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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

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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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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

If Your Seizures Are Under Control, Do Your Side Effects (either From Seizures Or Meds) Come And Go?
A MyEpilepsyTeam Member asked a question 💭

As far as I know, I haven't had a seizure in over a year. It took me 11 months to feel like myself again after the last one. Then I had 3 months of feeling really good. Now all of a sudden the side effects (brain fog, memory, exhaustion, depression, word recall, etc.) are back. I'm trying hard not to feel like I'm backtracking and to view it as all part of the package. For those of you whose seizures are under control, do your side effects come and go?

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I haven't had a grand mal or even a petit mal since 1998, when I had my VNS put in. What I do have are simple partials----they are like dizzy spells that last about 30… 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

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

Lamictal
A MyEpilepsyTeam Member asked a question 💭

Does anyone know if 200mg 2x day is a high dose? I mean I could ask my neurologist. Just curious.

A MyEpilepsyTeam Member

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

Watches
A MyEpilepsyTeam Member asked a question 💭

Does anyone manufacture a watch to alert to seizures, heart problems, etc.
I only have two skinny wrists, so I don't have a lot of room for multiple watches.😁

A MyEpilepsyTeam Member

Robert5
My phone doesn't automatically call 911. It sent a picture to certain contacts. When I had a heart attack & my daughter called 911 from Michigan I tried to convince EMTs all I needed was a… read more

Pill Reminder
A MyEpilepsyTeam Member asked a question 💭

What do you do to remember to take meds when you take more than once a day!

A MyEpilepsyTeam Member

And my phone scares the heck out of me all the time with reminders

I Have Right Temporal Lobe Epilepsy And I'm Currently On Vimpat. Anybody Out There Have Vivid Or Weird Dreams?
A MyEpilepsyTeam Member asked a question 💭

I have right temporal lobe (lesions on the right side)epilepsy and I'm currently on Vimpat. Anybody out there have vivid or weird dreams? Some of mine are extremely life like and some are weird enough that I probably would tell them to anybody. Some of them stick in my memory even when I wish they wouldn't.

A MyEpilepsyTeam Member

I have had so many and i increased my dose about 3 weeks ago and every night i have lucid & vivid weird dreams. 2 nights i didnt because i missed 2 doses on accident (memory laps).

Has Anyone Heard Of Pseudo Seizures?
A MyEpilepsyTeam Member asked a question 💭

I was told I have Grand Mal and other Seizure Disorders one of them called Pseudoseizures . Anyone else ever hear of this? I'm told it's hard to diagnose and often gone undiagnosed or is missed. My family and I was just grasping the Grand Mal Seizures now there's more to try and sort thru?

A MyEpilepsyTeam Member

I agree especially with MarKC - thanks for reminding me of ' non epileptic seizures' I've also heard of them being called ' pseudoseizures' too