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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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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

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

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 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

Sleep Requirements
A MyEpilepsyTeam Member asked a question 💭

Hello! I could not find any answers to this topic. Do you all find that you generally need more sleep than others? I know everyone is different, but I find that I usually need 8+hours of sleep daily. I am very diligent about getting enough sleep as that is one of my main triggers. On the weekends, I can easily sleep for 9+ hours. Is anyone else like this?

A MyEpilepsyTeam Member

I would say yes, I’m the same way in that I need about 8 hours on a regular schedule in order to function normally, and without it I’ve been more prone to seizures. But I purposely plan and keep to… 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 ☺️

How Has Epilepsy Affected Your Work?
A MyEpilepsyTeam Member asked a question 💭

I'm in the proces of applying for HCPC registration and I need to declare about having epilepsy and my relatively recent seizures - will this impact me getting my registration?
Occupational health have previously advised no lone-working, which would impact my work immensely! Anyone have similar experiences?

A MyEpilepsyTeam Member

I didn't want others to know when I was diagnosed at 41
But I have had some unfortunate issues in which I didn't have any idea of what happened.... I guess I was on a vent and when I finally woke up… read more

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.

What Exactly Is Status Epilepticus? I Have Non-convulsive Seizures (unconscious) Lasting Between 10-15 Minutes - Does This Classify?
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

In my region, yes that is considered focal status epilepticus. But i understand some countries have different rules for what counts as status, which is super frustrating!

How Do You Rate The Quality Of Care From Your Neurologist Or Epileptologist (1 - 10, With 1 Being GREAT And 10 Being HORRIBLE)?
A MyEpilepsyTeam Member asked a question 💭

I ask this question because I honestly do not know where I would rate my neurologist. I am not holding it against him that I have not seen him since December 2019 because I he was preparing to get me scheduled to to to the Tufts Medical Seizure Center in March of 2020 when access was shutdown because of the pandemic. Right now, we do not interact at all and he simply faxes in a new prescription to the pharmacy when requested because we need time at that seizure center to figure out what to do… read more

A MyEpilepsyTeam Member

mine is a 1