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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
Any positive information on Epidiolex as the only meds? Currently on Zonagran. I'm reading and so many bad side effects. We asked our doctor to switch
Had a abnormal 24 EEG 1 month ago and in 2019,but not the cleavland clinic wants a 3 day EEG, I wish the shared data more . We have a functional doctor appointment and generics appointment. I'm my son's voice until he finds it and if takes fighting for his rights and researching like a scientist, then must be done.
JDelakit Understand concern bout meds sides but look at some ads for over-counter meds on TV. Side effects galore.The 3 day testing is fantastic not bad if you want to know why this will give you… read more
Will it set off with excessive motion.
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
I'm going to have the RNS implant in March. And all I want to know is has anyone else had it done and dose it work . I go in March to Vanderbilt medical center in Nashville Tennessee.
I love listening to music and i have a few songs i listen to when it's a bad day. I'm looking for some newer ones if anyone has one.
Some songs that I like:
#1. Mary J. Blige- Just Fine
#2. Owl City- Fireflies
#3. DiL- Don't Let Go
#4. Joeboy- Alcohol 🍸
#5. Kes- Hello 👋
#6. Efya- Best In Me
#7. Halsey- Without Me
#8. Selebobo-… read more
Ok I know this sounds more like something for dear Abby but...I have 2 children ages 12 and 9. My husband has been threatening to leave since we got married. (11 years ago) He says he could do better. He should've left a long time ago. I'm the reason he has no friends. Umm... the only thing my children are going to remember of me is how much I sleep (Combo of working full time and tons of meds). Etc. He has said if we get divorced he'd take full custody of the kids because I have epilepsy so I'm… read more
I was married for 17 years before my wife left me and divorced me after cheating on me 3 times and she knew about my epilepsy and sezuire disorder when we were dating for 3 years. My best friends… read more
How come every time I start a new job within the first 1 to 3 days I start having multiple focal seizures and it affects my work but when I am home not working it will be fine my focal seizures will be gone
The stress ï now have too much in my mind. Take it one day at a time
How many people still manage to still work full time and have breakthrough seizures?
I worked 6 days a week 50/hrs wk. for 35 years. I had worked in a lumberyard. I started working outside making houseloads of lumber. Very physical labor. I moved into customer service, less physical… read more
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?
I agree especially with MarKC - thanks for reminding me of ' non epileptic seizures' I've also heard of them being called ' pseudoseizures' too
Hello, I have 90% of my seizures in bed, usually in the early morning when I think I am changing sleep states. Maybe coming out of REM or something? My memory gets pretty blanked out around when they happen. I've averaged them once a month for a few years, but they seem to be coming more frequently this last year.
Is there a most common time of day and/or frequency of seizures for folks reading this?
This is my experience also Todd. Shifting sleep phases is not smooth. Now that I'm diagnosed, at least I know what the agitated feeling is. Sometimes my legs twitch and stiffen too. And p.s., sounds… read more