How does your insomnia manifest?

Symptoms
#1

I’ve seen several people mention they have insomnia, but I’m curious how it manifests for you.

Is it that you can’t sleep, but don’t feel an underlying reason beyond that?
Or do you feel unable to sleep because of other symptoms, such as intense anxiety?

For me, I’ve been experiencing a strong fight or flight anxiety sensation in my chest and stomach, plus my whole body feels wired and unable to relax or sleep because of it. I’ve tried deep breathing and other relaxation techniques, but they haven’t helped. I seem to be stuck in this state every night. During the day the anxiety is still there, but not as bad.

Tonight for some reason I keep shivering too, even though the heating’s on and the room isn’t cold. It’s like my body is doing everything it can to keep me wide awake.

This is by far the worst symptom for me.
I hope it eventually improves.

For those who’ve had or still have insomnia, did it improve for you over time with PFS?
If so, how long did it take, and do you have any tips that helped you manage it?

#2

I managed to get a bit more sleep last night than on previous nights. Here’s what I did:

  • Went to bed as usual and tried slow, deep belly breathing to relax (it didn’t have a noticeable effect at first).

  • After a while of not being able to drift off, I moved downstairs and lay on the sofa to try sleeping there. I did the deep belly breathing again, and it helped a bit I think.

  • When I inevitably woke up again in less than an hour, I went back upstairs.

  • I kept repeating this, going up and down between waking and sleeping.

It’s hard to say how long I actually slept each time, as it took a while to drift off and I tried to avoid checking the time too much, though I did glance at it a few times through the night. I’d guess I slept around 30 to 45 minutes at a time, certainly not longer than an hour. I didn’t get much sleep overall, but it was an improvement compared to previous nights as I had more episodes of sleep.

I think the light activity of walking up and down the stairs helped to release some of the nervous energy charged in my body and made it a bit easier to get some rest. The deep belly breathing also seemed to have a subtle effect, it didn’t feel like much at first but I think it helped relax me a bit more. Changing location probably helped too, as I’ve read that lying in bed unable to sleep can make it harder to drift off.

Anyway, that’s my tip for anyone else struggling with insomnia who has a constant fight or flight feeling when trying to sleep:

  • Try moving from your bed to another location to sleep, ideally on a different floor if possible, so you get a little light movement in. Then if you wake up again, move back to your bed and repeat if necessary.

  • Do deep belly breathing to try and relax your body / nervous system.

#3

Don’t suffer from it currently but it manifested like I was completely wired after my crash. Nighttime would come and it was like my ability to feel tired was deleted. Almost like when you have a big obligation the next day and you can’t think about anything else so you just lay there with a busy mind. When my body would get close to giving in and falling asleep I would get hypnic jerks that shot through my body, jolting me awake. Once I started falling asleep I would wake up a few times a night often with my heart pounding and in cold sweats. I probably started getting meaningful rest around month 6. It transitioned to getting about 5-6 hours of sleep before waking up.

You will start getting sleep soon. Just get whatever you can and know more should be on the horizon. Absolutely do not seek help with drugs for sleep or you will make the situation worse. It will eventually come.

1 Like
#4

Thank you for sharing your experience and for the reassurance that sleep should return. I will take your advice and try and hold out for it without using anything.

It sounds like we’ve had some similar experiences with our bodies feeling wired and waking up during the night. I haven’t had any hypnic jerks myself however, they sound very alarming and must have made it hard to settle again.

That was my thinking too, trying to avoid any medications for fear of making things worse. The insomnia has been so severe that I’ve been very tempted to take something, especially as I still have some Clonazepam from before PFS. I might throw it out so it’s not an option.

I did take some magnesium glycinate tablets last night though. I resorted to them because as the night went on it became harder to sleep after several cycles of waking and sleeping. I didn’t notice any negatives from taking them, but I did wonder if they could cause some unseen effect that isn’t immediately noticeable.

One of my concerns around them is how the supplements are made, I don’t know what chemicals are used in the extraction and refinement process that might leave trace amounts in the tablet. I’ve never heard of it being an issue for people without PFS, and it probably sounds over the top to worry about it, but in my current state I really don’t know, people with PFS seem to be a lot more sensitive to all sorts so I’m trying to be cautious.

For example, I’ve read several people having a problem if they supplement zinc, which doesn’t seem to impact general people. With zinc however I’ve read it affects 5ar. I also wonder whether these minerals are safe for us to take in the forms they’re made into, for example, magnesium glycinate, rather than in the forms found naturally in foods. And whether taking them in isolation from other compounds which would normally be found in concert with them in food, might affect how the body uses them.

It feels like a lot to be concerned about, but I want to do everything I can to support my body’s recovery, especially in these early days. I’m also trying to be mindful of what foods I consume and what cosmetics I use. It’s hard to know where to start. I’m mostly trying to get tips from reading other members previous experiences and look up foods which are known to effect 5ar.