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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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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

So After Having Seizures For 14 Yrs Now In The Past 6 Mths They Been In My Sleep Early In The Mornings
A MyEpilepsyTeam Member asked a question 💭

Due to my 1st son being stillborn in 2006 i began the seizures, never knew why, never had them before then. Now in the past 6-8 months ill only have maybe 1 a month but it comes early in the mornings while im asleep

A MyEpilepsyTeam Member

You may want to talk to your Neurologist or Epileptologist . You may need to have an a EEG and MRI . You may have another area in your brain that your seizures are located .

I had a a EEG and MRI… 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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What Songs Do You Listen To, To Cheer You Up?
A MyEpilepsyTeam Member asked a question 💭

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.

A MyEpilepsyTeam Member

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

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.

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

MY BABY GIRL DIED AT 29 DAYS OLD. PLEASE READ?
A MyEpilepsyTeam Member asked a question 💭

Has anyone herd of a infant of 14 days old start with seizures and they were so severe they damaged the brain and at 29 days Sally Lynn died. The seizures were resistant to Pentobarbitol, phenobarbital, Kepra, kedamine, fentonal, and Topamax. She was on all of these at one time and finally they were putting in a new arterial line and she died 1.5 hours later. Has anyone herd of this?

A MyEpilepsyTeam Member

I am sorry but don’t give up hope on getting a answer to your questions. You are in my prayers and I hope you get those answers

Can You All Show Some Of Your Talents?
A MyEpilepsyTeam Member asked a question 💭

I've noticed we are some intelligent. Spiritual, artistic and poetic people on here can you all show me some stuff. I'm just in awe of us as a disabled people. I truly am shine peeps shine

A MyEpilepsyTeam Member

Mantle
Love your description w/ math!

Has Anyone Experienced A Significant Increase In Frequency And Severity Of Seizures With Perimenopause?
A MyEpilepsyTeam Member asked a question 💭

I am 100% positive that hormones are playing a huge factor in both the frequency and intensity of my seizures but I’m not sure where to start to address it. If anyone has any suggestions, PLEASE let me know!

A MyEpilepsyTeam Member

I started with seizures just as I was coming out of menopause at 54. I’m going to be 64 in June. All of my family and friends as well as myself think my epilepsy was brought on by a hormonal change. I… read more

What Is Your Sleep Like?
A MyEpilepsyTeam Member asked a question 💭

I was reviewing my sleep log (started keeping one July 13, 2018). I haven’t been to bed before midnight. A couple of nights I went to bed at midnight but more often it is between 2am-5am. I don’t have a consistent sleep pattern. Some nights it’s 4 hours, some nights it’s 10 hours. Regardless of how many hours I sleep, I feel wiped out when I wake up.

What is your experience like?

A MyEpilepsyTeam Member

I'm flakey as far as my sleep schedule. It's regular, but off hours. Unless I'm involved in physical activity, by 9:00 pm I can't stay awake. If I go to sleep, I'm up by 4:00 am, wide awake. I keep… read more