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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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About Flashback Problem
A MyEpilepsyTeam Member asked a question 💭

I went out yesterday purposely and I'm happy again! I can't wait for this weekend! I'm going to finally do open mic again! Last time was 2020 and I blocked him. I spoke a little ruff to him first

A MyEpilepsyTeam Member

Hum

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 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 ☺️

Do Any Of My Team Members Take Vimpat
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

I have took vimpat since I was a teenager and I don’t have any side affects with me and it helps me to help seizures but I am sure it helps with my other meds to.

Nerologist Running Own Test Not Asking For What Has Already Been Done
A MyEpilepsyTeam Member asked a question 💭

Just seen the nerologist last Thurs Jan 2023.My Nerologist, She doesn't want anyone elses scans or tests. When I've already have had abnormal EEGs plus video EEG. MRI & Cat scans are all normal tho. Anyhow my Nerologist,She wants to do all her own
Workup. Is this normal?
Cause none of my sons Nerologists have did same testing they always went to next step/testing. He was finally diagnosed 2022 Generalized epilepsy after yrs (started when 14 yrs, now 25) of having them and being on meds.

A MyEpilepsyTeam Member

But my offer is no joke. I make it not in jest. But I'm all seriousness

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.

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

Osteopenia And Possible Med Change
A MyEpilepsyTeam Member asked a question 💭

I was diagnosed earlier this week (2-14-2023) with ostopenia in my left leg and hip. I am concerned that this condition may be a side effect of the Dilantin/phenytoin that I take. I'm wondering if I should switch to another seizure med. I know you're not doctors but has anybody else encountered this problem? What action was taken by you and your doctors?
PS I know ostopenia isn't reversible. I'd just like to perhaps lessen the ongoing damage.
Thanks in advance.
Peggy Shore

A MyEpilepsyTeam Member

Physical Therapy is strenuous. I came home and took a 3 or 4 hour nap...lost track.
3lb ankle weights are a lot for this skinny body. When they work me up to 5lbs I don't know how I'll do.

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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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!