Hypnic jerks preventing sleep onset

[Hannah1]

Hi all and @YippeeKi YOW !! I realise people have asked about this more generally before, however, I was wondering if anyone can shed any light on what is happening with Hypnic jerks preventing sleep and what might help. My son (18 years) is suffering from extreme chronic insomnia. He has M.E. (after a course of antibiotics and contracting mono 2 years ago). His symptoms are mostly limited to very bad fatigue and sleeplessness. He doesn't suffer any great pain symptoms so it is not pain or other common factors causing his inability to sleep.

What he describes, and what I have witnessed when I lie in bed beside him, is that he starts to fall asleep over and over again but each time his body jerks and he 'wakes up'. This happens through the night until the morning when he gets up (having had no sleep) and then carries on through the day also with no sleep (he never naps as he is not able to).

The only way he can get any sleep at the moment is with Zopiclone. We have tried numerous supplements including mag. glycinate (he still takes this) and melatonin (after a few nights this starts having the opposite effect for him), we have tried low-dose anti-depressants mirtazapine and amitriptyline (these seem to help a little but only for a time).

I would like to understand what is happening as he is not particularly stimulated, right at the moment he doesn't have any nervous energy or anxiety - he's fairly relaxed during the day (although at the moment he is feeling a little depressed). It's just like his brain will not allow him to fall asleep. Any thoughts on what is happening and what might help very much appreciated. We are considering LDN, however, as he does not have pain or fybro, but he does have a very sensitive system, I am worried about going down this route as I know that it can have the opposite effect for some people.

 

[Judee]

Which antibiotic? The HormonesMatter.com website seems to have a lot of stories of people who were made ill following antibiotic usage and not just the "floxed" kind.

 

[lenora]

Restless legs can be a problem for most of us. He could have a shortage of Mg., which should be given at nighttime....or there is a drug called pramiprexole that I have found very helpful (when all else failed). I hardly ever take it now, perhaps l/2 of a tiny pill if my legs feel as if they're going to misbehave.

Also, is he listening to any fast music, watching comedies on TV just before bedtime, on social media or the like? These can all drive a hypersensitive system into overdrive.

My husband also has leg and hand movements even when he is asleep. These don't aggravate him in the least, so we've just let it go. He isn't even aware of them.

In my case, it was a real problem and it was only getting worse. The med worked immediately and like I said, I hardly use it all now. It's not a traditional use for it, I don't believe. Your son shouldn't use it regularly, especially an entire pill. It didn't make me sleepy or keep me awake (well, perhaps it did the latter), so I don't like taking it more than I should. Good luck. Yours, Lenora

 

[Nord Wolf]

No help here on the meds, but what you are describing sounds like Periodic Limb Movement Disorder. I have this. It can affect the lower and or upper limbs, and even torso. Some nights it happens when I'm falling asleep, but mine mostly happens (and very strongly) while taking naps during the day. My entire body jerks me awake until I'm so exhausted I just crash into fitful sleep during naps. My body will then intermittently jerk all through the nap. I've even pulled muscles and have had severe muscle cramps occur from it happening. So far I've found nothing that gets rid of it. I do notice it comes and goes in waves. It will happen daily for many days at a time, then tapper off and happen only mildly, and then pick back up again.
There is quite a bit of info on the Internet about the disorder if you wish to look it up.

 

[Hannah1]

Periodic Limb Movement Disorder

Thanks for the thoughts and the info - I really appreciate it. I don't think this is my son's issue as he only gets the jerking in relation to sleep. Last night was a bit different. He actually managed to fall asleep (without jerking) for about 15-20 minutes (I was lying next to him) but then he woke and was unable to go back to sleep. So it seems that he unable to stay asleep through the different stages.

 

[Azayliah]

As soon as I start seeing/hearing the first hints of a dream, the jerking feeling snaps me awake. It feels like my chest or whole body lurches, or like my heart just leapt into my throat. Occasionally it will be the jerk of a limb that wakes me, but it's usually centered at my chest. Falling fully asleep and then waking from it 10-20 minutes later is also pretty frequent for me, but I usually don't wake that way if I've been sleeping for longer.

If your son's experience matches mine, then maybe something in my post will be useful, though I am not able to help with the medication aspect.

I generally wake 2-3 times before it stops. After 3 times I get up and do something else for a while so I can exhaust myself. It seems more likely to happen when I am sick, or when my brain is overexcited or something feels unfinished. For example, if I spent time that day thinking about something interesting, have been focused on a task at work, or am invested in the story in a book or TV show; or if my sleeping area is not properly arranged, or I didn't complete a task I planned to do (brushing my teeth, paying a bill, etc.).

Potentially related issues:

1. High BPM / Heart Rate Dysautonomia?
Besides anxiety, Wikipedia's hypnic jerk article lists stimulants and exercise as potential triggers. Those don't apply to me, but everything listed involves increased heart rate. My heart rate often runs pretty high, and if it increases when I get sick then hypnic jerks are practically guaranteed. -- BPM issues common for pw ME/CFS.

