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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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Questions About 3 Day EEG At Home
A MyEpilepsyTeam Member asked a question 💭

My first EEG came back abnormal. I get seizures daily and now I am taking the 3 day EEG at home. I want to make sure I don't do anything that would give wrong results. Can medication, drinking coffee or moving head cause it to be abnormal? Can the EEG not show my seizure? I want to make sure that this test will show what is happening. Can the test be normal even though the seizures are happenings? I am having so much anxiety about this
I am having the seizures and if this test is not showing… read more

A MyEpilepsyTeam Member

Does anyone do support groups where they live? I am having a lot of issues at home, because of my health. Dr's are not helping either. I would love to be around others that understand and possibly can… 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

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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Epilepsy Diagnosis
A MyEpilepsyTeam Member asked a question 💭

When did you get it?







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

Diagnosed 1992 I think winter. Oh wait nope summer.

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

How Long Does It Typically Take U To Recover From A Big Episode.
A MyEpilepsyTeam Member asked a question 💭

I had a 5 hr seizure episode on Monday, no loss of consciousness, just thendrops, myclonic jerks, ect
For the last 2 days, I've been so tired, nauseated and a hv huge headache. Also I'm feeling panicky. I hv this imminent sense of doom and my aura just won't go away
So I caved at called my pcp, cause I havent seen a neurologist is over 12 yrs.(I am cutrently not on any meds) Ofcourse he sent me to the E.R right away and here I am, waiting to been seen. I'm freaking out, what if they wanna… read more

A MyEpilepsyTeam Member

The longest time I've had one was 30 minutes. My worst ones as an adult was 11/29/2014 I had 6 seizures 30 minutes each one right after the other. Right before that I had made it to one year without… read more

Has Anyone's Neroligest Tol You That Low Potassium Was The Cause Of A Grand Maul?
A MyEpilepsyTeam Member asked a question 💭

My potassium was below a 3 when I 2 back to back. I'm now on 10 Meq's which is 8 pills a day.

A MyEpilepsyTeam Member

I asked a similar question I have had low potassium after seizures. And even prescriptions now given to me.

How Do You Rate The Quality Of Care From Your Neurologist Or Epileptologist (1 - 10, With 1 Being GREAT And 10 Being HORRIBLE)?
A MyEpilepsyTeam Member asked a question 💭

I ask this question because I honestly do not know where I would rate my neurologist. I am not holding it against him that I have not seen him since December 2019 because I he was preparing to get me scheduled to to to the Tufts Medical Seizure Center in March of 2020 when access was shutdown because of the pandemic. Right now, we do not interact at all and he simply faxes in a new prescription to the pharmacy when requested because we need time at that seizure center to figure out what to do… read more

A MyEpilepsyTeam Member

mine is a 1

Who Has Had Deep Brain Stimulation, Has Had A RNS And/or VNS Implanted?
A MyEpilepsyTeam Member asked a question 💭

How helpful has had LNS, VNS, and/or Deep Brain Stimulation been for you ? How successful was any that you have had for you? Score 1 = being great (long-term seizure free state) and 10 being a failure and more trouble than what it was worth
How many time per year are you having some battery replacement or other maintenance for LNS or VNS?

NOTE: Here is some details about each from the Epilepsy Foundation:

As much details of your own experience… read more

A MyEpilepsyTeam Member

I'm on my 6th VNS now as my first was implanted over 22 years ago and it's set at the max where it's one 60 seconds off for 66 seconds. The newer version I had implanted about 4 years ago has a heart… read more

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