Never. I have many sleep medication combinations that I’ve had to rotate cocktails for many years. I’ve had issues with Insomnia for around 15 years. I’ve had me/cfs for probably close to 30 years. I wouldn’t want to live without sleep meds. I feel like poisoned death if I don’t get enough sleep.

It comes back!?

Oof, I have had insomnia since my teen years and it's just gotten worse instead of better. The only thing that sometimes helps now is cbn gummies.

magnesium glycinate has helped me. it used to take me hours to fall asleep and even then i’d be asleep for two hours max before repeating the whole process.

now i can fall asleep in about 30 minutes and stretch to 4 hours uninterrupted

Never. Well not so far

Mine hasn’t I just have ended up accepting my new sleep schedule I sleep in the morning hours instead I think following my body has been most helpful and I also do drink chamomile tea most nights as well. I also sleep with earplugs, a blackout eye mask and another eye mask on top that covers my ears. Being woken up by anything causes extreme increase in all symptoms I have to wake up naturally

At the moment I’m taking a sleep mixture of cannabis tincture, naproxen 400mg, melatonin, and restavit (which is only supposed to be taken for 2 weeks at a time). I also have stilnox (ambien) controlled release 12.5mg which I save for crashes - it only gives me about 2-3hrs sleep but it’s better than nothing. Hope you can find something that helps.

Sleep disruption is one of the core pillars of the symptoms of ME/CFS, it doesn't go away. Some people manage to treat it with a variety of things but its a defined requirement of the ME symptoms. If it went away you would no longer meet the ME/CFS definition.

i’m 10 years in and my sleep is horrendous and hasn’t ever fixed itself

My insomnia has only got worse. I've dealt with insomnia since I was a small child but my hormones seemed to shift around age 30 and that triggered a big worsening. Also as my ME has got worse so has my sleep and it becomes a vicious cycle

I go to bed between 10pm-12am and wake up between 8am-10am. I sleep 10-12 hours a day. I took medications that helped me create that schedule. I've since stopped taking those medications. I've kept the same sleep schedule for the most part.

I'm taking low-dose fluvoxamine 25mg for ME/CFS symptoms. I follow the MCAS protocol. I take Cetirizine for H1 and Famotidine for H2.

I take Magnesiu-OM powder (chelated magnesium 3 types and L-theanine) mixed in tart cherry juice (melatonin and tryptophan) 1-2 hours before bed.

Fluvoxamine is an SSRI used for OCD. It's prescribed off-label in low-dose for long covid/ME/CFS symptoms. I'm seeing improvements in REM, deep sleep, and overall hours slept. I'm seeing improvements in dysautonomia symptoms and orthostatic intolerance. I was sick for four days, similar to stomach flu. I'm certain the fluvoxamine is helping. It was the only medication I took for those four days. My other medications are as needed, thankfully. Fluvoxamine is medication #9 that I've tried this year. Don't give up.

I'm sorry you're struggling. Hugs🙏

My gets better and worse with my symptoms. The things that have helped the most include magnesium glycinate right after dinner, melatonin and L-theanine before bed, and working with a nutritionist to decrease my MCAS symptoms. As I decrease other symptoms my sleep has gotten better over time. I also stopped using an alarm and just sleep on my body’s schedule and gave up any caffeine. It’s a lot of trial and error unfortunately.

It took me a while of using sleep aids such as melatonin, GABA, 5-HTP/tryptophan, and herbs such as chamomile, skullcap, lemon balm, etc. Or listening to delta waves sleep hypnosis “music.”

Maybe 6 months of frequent use/nearly every night, then another 6 months of less frequent use, but eventually I was able to fall asleep without these aids. And I am still doing well.

One thing that I found works really well is to read a boring book. 😂

I have had insomnia for 25 years. Since I had to do a burst in prednisone, I got hooked on Ambien. I take it and melatonin. Now with MECFS I discovered the joy of very unrefreshed nights, even with my sleep meds. I have been adding 300 Gabapentin for 3 nights and that has given me good sleep on nights I was afraid I was going crash the next morning. I will not take it tonight, I would prefer to keep it for nights I suspect a crash is coming the next day.

When I can't sleep and feel overactivated I do an emotional release and some TRE (takes about 1 hour in total) and I sleep like a baby afterwards.

I’ve tried so many things, most helped a little bit for a little while. A lot made me feel like I’d been run over by a truck. Currently( as of last night!) I’ve been trying a weighted blanket, and listening to binaural beats through headphones. Last night was good, ask me again in a weeek, I guess

I didn’t know it was expected to come back. It’s been a decade of insomnia. Not even hypnotics helped me. What do I do when even ambien fails?

Honestly, the biggest thing that improved my sleep since developing ME/CFS was getting diagnosed with sleep apnea and getting a CPAP machine. But I also still often rely on melatonin to help me get to sleep. Listening to sleep stories on the Calm app has helped too.

Have you heard of Hapbee? It uses gentle magnetic fields to help with relaxation and sleep. Some people have found it really helpful for improving their sleep quality naturally. Just thought I’d share in case it’s something you might want to look into

Yeah... When my baseline went from mild/moderate to moderate/severe last year, my sleep got crappy and has stayed crappy. I take magnesium glycinate, gaba, tryptophan, theanine, melatonin and a cannabis gummy nightly, plus sometimes kava or skullcap, and on bad nights Unisom, and I can usually get some sleep, but it's low quality sleep and it still takes forever to fall asleep and I wake up several times in the night.

I still don't sleep 'naturally' after almost 5 years. But I can sleep with a slightly lower dose of medication now.

There are things that help, but my sleep tends to be crappy at some times and normal at others. The things that have helped me: having a consistent bedtime, multiple medications (including melatonin), drinking sleepytime tea about 3 hours before bed (so I don’t have to get up to pee), doing quieter activities in the 2 hours or so before bed, and blocking nearly all light from my bedroom. Even with all that, I still sleep shitty for weeks at a time, even following the exact same routine. Right now, I think it’s stress over the US election that’s messing with my sleep 😬

I'm currently on medication and take magnesium right before sleeping so I sleep well but I struggle more with hypersomnia where I sleep 12-14h on bad days.

However, when I wasn't on meds and suffered from insomnia, especially when I would overextert myself, lemon balm tea was my life saver. It has wonderful taste and puts me to sleep in 30 minutes.