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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.

Potential Side Effects

Potential Side Effects

I've been instructed to slowly decrease my medications in a 6 week time frame for EGG test I need to get done , i just wanted to know has anyone had to do this and what side effects did you feel during that process.

A MyEpilepsyTeam Member said:

I asked for a referral to UCSF neurology. I wanted to talk to the best doctors and got in to see one their dr’s because my seizures were not under control anymore. If you ask your dr. they will give you a referral to a specific site Like John’s Hopkins, Stanford or UCSF.

posted 6 months ago
A MyEpilepsyTeam Member said:

@A MyEpilepsyTeam Member yeah I've done my research on special glasses to help stop reduce seizures theres ones especially for photosensitive epilepsy but i don't want to spend $400 on them without a proper diagnosis of what's going on unfortunately I couldn't find any company that sells them in Australia mostly are in America hence why I can't use my private health fund to purchase them if need be.
The glasses stopping them are prescribed glasses updated ones as I discovered glasses stop my seizures with glasses from 2017 .

posted 6 months ago
A MyEpilepsyTeam Member said:

I decreased my meds gradually despite the neurologist's response. I was taking 2000mgs x 2 every day. It was overkill and I requested to reduce but his response was " Do you want another seizure". That's when I took charge and fired the neurologist. Now I am only taking 1/2 the previous meds and have blood draws every six months and they have always been in the therapeutic range. I slowly changed the meds over a year to let my system adapt.

posted 5 months ago
A MyEpilepsyTeam Member said:

Sounds scary, i just hade almost the same thing done about 1 month back the difference was that i decrease my meds 1 day before i went to the hospital to be done 2 different tests
A video EEG and another
Like cat scan

posted 5 months ago
A MyEpilepsyTeam Member said:

Go to the marq Association and see who they might recommend who is a specialist registered with them maybe that’s the best way to start.

posted 6 months ago
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