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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.

Taking Bloods
A MyEpilepsyTeam Member asked a question 💭

Especially for my UK friends but all contributions welcome.How often found you have bloods taken & what do the GPs ask for?. Liver function ? ,Levels of AEDs, ? I've never had mine taken regularly The GP thinks the Epilepsy Unit takes bloods( it doesn't , purely a consultation) & the Unit thinks the GP does .I think I may have to ask for them myself

A MyEpilepsyTeam Member

My GP does it once a year!

Who Is Excited About The NFL Playoffs Games?
A MyEpilepsyTeam Member asked a question 💭

I’m really happy that Tampa Bay Bucs made it. They’re playing home against Dallas Cowboys Monday night!

A MyEpilepsyTeam Member

I wish I could say something but my husband is a football official (he is an umpire). Both he and. I would be in so much trouble if it was found that he made a prejudiced statement. So enjoy the… read more

Has Anyone Found Cranial Sacral Treatments Helpful In Soothing Your Brain And Body?
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

No need to apologize. Tell your neurologist's about the depression side effect of that medication
As someone who was once labeled as not likely to ever reach a long-term seizure free state (and have… read more

Is There A Meeting Site For People With Epilepsy Like A Video Group Discussion ?
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

not on this site but i and a couple of my team friends are going to get video chats on skype (or zoom or other video calls) and send it to video using the pic/video
another way is to live q&a (but i… 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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How Many Of You Have Full-time Jobs Since Your Discovering You Had Epilepsy?
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

Hi ya it s not easy working with epilepsy I take my hat off to all them that do like you say it s when you're I'll and having to take time off bless you never give up ☺️

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

Vns Therapy
A MyEpilepsyTeam Member asked a question 💭

i want to know as much as possiable about it they r talking about doin this on my daughter

A MyEpilepsyTeam Member

I have a VNS also, I am not very organized so I don’t know where my 🧲 magnets have gone. The battery 🪫 in my VNS is dead 💀 right now. My neurologist recently told me there is a new and improved one… read more

Jobs Vs Disability (SSDI)
A MyEpilepsyTeam Member asked a question 💭

Ive been fired from 6 jobs within the past year alone for "too many missed work days" due to seizures. Or my co-workers "being uncomfortable w my epilepsy and chance of seizures". I had a seizure at work at 2 of my jobs and was fired from both shortly after each. My question is, how do you handle others who don't understand epilepsy in the workplace? I'm currently applying for SSDI but it's taking FOREVER! Would you apply for disability or continue to work knowing it would be a less than 6… read more

A MyEpilepsyTeam Member

I applied for disability and had no problem getting it but my situation is a bit defferent because I became legally blind first. I can only see center vision on my left eye and on right lower vision… read more