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JME
Tue, 08/07/2007 - 10:52Hi all,
You have probably seen lots of my threads on here as I seem to have so many questions spinning round my head at the moment! Today after 15 years I have diagnosed with JME!!! Can´t believe it has taken so long. Originally on Tegretol 400g per day which partially controlled seizures although made myoclonic seizures worst. I was then on 250mg Lamictal per day and today increased to 300mg. Anyone know what the normal dose for control is with Lamictal. Can anyone give me experiences on lifestyle with JME. I am a very social person and like to go out for dinner at the weekend and enjoy a glass of wine or 2 with dinner. My neuro has told me not to drink at all, it´s just I seem to be fine for about 4 months having a few glasses of wine at the weekend and then BAM a grand-mal hits! Can´t understand why this is. Surely if it was the alcohol it would happen every time I drank? Any advice. I basically want to know what has worked with other people even though I now it is a very individual thing. Anyone - please help as really want to get this under control now. Take care
Jo
Comments
Re: Re: JME
Submitted by Jo Jo on Wed, 2007-08-08 - 03:49
Hi Diane
JME is Juvenile Myoclonic Epilepsy and is a Epilepsy Syndrome. It basically means that you have 3 types of seizures - absence, myoclonic and tonic-clonic. All seizures predominantly occur in the morning so at least you know that after the first couple of hours you are more or less OK which is a big advantage compared to other Epilepsy´s. Still, wanted to find other people dealing with this sort of Epilepsy.
Jo
I have JME also. My problems
Submitted by dave 44 on Fri, 2007-09-14 - 21:45
I have JME also. My problems are in the morning a lot but most definatly NOT confined to. Its not like yuou say ,at least for me. I am on depecote ,the 1st drug of choice for this malady. I was on dilantin also for decades! I weaned myself off of it and found I did not need it at all.
I dont drink at all. I am on a small dosage of depecote and use diezapam for breakthroughs. I go for long periods where its like I dont even have epilepsy.
I went 8 years without a grand mal and then had one recently cause I tried lowering my dose of depecote. Other factors were I was working a lot slightly sleep deprived.
The morning thing has changed when I was a lot younger it really did seem the longer I was away from the morning the less likly an unfortunate event might occur but that has changed over the years. A reduction of overall problems but it seems now when they do come they can come anytime. I am done writing now. Its nice to see I am not alone with this. I wish you the best.
ps
I have to get up at 6 am tomorrow and go work like a mule. I am 54.
If I would have done that at 18 I would have had a seizure for sure,I know.
Re: JME
Submitted by support_caregivers2 on Tue, 2007-08-07 - 12:02
Hi Jojo. Im so sorry you are going thru alot. What is JME? Sending you a HUG and some prayers. Hang in there ok? HUGS >>>> -Diane