What Is More Important To You: Seizure Control, Quality Of Life, Or A Balance Of The 2? | MyEpilepsyTeam

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What Is More Important To You: Seizure Control, Quality Of Life, Or A Balance Of The 2?
A MyEpilepsyTeam Member asked a question 💭

The reason I ask is because I've been in a situation in the past with 100% seizure control but it was at the expense of quality of life. I was a medication zombie and couldn't even hold a conversation or absorb information at all. I ended up emailing my specialist to get me off that drug and said I'd rather have a few seizures and get back my quality of life. I obviously emphasised I'd rather have no seizures and no side effects. But personally for me, balance is key.

posted March 31, 2021
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A MyEpilepsyTeam Member

Been there, got all the T-shirts
I used to feel I was useless and couldn't do anything, then I found the ketogenic diet. I managed to reduce medications by half and my cognition has improved. So much so, I am now able to study dietetics at university. I am in my final year and will be a registered dietitian by the end of the year.
My goal is to specialise in ketogenic diet for epilepsy in adults.

Have a read of this...
https://medicalnutrition.today/features/lee-morgan

posted March 31, 2021
A MyEpilepsyTeam Member

Luckily not all meds impair memory/cognitive functions as much for some people as others. I think seizure control would mean finding the one correct medication that not only controls my seizures the best, but also gives me the very least in side effects such as feeling like a zombie. I know there is one out there lol

posted April 1, 2021 (edited)
A MyEpilepsyTeam Member

A balance of the 2. I already been on the majority of the medications on the market and non of them have controlled my seizures 100%. But having an average of 30 seizures a month or 1 expecting 1 seizure a day, is find for me. I’m also a very independent person, I want to have a fairly clear mind, so I can be able to make clear choices.

posted April 1, 2021
A MyEpilepsyTeam Member

I’m on so many medications I wake up tired as well.

posted April 9, 2021
A MyEpilepsyTeam Member

Difficult one to answer .I've retired now & I took a long time to get used to that's I loved working for the NHS but couldn't manage getting up early,with the commute & managing the stairs at work,due to arthritis.I think I've got a good quality of life ( Covid's messed it up of course) , family. Around ( when we can see them ) I'd give anything to lessen my weekly day of partials if feel like I'm not asking a lot, 1 day every month would be fab.My quality of life would improve tremendously Like everyone I wish I didn't have to be on meds They affect my cognitive function & concentration/ ability to listen & recall detail I don't watch films anymore for that reasonand reading send me to sleep !

posted April 1, 2021

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