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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.

What Treatment For Epilepsy? I've Been On 6 Different Meds.
A MyEpilepsyTeam Member asked a question 💭

Every couple of years I have seizures then my Dr wants to try something new or ups the dosage. The meds I'm on now are making me dizzy and off balance

A MyEpilepsyTeam Member

I have been on too many meds to count. I was on phenobarbital, volume, Dilantin, Depakote, Topamax, and vimpat just to name a few. My son is on Trileptal, Keppra, Onfi, Depakote (two, 250 mg, and… read more

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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

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

Has Anyone Else Had Their Epilepsy Type Diagnosis Changed?
A MyEpilepsyTeam Member asked a question 💭

When I was young, I was diagnosed with petite mal based on eeg and symptoms. But in my mid teens, my diagnosis was changed to temporal lobe, again based in a different eeg and symptoms. Has this happened to anyone else? And if anyone has an answer as to why this happened, I would love to hear about it!

A MyEpilepsyTeam Member

I am currently in a 6 month seizure free state. However, among the mutations for me was a complex partial seizure immediately after a generalized full seizure (thus, unlike in the past, I did not… read more

Has Anyone Had Any Weird Side Effects From Medications?
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

I have no problem with Vimpat at a low dose, as for Keppra can't take it due to an aggressive mood swing so was chosen to stop.

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

What Scares Others About Seizures When You Know Why?
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member

My only problem is that people place too much emphasis on my having an epileptic disorder rather than on what I know about it. For example, my mother passed away three years ago (almost to the day)… read more

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!

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

No need to apologize. I have done the same in the past too. Most of the friends on this site will not mind either.