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As a child, I took Phenobarbital at night, and Tridione in the daytime. Anyone else heard of this? My new Dr.'s give me funny looks, but I know what I was taking. I was 17 when I stopped taking it.
I take 145 mg of phenobarbital.
116 at night
On it 29 years
Due to my 1st son being stillborn in 2006 i began the seizures, never knew why, never had them before then. Now in the past 6-8 months ill only have maybe 1 a month but it comes early in the mornings while im asleep
You may want to talk to your Neurologist or Epileptologist . You may need to have an a EEG and MRI . You may have another area in your brain that your seizures are located .
I had a a EEG and MRI… read more
Has anyone herd of a infant of 14 days old start with seizures and they were so severe they damaged the brain and at 29 days Sally Lynn died. The seizures were resistant to Pentobarbitol, phenobarbital, Kepra, kedamine, fentonal, and Topamax. She was on all of these at one time and finally they were putting in a new arterial line and she died 1.5 hours later. Has anyone herd of this?
I am sorry but don’t give up hope on getting a answer to your questions. You are in my prayers and I hope you get those answers
https://podcasts.apple.com/us/podcast/this-podc...(Phone number can only be seen by MyEpilepsyTeam users)?i(Phone number can only be seen by MyEpilepsyTeam users)
Awesome, thanks!
Does anyone know if 200mg 2x day is a high dose? I mean I could ask my neurologist. Just curious.
I take 1 200 in morning 2 at night and mind are brand name and never had problem but came sz free goning on 25 yrs as also take Tegretol 400mg 1 in morning 1 at night same time brand name
Earlier today, a rain storm came through. Maybe a minute before this, something happened, rather not discuss it. Thought about brain tumors and intracranial pressure. When the barometer drops, ICP is higher than the pressure outside of the head. Had brain surgery, and brain tumors have the same effect- the tumor presses on the brain. Any experiences with sudden changes in air pressure?
Thanks.
Me too. Exactly my experience, every word. Even what my neurologist said to me this morning, exactly word for word. He said he had deep experience with epilepsy for many years and never heard of air… read more
I went out yesterday purposely and I'm happy again! I can't wait for this weekend! I'm going to finally do open mic again! Last time was 2020 and I blocked him. I spoke a little ruff to him first
Hum
My neurologist wants to put me on EPIDIOLEX. Does anybody have any experience with this medication. I would love to hear your reviews and experiences. Good or bad.
@Churcham. I can tell you from professional experience (14 years doing interlibrary loan work for Massachusetts General Hospital--and getting at least article, chapter, book, etc. request filled for… read more
This is a general question of public opinion. I myself always assumed it was, but apparently it's not at least according to Social Security in Indiana that is. I finally decided to apply b/c someone else I know receives disability do to having seizures which started after an aneurysm they also happen to work as well. So I decided to give it a try and was denied b/c epilepsy was not a disability that would stop me from working. So opinions do you agree or disagree on Epilepsy being a disability?
I am on disability for seizures. I can’t work because I’ve had them since I was a kid so they’re preexisting. We’re not able to do several things normal people can.