Medication for Drop Seizures

Good morning @laura1961,
I'm so sorry about the trauma that led to your epilepsy. I hope you're in a safer place now.
Twenty years is a long journey, and I can understand your frustration with medications that didn't work. Finding the right medication and dosage can be such a struggle and demands so much resilience from us.
The good news is that several newer medications have been approved since 2012 that might be worth exploring – Xcopri (cenobamate), Briviact (brivaracetam), Epidiolex (CBD), and Fycompa (perampanel), among others.
You mentioned Keppra and Epilim – have you tried other medications besides these two? What kind of doctor has been treating you – a general neurologist or an epileptologist? Have doctors shared with you what type of epilepsy you have?
I hope you'll soon find a treatment that helps you better control your seizures. Crossing my fingers for you!
Chris

@terbrown and @heatherae, you both had head injuries that led to changes in your seizures. Would you mind sharing more of your experience with @laura1961? Thank you!

@santosha I'm not sure who some of these reply's are gong to? Chris has been so helpful.

@laura1961
Hi Laura,
I see that @lisalucier has already answered your question in another discussion of our group. Just to clarify how the platform works: when you post in the Epilepsy & Seizures Group, all members can see your message. But when you tag someone specifically using the @ symbol (like you did with me), that person also gets a direct notification. This helps ensure the right person sees your message!
Let me know if you have any questions about how the platform works—happy to help!
Chris

@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

@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

@laura1961
Most members exchange experiences through posts so that everyone can learn from and support each other.
If you'd like to speak with a member privately, you can use the private messaging tool located in the top right corner of the page. I've attached a PDF that shows you exactly where to find it.
Please feel free to ask if you have any other questions about the platform—I'm happy to help!
Chris

@santosha Thanks for that info about Drs