who here wants to tell me ab their JME?

[bobbybetterman]

for the record, I do not have epilepsy (as far as I know), but I fell head over heels in love with someone who has JME (junior Mychlonic Ep), so much so that for the first time in my life I am joining a forum. When I told her ab this forum she asked me to post a question to all of you to see if anyone has similar experiences so here goes...

she has triggers these include:
stress - mostly emotional
sleep - too much or too little
showers - not every shower, but a good portion of her seizures get brought on by warm/hot showers
sexual intimacy - first hand, I have experienced 2 with her... when I asked her, she said there was no warning, and afterwards sometimes she vomits (she has vomited once w/me). HOWEVER she doesnt normally vomit any other times she has a seizure

She currently takes lamictal 400mg (doesn't seem to have any discernable side effects)

according to her EEG's her seizures originate from her frontal lobe, she also says that she gets "auras" before she has her seizures, and only sometimes.

So I leave this post to you all for anyone who is willing to talk about their stories, advice, or even just thoughts

 

[Nakamova]

Hi bobby, welcome!

It's great that you are interested in helping out your girlfriend. She's welcome to join CWE too!

Just out of curiosity, does she have shower-seizures if she takes her showers in the afternoon or evening? I ask because a common trigger for JME is any activity that happens after you first wake up in the morning shower. It might be the heat from shower that's a trigger, but it might also be the time of the day.

 

[bobbybetterman]

she takes her showers at night, if she took him in the morning she would have a guaranteed seizure

 

[tkopi]

Hi Bobbybetterman
Welcome to CWE. I too have seizures while taking showers. I like hot showers too but I found that was what was causing my seizures. I lowered the temp. of the water some and most of them stoped. I still have some while showering but not as many.
I think it's great that you are on here to help your girlfriend. I hope to see her on here too. This is the best site I have found with alot of great people to help you out in all sorts of ways.
Good luck to you and your girlfriend.

 

[bobbybetterman]

I read in another thread (forgot which) that some ppl are kinda OCD, is there a connection at all between Ep and OCD? I ask bc my gf, cat, is pretty ocd ab some things...