Does anyone have any progressive myoclonic Epilepsy? If so could you add me on WhatsApp on this number please? (Phone number can only be seen by MyEpilepsyTeam users) This is extremely important to me as there is a chance that I may have it. Thanks, Courtney x
I've had all the diagnostic testing in my brain, there's nothing pressing against the brain. It's all normal, also get lightheaded, and it all starts before the pain comes.
Has anybody tried the keto diet pills? If so, did it effect you with your prescriptions for your epilepsy?
I never had a neurologist or any doctor take to time to explain to me that not all seizures involve convulsing, falling, fainting or locking up. For years I contemplated suicide because I thought I was losing my mind, becoming "slow," becoming psychotic, etc. It took me years and my own exploring and research to learn that a lot of what I was and continue to feel or experience… read more
What do you feel like? What do you smell? What do you see?
I have been on Toprimate since September 2018, i have gone all the way up tp 400mg on extended release with Onfi 20mg daily. Then i went back down to 200mg XR and CBD oil 50mg daily. Right now I am on 300mg XR daily, a waterpill during my pre menstrual cycle for catamenial epilepsy and CBD oil 75mg daily. Once I go above 200mg of toprimate i feel severe depression. It's so bad. It brings me down so much. Right now the 300mg isnt stopping my seizure activity and i still feel… read more
I am currently on Dilantin and does not seem to be processing through my body the same after taking it for 40 years and been having spikes in my phenytoin levels over 30. I also have been experiencing more side effects. My neurologist is suggesting to switch me to keppra/levetiracetam or lamotrigine/lamictal. Any thoughts or experiences?
A bit of an embarrassing question this but my epilepsy developed because of an autoimmune disorder and the steroids I'm on give me jock itch (foot fungus) from time to time. Has anyone else experienced this?
Sometimes when I'm at work I have concentration problems/dizziness. I slow down, but I don't want my boss to think that I'm lazy or don't want to do the job. The job is very demanding, & I have to go at a fast pace. I'm thinking of letting my supervisor know, but I'm afraid of getting fired.