Insomnia.

Hi @Squeezy only just spotted your thread. Insomnia is my biggest issue after having no energy. I’m mild/moderate level ME tending more to moderate recently. Although I can get out of the house to do stuff I can relate to a lot of what you’re experiencing. Sorry things are tough I hope you get some relief soon.


It seems like when my sleep is worse everything else follows. But also when I have been more active the tired but wired kicks in I’m “ok”once I get to sleep it is getting to sleep that is the main problem.
Amitryptiline from my GP really wasn’t helping and I I hated that it made me feel even more sluggish in the morning. Following advice from folks online I’ve very recently started taking melatonin which being in the U.K. is not from my GP. A friend got me some from a pharmacy in the US. I just take 1mg a night and it really is helping me get to sleep a lot earlier 1am ish rather than 4am. It’s an improvement because I can get up earlier if I need to do I would recommend anyone give it a try

but I’m not noticing any change in my energy. It’s only been a few weeks but wondering if maybe I’m expecting too much.
 
I use melatonin (private prescription). It's does help my sleep but I was advised only to use up to 3 weeks at a time or it'll stop working.

It does help me with sleep, in that I seem to sleep more deeply & maybe for a bit longer. I can't say the extra sleep makes me feel any better :(. I am severely affected though so It might make more of a difference for you :emoji_fingers_crossed:.

It is good to have something to turn to though ,when you otherwise feel you might just go insane at 3am.
 
NelliePledge said:
Also wondering if anyone has used CBD for insomnia as I’ve seen that can help. taking on board what you said @Invisible Woman maybe alternating between the two every few weeks might be a good long term approach
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Yeah. That's what I'm thinking.

For me the melatonin is helpful in nudging me back to some sort of a pattern, but if life throws a spanner in the works just as I've come off it then I'm scuppered.

For example I just came off melatonin before Christmas and then had friends phone me unexpectedly Christmas Day at about 9pm - that's just too late and stimulating for me. So I ended up awake in the early hours that next and the next etc., but had to wait before going back on melatonin.:(
 
Squeezy said:
Do you have severe ME?
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Yes, for many years. Since a downturn last summer I have been completely bedbound, marooned on a hospital bed at home, dependent on carers for even the most basic things, like being washed.

Something like having clean sheets is a major activity that will knock me out for several hours, even though I am only rolled over onto my side, and then over onto my other side (so that the sheets can be changed while I am still in the bed). I can use my hands, and move my arms to pick up small things that are within reach, like my mobile phone, but that's about it (but yay - internet access :)).

Squeezy said:
I cried buckets this morning from, as you say, the sheer daily grinding wear of it. It's gruelling!
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I hear you. Just hanging in takes everything, and then some. The ongoing physical strain is very draining. Never mind the cognitive strain, the isolation and the rest. Being this incapacitated seems so insane sometimes. There's a tv program where super-fit regular people are put through a version of special forces training, and I can't help feeling we'd give the SAS a run for their money when it comes to endurance. They don't know the half of it ;)

Squeezy said:
I sat outside in the fresh air, and... I enjoyed the sunlight through the leaves of the trees
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It sounds beautiful. I can't see much from where I am, but I can see a few feet of silver birch tree trunks through the window, and when the bark catches the sunlight it is amazing. I'm really glad you're able to get outside and enjoy the sunshine and trees :)
 
Indigophoton said:
. I can't see much from where I am, but I can see a few feet of silver birch tree trunks through the window, and when the bark catches the sunlight it is amazing.
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Hmmm....may be those of us lucky enough to have even a tiny view of something we like, or helps us to keep going could share them?

Not quite the view from my bed.... More the view from my bedroom/living room/room of choice for those who are able to access multiple rooms window type of thing?
 
Hello @Indigophoton @Invisible Woman and @NelliePledge ! I'm so sorry that I missed your messages on my thread this last week. I'm horrendously, torturously, sleep deprived and barely firing on any cylinders at all.

Melatonin - 0.3 is the physiological dose. I gave up taking it. I should restart. It can take a couple of months to have an effect, I read. No need to be cautious and stop and start it at this low dose, I don't think.

@NelliePledge CBD oil? I'll look it up. At the moment I'm fantasising about knockout pills - Ambien and Zopliclone etc. SO EFFING DESPERATE :cry::banghead:

Just ONE NIGHT! I've not asked my GP for something because of my dry eyes - gotta wake up and put ointment in. Can't be drugged and out cold so my eyes dry up and scratch.

BUT I GOT A SCRATCHED CORNEA EFFING ANYWAY! :cry::cry::cry::arghh::arghh:

I'm at my wits end. I can hardly nap either. I managed barely half an hour this morning.

I saw the eye doc a couple of weeks ago. He wants to plug my tear ducts. But I have to get to his office. In the late afternoon. When I'm incapable of anything but crying from exhaustion. I said, "I'll call today...see if he can fit me in." But I'm a dead body. Again.

Stuck in a vicious circle.
 
Indigophoton said:
I hear you. Just hanging in takes everything, and then some. The ongoing physical strain is very draining. Never mind the cognitive strain, the isolation and the rest. Being this incapacitated seems so insane sometime
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Indigophoton said:
we'd give the SAS a run for their money when it comes to endurance. They don't know the half of it ;)
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I totally agree! People who do these fitness things BY CHOICE haven't the faintest notion of what a true physical endurance challenge is! They can opt out when it gets to the limit they can bear. We can't. We're stuck.

I hope you improve and can get outside. Or just near the window? I'm worried that my ongoing lack of sleep will lower my ME level from housebound and often in bed, to truly bedbound.

