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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 ☺️

Lamictal
A MyEpilepsyTeam Member asked a question 💭

Does anyone know if 200mg 2x day is a high dose? I mean I could ask my neurologist. Just curious.

A MyEpilepsyTeam Member

I take 1 200 in morning 2 at night and mind are brand name and never had problem but came sz free goning on 25 yrs as also take Tegretol 400mg 1 in morning 1 at night same time brand name

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 Had The RNS SURGERY, Please Provide Me With Any Feedback.
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

Mine was like sean. I did a 14 day stay eeg one surgery , stitches. They monitored me for about 2 months then we started making adjustments. My battery change was a day surgery a lot smaller cut than… read more

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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

Phenobarbital
A MyEpilepsyTeam Member asked a question 💭

As a child, I took Phenobarbital at night, and Tridione in the daytime. Anyone else heard of this? My new Dr.'s give me funny looks, but I know what I was taking. I was 17 when I stopped taking it.

A MyEpilepsyTeam Member

I take 145 mg of phenobarbital.

116 at night

On it 29 years

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.