I have JME, but never had a "grand mal" seizure?

[darius2008]

Hi, I am 16 years old and have JME, but I only have experienced myclonic seizures.

I started having myoclonic seizures when I was 14. I had JME for 2 years before I was diagnosed and put on medication, but the weird thing is, for those 2 years, I've only had myoclonic seizures, but never a tonic-clonic (grand mal) seizure.

When the doctor was performing tests on me after I woke up from a nap, I found out that strobe lights don't affect me. A couple of drinks doesn't affect me either.

I was wondering, is this abnormal for JME patients, or do I just have a very mild case of JME?

Thanks for the help!

 

[epileric]

Welcome Darius

I"ve had seizures all my life & never had a tonic/clonic seizure until I was 18 when I was silly enough to think that if I stopped eating things with sugar I could stop taking my medications with no repercussions.

They had a hard time with me too when I went for EEG's because they couldn't find anything to trigger a seizure in me.

Meanwhile check out the site & make yourself at home. You might be interested in the list of alternative treatments. I know at least a couple of people here have had success with the EEG Neurofeedback http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments

 

[epileric]

P.S.

Sorry Darius but I forgot to mention that I moved this thread to the foyer so everyone can welcome you to the site.

 

[darius2008]

Thank you for the welcome and your help!

 

[epileric]

Thank you for the welcome and your help!

You're very welcome. There are some pretty knowledgeable people on this site that should be introducing themselves soon.

 

[RobinN]

What I have learned with this disorder, is there are no Hard Fast Rules. NONE
You get what you get, when you get it.

More predictable after making nutritional changes for my daughter. She is 17.

 

[Loopy Lou]

Hey there - i'm not knowledgeable, but introducing myself anyway fft: Strobe lights didn't affect me either, it was the hyperventilating for me.

Anyhoo, welcome to the site!

 

[MrsDSB]

lol....i agree with Loopy. i'm not knowledgeable but i would like to say hello

 

[Meetz1064]

Hi there

Darius.

I don't have JME, but I do have 4 types of E (tonic clonic, myoclonic, electrographic and focal in the left frontal lobe. All are nocturnal.) My triggers are lack of sleep, going without meds (for several days), stress (major amounts) and food. I am a celiac patient, and so that portion of the triggers is now being brought under control with a much stricter diet than the GARD diet I was previously on.

It is very important to watch what you eat, and to control your environment so that your triggers don't "go off" and cause you to seize. That means nutrition, exercise, rest, journaling, whatever it takes--neurofeedback is also a handy alternative way to work on calming your brain down, too. E can be a real pain in the arse, no doubt about it.

There is a lady on here with 2 children, that I believe both have JME, if memory serves me correctly (HA. That's usually a joke.) Her screen name is Joan....you can send her a private message, and I'm sure she'll be happy to respond to you.

Please feel free to check out everything here. There is tons of information in both the Library and the Kitchen regarding different diets--and they're not necessarily to lose weight, but to help control your seizures. Look for the GARD, Ketogenic, LGIT and Modified Atkins Diets.

If you'd like, I can post some information that should be put into an E journal. An E journal is an important thing for you, AND your doctor because it can help you both find patterns....and possibly find your triggers. And wouldn't that be a good thing? OK, it's a tedious thing sometimes, but the end result is WORTH IT.

Btw, welcome to CWE. You'll find that there are plenty of people here to make friends with, and gain support from. Mr B, our host, has built us an AWESOME home here. So kick up your feet, and stay awhile. Check things out. Vent in the Padded Room if you need to--we've all done so at one point in time.

Take care.

Meetz
:rock:

 

[darius2008]

Thanks for all your support!

I am seeing my neurologist in a few days, I will ask him as well.

 

[joan]

Morning and welcome* Both my kids have JME. Yet we don't have E in our families? My son, 20, On lamictal and only has rare grand mals. As of today he is almost 1 year seizure free. He does very well IF he stays on his meds, watches his diet and sleeping habits. HE is in his 3rd year of College, has a job, drives and is a new volunteer firefighter. My daughter, 16, more like you. She only has myoclonics. She used to have 100s or 1000s a month. She was on lamictal for a few months and did have one grand mal. We think it was the lamictal aggravating the myoclonics. Lamictal doesn't seem to work as well on myoclonics as it does on grand mals. Jennifer is now on keppra. We also have her on the Modified Atkins Diet and she is doing GREAT. We have just weaned 1/3 of her meds and she is doing well. I'm not a Dr nor am I an expert but I have a pretty good understanding of JME. IF that is possible in this crazy world of E lol There are a few things most JME share and from there... its very individual. Id recommend you look at your diet and see if you can make changes there, Be sure to try (I know its not easy) to get and stay on a set sleeping habits. Exercise is also good for you. Not saying weight lifting or pole vaulting lol but get out every day, walk. The fresh air and exercise good for you.
I'm not as active here as I used to be but I am always here. Feel free to reach out for any information I may be able to help you with.

I wish you well
joan*

http://health.groups.yahoo.com/group/JuvenileMyoclonicEpilepsy/