Thanks so much for replying to me. I'm so sorry I didn't see your post sooner. :hug:

:heart: :heart_eyes:
 
Squeezy said:
I hope you improve and can get outside. Or just near the window?
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Thank you, I hope so too. This summer I'd love to be able to get the few metres to a bench in the garden that is long enough to lie down on. It seems unlikely as things stand (and there are complications, like needing an air mattress due to being very underweight, even if I could get there), but here's hoping:emoji_fingers_crossed: Even once would be amazing!

Squeezy said:
I'm worried that my ongoing lack of sleep will lower my ME level from housebound and often in bed, to truly bedbound.
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Sleep makes such a difference. I have zolpidem (ambien), and it helps a lot, although I still sleep badly. But less badly than without it :rolleyes:

You mention not wanting to take anything because of your dry eyes @Squeezy, but might it be worth a small dose on the odd night just to ensure a few hours of decent rest? Just a thought :heart:
 
I certainly think its worth trying most things to get a little kip but Ive learned the hard way not to be too optimistic.

Literally everything I have tried that's supposed to aid sleep wakes me up after a tiny window of very slight drowsiness. Ive tried herbal remedies, chamomile tea, old style antihistamines, SSRIs, NSRIs ( you know -the other one - is that the right acronym?), Amitriptyline, zopiclone.....

Best case they leave me wired but tired. Its when they add insult to injury and leave me like a poisoned zombie the entire next day.....

Someone even gave me diazepam at one point. Now, that one was good - it did nothing at all that I noticed, which was an improvement :rolleyes:
 
While this co-existing condition may be limited to a subset of ME/CFS patients (and insomniacs), I can report suffering from very bad insomnia that was driving my health downward when I was diagnosed with Sleep Apnea.

Between the initial APAP device (which helped at first, but was replaced due to emerging Central Apneas) and the subsequent ASV device, my insomnia has virtually disappeared.

My sleep quality, once horrid, is now variable. I've had truly refreshing night's sleep (something I wasn't sure would ever be possible) along with more typical "decent" sleep.

Insomnia has been almost eliminated.

Treating Sleep Apnea isn't a guaranteed cure for insomnia, nor is it the only cause. In my case, I think breaking the cycles of sleeplessness and eliminating a cause of sleep disruption is helping me re-set my sleep patterns.

We all know having rubbish sleep on top of ME/CFS makes life a lot harder.

From my experience, I'd recommend anyone who suspects they are having sleep disorders or potential sleep apnea to get a sleep study if possible.

Bill
 
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Indigophoton said:
but might it be worth a small dose on the odd night just to ensure a few hours of decent rest?
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I'm getting to the point where I might brave my GP. If she'll even give me Ambien or similar. I've been avoiding her. Thyroid med argument.

I love that hug! Thank you! :hug:

You are totally right - a bit of sleep makes a huge difference! I managed to have a nap today! An hour and a half I think. I feel more emotionally stable. ;)

As you're underweight, could someone carry you outside to lie on an airbed for a bit?

Invisible Woman said:
Literally everything I have tried that's supposed to aid sleep wakes me up after a tiny window of very slight drowsiness. Ive tried herbal remedies, chamomile tea, old style antihistamines, SSRIs, NSRIs ( you know -the other one - is that the right acronym?), Amitriptyline, zopiclone.....
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How aggravating to wake up with the pills! So sorry nothing helped. People have recommended CBTi. But too tired to get there. Obviously.

Invisible Woman said:
Best case they leave me wired but tired. Its when they add insult to injury and leave me like a poisoned zombie the entire next day.....
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Being zonked the next day after taking something might be worth it if it's less awful than my current state of hang over-jet lag crying though! Well, not today, after my successful nap. Relief.

But "Poisoned zombie". Nasty. Very.

SNRI, i think you mean. :)

Trazadone?
 
Squeezy said:
SNRI, i think you mean. :)
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Yeah. SNRI. Knew I had the right letters but couldn't remember the order :confused:

I can't remember which ones off hand. I heard about others getting great pain relief and improved sleep and so my consultant and I worked out a list of the best SSRIs SNRIs and tricyclic to try. We discovered that I am extremely sensitive to these drugs. In the end, even the consultant had to admit, some people are just different and react differently to commonly used drugs.

The poisoned zombie is very, very nasty. In my case it was just as unpleasant as no sleep, but different. I feel it was still worth giving the drugs a try though. I did find that if I tried something and it didn't work, I needed to wait a while (weeks at least) before trying something else. Otherwise my adverse reaction was even worse.

I find slow release melatonin (Cicadin in the UK) helpful. Not a cure, but helpful. I was advised to use it for no more than 3 weeks at a time and then take a break. I find it takes a couple of days before I feel the benefit. I have never noticed any type of hangover with it. I have also tried the over the counter melatonin available through health food places and it did literally nothing for me.

I hope you find something helpful soon!

:hug:
 
Squeezy said:
Hello @Bill. Thanks. I cant get in to see a sleep doctor till April at the earliest. My breathing is silent when i sleep, but who knows.i could stop without snoring. Im delighted you sleep well now :)

Please god by us all :hug:
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Thank you. It always me pause to mention something that might only apply to a small subset of people with ME/CFS.

Recently, I've had a run of nights on the lower end of decent sleep (after some astonishingly good sleep). I feel the difference in the expression of ME/CFS symptoms. More fatigue and a greater fear of bringing on PEM.

The lower end of decent sleep is still way better than insomnia. I hope you find an answer for better sleep.

Sleep Apnea may not be a factor with you, but if you have the coverage it is worth seeing a doctor and having a sleep study to see if there is anything to be done to get you better sleep.

I'll hold hopeful thoughts for you.

Bill
 
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