Hello, I have joined this forum to see if anyone else has myoclonic jerks in the same way I do. I have between 1-5 massive jerks a day, 3-5 days a week. Before a jerk I feel incredibly sleepy and strange and look pale. My partner can look at me and say "you need to jerk". Once I have jerked I am awake again. The jerks usually involve my left arm and both legs. They are sharp, quick and exhausting. I can also have jerks out the blue without sleepiness. Sometimes these are my left arm and head in a smaller manner. I've read about myoclonic jerks being called twitches...there is no way these would be called twitches! Any wise words?

So I'm curious if you are seeing a doctor for this. Has a neurologist checked you out? I only have minor awareness about the (negative) myoclonics my child has, a generalized seizure (thought some can be focal) that is controlled by medication. That's my favorite part.. controlled by medication. Still has occasional partials but the generalized types are under control. I know not all myoclonics are seizures but the tired and sleepy aspects sound a lot like seizures. And the way you say you need a jerk - I have described my child's seizures as building anxiety and then after a partial seizure, it's like the seizure washes away the emotional weirdness and things are better for a while before the process would start over.

Hi DebsC,

Welcome to NT Support forums!

I experience some intermittent myoclonic jerking. It can be very startling!
Some types of meds make this worse for me. Stress and getting overtired also makes it worse for me. Clonazepam helps me when myoclonus worsens.

I don't personally experience this in the way you describe. Mine is random without any warning signs.

I hope you find the info and the support you find helpful here!

Please jump in on any of the many interesting forums here.

Hope to see you around the various forums.

Warmly,
DejaVu

Thanks for the welcome deja vu. Pogo, I'm sorry your son is going through this. I think the same about the sleepy bit seeming a seizure symptom. I'm going to see a neurologist soon and this week a specialist at the Tropical Diseases hospital to rule out Lyme. I've been unwell with fatigue and pallor and various non-specific things for 6 months now, so much so that I'm on long-term sick leave. The jerks started about 8 weeks ago. My head feels quite odd. Not sure really how to describe it! If anyone has the same overwhelming sleepiness before their jerk, please let me know.

Please would you mind telling me more about your jerks DejaVu?

Hi DebC,

Welcome to the forum! I had myoclonic jerks and they always seem to happen early in the morning or late afternoon. My Dr. did a sleep study on me and found I was having seizures in my sleep which I didn't realize was happening, then I was put on Vimpat and that stopped all of the myoclonic jerks. According to my neuro it was all do to lack of sleep. I also started CBD oil (medical marijuana) and that has really helped me. I get it in a little spray bottle and squirt 1 squirt in my mouth once a day and take my word it has greatly reduced all of my seizures. You may want to give it a try. Ask your Dr. about sleep study because this may be leading the myoclonic jerks. I wish you the best of luck and May God Bless You!

Sue

A sleep study sounds interesting! I think I sleep deeply all night but apparently I'm very disturbing, moving a lot...oops! Marijuana drops sound perfect but I think not approved in the UK Grrr

Hi DebsC,

Ask your Dr. to refer you to see a sleep specialist or a neurologist who will do a sleep study. Be sure that they are doing a e.e.g. (brain wave test) and a EKG at the same time.

If I may ask do you ever wake up in the morning and still feel very tired during the day? Also if you have a partner do they complain about you snoring or you stop breathing in your sleep? If anyone has noticed that you may have sleep apnea or another sleep disorder which sometimes can lead to seizures.

In regards to the medical marijuana you can check with your pharmacist and they can tell you if it's legal. I buy it on line just check out the webpages Healthy Hemp oil and Charolettes Web. Wishing you well and May God Bless You!

Sue

Thanks, Porkette, I will ask for the sleep study. I'm seeing a neurologist 10th August. I sleep deeply and apparently quiet but fidgety! I'm having a big problem with fatigue at the moment and just feel unwell. I don't snore though. We'll get to the bottom of it soon I hope. Thanks for the advice

Hi DebsC,

One thing you may want to try if you want to is taking vitamin B12 1000 mcg. once a day I found this a big help reducing my seizures and also relaxing me. I take it in the morning when I eat breakfast and it works really well. Also if you are drinking diet soda or anything with NutraSweet this can trigger seizures for some people along with eating to many carbs so you may want to cut back on them and see if that helps. I wish you only the best and May God Bless You!

Sue