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New Medications for Drop Seizures?
Epilepsy & Seizures | Last Active: Jan 20 1:31am | Replies (8)Comment receiving replies
@santosha Hi Chris I have had a bit of a look at the new drugs but all seem to have s/e like all the drugs for seizures. I had a good read about cenobamate Xcopri but they only tested the drug on a few hundred people over a year I think it was. It did not seem long to me, so have tryed to see what other meds there are. The Epidilex says it is only really used as an add on drug like many of the drugs. Dr Omar Danoun says if the seizures dont stop after trying 2 of the drugs there is not much hope any other drugs will help. That was the case with me after trying various drugs for about 8 or 9 years until eventually I decided to stop. Especially after some had made the seizures worse. Do any people on this site contact off line. May be via email? Sometimes it can be easier to send info if needed. I read you other message too
Replies to "@santosha Hi Chris I have had a bit of a look at the new drugs but..."
@laura1961
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Chris
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@laura1961
Indeed, AEDs (anti-epileptic drugs) often come with significant side effects. This is exactly why it's so important to find a doctor who is not only an epilepsy specialist, but also truly caring and attentive to their patients, carefully adjusting medications and dosages until you find the best balance between seizure control and manageable side effects. This is a process that requires patience from both doctor and patient, but for me, it's been more than worthwhile!
I know it is said there's limited hope for medication control after trying two AEDs without success or tolerating them. But my doctor takes a different approach. Since surgery would bring me more harm than benefits, we're continuing to explore medication options.
Last year, I stayed almost 8 months seizure-free, which was wonderful progress. But then some focal seizures returned. Right now, we're working together to understand my current patterns and make adjustments to my treatment.
I know the epilepsy journey can be frustrating at times, but finding the right doctor truly makes all the difference.
Chris
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