Insomnia.

For the love of God, let me sleep! Like it wasn't bad enough I have Wide Awake night waking, now I can't even fall asleep to start with.

I'm weaker and more exhausted than I've been in my unreliable memory. I'm doing the Sleep Hygiene things, and usually get up and lie on the couch, fall asleep there for half an hour, wake up because I'm uncomfortable, and go to bed. Whereupon my night waking will have me up in a couple of hours. Wide awake!

Dammit!

Just having a good whinge really. It's 2:45am, I would never normally be on my phone - not conducive to sleep - but beyond caring. I feel defeated. I just want a good 6 hour stretch! Its been YEARS!

No wonder I feel effing appalling. Jesus.

Need to see a sleep doctor. Can only get appointment through my neurologist. Missed seeing my neurologist cos I had a migraine. Probably caused by sleep deprivation.

FML.

 

Been there myself, several times, well, more than that - but I don't have any specific advice that's not standard.

Apart from insanity of course, planning how to destroy the universe gives you something do do with all the extra time, and can be pretty boring.

 

Ooh, insanity as a distraction from insomnia.

@Wonko, you genius.

Evil mastermind overlord genius, plotting the destruction of your enemies, obvs.

Merry Christmas, <<cackle>>

 

I sympathise, and hope you can get to see a sleep specialist soon.

I go through patches of sleeping very badly, some nights with no sleep at all. I've given up on all the sleep hygiene advice - it may work for healthy people, not for me. Just leaves me feeling like a wide awake failure.

Now if I can't sleep, I stay in bed, and either read, play games on my tablet computer on the night light setting ( not too much blue light), listen to audio books, or do anything else to distract myself until I feel a bit less wired, then turn off the light and leave an audiobook running, and sometimes then manage to fall asleep. This wakeful activity can be for several hours if I'm really 'tired but wired' and know I won't sleep.

Sometimes that works. I often sleep better to an audiobook or the radio than in silence.

But I'm no expert - this is more a coping strategy than a solution.

Best wishes, I hope you find a way to cope.

 

I'm at a loss for suggestions that are better than the evil mastermind plan, but wonder about this

That's what I do too! so now I've got pillows and blankets that make my couch comfy to sleep on. That way I might get more sleep on the couch. Sometimes I do. Might help?
It's pants, I hope you sleep better soon

 

Sorry to hear about your issues, sleep disorders are the tool of the devil
If your sleep issues are ME/CFS related then they can't do much for you except stimulants and sleeping pills. I started my ME/CFS diagnosis journey by going to about a dozen sleep docs, it was not very helpful
Keep in mind benzos are essentially alcohol in a pill though modafinil can be like speed in its wakefulness promoting according to some people. That said if you have something like sleep apnea (surprisingly common) then they can treat it.
A suggestion, try not sleeping unless your tired and let your body decide instead of what time it is, also sleep as long or as little as you feel, not what you have missed. The exact opposite of sleep hygiene they will incessantly tell you about. Try this for a few months and see if any pattern emerges.

 

I second that.

 

Sympathies @Squeezy. It's really no fun.

I've had trouble since becoming ill and at times have gotten to the point of just not wanting to go to bed at all as I dreaded just lying there wide awake your after hour.

I agree with @Alvin - a lot of the sleep hygiene advice can be counter productive for us. Trying to force your body to cooperate won't work and I find that if I am not getting the rest I need, especially if I don't have the little naps when my body tells me to, the problem gets worse.

 

Thank you everybody!

I was so alone and miserable writing that, and didn't really expect anyone to give much of a toss. Should have known better

@Skycloud I'll make my couch comfier too - good idea. Husband is a snorer and I sleep in earplugs... Might become my preferred bed

@Trish my husband can only sleep with an audio book. I need total silence. Cannot comprehend you noise-needers! Tired but wired is awful - meditative breathing helps me.

@Alvin yes I agree, no benzos! I have been letting myself sleep according to my body's dictates for years, including naps. But it's just gone horribly wrong these last few weeks.

@Invisible Woman yes, it's a bloody catch 22 with the dreading bedtime, isn't it? And for me at the moment I'm already IN bed as I'm too ill to be on the couch with the noise of the family.



I think my insomnia is to do with messing around with my thyroid medication. I'm SO hoping it is. I've been really ill since then. Fingers crossed it hasn't been a coincidence, and it's the medication change that has upset my body, not a worsening of my ME.

 

Well thyroid meds could certainly bugger up sleep.....

Levothyronine (T3) makes me really, really aired

Too much Levothyronine (T4) wired but not as bad as with T3 & tired but s!eel badly.

Too little T4 and its pretty much lights out - I can't think straight and call asleep everywhere but still feel utterly vile when I wake up.

Fingers crossed @Squeezy you see some improvement soon.

Like you I also use earplugs. Both husband and dog snore -but never in sync....

 

Oh dear me. I had no idea insomnia was a hypothyroid thing too. Looked it up. I'd always assumed it to be a hyper symptom, and that we No Energies would always be falling asleep everywhere...

Yes, this is how it's always been for me - nigh on 15 years of it. Occasional up all nights with stress, but not weeks of it like this.

Too little thyroid hormone causes high cortisol, which keeps you awake and ruins sleep quality. When you've knackered your adrenals out, adrenalin takes over to keep things going in the body. Even worse for sleep.

Comforting really. Elbows and knees feel peculiar - floating and fizzy, achey and unmoored. Ghastly sensation. Such weakness. Relief to hope that being back on NDT instead of just T4 will resolve this.

