Jme

jonnyp95

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Hi, new to the forums.

My partner suffers from JME. Recently she's been having bad shakes/twitches in her arms and whole body - I'm worried these will escalate.
I've done some research and apparently taking a magnesium supliment and drinking plenty of water can help curve the twitching, does anyone know of anything else that can be done to control these?

Any help will be appriciated.
 

Nakamova

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Hi jonnyp95, welcome to CWE!

It's great that you are looking for ways to help your partner get better seizure control. It is possible for uncontrolled symptoms to escalate, so anything she can do to put the brakes on is helpful. Is she on any anti-seizure medications? If so, she should let her neurologist that they aren't working well, and ask about other options. In the meantime, it can help to keep a seizure diary, so that she can track symptoms and monitor if they are changing in any way. The diary may also help her identify and triggers that make her seizures worse.

You're right that magnesium can help in some cases. Has she given it a try? You might be interested in this thread: http://www.coping-with-epilepsy.com/forums/f23/magnesium-20251/

Best,
Nakamova
 

chop456

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jonny,
My daughter is also diagnosed with JME and we very recently started a magnesium supplement. We are hopeful this will help somewhat. She takes lamictal xr 300mg.

Does you partner have the shakes/twitches only upon waking or when very tired? Out of curiosity, when you say bad - how many or for how long do they go on? Paige continues to have "jerks" after a year on medication. It can be so frustrating! She can go 2 weeks with nothing and then have a couple of weeks with days and days of morning jerks.

Keep us posted on how things are going. I am always happy to connect with others who are working thru the JME diagnosis.
 

quailguy7

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Has your daughter ever had a tonic-clonic seizure, or just the myoclonic jerks?
 

chop456

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My daughter has only had myoclonic jerks. Her EEG showed that she also is prone to absence seizures - but we never saw those in her. She started the morning jerks in January of 2012. She knew right away something was not right and was persistent with me for 2 weeks. One morning she fell and we started the diagnosis process after that. She has a "classic" JME EEG. She was put on Lamictal XR right away and it seems to be keeping the tonic-clonic at bay (knock on wood). She still continues with morning myoclonics and it is so frustrating. We have an appointment on Friday to look at some dietary changes to try and help.
 

quailguy7

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I have had mornings jerks for four years without medicine and I have yet to have a tonic-clonic seizure. I wasn't diagnosed with JME until this week however because I avoided going to the doctor. I only have the jerks on mornings where I get very little sleep or drink moderate to high amounts of alcohol the night before, so I'm reluctant to start medicine (my doctor prescribed me Lamictal also.) I hope you find some dietary solutions to help your daughter!
 

chop456

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The trend we are seeing with Paige and her myoclonics are lack of sleep, her time of the month or if she gets out of bed too fast in the morning. She needs to lay in bed for 15-20 minutes before she gets up otherwise she will start to twitch. From what I am understanding, Lamictal will hopefully ward off the T-C but not necessarily the myoclonics. I did ask about other options for the myclocnics and her neurologist mentioned that sometimes you end up chasing the myoclonics and lifestyle changes are sometimes better suited if the myoclonics are not "life altering". If they become life altering or impairing, we can pursue options for the jerks.

Paige is taking 250mg of Lamictal. She just went down from 300mg. When she went up to 300 I thought it would maybe decrease the myoclonics. Since it did not, the Dr. was OK with reducing down to 250. For Paige, she is having minimal side effects from the Lamictal. She is in honors classes at school and carries all A's and B's.
 

quailguy7

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That's good to hear about the side effects! I hear it varies from person to person. I start graduate school in a couple weeks and I'm nervous to start medicine in case it affects my ability to study. My doctor has me titrating up to 200mg. I'm kind of the opposite with my twitching though; it's worst for me when I'm laying supine so it forces me to get out of bed when I wake up. I didn't realize how much epilepsy symptoms vary until I started looking into it...it's crazy stuff.
 
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