that many have an increase in dizziness upon starting Topamax, but I am wondering if it is normal to feel this bad on such a low dose. For those who had a a increase in dizziness was it a dramatic increase and if so about how long before it settled down to at least baseline? My first reaction to anything that increases dizziness is to never do that again, but I realize I might have to feel worse in order to get better. Any thoughts are appreciated.

Tootlebug - I can sympathize! I tried to start Topamax on Tuesday but by Wednesday, I was so dizzy I could barely stand up. I tried to dope up on Meclizine to go to work but on the way there I got so motion sick I had to make my poor husband pull over. And this was only on a 12.5 mg pill (25 cut in half). I didn’t take it today and the dizziness has subsided enough for me to get to work but this is frustrating!! A lot of people swear by this drug and I’m desperate for relief but man, anything that makes me that dizzy is a no-go in my book! I want to try to stick it out but how is a person supposed to function in the real world??!!?? I noticed your post is from the 12th. Did you get the courage to try again? If so, was it any better?

Hi guys, I am sorry you are feeling so crappy! I am only on 37.5 and heading towards 50mg this weekend. I swear I feel more dizzy on it too. I can still go to work but I did have a sudden vertigo spell today when for a few seconds I felt like everything tipped sideways. It’s disheartening when you want something to wrk but I agree… It’s worked for so many. I keep telling myself 37.5mg isn’t enough of a dose to judge yet. As for your first dose, I felt shocking at the start too and it got slightly better. Still not a walk in the park to be honest. Love to hear from someone who did make it to the other side! At what doseage did you see a difference? Were you dizzier on lower doses? I hope you can both keep trying to push on if you can. I know how hard it can be to take something that makes you feel ezactly the way you want relief from! X

Hi, I’m new to the forum - and have been on Topamax for around 4-5 months now (the start date is a little blurry now and again) I started at 25mg - and hated it - I felt rotten, the nausea, headaches, dizziness, I also had a lot of pressure it felt a lot like the beginning of a head cold, confusion, pins and needles - sorry the list was long I called my Neurologist and told him I just didn’t think it was for me, he talked me into trying it for another two weeks, and then another two weeks most of the side effects went away after 4 weeks, there were good and bad days, but eventually the good days were out numbering the bad days. I’m now up to 100 mg a day. Each time I increased the dose the side effects would return, but would dissipate quickly (within a couple of weeks) The side effects are manageable, and compared to living without the meds, give me the meds any day. I wish you all the best of luck - give it your best shot :slight_smile:
(I’m also on Sandomigran 5 tabs, Lexapro & Thyroxine)

AS I read all of your posts, I remember the days of 25 mgs and 50 mgs and how horrible the first months of topamax were for me. I can tell you that it DOES and WILL get better with TIME. If you give up at a small dose, before you hit 100 mg, you will never know if it can work for you. Some of my worst days were when I first started topa. The increased dizzinesss, the awful feeling of pins and needles, i felt like i had the flu at one point…BUT… all of this goes away… and when you get to 100 mg…after about 2-3 weeks…you start to feel better. Life is easier. You’ll see. You just have to ride it out and be a soldier.
Best of luck,
Lisa :smiley:

Lisa, Thanks so much for your encouragement, especially when you aren’t feeling so well yourself. I hope you get back on top of things. It is hard to keep going, especially the times when I seem to be going backwards!! It’s only posts from you & others on the forum, who have made it through the hard times, that give me the determination to get to that magic 100mg!
Barb

Barb–

It’s been 13 days since your post. How are you feeling now? And what dose are you on? Are you still at 6.25 and still super dizzy or are you leveling off or have you increased again?

I ask because I remember HATING Topa at first, and there are times when I still don’t love it, but the good is currently outweighing the bad, so–

Sometimes–to this day, I feel “buzzy” starting about 20 min after taking my topa dose and lasting about 30 min. It’s more in my hands and feet then my head but it’s an electrical or literally buzzy feeling like a post vibration in the hands–like after you’ve used the pushmower for a bit and your hands are vibrating.

It is a heavy drug–and it may not be for you. But if you’ve been on the 6.25 and now are back to your baseline dizzy and feel no better than when you started, then it is time to up your dose. Until you get to at least 50 mg, you won’t feel any “betterness” from the drug, only the yucky parts–which is crap, but true and unfortunately the doctor doesn’t really tell you that part. So after each set of side effects you expect to feel “better” but at the low doses, you just don’t, so you figure why keep going–but when you get to 25 adn 30 then 40 and 50 mg you will notice that you actually feel a bit better in between the dosage intervals and that’s when you realize it might actually be worth the trip to get to 100mg.

That’s the way it was for me anyway–

Hi dolf
Thanks for asking about the Topamax - in fact I started way back in January & am now in my 3rd week at 50mg! I’ve read so many posts about it I knew it wasn’t going to be easy - I just hoped it would be easier for ME!!! However, desperately wanting this med to work & help clear up the visual vertigo (which affects so many areas of my life) I was determined to get to the magic 100mg .
The increased headaches & dizziness were a real downer & it wasn’t until I got up to 37.5mg that I began to see some very small improvements in the visual vertigo. Then I had a horrible ‘relapse’. I totally lost my balance (as I was two yrs ago) - couldn’t walk in a straight line, falling all over the room & lurching from one piece of furniture to another. Upped the Topamax to 50mg & hoped that might help. Went on for another two days so emailed Dr Granot who suggested I come off the Topamax. He thought it was a very odd reaction.
I talked it over with my GP & told her I wanted to take the “wait & see” approach & give the extra Topa time to work so we agreed to do that. I’m happy to say that now on week 3 of 50mg Topa my balance is back to what is was before the relapse & visual vertigo improving too.
So, I couldn’t say to anyone that it is an easy med to get on to but I’m glad I’ve coped with all the ‘ups & downs’ so far & got to this point where I can think maybe all the bad days will have been worthwhile and I can have some kind of ‘normal life’ again.
Barb