Whos been successful with topamax?

topamax was actually one of the first drugs i tried two and a half years ago. I couldnt stand it. I was on 30 mg daily for 2 weeks and legitimately could not function. Now, I’m trying it again because I realize two weeks far too brief of a trial. My neurologist has started me on 15 mg and says an “active dose” is 50 mg which I’ll work up to in like 6 weeks.

15 mg is still debilitating, I can barely think, articulate, when you feel physically challenged, your words, yours thoughts; well, theyre all you have, I do not enjoy feeling this way but I can’t give up so soon this time.

**WHOS HAVING SUCCESS ON TOPAMAX? **

By the way, I’m also on 1 mg daily klonopin, to help sedate my CNS.

Hope everyone is doing well! :slight_smile:
Selena

Hi Selena,

Julie and Jen are on Topamax and I believe are having terrific results, so I’m sure they’re both going to chime in when they wake up! I think they say the trick is the very slow titration to beat the side effects.

Good luck, hope all goes well
:stuck_out_tongue:
regards
Judy

Selena,

I am just stopping Topamax after a two month trial. The mental confusion and fatigue was too much for me. I almost stopped after just a week or two, but I decided to stick it out to see if the side effects would go away. I worked up to 100 mg (50 mg twice a day) after 5 weeks. I have been struggling a lot at work to concentrate enough to get my work done. I haven’t been very successful, so the other day I skipped a dose so I could work on a report. My concentration was better, so I skipped another dose. I think my IQ jumped back up a few points!

I’m now officially quitting the Topamax. It is just not worth it to me. However, I don’t regret hanging in for the two months. At least I can say for sure it is not the drug for me. I know they say you should give it at least 3 months to know whether it is going to help or not, but for me it doesn’t matter because the side effects are not worth any benefit. I’d rather be dizzy with a headache and the rest of my symptoms than stupid, which is what it was making me! I’m a CPA, and I embarrassed myself in front of my daughter and her friend last week because I couldn’t multiply 8 x 7! That was definitely a result of the Stupamax. And this is just one example. :roll:

Anyway, this is my experience. As we all know, everyone is different. You have to do a cost/benefit analysis for yourself. Good luck! I wish you well!

Marci

I’m on two anticonvulsants (Keppra and Neurontin) and definitely notice some memory loss and word-finding difficulties but they don’t seem to be as severe as what those on Topamax report. I doubt they are as effective either, but they are working great for me at fairly low dosages (Keppra 500mg/day and Neurontin 500mg/day). I’m a computer programmer and work long hours - I’d be hopeless if dumbed down too much by drugs!

Something worth considering if you’ve had no success with some of the other effective drugs like Effexor and Verapamil.

Adam

Jude was right, i’ve had great success with Topamax. I started at 6.25 and added that much once a week, i’m up to 75 mg. As per Hain, via a very generous and special member of this forum, who does not post, but was kind enough to pass Hain’s instructions along to me, as my doctor left me with no instructions at all, you are not to add if you have any tingling, until the tingling goes away. In addition, if you develop cognitive problems, you should go lower and stay there until the cognitive problems go away and then resume your titration.

Truth is, i’ve been able to add 6.25 a week with steady improvement the entire time. I have had minimally increased word finding difficulties and i find that when I read my posts i have often typed the wrong word. Beyond that, i’m fine. And, most of all, i’ve had great improvement.

A year ago i was bedridden. Klonopin got me out of bed and able to take short walks. Topamax has me walking 3 miles a day.

Julie

and I forgot to mention, i’m all the way up to 87.5 mg. Hain doesn’t go past 100. If you’re still having symptoms at that point, according to my dear Hain patient friend, he adds a bit of Effexor. And he goes real slow with Effexor too. He has you open up those tablets and actually count out a certain number of little pills.

So i’m sure I’ve got Effexor in my future, because although my progress has been great, my illness was severe and I have a bit of a way to go. I will gladly add the Effexor when the time comes, as long as I take it slowly.

JJ

Hi Julie

I’d love to hear his instructions for Effexor if you have them? I found myself pouring out a random amount of the capsule and am not sure I was accurately dosing myself.

Thanks
Adam

— Begin quote from “Julie”

And he goes real slow with Effexor too. He has you open up those tablets and actually count out a certain number of little pills.

So i’m sure I’ve got Effexor in my future, because although my progress has been great, my illness was severe and I have a bit of a way to go. I will gladly add the Effexor when the time comes, as long as I take it slowly.

JJ

— End quote

Adam, let me PM you on that one tomorrow morning, my computer is under a worm attack and i don’t think it’s going to give me anymore for tonight.

julie

Adam

I can post this in public, i thought I was going to post some info which was not strictly as per Hain, but the following is:

He instructs, in the beginning, to open the capsules and pour out 2/3 and titrate up from there. Since my friend has not started Effexor, i don’t know how he will have him continue the titration. When I find out i’ll let you know. As far as pouring out 2/3 i could imagine (?) that one side of the capsule holds 2/3 of the pellets and one side holds 1/3.

Hope that helps.

anybody out there know a good router/firewall to use???

Julie

I had a nuerologist perscribe me topmax for headaches and it only made the headaches worse and gave me a temper so I quit taking it within a couple of weeks. One thing I did observe was that my falling decreased drastically after a few days.

About a year late I got an MAV diiagnoses and that was part of the doctors basis for her diagnoses. Went on it again and the temper and headache returned, but I stayed on it long enough that I actually had a several good days giving me a temperary end to the 18 month 24/7 dizzies.

In the end, I had to quit but could declare a temporary success. Never had the dopomax affect that other have tallked about either. Each time I had some minor tingling and abdominal cramps each time I tyrated up, but they always went away with a few days.

Brian

Thanks Julie

I’ll get counting… I plan to start it again after having to abort my last trial of it.

So i talked to my mystery member again and he told me that the pellets are all different sizes and now he’s wonder if actually counting them might not be the best way to go if you really want to be on the button accurate. Volume or weight would be best if you’re looking for accuracy, but you would need a scale from a medical supplies outfit.

But, heck, I was cutting pieces of Zoloft into 1/8ths, there is no way i got those pieces cut equally. I was told by a psychopharmacologist that even cutting scored tablets, they are uneven by something like 10% ??? it could have even been 15%.

Good luck with you re-start Adam, whichever method you decide to use, it’s got to be better than “random” :slight_smile:

Julie

Julie,

If you wanted an to do it by weight you could also look at hobby stores for a scale.

hobby stores? like what kind of hobby stores?

i just googled chemical scales and got a ton of hits, including pharmaceutical scales and fishing scales :slight_smile:

i’m remembering those scientific supply catalogues from when i was young.

thanks brian, let me know what kind of hobby stores, i can’t get my mind around that :roll:

HA!!

I found some pharmaceutical scales on Ebay! My computer is dying, so I can’t get very far with it, but they are there :slight_smile:

Adam, i hope you see this post.

I can’t believe it, we’re all going to become a bunch of amateur semi-compounding pharmacists :slight_smile:

— Begin quote from “Julie”

hobby stores? like what kind of hobby stores?

i just googled chemical scales and got a ton of hits, including pharmaceutical scales and fishing scales :slight_smile:

i’m remembering those scientific supply catalogues from when i was young.

thanks brian, let me know what kind of hobby stores, i can’t get my mind around that :roll:

— End quote

Hobby stores that sell stuff like model cars and electric trains and stuff like that. Our local hobby store sells scales for mixing epoxy glues, or paint or other stuff like that.

Thanks Brian, i would never have thought of that. i’ll look into it.