Topamax

[Kate]

My mom just left to the pharm to pick me up the prescription my neurologist called me in after my most recent (and worst) seizure.

She is putting me on Topamax only take 50 mg a day along with Keppra 1000 a day. I'm actually surprised I'm only taking 25 mg of the Topamax at night and 25 mg in the morning. I sure hope this works.. I expected it to be a higher dose. But I don't know a lot about the drug anyway.

I'm already on Valium because of anxiety, but it is what they gave me to get me out of my worst seizure last Thursday.

I was put on dilantin after my first set of seizures, but had a horrid allergic reaction. Than I had an allergic reaction to tegretal and depakote. Im always forgetting the names, I put the wrong one first and had to edit the post and change it, lol.

Anyway, have you ever been on Topamax before? Along with Keppra are the side effects going to be bad? I'm hoping not.

[Bee91]

I'm on Topamax right now...not paired with Keppra, but it's not a horrible drug. I've been on it twice...last time I was on it, I hallucinated-very, very bady. I saw dead bodies, my skin fall off..things of that nature, but that's becuase my neurologist put me on 8 times the amount I should have been on! --So don't worry...this won't happen with you!

Now that I'm on it again, things are A LOT better! No hallucinations. But you can hands and feet might get a little tingly. Also your concentration level drops.-Which sucks. And I think you are supposed to drink more water or something? I don't know? I remember last time I was on it I was always thirsty, no matter how much water I've drinken. But most people don't have much problems with this med I don't think...

[Dutch mom]

Hello,

My son was on Topamax twice (first at age 2 together with clobazam and valporate, second time at age 4,5 together with ethosuximide.)

Topamax can have anorexia as a side effect. It's not only used for epilepsy but also for obesitas/weight loss because it can kill your appetite.

Both times my son was eating well but he wouldn't drink fluids anymore. Getting only 400-500 cc a day intake was a real fight. In fact, on Topamax you need to drink enough (better: extra) fluids to 'rinse' your kidneys. This drug is going out of your body by the kidneys instead of the liver and can cause kidney stones or kidney failure. I know several (young) children with (severe) kidney problems because of Topamax.

Another possible side effect I know of is that many kids on Topamax aren't able to sweat anymore. So beware for overheating in the summer.

I know about several kids who got seizure free on Topamax, especially kids with Dravets syndrome (SMEI) and Doose syndrome (MAE) and kids with myoclonic jerks tend to react well on it.

My son has tried Keppra too (not together with Topamax.) It didn't do anything for his seizures and it didn't give him any side effects (as far as we could notice, he's handicapped by braindamage and can't tell us how he feels). We were told Keppra should give a positive effect in a relative short period. If it doesn't, it's usually weaned of after a few months. Other parents noticed behavioural problems as a side effect of Keppra, especially with kids who had behavioural problems before, these worsened on Keppra.

So far my knowledge and experiences with both drugs.

Greetings from a Dutch mom of an 8 year old boy with Lennox Gastaut syndrome, anti-epileptic drug free and on the ketogenic diet for 3,5 years now

[Kate]

Thank you both for your replies. Weight loss? Oh wow, not complaining about that one! lol. I'm starting NutriSystem in January (already have the food, but decided to wait till after the Holidays to start it.)

I'll try to make sure to drink a lot of water while I am on this medicine. I need to be doing that anyway.

I found out why the dose is so low. I thought 50 mg per day was low, but my doctor just started me on this so she could increase it over time. She did the same with the Keppra, I started it at a very low dose.

I do have side effects from the Keppra.. mainly I get angry easily. But tonight I'm starting B6 along with it, so I really hope it helps! I don't like getting agitated so easily.

[Nancy]

I went on Topamax as soon as it was available -- increased the dosage too quickly and my weight crashed to 94 lb (fully dressed in the heaviest clothes I could find because I knew my neurologist would be hysterical) -- I quickly reduced the dosage then increased it very slowly.
I'm still on it and doing OK. I take three 100mg tablets per day with four 300mg Trileptal.

At one point in there (just before the surgery, I think) I was taking Keppra along with the Topamax and Trileptal.

[Bernard]

At the bottom of the page there is a list of threads related to Topamax. You can also use the search function to find more info/feedback. It's been discussed here quite a bit.

[Bee91]

Oh yeah, I forgot to mention weight loss! That is a biggy cos they also use the drug for people who are overweight.

Last time I was on it, I lost ten pounds in one week.

[Grneydgurl]

I have never had my medicine's paired with something else. But Topomax gave me the side effect of neuropathy. I would get sharp shooting pins and needles in my legs, kinda like when you leg falls asleep.

[forward2007]

I just got prescribed Topamax today. I'll be slowly increasing the dose up to 50 mg BID. I already am taking Tegretol XR 700 mg BID and Keppra 1500 mg BID. I don't think the Tegretol XR or Keppra are working though and that's why I am starting on the Topamax. The only drug I took from 1987-2007 was Tegretol or Tegretol XR and it controlled the seizures until 2007. In addition to the Tegretol XR I started taking Keppra on 12/14/07 at 500 mg BID and went up to 1500 BID on 01/02/08. I still think I had two small seizures including while taking the Keppra @ 1500 mg BID so I told my Dr. I don't think the Keppra is working. That's when he could tell I wanted to try another anti-epileptic drug and he suggested Topamax.

[Birdbomb]