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Treatment Ideas For Juvenile Myclonic Epilepsy?
A MyEpilepsyTeam Member asked a question 💭

My son was diagnosed with juvenile myclonic epilepsy. He takes Keppra and has had several morning grand mal seizures in the last year. Any stress in the morning causes a seizure even on 2000 mg Keppra. We try to manage his stress and sleep as best as possible. He cannot drive until 6 month seizure free, being 18 yrs old that is very frustrating for him.
How do you manage your lifestyle, medications, diet, etc.

posted April 20, 2016
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A MyEpilepsyTeam Member

Hi! I completely understand your son's pain. I was diagnosed at 16 (on the day my dad was going to take me for my DL no less!) after my first grand mal.

Here are my suggestions:
Esierra is incredibly right on how awful it is for most of us to sleep. Part of it is the meds and part of it is the activity in the brain. Talk to your son's doctor and/or do research on sleep hygiene. As a teen my neuro always forced me to implement good sleep hygiene before we could talk about sleep aids. Then ask about something like melatonin. If it helps him, then it is worth it.

If your son is dealing with external stresses, he needs to find a way to manage that. You don't mention how long ago he was diagnosed. I will admit that being diagnosed as a teen was absolutely heartbreaking. I hated relying on my friends and family. In retrospect, counseling kept me grounded and helped to manage my stress. If he is willing, get him into a local epilepsy support group or counseling. It is a huge lifestyle change and emotionally draining.

And the biggy... The state recommends 6 months. A doctor might sign off after six months. I went two years seizure free before I got my license. I wanted to be safe. I had nearly six years to know what set my seizures off (lack of sleep, menses, stress). Right now, your son needs time to learn his triggers and how he can be safe rather than rush to get his license.

posted April 23, 2016
A MyEpilepsyTeam Member

Hi, i was diagnosed with JME and sleep deprivation is my #1trigger. I didnt realize until literally a month ago, that perhaps I wasnt sleeping as well as I thought I was. So one night I counted how many times I randomly woke up. I lost count at 15 (no wonder I was so groggy every morning). My drs had prescribed me a sleep aid but I hate drugs so never took em.
After a ton of research however I found that magnesium is a natural sleep aid, it also has a ton of other benefits. I bought 500 mg magnesium pills which gave me THE WORST STOMACH CRAMPS!!!
So I did a lil more research and bought some magnesium oil, i found it on Amazon, it was a bout 20 buxs, I choose the one with the most reviews. I gv myself a foot massage everynight before bed and sleep like a baby. I've literally never slept so well iny adult life, ever.
Its 100 % natural and safe. I do not take any AED's just magnesium oil and vitamin B and have been seizure-free since I started the magnesium massage. Ofcourse I would never tell anyone to stop taking their meds but incorporating natural remedies if it helps seems like a win, win.

posted April 20, 2016
A MyEpilepsyTeam Member

Thank you all for your comments and experiences, it's been great to hear from each one of you. We have tried melatonin for sleep and I will be getting some magnesium oil to try. Stress in harder to manage, he wasn't excited about any meditation tools, yoga or relaxation CD's I suggested. I will be talking to his dr next week about Charlotte's web, I would prefer it over Keppra any day!.
We are completely understanding of the dangers of driving without the seizures under control. Since the diagnosis last year he has handled it very well, even after having a couple tonic clonic seizures in front of his high school friends. His friends have been amazing and supportive, but you know there are always the comments and friendly jokes. He was only driving for a few months before and he really misses the freedom. Soon he will be in college and living on campus so it won't be an issue. Thank you again!

posted April 23, 2016
A MyEpilepsyTeam Member

We are new to this as my daughter just diagnosed with generalized seizures..(whatever that means). Her seizures last about 5-10 seconds and usually 4 or 5 a day. She never had these seizures until we did a sleep study in Boston and they added Keppra.. I believe the Keppra made her seizures worse. Before Keppra she would have quick seizures only when startled now she has them just sitting on couch or in a chair.. We are in the process of weaning off the Keppra.. We also started Charlottes Web CBD oil 2 weeks ago. Praying for a miracle..

posted April 23, 2016
A MyEpilepsyTeam Member

For the majority of us who have epilepsy , struggle reaching to be SEIZURE FREE and being able to drive. But also there are those of us who get the nagging thought of , " what if I get in a car reck ? What if I kill someone or myself" ? And so on. Epilepsy is the one of hardest lifestyles . We didn't choose this life . We had no choices to choose from after being diagnosed with it. My point I'm trying to get to is he may have to learn through his experiences and , if he's going to any support groups, he can learn thru those too. In time he will also learn how to cope . If he is struggling whith any of the top main trigger ( stress, sleep, and taking meds on time ) for his seizures, he may not be able to drive. You don't want to put his hopes up too high and remind him the direction his reality will be going if he's not able to be seizure free. Another struggle he may go through, is even though he is taking his meds on time, getting good rest, and keeping stress down, out of the blue he may still have a seizure for what ever the reason is. I know this because I myself am struggling with this. I do everything I mention and at anytime, place , out of the blue I may go into a seizure. I've had epilepsy since I was a baby and have learn everyday of my life about it. I'm still learning things today about it. I don't know who his Dr. Is nor I know his/her specialty. But thru my experience, an Epileptologist ( a neurologist who understands epilepsy ) is the best Dr., for anyone with epilepsy. If you do then thumbs up to you. In my opinion an Epileptologist is open to many different paths than a neurologist. Maybe if his Dr. Can make him a candidate for a brain surgery, could possibly help. No garrantee , it will make him seizure free and able him to drive. Hope this helped some. Good luck

posted April 21, 2016

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