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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

Liquid Medications And Clean Dry Oral Syringes
A MyEpilepsyTeam Member asked a question 💭

They plan on moving me to an Assisted Living Facility. I am deeply concerned about keeping the Oral Syringes clean and dry. I do a wonderful job, and the Nurse who visits agrees.

Does anyone know how this is dealt with in these places?

Leslie

A MyEpilepsyTeam Member

Sue
Because they think I need a nurse all the time I would not qualify. However, I ended up ordering 30 extra new ones. It was15, but they come in packages of 2. I also gave the Doctor the… 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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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.

Does Anyone Get Scared When You Since That You Are Going To Have A Seizure
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

Yes but for me it happens in stages,firstly i feel a different sense of reality, secondly i realise my coordination/balance/vision is impaired and thirdly i realise whats happening between a fog of… read more

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

Mysoline
A MyEpilepsyTeam Member asked a question 💭

when i was a child (10-16) years old i was prescribed but when i left school the doctors changed my medication. why was this when mysoline was controlling my epilepsy. whilst on mysoline i was having 1 maybe 2 fits aweek but since they change my medication my fits have increased and i am unable to work

A MyEpilepsyTeam Member

I just had one done. The results should be available by the 26th, which is when I have an appointment.
Leslie

Driving
A MyEpilepsyTeam Member asked a question 💭

Do you guys drive?

Last of 325 replies sign up to view previous answers
A MyEpilepsyTeam Member

Losing the right or ability to drive is not only hard it just down right sucks! It is a means to independence. I haven’t driven in almost 9 years and I hate every minute. Having said that I look at… read more

Has Anyone Had Brain Surgery To Correct Their Seizures? Im Scared And Would Love To Hear Your Stories And Get Any Advice I Can
A MyEpilepsyTeam Member asked a question 💭

I've got complex partial seizures with identified abnormality in my temporal lobe. Seizures are focal so my neurologist said surgery is an option I should consider, but I'm pretty scared and not sure it is worth it. My seizures aren't very bad and I could still lead a mostly-normal life but I plan to become a doctor and with sleep deprivation being a major trigger for me it may prevent me from pursuing my desire to work in a hospital (which means long hours). Im not sure about the process of… read more

A MyEpilepsyTeam Member

I had surgery in July of 2004, a left frontol lobectomy. I guess my only side effect was that my IQ increased to an above average level, it's working well, my last seizure was in 2011 and I still take… read more