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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 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

What Jobs And Or Careers Do People With Complex Partial Epilepsy Do?
A MyEpilepsyTeam Member asked a question 💭

In general what jobs do people with uncontrolled epilepsy do?

A MyEpilepsyTeam Member

I have a degree and worked as a Counselor till I had a massive heart attack.

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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How To Improve Your Memory Recall?
A MyEpilepsyTeam Member asked a question 💭

In the case of most of us (unless those who suffered brain damage that specifically damage to long-term memory in the inner brain with the hippocampus and memory central command) or are suffering from dementia (easier to get a test now that can show if you have early stages or soon will have do to recent research published earlier this year), then all of your memories (nothing that occurs during a seizure except those seizures like the Simple Partial Seizures that you are completely aware… read more

A MyEpilepsyTeam Member

Ahh ok I was just wondering. Thank you Marilee.

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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.

Which Of You Who Have Had Any Form Of Brain Surgery Would Not Do So If You Could Go Back In Time With The Knowledge You Have Now?
A MyEpilepsyTeam Member asked a question 💭

I know that a few of my friends have expressed that if that had known before they had their first brain surgery what they know now, then they never would have agreed to it. Who else feels this way? How many feel that the brain surgeries have improved your quality of life?

I am not going into this eventual trip to the seizure center with any intention of agreeing to a brain surgery until there is no other options. I believe because my neurologist is at least in his late 60s, that he is very… read more

A MyEpilepsyTeam Member

But the good thing for me is going through all the pain I became seizure free.

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

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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VNS
A MyEpilepsyTeam Member asked a question 💭

I lost count of how many seizures I had the past weekend. My next neurologist appointment was not scheduled till January. I may have to reschedule it and reconsider the VEEG if the ward is open.
To everyone with a VNS do you believe it has helped? What is the process of receiving one like? I've done some research and it makes me nervous to consider

A MyEpilepsyTeam Member

I would suggest to consider it as a last resort
I had VNS implanted and removed one year later. Complications with the wires in my neck caused nerve damage that I will forever feel, tingly feeling… read more

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