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Any Positive Information On Epidiolex As The Only Meds? Currently On Zonagran.
A MyEpilepsyTeam Member asked a question 💭

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.

A MyEpilepsyTeam Member

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

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Epilepsy Diagnosis
A MyEpilepsyTeam Member asked a question 💭

When did you get it?

1950s

1960s

1970s

1980s

1990s

2000s

Last of 101 replies sign up to view previous answers
A MyEpilepsyTeam Member

Diagnosed 1992 I think winter. Oh wait nope summer.

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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How Long Have U Had Ur Disorder
A MyEpilepsyTeam Member asked a question 💭

if anyone is free to chat i am here

A MyEpilepsyTeam Member

I’ve had epilepsy since the age of 2. I’m now close to 50 yrs. Of age

Does Anyone Have Any Seizures That Present Similar To A Panick Attack? What About Before An Episode/after One?
A MyEpilepsyTeam Member asked a question 💭

It's happened quite a few times at bedtime most recently last night, i feel heavy and disconnected but also like my body is moving around, my eyes quickly moving around...

A MyEpilepsyTeam Member

After my right lobe craniotomy on 12-16-2020 being a constant burden on my family unable to help out, drive or work had a couple of trips via ambulance to the ER. Seen for: 8/2/2021
Pseudo seizures &… read more

Has Your Attention Span Shortened After A Seizure?
A MyEpilepsyTeam Member asked a question 💭

Since my last seizure, I find my attention span is much shorter, especially when reading. Anyone else experience this?

A MyEpilepsyTeam Member

Thanks, Kathryn13.

Why Am I Blanking Out In The Middle Of Doing Things And When I Come To I Don't Remember What Happened All I Know Is Im On The Floor
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

There are 2 possibilities
1. You experiencing bad side effects of your medication(s)
2. You are actually having , some form of a seizure.

I too have blackouts. They are a type of seizure . I also… read more

Rns Device Implant
A MyEpilepsyTeam Member asked a question 💭

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.

A MyEpilepsyTeam Member

I have had the RNS for 4 years 1 battery replacement and a ton of adjustments. When I first got it i was having 12-14 seizures a month. Now I'm down to 4-6 so cut in half and some of them I barely… read more

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Anyone Diagnosed With JME In Adulthood?
A MyEpilepsyTeam Member asked a question 💭

Hey everyone new here
Just a little background. I was diagnosed with Juvenile Myoclonic Epilepsy in 2017 and I am 30 years old. As many of you know you can also have Tonic Clonic and Absence seizures under this umbrella, so to speak. I have suffered status twice from tonic Clonic seizures due to flashing lights. Just wondering if anyone has been diagnosed later in life. I also have a Chiari malformation which is a herniation of my spine into the fornum magnum ( back of the skull) of… read more

A MyEpilepsyTeam Member

Well let us know what happens. Best of luck.

Wondering How Many People Have Been Able To Hold Down A Job With Our Issues?
A MyEpilepsyTeam Member asked a question 💭

So I'm self employed in a business that has a lot of leeway to is but even still I'm often effected by my monthly seizures and I only have mine at night and they usually only mess with me a few times a month and those are mostly grouped together. But with that being said I can still see where having a regular 40 hour a week job would be a nightmare for me. My depression can come and go really bad at times, the nights that I do have issues are random and I'd probably have to call off a lot of… read more

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
So I could go on and on and sound whinier and whinier but I'm guessing that you get the point. And once again sorry about the long post but it's a bad brain day and my… read more