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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

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.

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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Reaction!
A MyEpilepsyTeam Member asked a question 💭

If/ I may ask, should you not be comfortable answering by all means. How has everyone felt after their diagnoses? Was it hard to accept?

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member Sorry to hear that you have had to endure all of that! I was blessed that back in 1980, the focus was on my heart (because my older brother had to have open heart surgeryread 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

How High Is Your Dose Of Lamotrigine?
A MyEpilepsyTeam Member asked a question 💭

Mine is 300mg bid
Only 2 grand mals since 2015 and monthly absence seizures

A MyEpilepsyTeam Member

I take 250mg morning and evening. This has increased slowly over 8 years.

Have You Ever Participated In A Clinical Trial?
A MyEpilepsyTeam Member asked a question 💭

I know that if I had a grand mal seizure when I was at Brigham and Women's Hospital for EEG Long Term Monitoring, then a separate recording device in the room (wireless) could have been used in the research for this potential replacement for all of the wires needing to be attached during EEG testing and especially EEG Long Term Monitoring. This was not the standard clinical trial because it is simply getting the patient in the EEG Long Term Monitoring to agree to have the wireless machine in… read more

A MyEpilepsyTeam Member

For Trileptal XR before approved negative and pregnazone with no warning not cool man

Has Anyone Tried Cefaly?
A MyEpilepsyTeam Member asked a question 💭

I had an appointment this morning any my neurologist told me about Cefaly. I have terrible migraines and its a non medication treatment- both to prevent and rescue. Im doing a little bit of research of my own along with all the information he gave me.

Www.cefaly.com

A MyEpilepsyTeam Member

No

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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

In Addition To My Epilepsy, I Have A Learning Disability. I Do Not Know If They Are Related. I Know Seizures Have An Effect On Memory.
A MyEpilepsyTeam Member asked a question 💭

I know the tests said my memory was poor. When given directions, I did not carry out the task well or consistently. The inability to do so the Doctor felt would getting and keeping a job difficult.

A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member It wasn't that great when I was at school either I was diagnosed in 94 started school in 2000 and didn't officially start a support class until year 3. And even when I did… read more