Myoclonic Epilepsy

[Calley33]

Hey all! Anyone have myoclonic epilepsy? Juvenile or Progressive? My neurologist is still narrowing down what I have. I have no history of epilepsy until age 33, and I was adopted, so no known family histoy. It's a waiting game for now. Any stories to share? Thanks!

-Calley

[RobinN]

Hi Calley - I am not familiar with this, but I know that others will be along to offer their experience. My daughter Rebecca 16 has been having seizures for 1. 5 yrs. Hers are the classic Tonic Clonic variety. Not fun while in HS. We have not had any luck with four different meds, but now are approaching it with nutrition changes, supplements, and bio-identical hormones. Many of hers follow the calendar.

Would you change your approach to this if you if had a label for it? How much of a waiting game are you having to play?

[Calley33]

I was just told two days ago, and I'll have another sleep deprived EEG as soon as they call to schedule it. The difference is, with Juvenile Myoclonic Epilepsy, it's manageable with medication (depakote, for example). If it's Progressive Myoclonic Epilepsy, medications stop working after a while, as you keep switching and trying new ones out. The prognosis is not good. I'm not sure how long it will take until I get the final diagnosis, or if I will ever get one until my symptoms tell them what it is. We'll see! Thanks for your response - I appreciate the support!!!

[RobinN]

Support is definitely here at CWE.
Rebecca never had a sleep deprived EEG, but she did have a video EEG and three other regular EEGs. The first one was abnormal the rest were normal.
Are you familiar with with any of the nutritional changes you can make? Or any of the alternatives to medication?

http://www.coping-with-epilepsy.com/...ive-treatments
http://www.dogtorj.net/id2.html

[Calley33]

The only nutritional changes I know of are the ketogenic diet. Are there others?

[RobinN]

I linked you to a chart above that has three on it.
You will be looking for:
The Atkins diet http://www.atkins-diet-advisor.com/m...kins-diet.html
The Low Glycemic Index diet http://www.glycemicindex.com/
The GARD diet http://www.dogtorj.net/id2.html

Others that encourage healthy eating for chronic illness would include:
The SCD diet http://www.breakingtheviciouscycle.info/
The GFCF diet http://www.gfcfdiet.com/
The Caveman diet http://stankurtz.com/biomedical/diet...c-illness.html

Eliminating MSG and Aspartame is also a dietary change that many people can try.
http://www.msgtruth.org/epilepsy.htm

After you study them you just might see how some are quite common and others take an different approach. What I suggest is you see how your daily modern diet differs from what is being suggested and possibly make some changes in your nutritional intake. Also keep a chart or journal of what you eat and see if it has any effect on the increase or decrease of your seizures.

You have to be aware though that it takes a long time for your body to rid itself of gluten and casein, so you won't necessarily see immediate changes.

[Calley33]

Wow - thank you so much! I have a lot of reading ahead of me it seems! I need to get healthy in general, so hopefully not only will these diets help me reduce my seizure activity, but lose weight! Thanks again!

[Bernard]

Hi Calley, you might ask your doctor about Piracetam.

[Andrew]

Hi Calley,

You said, "The only nutritional changes I know of are the ketogenic diet. Are there others?" I only use B vitamins to keep my seizures controlled. Some people on the ketogenic Diet also use vitamins. The difference between people who use B vitamins for nutritional purposes and me is that I wouldn't be here without my B vitamins. My seizures would just keep getting more severe until I was in permanent status.

[Dutch mom]

Andrew: Some people on the ketogenic Diet also use vitamins.

They all do; or should do according to the protocol. All (good) keto diëtist do subscribe supplements. The KD is not possible without suppletion of vitamines, minerals and extra calcium fot kids. Even when using the special ketogenic formula (Ketocal) for babies and tube fed patiënts specific individual supplementation is needed (nutritional needs are based on weight, age and gender, some anti-epileptic drug do cause insufficiency.) Many patients on the KD do get carnitine suppletion.

Mom of an 8-year old keto kid with Lennox-Gastaut Syndrome syndrome, anti-epileptic drug free and 3,5 years on the diet with succes.

[Andrew]

Hi Dutch Mom,

Thank you for correcting me on this. I usually post to a group called B6children. There are approx. 150 members in the B6children group all of which use/ or are parents of children who use vitamin B6 to help to control seizures. I am one of the oldest poeple in the world who is Dependent on Vitamin B6 in this way.

Andrew

[Dutch mom]

Thank you Andrew, I've just mailed another Dutch mom about the B6children-group. Her kid has IS + Down and is on pyridoxine. Hope she'll join the list.

[WorriedMom]

My son had a full panel blood test done at the local childrens hospital to look for progressive Myoclonic epilepsy, perhaps your doc could order that test for you, it takes about 6 weeks to get the results but at least you would know for sure. Good Luck to you with your diag.