Plus a host of supporting supplements to make best use of it. But naturally, my tummy is aflutter so popping pills is hard. Just bloody cooperate, you recalcitrant wreck of a body!

It's 3:11am.

Oh my, poor you! A cacophony. I'd exile the pair of them - as soon as my daughter's back at college, I'm having her bed.

Oh god, I'm so tired.

 

Oh no, no way is this just a whinge! Being wired but tired is one of the worst things ever!

I found a thread on the other place dealing with "wired but tired" and decided to try something suggested by Valentijn: N-Acetyl-Cysteine. I used to have insomnia about every other day, and since I started taking this (with doctor's approval) about two months ago, I don't think I've had more than 5 bad nights.

Don't know if this might work for anyone else, but it's been a godsend to me. I take it according to label directions thrice daily, and I can tell when I've missed it.

I hope you can sleep, Squeezy. It's miserable otherwise and makes life so hard to carry on as usual. A hug or three.

There's an American writer I enjoy--David Sedaris--and his voice puts me to sleep pretty easily. I've listened to his recordings so much I don't even have to pay attention any more.

 

@Squeezy - if I'd known you were awake too .....

The phone call from my friends was a little late for me yesterday evening and a little too long. Sure enough both brain cells overstimulated and still awake at 3.11 am too. Sigh.

I must investigate this N-Acetyl whatsit @Louie41. It sounds like a useful substance.

I use Circadin, but I was advised to use it in bursts of up to 3weeks as needed. Any longer & my doc reckoned it would stop being effective. However it's not a silver bullet - it just helps. Except when my thyroid meds are off. Then nothing helps until I get them sorted ...and that takes sooooo long! Still I'm fairly lucky the bog standard meds work for me.

Maybe it's my natural contrariness but it seems that if a drug is designed to make me sleepy, it'll make me feel knackered, but also wide awake and jittery.

 

The bog standard GP issued sleep meds make me itch, which stops me sleeping, so you're not the only one.

Like you I have found things that can help, a bit, but nothing that will definitely get me asleep, and keep me asleep, if my body has decided it doesn't want to. And most of them will cause insomnia themselves if not dosed correctly.

Possibly one of the more bizarre is Tramadol - 2 50mg tablets will work well for 2 nights, apart from waking me up like clockwork every 2 hours, with no trouble getting back to sleep. But use for longer than that, total inability to get to sleep. A single 100mg Tramadol, even after several months of not using Tramadol, instant insomnia.

 

Is there a way you can have your own comfy bed in a different room than your husband ? Ideally you should go to bed when you feel tired, before falling asleep on the couch. You need your own bed with no noise and disruptions.

It took me almost 3 years but I finally found a combo to help, on top of very strict sleep hygiene : I turn off all the lights everyday at 9 and put my pj’s on. Dogs go to bed and there is no noise in the house. I read on my tablet in the living room (night mode, no blue light) until I feel tired, at about 11pm or anytime between 9 and 11. Bedroom is strictly reserved for sex and sleep. Or sleep only in my case, lol!

I never look at the time during the night, my alarm clock is facing the other way so I can’t see it. If I wake up and can’t fall asleep again within 45 minutes, I go in the living room and do the night time routine described above. Nothing stimulating is allowed. Only quiet stuff.

There are 3 meds/supplements in take in alternance, as to not develop dependance : 3 mg melatonin, 25 mg benadryl and 2,5 mg sublinox (1/2 tablet of sublinox or zopiclone). With those, I manage to sleep 5-6 hours straight, wake up, go to the bathroom and fall asleep again. It took a really long time, almost 3 years as I said, but it worked for me.

I hope you find some relief.

 

Apparently it can block glutamate activity somewhat, from what I vaguely recall, in addition to using up glutamate by combining with it (and glycine) to form glutathione. It also acts as a mucolytic. It's been studied for up to a year at higher doses of 1800mg-2400mg per day in HIV patients, with no ill effects.

 

Oh god oh god oh god. I'm SO EFFING EXHAUSTED. Time for another whine. Thanks to you smashing people, I feel good about getting up with my insomnia, and going to lie on the couch. But still with the bloody night waking. I'm doing what I can - improving thyroid status, taking NAC. Can't nap for more than half an hour in the day, so I'm clearly not ruining my night's sleep that way.

ARRRGGHHHHHHHH! I took 5mg melatonin the other day to knock me out. Desperate. Woke up twice with my effing dry eyes. I've tried taping them closed, all kinds of eye-shades, and I use heavy ointment. Seeing eye doc in January for checkup. Dunno if he can offer anything new.

Beyond my eyes, I'm awake about 3 other times in a 7 hour stretch! No wonder my skull feels like it's cracking into pieces. I'm a zombie in bed all day - I get up for a couple of hours, but my head hurts so much I have to go back.

My loving Aunt is waiting for a reply to a How Are You? text, and I don't want to tell her just how shitty things are. I can't change the things she says are causing the problems.

Yes, I'm sure that my husband's ongoing depression and lack of employment is causing me lots of stress which is contributing to my sleep problems, but what the hell am I supposed to do - leave him? That would upset my teenagers, who'd need even MORE from me!

Things seem so simple to healthy people, who have healthy spouses, and independent kids. There isn't a bloody CURE for ME, or migraines, or LIFE! I have to tell her to stop trying to cure me.

 

@Squeezy, I really feel for you. Sleeplessness is the pits.
I notice you mention dry eyes. That immediately made me think Sjogrens syndrome. Have you been checked for this? Apologies if it's not relevant - I can't remember what you've said about your diagnosis before.
Best wishes, I hope you can get some better help.