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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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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

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

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 Been Warned Of The Dilantin And Calcium Interaction?
A MyEpilepsyTeam Member asked a question 💭

I've heard that it's best to take Dilantin 2 hrs from having food with much calcium. Some say calcium makes the Dilantin more difficult to absorb.
Does anyone else follow this?
Does anyone NOT follow this and found no problems?

A MyEpilepsyTeam Member

Hi Linda, Sorry to hear that you're going through so much stress. When a lot has to be done I try to treasure the small breaks in between to take deep breaths, watch short videos, or listen to a song… 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 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

Does Anyone Have Any Seizures That Present Similar To A Panick Attack? What About Before An Episode/after One?
A MyEpilepsyTeam Member asked a question 💭

It's happened quite a few times at bedtime most recently last night, i feel heavy and disconnected but also like my body is moving around, my eyes quickly moving around...

A MyEpilepsyTeam Member

After my right lobe craniotomy on 12-16-2020 being a constant burden on my family unable to help out, drive or work had a couple of trips via ambulance to the ER. Seen for: 8/2/2021
Pseudo seizures &… read more

Vimpat And Memory
A MyEpilepsyTeam Member asked a question 💭

Since I started taking Vimpat my memory has gotten worse. It seems to have gotten worse as my dose has increased. Has anyone else had this problem? Vimpat has also raised my blood pressure

A MyEpilepsyTeam Member

Ask your doc if vimpat messes up your memory. Our epilepsy is not remembering things. My friend who does not even have epilepsy tells me the older we get she even cannot remember stuff.

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
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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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

Sponsored Content
Learn more about available surgeries to treat epilepsy Read more >