Topamax?

[Lbueno]

Anybody take Topamax? I've heard, many times, people call it Dopamax. At the moment, I'm on Trileptal, Keppra, and Vimpat. At the moment, they're decreasing my Vimpat so that I won't be taking it anymore and they're going to add the Topamax. Anybody ever have side effects or what is your experience with it?

With my seizures, they're partials, but not like what I read. I have my motor skills and know what is going on while they're happening. The only thing that's affected is my hearing and speech. If someone is talking, it just sounds like noise and I can't get out any words. Everything else is normal. It's been like this for 3 years. My epilepsy/seizures started 6 years ago, though.

The neuro mentioned the Vagus Nerve Stimulation (VNS) a few years ago and I easily said no. He mentioned it recently, again, and I said I'd think about it. Since a few years have gone by and nothing is really changing, I'm thinking about it at this point. I really don't want to have it, though. It's kind of funny.. Of all the possible side effects, my biggest fear is losing or my voice changing. I love to sing. I don't usually speak very highly of myself, but I can easily say that I can sing and have been told by others that I have a great voice. Singing is kind of my stress reliever.

There's still a few drugs that I want to try before going forward with this, but it seems to be getting closer and closer to this, unfortunately :/

 

[Sparkles]

I take Topamax - 250 mg / day. Initially it affected my cognitive abilities, but I think is fading over time. I do have memory issues, but some of that started before the Topamax. I use some tricks like "to do" lists, writing things down, keeping all kinds of other lists, and just having some help from my kids. It's not a huge issue but an annoyance at this point. I also have my fingers and toes tingling on and off, still. And diet coke doesn't taste as good (I shouldn't be drinking it anyway) so I don't drink it much. It's has been reported to help some people lose weight, but I haven't had that experience. I do feel more tired than I wish (hence, the diet coke). When I first started it, and again with the increases, I was very nauseous. I found that if I took a ginger capsule at the exact same time as the Topamax, it helped tremendously with the nausea. That side effect went away in about 2 1/2-3 weeks. It also seems to kicks up my stomach acid and I had to increase the dosage on my Zantac (yup, more reason why I shouldn't be drinking diet coke, I know). And this will sound very strange, but sometimes my tongue feels numb, especially toward the tip. That's all I can think of.

For me, this med has been very, very good. It has decreased the severity and frequency of my migraines and it has decreased the frequency of my seizures (complex partials). My seizures involve trembling hands, followed by the inability to talk, and then falling where I stand, and typically becoming unconscious or partially unconscious and losing some, if not all, memory surrounding the seizure - and then the post seizure is exhaustion, confusion, depression, anger, fear, headache, body aches, lasting anywhere from a few hours up to a day. So decreasing the frequency of that, I'll take the side effects I have. For others, though, the side effects are much worse and had the nausea persisted, I may have thought differently.

Good luck with it!

 

[qtowngirl]

welcome lbueno
ahhhh, topamax. i was on for 2.5 years (200mg x2) and say both good and bad. it was my second seizure med, i was put on it after my 3rd grand mal (11 days shy of) five years free. for about a year it gave me massive constipation, to the point where i asked for a colonoscopy to 'make sure' it was the med. results were totally 'normal' and so the med it was. interestingly after that exam i slowly got better, was soooo relieved. as it's wise/necessary to drink alot more water on topamax i did my best with that as well, couldn't imagine kidney stones. physical-wise that was about all worth mentioning.
i went 10 months seizure-free (partials and grand mals) after starting it, had never been in that place, SO nice. but...
and 'happy anniversary' to me haha.... halloween of 2009 that all ended.... had the worst partial seizure in 15 years of E, then they came back fairly regularly. 14 months later a grand mal (out of 13 g.m.'s pre-surgery that was of the top 2 WORST), out of the shower. partial hit and i started stepping out to try and 'distract it', don't remember my second foot hitting the bathmat. my neuro doubled the dose overnight, which became the first time i understood 'dopamax.' head was in a fog every day. partials slowed down 'somewhat' and not another g.m., but i realized between side-effects and it not holding up seizure threshold at a high dose it was time to go another route.
and that became lamotrigine...

curious why they are promoting the idea of a vns to you? have any of your docs ever brought up surgery?

 

[Cint]

Hi lbueno,

I was initially put on Topomax back in the 90's along with another med (cannot remember) and was slowly titrated up to 400 mgs. a day 2x a day. I was in Zombieland! Thus the name, Dopemax. I would sit in front of the computer and could not remember how to turn it on. I could not remember my own kid's names. I also lost 25 lbs. while taking it and became anemic. Finally my neuro took me off the drug and we went to something else.

I have the VNS and only had the surgery as a last resort. There are plenty of meds and other options to try before having it done. I also had a temporal lobectomy done, to no avail, so that is why. Plus I still take a high dosage of Keppra to keep the seizures at bay. The VNS is not a cure all.

 

[Lbueno]

curious why they are promoting the idea of a vns to you? have any of your docs ever brought up surgery?

They have done tests and such and, as to brain surgery, they can't do surgery because the seizure activity comes from both sides of my brain.

 

[qtowngirl]

what did the tests show (i'm assuming you mean the mri's)? interesting to hear 'can't do surgery'...
if you have partial seizures you have a focal point, which is not both sides, and is commonly looked at for surgery... even if you have partial and generalized. i've had many partials and grand mals; the main reason for surg was a lesion, which caused well over 1000 partials throughout my life, and was considered an 'ideal' surgery candidate.
onder: curious why they said it wasn't an option for you.

 

[Cint]

interesting to hear 'can't do surgery'...
if you have partial seizures you have a focal point,
onder: curious why they said it wasn't an option for you.

I've had partials and generalized seizures, too. I was told I couldn't have a 2nd surgery because of where the damage is-- deep in my hippocampus. If they did go in again and operate, I was told I would end up like an end stage Alzheimer patient- gone would be my memories and speech. That is why I had the VNS. Brain surgery is not an option for everyone.

 

[Lbueno]

what did the tests show (i'm assuming you mean the mri's)? interesting to hear 'can't do surgery'...
if you have partial seizures you have a focal point, which is not both sides, and is commonly looked at for surgery... even if you have partial and generalized. i've had many partials and grand mals; the main reason for surg was a lesion, which caused well over 1000 partials throughout my life, and was considered an 'ideal' surgery candidate.
onder: curious why they said it wasn't an option for you.

I don't remember the exact words other than being told the seizure activity comes from both sides. It's been a while since I've had an MRI. My memory is pretty crappy. I'm not sure if it's the drugs I take or the epilepsy.. Could be both, I guess :/