Topamax - what are you doing to me....?

Hi all,
just needed to post this for general info and also for a need to vent, I guess!
I’ve been on Topamax for over a year now. I’ve been taking things really slowly in an attempt to find my ideal minimal possible dosage and minimise any nasty side effects as much as possible (Topamax and I haven’t always seen eye-to-eye!)

But I’ve been at 100mg now for the past 7 and a half weeks(!), and initially thought I’d made the jump from 80mg without any problems. But after 7 and a half weeks at 100mg, without any issues, I’m now having mild headaches, neck/shoulder ache, loads of extra dizziness, anxiety/panic issues, and even a couple of episodes of ghostly ‘after-images’ (for instance, I looked at a radaiator the other day, and when I lookd at the wall I could still see the radiator’s vertically striped lines ‘painted’ onto the wall). If ever proof were needed that it really does take months at a particular dosage, for Topamax to reach full effect, then this is surely it! (BTW, nothing else has changed - my diet is always stable, sleep, stress, etc - all stable - I’m quite sure this is the Topamax because the edgy anxiety/panicky issues I’m now having are exactly like those I experienced when I tried to first make the jump from 25 to 50mg and had to retreat back to 25mg, before eventually reaching 50mg via 30 > 40 > 45 > 50). I’m determined to reach the ‘magical’ 3 month mark at 100mg - I’ve come too far now, not to!

No wonder people say that you must give Topamax months at a particular dosage before the effects are known!
Best to all,
Tony.

Hi Tony: I am so sorry to hear that you are having such horrible symptoms. Even though I could not tolerate even the low dose of topa you were a tremendous inspiration to me. It sounds like you are determined to stick it out and I wish you all the best with it! Take care,

Karen

Hey Tony,
Thanks for sharing. I guess the one thing that is consistent with MAV…it’s inconsistent!! ARGH!!
I get that too, where after I have been watching TV or looking at a light and then it gets dark, I can still see the silhoette of the shape…and it lasts a good long while…not just 5 seconds…so weird!!
Good luck with your topomax journey! IT’s a crazy one!
Kelley

Hi Karen and Kelley,
thank you for your kind words. :smiley:

In a strange way, I’m also trying to put a positive spin on it, in that (to my mind at least) it’s irrefutable proof that Topamax really does need months at any given dosage before the full effects are known - and therefore before the full effects of any potential benefits can be known. Strictly speaking, I have until the 22nd March before the 3 months are up, so I still have a little while yet. I remain hopeful, believe it or not. Partly because I’ve had ‘mini-successes’ along the way - some settling of my 24/7 symptoms at 60mg, and then, 2 weeks or so into this recent 100mg stint, I experienced something I haven’t felt in the entire 3 1/4 years since this whole MAV hell started - a few consecutive days of what Dr. Nicholas Silver (I think it was him) described as a ‘brilliantly clear head’ - it was great - no brain fog, or heaviness, and reduced dizziness. So, fingers crossed that my MAV brain and Topamax can kiss and make-up soon… :wink:

Thanks again,
Tony.

Sorry to hear you’re having headaches! I’m actually experiencing some more dizziness lately and thinking I may ask about increasing to 125 mg when I see my neurologist next week. I wonder if I need a med increase? I’ve been at 100 mg for 6 months now. Or it could be that I’m still not over the cold and sinus/ear congestion I got in January…ugh MAV truly sucks! That a cold can mess you up for so long.

Have you considered adding anything to the Topamax? Just curious since I know for some people (myself included) one med is often not enough to get to the right comfort spot.

Hi Anne,
I’m actually also on 600mg Gabapentin daily and that’s been steady and unchanged at 600mg for some time before I went to 100mg Topamax. My neuro wants to increase that over the coming weeks/months. Were you able to get dizzy-free on 100mg Topamax (or I guess with 100mg Topamax and another med based on your comment)…? Hope the cold has cleared up now!
Best wishes,
Tony.