Anyone have Myoclonus (sleep starts): What helps?

Hello @adam1234 and welcome to Mayo Connect. On Connect, there are several members who have posted about myoclonus. Here are links to some of these discussions that are found in the Brain Nervous System support group:

--Lance Adams Syndrome
https://connect.mayoclinic.org/discussion/lance-adams-syndrome-aka-chronic-post-hypoxic-myoclonus/
--Progressive encephalomyelitis with rigidity and myoclonus (PERM): Help
https://connect.mayoclinic.org/discussion/perm/
Are you interested in this topic because it is a recent diagnosis for you?

@adam1234, I'd like to add my welcome. I'm also tagging fellow members like @captainanxiety8 @shaneilya @falconhawaii traut4 and @medskush, who may be able to add more about their experiences with myoclonus.

There are different types of myoclonus:
- Physiological myoclonus
- Essential myoclonus
- Epileptic myoclonus
- Symptomatic (secondary) myoclonus

See details of each of these categories in these 2 articles.
https://www.mayoclinic.org/diseases-conditions/myoclonus/symptoms-causes/syc-20350459
https://rarediseases.org/rare-diseases/general-myoclonus/
Have you been diagnosed with a specific type of myoclonus that may help determine the cause?

I have been diagnosed with myoclonus due to a rare side effect from an anxiety drug (hydroxozine). It has been a miserable 2 years. I can barely function from day to day and cannot work. I have taken Keppra and also have tried Briviact. I get some help but the side effects are terrible for me, making it a no-win situation. Can anyone relate or have advice? I am seeking help for a male in his mid 30s. Thanks

Hello @mary05151989 and welcome to Mayo Connect. I see that you would like to connect with others who also have myoclonus. On Connect, there are many discussions from members who have mentioned myoclonus. Here is a link that lists those discussions. I would encourage you to click on those links and read what others have posted.
--Myoclonus discussions on Connect
https://connect.mayoclinic.org/search/
If you would like more information on myoclonus, here is an article from Mayo Clinic's website that explains this disorder along with symptoms, diagnosis as well as treatments.
--Myoclonus
https://www.mayoclinic.org/diseases-conditions/myoclonus/symptoms-causes/syc-20350459
You said in your last sentence that you were asking for a man in his mid 30s. I'm wondering what specialists he has seen for this problem.

Yes, every night, between 10 to 200. The doctors aren't helping me either. This is terrible. I hate going to bed at night.

My husband has dealt with restless leg and periodic limb movement disorder since just before and after surgery for a benign pituitary macroadenoma. Neurologist suggested magnesium glycinate in an attempted help for headaches and we also saw great improvement in his jerking while asleep. Slight twitching/jerking has returned the last couple of weeks because of some new stress…his body no longer compensates with additional cortisol, so we deal with a variety of health issues as they come up.

I had this problem years ago and my doctor gave me quinine and it went away after only a couple of days. It was fantastic, but I don't think they prescribe it much these days because of its potential side effects.

It seems to me that the diagnosis of myoclonus, is given when symptoms don’t fit “neatly” in to other more common neurological conditions. It is what my neurologist thinks I have, but is not sure. It has been one of 5 or 6 things she has tested me for. I have had multiple EMGs and full imaging of brain, nerves, spine, and blood vessels. Even a 96 hour, in home, video EEG study with cameras. I knew they would not see a seizure while I was confined to my house for four days. It only happens when I am walking or active. And while I have no seizure disorder based on that test, I am on keppra (which is an anti-seizure drug) for what starts as my right quad firing, weakness and the resulting, intermittent falling. Getting to a dosage of 2,000 mg a day has eliminated the falls, but having to deal with side effects like constipation suck. It is very frustrating when no one knows what you have. I had a second opinion at the Yale Mobility Clinic . But still no answers! And I’ve spent hours trying to research anything online that seems like what I have.

Hello @lcb24 and welcome to Mayo Connect. It sounds like you have spent a lot of time trying to get a correct diagnosis for your problems. I understand that neurological problems can be frustrating for both the patient and physicians. Often, neurological problems do not fit into a neat diagnostic box. From your post, it sounds like the Keppra has helped eliminate the falling. Is my understanding correct?

You mention, "right quad firing, weakness and the resulting, intermittent falling." Could you explain this a bit more? I'm also wondering how many years have you been experiencing these neurological symptoms?

Hi Teresa, thank you for the welcome! Apologize for the late reply. I probably need to change my settings to get an email when someone comments or posts something that is relevant. Yes, at my current dose of Keppra, which is 2,000 mg, I have not fallen in 7 months. So although there is still no “official” diagnosis, I guess they call it “ideopathic,” I am certainly pleased that the medicine has eliminated the episodes of losing leg strength. I had 23 episodes of falling (over a three year period) prior to getting on this medicine and on the correct dose. Even with 1,000 mg, I was still having intermittent episodes. Over a three year period, the episodes started slowly, maybe once every few months, however, they became more frequent and lasted longer (until I could resume any activity) before getting on Keppra. During the second year as the episodes were becoming more frequent, I decided to see a neurologist, who did an EMG, and ordered multiple imaging of my brain, spine, and blood vessels in my neck. There were no impingements found to explain the “firing” in my right quad that would be followed by obvious weakness in that leg. In some cases, I was able to catch myself and brace my fall. And it could be anywhere between 20 minutes and 3 hours until I could walk again. I am a golfer, so this idiopathic “movement disorder” is particularly frustrating, and potentially, life altering. This spring/summer, I am finally walking in one of my weekly golf leagues (rather than taking an electric cart). I hope that as I gain more confidence this year, to be able to also walk in my other weekly golf league, where the course is about 1500 yards longer. I continue to see my neurologist and imaging and testing have been repeated. But even though the medicine has eliminated the falls, not knowing what the real cause is very unsettling. I don’t mind taking the medicine, but it doesn’t make sense to me that I am on an anti-seizure medicine when I don’t have a seizure disorder. And it is always in the back of my mind that it could happen again. Although my Neurologist does not think this is an avenue to pursue, I do wonder if it could be related to COVID. I have read about ataxia myoclonus syndrome in mild acute COVID -19 Infection. Because I have asthma, I had two tough rounds with COVID during this three year period. I hope I have answered your questions. Linda