2. Circadian Issue
I probably have N24SWD. Trying to force myself sleep outside of my body's self-determined sleep hours causes me to repeatedly wake up from hypnic jerks. -- I think I read that some pw ME/CFS may have had changes to their circadian rhythms.

3. Spontaneously Waking
Sometimes I wake with palpitations, dizziness, and a feeling of doom. Now that I'm used to this I don't get anxious, just tense and cranky. Calming exercises do not help, so it always takes 2-4 hours for the physical symptoms to stop. Could be nocturnal panic attack. -- Feels like a more intense version of hypnic jerk waking after 10-20 minutes of sleep. Not sure if anxiety is a symptom for some pw ME/CFS or Insomnia.

4. Brain Over-excitation
My migraines, with or without pain, usually have symptoms including insomnia. When the migraines flare, hypnic jerks are more likely. Also, the specialist told me it's very important to do things to calm my brain because it goes from 0 to 100 in the blink of an eye; this means it's better for me if I meditate and try to stick to routines so my brain knows what to expect, and doesn't signal "omg it's a bear!" just because I ate at a different time. -- Migraine common in pw Insomnia, could be worth a closer look.

To me, these point to brain over-excitation as a problem. I think that I am probably not anxious most of the time; I work to avoid stress and excitement, so my world is low-intensity, and I don't feel or look anxious. However, I am hypersensitive to just about everything, so it doesn't take much for my brain to set to firing off too many neurons, even if my emotional and physical state doesn't match its heightened activity.

 

[Nord Wolf]

I don't think this is my son's issue as he only gets the jerking in relation to sleep.

The PLMD only happens in relation to sleep. Copied from the Internet:
"Periodic limb movement disorder (PLMD) is a sleep disorder where the patient moves limbs involuntarily and periodically during sleep, and has symptoms or problems related to the movement."

But I'm certainly not saying this is what your son has.

 

[Hannah1]

The PLMD only happens in relation to sleep

Ahh, thanks - I obviously scanned too quickly. Yes, perhaps when he is over-stimulated this is what is going on.

 

[Hannah1]

As soon as I start seeing/hearing the first hints of a dream, the jerking feeling snaps me awake.

Thanks, this does sound a lot like my son. He is very hyper-aware, and sensitive and has been from an early age. I think the 'Brain Over-excitation' is obviously something he is prone to. Somehow getting mono and then M.E. has meant that this factor is now intensified. He's pretty good and keeping things routine and low-key but probably just not sleeping creates a vicious cycle. Thanks again for your input.

 

[Diwi9]

I dealt with exactly what you describe. I didn't do anything to specifically target these ticks, but they eventually went away. I will only get them know if I'm in a crash or need to rest but have to stay awake, like waiting at the doctor's office.

 

[Hannah1]

Heart Rate Dysautonomia

I have been asked if my son might have Pots - I don't think so, based on my observations. However, he is supposed to be seeing a specialist to get tested but the wait time is long in this country. Someone suggested trying Beta Blockers to see if these have any effect - do you have any experience with these? TBH we are reluctant to use meds but desperately want to stop the sleeping tablets.

 

[Azayliah]

probably just not sleeping creates a vicious cycle.

I could never tell if this was the case for me. Sometimes it seemed that just getting some sleep meant that the hypnic jerks stopped, but I don't really know if that actually meant I was at the end of some kind of flare.

I have been asked if my son might have Pots... Someone suggested trying Beta Blockers to see if these have any effect - do you have any experience with these? TBH we are reluctant to use meds but desperately want to stop the sleeping tablets.

I have been diagnosed with Inappropriate Sinus Tachycardia, but not POTS. When I tried an at-home version of the POTS test, the portion where I was supposed to stand in place for 10 minutes almost made me pass out one day, but the next day it wasn't a problem.

I'm pretty sure my doctor tried metoprolol for me previously. I don't recall any side-effects. I didn't find it helpful so I stopped taking it, but now that I have an Apple Watch to tell me whether or not the pills are actually helping, I think it's worth trying the beta blockers again. I lay in bed all day to keep the heart rate down, and if a beta blocker can help me to get out of it more often, then I'd be willing to take it.

As to the Apple Watch, I rely on it a lot to tell me what my heart rate is doing. I've compared the watch to the heart rate monitors at the doctor's office, and it aligns almost perfectly, so I'm pretty confident in the readings. The beta blockers are probably cheaper, but there are also cheaper alternatives to the Apple Watch that will monitor heart rate, so it could be worth looking into one of those.

 

[Nord Wolf]

Here is another short thread where this topic was discussed last year:
https://forums.phoenixrising.me/threads/muscle-jerks-when-resting.89246/#post-2422844