Seizures

[raelynn15]

Does anyone here suffer from seizures?

[mrmonk]

I have Juvenile Myoclonic Epilepsy. Medication has kept my seizures under control for over twenty-five years, but, in the past year, I started experiencing auras, so a new medication was added. Do you have epilepsy, also?

[raelynn15 in reply to mrmonk]

They are still trying to figure out what’s going on with me. I had my first seizure at 24 and I’m 26 now. Since 24 I’ve had multiple lengthy stays in the ICU. First they said pseudo seizures due to depression and ptsd now they are talking about epilepsy. I also experience auras, grand mal seizures, absence seizures.

[mrmonk in reply to raelynn15]

I was in my twenties when I had my first seizure. My current neurologist speculated my recent auras might be anxiety/depression induced pseudo seizures, but since starting a new medication, the auras (or whatever they are) have decreased. Did they do an EEG? Have the doctors prescribed any medications for you?

[mrmonk in reply to raelynn15]

Were you in the ICU because you injured yourself during seizures, or for something like status epilepticus? How frequently do you experience seizure activity now?

[raelynn15 in reply to mrmonk]

I was in the ICU bc I wouldn’t wake up

[raelynn15 in reply to mrmonk]

They checked me for meningitis and all that

[mrmonk in reply to raelynn15]

Did they do a brain scan?

[raelynn15]

They want to do more extensive EEG testing and yes I am on lamictal 200mg

[raelynn15]

I just got out of the hospital Saturday night after seven grand mal seizures

[mrmonk in reply to raelynn15]

Seven consecutive seizures?

[raelynn15]

Yes

[raelynn15]

Yes and they couldn’t see any seizures on it

[raelynn15]

But they saw busted blood vessels

[mrmonk in reply to raelynn15]

Wow, I can't believe they didn't keep you in the hospital longer...How long have you been on the Lamictal?

[raelynn15]

Yes before that I was on Keppra but that made me way too angry. I’ve been in the hospital probably about four times for a week at a time getting spinal taps and all that

[Daphne2222]

You may wish to have your Neurologist do genetic testing through Athena Diagnostics. I began having seizures when I was a Teacher at 40 yrs old. I went to many Neurologists in my area; no one could ascertain why. I went to the Cleveland Clinic and genetic testing diagnosed: Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy, caused by mutated gene NOTCH 3 & Chromosome 19. Genetic testing gives a Neurologist areas to begin treatment. Unfortunately, for me there is no cure or treatment; for me, and there are other symptoms. It is a rare illness. Keppra didn't work for me. Lamictal XR (brand name) with Clonazepam, has worked fairly well for me; albeit, in my case, my seizures have not totally stopped. They are less frequent and not as aggressive. Their are many genetic tests, that may find solutions/cure for you.