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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

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 had more seizures in my 40's than any other time except my teens. The seizures I had in peri menapause were also more severe, causing a loss of memory and balance. It took weeks to get over each… 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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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

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 Do People Do For Anxiety Instead Of Meds? In Example Breathing Control.
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

That is a great way I bet. I meditate with praying.

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

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 ☺️

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

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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