Starting Topamax...

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Katie

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I know, a scary drug to start. But my neuro has been suggesting it for a while. I refused for a long time, and he understood and never pushed it on me. But now I'm getting desperate.

I have petit mals and myoclonus. Keppra XR did amazing things for me. I was almost 100% seizure free on the lowest dose. The only side effect I had was anxiety. I already have GAD, so it just sort of upped it.

I've tried Lamictal XR since, which made my seizures more common. I have tried Lyrica as well, which really didn't do much.

I have migraines too. So he thinks Topamax is worth a try. I'm educated on the side effects and I can call him as soon as I think I'm having any, and he won't hesitate to switch me to something else.

I was wondering if anyone has any good experiences with Topamax? All I hear are horror stories of drugs and no benefits. Just curious if it's helped anyone.

Thanks!
 
Hello Katie,

I take Lamictal XR and 250 mg of Topamax a day for tonic-clonic seizure control. This combo has worked out really well for me--I haven't had any tonic-clonics since being on the 200 mg of Lamictal XR and the Topamax. I still have the occasional simple partial, but that is not a big deal to me.

Topamax gets a lot of mixed reviews on both this site and others that I have been to. People either seem to love or hate the drug. Everyone is different, so there is no one "ideal" AED for everyone out there with epilepsy.

With that being said, I personally have not had any issues with Topamax other than during the initial titration period. I had some of the cognitive side effects such as short-term memory issues and trouble concentrating, but that went away after I was on the drug for a few weeks. The side effects that have stayed are weight loss, blurry vision (not serious), some drowsiness, and (sorry to be gross) loose stools. The digestive issues seem to be lessened when I take the medicine with food.

The only thing that's really annoyed me about Topamax is that it has caused me to lose 18 pounds that I did not need to lose. I'm normally 115 lbs (5' 4" tall) though now I'm fighting to stay over 96 pounds...guess it's a good thing I'm small boned otherwise I'd really look too thin. Most of the other people that I have talked to who have taken Topamax gain some or all of the weight back after being on it for 3-6 months but this has not happened to me. Of course, I'm kind of new to all of this--I didn't develop epilepsy or migraines until June 2010. I started Topamax in June 2010.

Topamax has really helped control my seizures and is also pretty helpful in making the headache that this Lamictal XR is causing tolerable. It is a great headache medicine for migraine headaches, and actually scares me a lot less than the Lamictal XR I'm on does.

I'm glad to hear that you educate yourself on medications before you take them--I do the same and it's important to know what to watch out for. See if your doctor is willing to start you on a low dose and titrate you up slowly on the Topamax if you decide to go with it.

So the short answer to your question would be yes, I am having a good experience with Topamax, outside of the unwanted weight loss :)
 
Thanks!! That's what I need to hear, some positive encounters with the drug. I was getting really worried that I'd made the wrong decision and I haven't even tried it yet!

I wouldn't mind the weight loss. I gained 20lbs last year on amitriptyline and haven't been able to lose it. I'm only 5'1" and 123lbs now, but still. It was hard for me.

Does it have any effects on your taste buds? Or is everything generally the same? I'm such a foodie! I can't imagine not tasting food the same way.
 
Ohhhhh, Katie,

Changes in the tastebuds is one of the reasons it works to lose weight. For me, everything tasted like aluminum. Yuck. The exception was anything that was swimming in garlic. So I had lots of italian food, and vietnamese food (garlic tofu and greens!) I also got away with eating some greek food, like hummus and tzatziki with extra garlic. My breath wasn't the best, but I was eating.

The worst for me was drinking anything that was slightly bitter to begin with, like coffee, chocolate, cola, etc. I might as well have nibbled on aluminum siding.
 
Im also on 300 mg of Lamictal and 600mg of Topamax I've been on both for years and haven't had much of a problem with either. I also had bad migraines. Topamax helped with that too. It's not a bad med and it's always worth a try. Just make sure the side effects don't out weigh the benefits. Good Luck :)
 
Hi! Keep in mind they call it 'dopamax' for a reason. I had terrible cognitive side effects for the first couple weeks- I did so many ludicrously stupid things I was nearly in tears a number of times, but it does go away. Be patient with yourself. Don't be afraid to ask for help.
 
I was switched from Keppra to Topamax this past September. I think I am on a really small dose of Topamax though, at 100mg, twice a day. For me, it has been a lot better then the Keppra so far, which I was maxed out on. I can actually think better, and have not really had any other side effects. I was hoping it would make me lose weight, but unfortunately, that only happened because I run almost five miles a day. Everything still tastes the same to me. I have had a few small issues with smells, I don't know if they were from the meds, or maybe they were auras... But anyway, maybe it is too small of a dose to say. I don't know if it is working on the seizures yet, because mine happen about every five months (I am almost due...).
 
Yep. I was silly for a while. But that went away after a few weeks. Now I'm on a pretty high level and doing fine. :)
 
Thank you so so sooo much for your input everyone. I really appreciate it. I like knowing what to expect as much as possible.

I picked up my prescription tonight but I won't start it until tomorrow night. I do Flyball with one of my dogs Saturday mornings, and I don't want to be unable to drive tomorrow morning or just completely out of it. Also, Garrett is working tonight so I am home alone. I never like to start a new medication when I am going to be home alone. You just never know what kind of reactions you're going to have.

Tomorrow morning I won't take it either because of the Flyball.

But tomorrow night Garrett will be home and I don't have anything going on. So I should be good. Sunday is just dinner with my parents but they're familiar with me trying different meds so they understand.

I'm both excited and nervous. I'm excited because I will know pretty instantly whether or not it's working for my seizures since I have them all day long. And I'm hoping it will help with my migraines too.

And nervous, well, for obvious reasons.

Anyway, thanks everyone for the input (keep it comin'!) and for listening to my ramblings!
 
Katie,

The doc is keeping you on your existing medication while you ramp up on the Topamax, right? That's the usual method.
 
Yes, I'm weaning off Lyrica and starting 50mg of Topamax twice a day.
 
Usually (but not always) they keep you on a full dose of your old med while you ramp up on the new one. That's to prevent seizures.
 
Lyrica didn't do anything to help my seizures, so I think that's why I'm on the lower dose already. I take it tonight! I'm nervous.
 
When I switched from Keppra to Topamax, the doc had me lower the Keppra every week, while raising the Topamax every a little every week. But that might be because, like Katie, the Keppra didn't seem to be doing anything to help my seizures anyway.
 
Well, I just took the first 50mg. We'll see how I am in the morning!
 
Topamax has given me the worst anxiety I have had in a very long time, so after only two doses I stopped it. I left a note (I work at my PCP's office) for my PCP asking about upping my anxiety meds to see if I can manage seizure meds better.

I want to see if I can make being on Keppra XR bearable. Topamax didn't help much with my seizures and had a bigger impact on my anxiety than Keppra XR did. I was almost seizure free at the lowest dose of Keppra XR.

So I have some experiementing to do. I think because my anxiety is so bad on its own, I am much more prone to having overwhelming nervousness as a side effect on any medication.

Sigh.
 
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