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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.

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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

When You Were Told That Medication To Assist You, Did You Choose Surgery Or Alternative Solutions? How Well Did It Work For You?
A MyEpilepsyTeam Member asked a question 💭

I have heard in the past from several friends who have tried many others including surgery, implants or non-medication alternative methods. However, I think it would help if those of you who have to share your experience with those are now at the point where they have been told that medication will never allow them to reach a long-term seizure free state.

If Q + A section was better organized, then I would not have to ask this question, but we have a support site, so we have to do what we can… read more

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member Everyone gets nervous. Usually what helps is if you talk to your epileptologist/surgeon. From the surgeon, I learned there was a better chance of dying from a car accident… read more

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Does Anyone Get Scared When You Since That You Are Going To Have A Seizure
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

Yes but for me it happens in stages,firstly i feel a different sense of reality, secondly i realise my coordination/balance/vision is impaired and thirdly i realise whats happening between a fog of… read more

What Would Be The Problem If Your Neurologist Has You Taking Vimpat 3 Times A Day, Not The Normal Prescribed 11/2 In The Morning & Evening??
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

From what I understand about Vimt the max dose is 800. How much are you taking

In Addition To My Epilepsy, I Have A Learning Disability. I Do Not Know If They Are Related. I Know Seizures Have An Effect On Memory.
A MyEpilepsyTeam Member asked a question 💭

I know the tests said my memory was poor. When given directions, I did not carry out the task well or consistently. The inability to do so the Doctor felt would getting and keeping a job difficult.

A MyEpilepsyTeam Member

I have a very bad short term memory but a good long term memory

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

Surgery Anesthetics And Seizures
A MyEpilepsyTeam Member asked a question 💭

Weird question. But has had anyone had any type of surgery where they have been put under anesthesia, and if so did it effect their seizures. I had knee surgery and it was noticed by some people that for a while when the anesthesia was in my system ( for the first week or two as anesthetics last in the body for a while) my seizures were absolutely non existant and i noticed i didnt experience any of my normal symptoms with my epilepsy. Has anyone else experienced this?

A MyEpilepsyTeam Member

Sorry to hear that it triggered the grand mal seizures, but it is great that you are not having any since
It would be great if you can get to a long-term seizure free state with the petits mal too,… read more

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Clobazam( Onfi/ Frisium) Withdrawal
A MyEpilepsyTeam Member asked a question 💭

Sorry ,I've not been on for a few months due to family illness. .I'm on 3 anti convulsants Briviact,Lamotrigine & clobazam. . I know this a benzodiazapine & quite a powerful med .)My new consultant suggested I come off clobazam,which I've done ,gradually,over 6 weeks.( I first took it as a rescue med about 20 years ago but it became a med I took am & pm about 10 years ago.I also take Briviact & Lamotrigine) .Absences & focal onset seizures haven't been controlled for 10 years. ) To cut a long… read more

A MyEpilepsyTeam Member

I never had to get off of mine but I agree Kathryn13 about the symptoms of withdrawal. I hope you will get over them soon. Are you feeling better now? I am getting off my medicine and I don't know… 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 both the VNS & RNS they reduce the strength of thee seizures. My seizures last about 3-5 mins now. Pending on how much meds you’re on, is what you need to think about. Good Luck!!

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Does Anyone Ever Have Blackout Spells?
A MyEpilepsyTeam Member asked a question 💭

As some of you know I have had seizures for 24 years. I am having these blackout spells in just 1 eye. My seizures are coming from a damaged nerve in the left side of my brain. I blackout in my right eye sometimes. I know its completely normal, but I was just wondering if other people have had them.

A MyEpilepsyTeam Member

Yes but I put on new med and good. Thank God