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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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Epilepsy Diagnosis
A MyEpilepsyTeam Member asked a question 💭

When did you get it?

1950s

1960s

1970s

1980s

1990s

2000s

A MyEpilepsyTeam Member

Got that degree in 2012.

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

How Long Have U Had Ur Disorder
A MyEpilepsyTeam Member asked a question 💭

if anyone is free to chat i am here

A MyEpilepsyTeam Member

I’ve had epilepsy since the age of 2. I’m now close to 50 yrs. Of age

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

Hi Have Any Of You Guys Had Temporal Lobectomy Surgery? If So What Is Outcome And Was It Successful
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

After approximately 18 years of trying all sorts of medications and treatments to control intractable daily / weekly temporal lobe seizures and approximately monthly grand mal seizures, I made the… read more

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What Causes Change In Seizures?
A MyEpilepsyTeam Member asked a question 💭

I have always only had between 2-4 min seizures all my life but since July 1, 2022 they started lasted 20min. What could be causing that spike in the differences? I am really concerned but more concerned about having a seizure like that in public with my 4year old son with and no one else.

A MyEpilepsyTeam Member

Hi Amanda. I can totally relate. My seizures have gone from Focal seizures that happened a 2-4 times a week to What seems to be Nocturnal Tonic Clonic. My Keppra has been increased to 3000 mgs. a day… read more

I Have Read About People Losing Loved Ones To Epilepsy Is It Epilepsy That Takes Them, Is It What Happens To Them During The Seizure.
A MyEpilepsyTeam Member asked a question 💭

My wife is living with epilepsy and I am so scared to death of losing her. I would like to know if there is anything we could do, or is it something that's inevitable?

A MyEpilepsyTeam Member

I would say when for some reason the seizures can not be controlled, no matter what they do

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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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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