Hello all,

Just thought I would update my experience while I am on Topamax.

By the end of week two I was having zero headaches (yay is what I was thinking) at 50 mg. I was supposed to up my dose to 75mg at the end of the week. I chose not to because I was having good results with that dose and my side effects were ok ( I was not having the "dopamax" effects yet) and I was also afraid that might start with a high dose.

Does anyone else get ear pain? I do! Sever ear pain precedes my CH almost a warning to about 90% of my CH's.

Anyways now at the very end of week three my ear pain is coming back with some shadowing Ch's. So Tomorrow I will up my dose as I should have on week two.

I know I should follow the Dr's directions I just felt if I had something that was working for me at certain dosage why up it and risk ugly side effects?
This whole thing is trial and error and I should have complete faith in my Doc (she is very aggressive and on the ball) But I can't help but walk my own path.

I hope at 75mg daily, week four will continue to keep me on the right path of CH free days!


My current side effects are:
-constant tingling in extremities and face
-occasional dry mouth
- bad muscle aches (this one bothers me the most! I am always feeling like I went and worked out at the gym the day before for the first time in a decade) Different muscles hurt different days.


Thanks for reading! I would love any feedback or questins!
To a pain free Night................



Kelly~

I never said I wasn't updating her at all. I was stating what my plan for that wk was. And the fact that it did not work. We had discussed options like this before the treatment started. For example some of her pT's that reached a therapeutic level at 75mg others were on 150 daily. We just need to find out what works for me. That is why I felt it was ok to do so.

Thank you for your feed back.

Hi, I had about 5 weeks of treatment with topomax and went from 25mg to 100mg a day. Only after 2 weeks at 100mg a day I had a kind of relief from the CH attacks (not sure if it was thanks to topomax!). But the side effects were becoming very bad. Before they were meaningless.  Tingling in hands and feet, unable to eat, severe weight loss (12 kg in 5 weeks), belly and stomach ache, unable to concentrate, feeling lost all the time... a really long list. And after 6 days the attacks came back. 
A blood test, done earlier this week, showed that the white blood cell count was way too low so now I have to stop with the topomax treatment. So keep an eye on yourself... if you start to lose weight rapidly... it's no good!

Good luck!