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What could doctors do better for people with epilepsy?
Epilepsy & Seizures | Last Active: Apr 2 7:15am | Replies (71)Comment receiving replies
Hi @laura1961
As already expressed in another discussion, I'm so sorry you've gone through this.
If I understand correctly, you're highlighting how many doctors overlook or dismiss the side effects of antiepileptic drugs—is that right?
You've touched on something really important here. I've experienced this too in my own journey. With one medication, I developed severe insomnia. After more than a month of barely sleeping, I brought it up, and my doctor's response was "stick it out." It took three months of severe insomnia and much suffering before he finally agreed to change the medication.
What I've noticed is that some doctors become laser-focused on keeping patients seizure-free, no matter what the cost. Everything else—quality of life, mental health, daily functioning—takes a back seat. Did you experience something similar?
Chris
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@santosha I don't know much about Laser but am going to do some research into that. Although after going into some of the Epilepsy sites like Cure Epilepsy some people after having operations on their brains are still taking medication. That is the reason I would be having the operation so I didn't have to take those terrible drugs with the terrible side effects. As I said my 2 seizures a year went to 24 a year after taking the drugs, starting with Epilim. I was then started on more drugs over an 8 year period which did not help & some even bought on more seizures. I have recently read that gabapentin can make seizures worse, which was one of the drugs I was tried on from 2007 - 2012 that made no difference to the seizures or made them worse. That's when on 2012 I said no more drugs. They have tried to get me back on Keppra, which I had the script made up for. I then read that it can cause seizures. My GP verified this. I would never have taken it also previously & have refused it. I have been reading about a few new meds like Cenobamate but there doesn't seem to be many trials done in the past. I don't know what I am going to do. Just hope for no more breaks after falls.