Juvenile myoclonic epilepsia

[Jo Jo]

Hi. I am new here after 25 years with epilepsy. Do not have myoclonics any more but about two grand mals a year. Would love to hear any experiences and people with similar condition. On keppra and lamictal but alzo dont live the perfect lifestyle. Have depression and need some friends. Look forward to meeting some new friends. Jo Jo

 

[chop456]

Hello Jo Jo! Welcome to CWE! You will find you are among friends here! I am happy you have found CWE. It has been a breath of fresh air for me!

My daughter (she is 14) was dx'd with Juvenile Myoclonic Epilepsy, too. We are working thru this new path and Paige is holding strong. After 25 years with epilepsy, how long have you been without the myoclonics. Is the medication what caused the myoclonics to stop or are they no longer showing up on the EEG?

Welcome!

 

[Loopy Lou]

Ola Jo Jo!

Welcome to the site

 

[Jo Jo]

Juvenile myoclonic epilepsy

I have not had myoclonics for about 15 years. But I continúe with the grand mals. i will say i still enjoy a glass of wine, may be the reason. I want to know hoy others have found control? For me the grand mals are the worst. i had a fall in the bathroom about 2 years ago and nearly died. The myoclonics were always a warning, but now just a funny feeling. What are your experiences

 

[Nakamova]

Hi Jo Jo, welcome to CWE!

You might want to ask your neuro about slightly raising your med dose. That might give you a "margin of error" for when you have a glass of wine, or your seizure threshold is otherwise lowered.

Best,
Nakamova

 

[Jo Jo]

Hi all. Thanks for all your responses. I have not had myoclonics for about 15 years now, ever since they took me off Tegretol. I tend to have a grand mal every 6 months. What i dont understand is that i can have a glass of wine or 2 and nothing but i get to 6 months and then BANG it hits. They are almost 6 months to the day. I do notice though that lack of sleep has a big impact also. But if it is the alcohol then why does it not happen every time i have a glass of wine? Is anyone here completely controlled, if so, what meds do you Take and what is your lifestyle like? This site will be so good for me to share experiences.

 

[Nakamova]

Hi Jo Jo --

I have been completely controlled for 4 years. I'm on 150mg/day of Lamotrigine.
I do everything -- drive, swim alone, drink alcohol -- without worries. I know I am one of the lucky ones.

 

[Jo Jo]

Wow! 4 years controlled. That is brilliant. I am so pleased for you. Can you tell me anything about your history with epilepsy. Such a low dose of meds too. Please tell me more!