Bailing on Topamax, surely it must be time?

[lindsayschu2]

After another 3 hour span of simple partials yesterday, I have to believe it's time to give up on Topamax. Yes, I'm only on 150 mgs--but I never got these clusters of SPs UNTIL I started this drug, and they have only gotten worse as I've increased the dose. My neuro keeps saying "we have to get you on a high enough dose" but despite med increases, the clusters get worse, and med hikes are killer--i don't sleep and get super depressed. I lined up a quick second opinion for Wed. If you think I'm giving up too soon (or agree with my reasoning) I'd love to hear either way, thanks.

 

[Nakamova]

You're the one who's the guinea pig in all this, so your observations and feedback are what matter. Your say is important! If your neuro won't pay attention to what you and your brain are telling him, find one who will.

I think neurologists can get sometimes place too much faith in the power of a given anti-seizure med. They become a little deaf to negative side effects, or too sure that a bigger dose will solve all problems. When I went on Lamictal and started experiencing blurry vision and hair loss, my neuro insisted that those side effects must be due to diabetes (which I don't have and am not at risk for having). She didn't want to admit that the Lamictal was the most likely culprit.

 

[lindsayschu2]

Thanks Nakamova--I'm not saying Topamax is directly giving me simple partials, but what it does seem to be doing is making me much more prone to getting low blood sugar, something I haven't gotten in years. When I get low blood sugar, these SPs start and I can't get them to stop. I've stuck this out for months and don't want to feel like I'm giving up too soon but I feel like I'm going the wrong direction. Curious if going off Lamictal resolved your issues?

 

[giveasmile]

I don't think you should stay on a medicine that is giving you clusters of seizures and making you have insomia and depression. If it were controling your seizures then it might be worth hanging in there. It doesn't sound like this is the case.

One of the drugs I tried gave me increased (and clusters) of partial seizures, too. My doctor took me off and put me on something else.

 

[Belinda5000]

I'm waiting for my neuro to call me back this evening about the simple partials I had Sunday. Topamax works for me I take 200Mg twice a day though.Everyone needs a neuro who listens to them.

 

[Nakamova]

Curious if going off Lamictal resolved your issues?

I'm still on Lamictal, but I stopped at a lower dose than my neuro wanted me at, and then tapered even lower still, with no problems with seizure control. The hair loss stopped, but the blurry vision is still a problem.

 

[lindsayschu2]

Unfortunate about your vision, good at least on the hair loss--I think that is important

 

[kaelieh]

I would say it's definitely possible, and if they have gotten worse with dosage increases I think that makes it more likely. What has your titration schedule like?

The reason why I ask is because I recently started taking Topamax for migraines and shortly after I begin having seizures again. I've been on topamax for about six weeks. I was only on 50mg at bedtime of topamax when I started having seizure after being seizure free and off meds for 3.5 years and I was having clusters of simple partials lasting for about an hour or more and I've had two complex partials, since then my Neuro upped my topamax to 50mg twice a day and I've had at least one absence seizure, but no complex partials, I've had simple partials but not in the clusters like before.

The topamax has helped tremendously with migraines though. I went from only having one maybe two functional days a week if I was lucky to having only one migraine once I got up to 50mg of Topamax. In my case I don't think the topamax is causing my seizures, but they're doing a new EEG and MRI in a couple of weeks, the CT was clear, if they're both clean again, I wonder if it's a possibility that might be worth checking out. If you do consult another Neuro about topamax causing seizures please let me know what you find.

 

[lindsayschu2]

Kaelieh I find your post very interesting--I never had clusters of simple partials in my life until I started Topamax. The more I've titrated the more frequent they have become, and I have often thought Topamax may have been the reason. I did see another neurologist today, she didn't comment on whether Topamax was to blame or not, just said that if it wasn't doing the trick we should add another med, so I started Lamictal today (so I'm on three for a while and will stay on Lamictal and Topamax, but possibly wean off of Topamax too at some point). My clusters began at 50 mgs, and have gotten worse and more frequent up through 150, which is where I am at today. Titration has been very slow, and has only happened after I've had another cluster of simple partials. I'm curious if you feel that your clusters start when you are hungry--most of mine start when I feel like I have low blood sugar (which I didn't used to get).