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A MyEpilepsyTeam Member asked a question 💭
Brisbane, AU

Hi guys,
I'm not on any medication at the moment for my tonic clonic and grand mal seizures.
I'm wanting to speak to my Dr about maybe starting Topomax.
Has anyone been on it? Any side effects? Does it help stop seizures?
Did you take topomax in conjunction with other seizure meds or on it's own?
Thanks heaps.

December 15, 2015
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Answer Summary

Members shared a wide range of personal experiences with Topamax in response to a question about starting it for tonic-clonic and grand mal... Read more

Members shared a wide range of personal experiences with Topamax in response to a question about starting it for tonic-clonic and grand mal seizures. Several members noted it helped reduce seizures significantly, though others found it ineffective, and common side effects mentioned included kidney stones, urinary crystals, cognitive fog, and stopped sweating. A recurring theme was that everyone reacts differently to seizure medications, so working closely with a doctor and being open to trying different combinations is key to finding what works.

A MyEpilepsyTeam Member

Oh wow sorry to hear that. My son gas Autism cause I was on Dilantin when I found out I was pregnant. It causes Autism to little kids an unborn babys. I also read it can cause tumors an heart problems.

December 19, 2015
A MyEpilepsyTeam Member

Dilantin is not a good medication at all. It causes to many bad side affects. I was taken off of it.

December 18, 2015
A MyEpilepsyTeam Member

I've been taking Topomax since the brand came onto market. It was discovered I do very well with the brand Topomax as it manages my seizure flow. The insurance company automatically switched me to Topirimate, the generic brand, when it came onto the market then the seizures began. I needed to have a letter written stating I could not take the generic brand as the brand worked better for my seizure activity. Once that was done, the insurance agreed to work with the epileptologist and give a reasonable pricing for the refills.

September 15
A MyEpilepsyTeam Member

Hi Gary Smith heare the best meds. that i ever used was Dilantian 100 m gs 3 X a day and phenabarbitol 97.8 mgs 2 X aday and seizure free. Every one have a good one.

February 9
A MyEpilepsyTeam Member

I've been on Topamax about 15 years. The only side effect I got from it was I stopped sweating. I works good I take it with onfi and clonazepam. I have hard to control seizures but this combo really works well for me. I've tried every medication out there almost so you have to remember what works for one doesn't for another. Same with side effects Lamictal was ok at a low dose but at the dose I needed I had tremors so bad I couldn't get a spoon to my mouth with anything in it. Good luck finding the ones that work

July 12, 2024

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