Help with BFS Night Myclonic Jerks

DJH621

Well-known member
Hi,I'm a long term sufferer of BFS but night myclonic jerks are a new symptom to me during this "relapse". I 1st had them a couple of months ago, then they slowly started going away. I had them again last night, it seemed almost every time I drifted off to sleep. I got little to no sleep (even with valium) and it's very discouraging. I would appreciate any help anyone could give me with the following:1. Do you suffer nightime myclonic jerks---if so do they sometimes last all through the night?2. What does a sleep study look for? My neuro suggested that I may need one bcause of these myclonic jerks---although he also stated that I do not have ALS or MS. What does the sleep study look for, (would have asked the neuro more questions but thought the "jerks" had gone away)?3. Are nighttime myclonic jerks a common symptom of BFS? Both my regular MD & my neuro just said "possibly". THANKS SO MUCH FOR YOU HELP! Denise
 
I know how frustrating these can be. To answer your questions...1. I have had times where the jerks have kept me awake all night. 2. I had a sleep study done specifically because of jerking awake. In general, I think the studies are done to either rule out or pinpoint sleep disorders. In may case, they were looking for signs of sleep apnea, RLS or PLM. It actually didn't reveal very much, but did show lots of movement and periods of waking up. They had me take Trazodone after an hour and a half of not being able to sleep, so who knows if the results are even accurate. 3. I don't know how common these are for people with BFS, but I've read here about a few people who've had them and I know mine started just as the rest of the BFS fun began.I know I responded to another of your posts asking about these and mentioned that Neurontin and Trazodone have helped, but I've done some research since then and I've found some evidence that suggests Taurine (an amino acid) in 1500-2000 mg doses can help with these sleep starts. I just started taking it, but I'll let you know if it helps at all. Some people say to try drinking gatorade or orange juice, but that hasn't really helped me.I hope that these go away for you again. It is horrible to be awoken over and over again at night. I still think that this part of the BFS could be axiety related for me because of how and when it started, but now I have all of this anxiety about even going to bed, so it's cyclical for me. The reason I think the jerks have to do with anxiety is simply because it seems like your body will start to get into slepp mode, but your brain will try to shock you out of that state. My neuro says it's a problem going from sleep stage 1 to sleep stage 2. I really feel for you because I had a bad night last night also and it is frustrating and sort of scary to not really know why this is happening, what we can do about it, and if/when it will go away. There is not much information out there about sleep starts/myoclonic jerks because for most people they happen once or twice and they're just a normal part of the sleep process. Most of the information is just posts from people like us who have them over and over asking for help dealing with them. I know I wrote a lot more than answers to your questions, but this is something I've been trying to deal with myself for a while now and I get really frustrated with it. Hopefully they will just go away as quickly as they came for both of us.
 
Had them a ton in the beginning and time to time still (2 yrs later). Mine were accompanied by my heart racing (how fun!). My sleep study showed the racing heart and the abrupt awakening...no suggestions except medication. Good news is they are VERY infrequent now. Sleep study looks for epilepsy too (in case it's really mild and undiagnosed)- they thought for sure I had it because of an abnormal EEG but no- just weird brain rhythms that don't need treatment.Here's to better sleep for you!!
 

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