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What Treatment For Epilepsy? I've Been On 6 Different Meds.
A MyEpilepsyTeam Member asked a question 💭

Every couple of years I have seizures then my Dr wants to try something new or ups the dosage. The meds I'm on now are making me dizzy and off balance

A MyEpilepsyTeam Member

I have been on too many meds to count. I was on phenobarbital, volume, Dilantin, Depakote, Topamax, and vimpat just to name a few. My son is on Trileptal, Keppra, Onfi, Depakote (two, 250 mg, and… read more

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Clobazam
A MyEpilepsyTeam Member asked a question 💭

I seem to be unable to stay awake when I take this medication. Has anyone else had bad side effects?

A MyEpilepsyTeam Member

I've had it but they only gave it to me for four days. Apparently its a very strong Med.

Phenobarbital
A MyEpilepsyTeam Member asked a question 💭

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.

A MyEpilepsyTeam Member

I take 145 mg of phenobarbital.

116 at night

On it 29 years

Does Anyone Use The Watches That Help Detect Seizures? Are There Certain Things You Need To Take It Off To Do So It Doesn't Set Off.
A MyEpilepsyTeam Member asked a question 💭

Will it set off with excessive motion.

A MyEpilepsyTeam Member

I have heard of this but I am afraid to shell out the money only ro have it not work. I'm waiting for it to be out a little longer so I can hear how well it works. If it works well, I would be more… read more

3D Movies
A MyEpilepsyTeam Member asked a question 💭

Anyone have seizure reactions to watching a 3D movie? I sure would like to watch Thor Love and Thunder in 3D but not sure if my brain will react. Thoughts please?

A MyEpilepsyTeam Member

I think the type of movies like being a stressful or comedy might have something different each time too!

Barometric Pressure's Effect On Seizures
A MyEpilepsyTeam Member asked a question 💭

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.

A MyEpilepsyTeam Member

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

So After Having Seizures For 14 Yrs Now In The Past 6 Mths They Been In My Sleep Early In The Mornings
A MyEpilepsyTeam Member asked a question 💭

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

A MyEpilepsyTeam Member

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 Had The RNS SURGERY, Please Provide Me With Any Feedback.
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

Mine was like sean. I did a 14 day stay eeg one surgery , stitches. They monitored me for about 2 months then we started making adjustments. My battery change was a day surgery a lot smaller cut than… read more

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Question
A MyEpilepsyTeam Member asked a question 💭

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.

A MyEpilepsyTeam Member

@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

MY BABY GIRL DIED AT 29 DAYS OLD. PLEASE READ?
A MyEpilepsyTeam Member asked a question 💭

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?

A MyEpilepsyTeam Member

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