Severe Insomnia - 3 years - Mushrooms? Ketamine?

[heapsreal]

Thanks for this. I have been worrying about the Zopiclone but we have tried so hard not to do pharmaceuticals (and tried many other things) and if it wasn't for the Zopiclone I hate to imagine where we might be. It would be good to have a few alternatives though.

I look at it like this, cfsme is a chronic and probably life long condition. Insomnia is one of the big symptoms as something in the sleep centre of the brain is broken. For those people sleep meds are like someone taking BP meds for hypertension. Sleep meds have helped me keep my head above water. Living off 2 or 3hrs of crappy sleep a night is just bloody terrible. There's a reason they use sleep restriction as a torcher.

I think the Z drugs like zopiclone, zolpidem are the most helpful to help you fall asleep. If insomnia is really bad seroquel can also help with sleep. I use several different meds and alternate them alot to try and avoid tolerance. Melatonin can be helpful in helping to keep a normal body clock plus its a strong antioxidant for the brain. But I can't say it helps alot with actual sleep. I use it because if I don't my body clock gets out of whack and I end up having a beds time of 5am and wake up at 10am etc. Injunction with sleep meds, melatonin can help one keep a normal circadian rhythm.

It's hard to find a Dr that will help with these things.

 

[Mary]

he can sleep for a while until his brain makes sense of it and then it is back to being 'switched on'. I realise that this is just me creating some narrative to try to make sense of what is going on and, likely, this is not at all what is actually happening.

I think we develop a tolerance pretty quickly for things that help with sleep and that our body's goal is to return to what it seems to think is normal, not sleeping or not sleeping well. I develop a tolerance pretty quickly to almost everything that helps me with sleep so I try to keep different tools in my sleep tool box. I think this is one of the cruelest illnesses - not only does it destroy our days, but our nights too . . .

Anyways, here are some things that have helped me with sleep. Also - it seems to me that in general I don't develop a tolerance to amino acids or vitamins. It's mainly herbs and antihistamines which do cause this.

Niacin (the kind that makes you flush) - I discovered maybe 15 years ago that this helps with sleep onset. It helped my sister too, who does not have ME/CFS. I take it every night and don't develop a tolerance. It can cause a flushing reaction which I tolerate because when the flush subsides, I generally feel more relaxed and its easier to fall asleep. I take 500 mg. before bed and 200 mg. more middle of the night. I don't recommend you start with this dose - we're all different. I'd try 50 or 100 mg to start with and see how he does.

Inositol - I take 1 or 2 grams before bed, more middle of the night. This article talks about safely taking much higher doses: https://www.healthline.com/nutrition/inositol#dosage

5-htp - I take 100 mg. before bed

l-theanine - I think this helps a little - I take maybe 200 - 400 before bed, more middle of the night

melatonin - 10 mg. before bed

generic for Unisom (doxylamine succinate) - this is an old, but powerful antihistamine. When I first started taking it, 1/4 tab would put me to sleep. And I really don't feel bad the next day. Unfortunately tolerance develops rather quickly but I can usually take it for about 10 days before I have to switch off. I highly recommend it. I hated benadryl, it made me feel crappy the next day and didn't help much with sleep.

wild lettuce - herb which can help for awhile, and then stops

Shui de an - again, temporary help https://www.modernherbshop.com/For_Insomnia_and_Anxiety_Relief_p/shuideancapsules.htm

Seriphos (phosphorylated serine) - this works well to reduce high cortisol in the middle of the night. I would not take it without an adrenal stress index test, which will show if he has nighttime cortisol, which can cause severe insomnia. At one time I had to take 8 capsules (a very high dose) for middle of the night insomnia. But most people I hear from react quite a bit with only 1 or 2 caps. We're all different. Morning seems to be the best time to take it. And you can do the adrenal stress index test at home - google it.

CBD with THC - California lets you get the "real" THC, but am in Texas now which has variants - Delta 8 and 9. Supposed chemically they're the same, I don't know, I don't care. Again, develop tolerance quickly.

California poppy - can calm down one's system. Herbpharm makes a good tincture but unfortunately I needed a lot and so it got expensive pretty quickly.

Also, if I eat anything MSG-related at night for dinner, it will cause severe insomnia. So for dinner I have to basically avoid all processed foods including mayonnaise and mustard (depending on ingredients). I react to almost everything on this list: https://www.truthinlabeling.org/names.html

magnesium/calcium ratio imbalances can cause insomnia - I've had it go both ways, too much calcium and too little . . . hair analysis has helped me out here.

Check all his meds (I'm sure you've probably done this already) for "side" effects such as insomnia. I've found I have to read the very fine print on drug package inserts

This thread (all about sleep) might have some helpful tips for you: https://forums.phoenixrising.me/threads/what-has-helped-you-with-sleep-insomnia-post-links.78501/

Also - I'm hypothyroid, and occasionally I seem to have flipped - become a bit hyper and when that happens, nothing will touch my insomnia until I quiet my thyroid down. I have cut my thyroid med doses over the years, with testing, and actually I need to get re-tested now. I've found HerbPharm Thyroid Calming tincture can help with calming over-active thyroid:

It's more money of course - I've spent a small fortune on trying to sleep!

I hope this helps some! If I were to try one thing, I'd start with the Unisom (or generic), it might give some immediate relief. Then I'd try a bit of niacin and see what happens, and then inositol -

 

[Hannah1]

I think the Z drugs like zopiclone, zolpidem are the most helpful to help you fall asleep. If insomnia is really bad seroquel can also help with sleep.

Do you have any insights on Suvorexant? I read that it can help reduce the build-up of damaging proteins in the brain and could offer a better quality of sleep?

 

[heapsreal]

Do you have any insights on Suvorexant? I read that it can help reduce the build-up of damaging proteins in the brain and could offer a better quality of sleep?

I don't know about damaging proteins in the brain but I'd guess and say the damaging proteins probably happens to anyone who doesn't get enough sleep??

I have used suvorexant. This is my experience but I think it's definitely worth trying. I found it didn't have enough punch to help me fall asleep and needed a z drug to help me fall asleep. I did sleep deeper but woke up quite groggy for most of the day.

I'm keen to experiment with it again and try a lower dose with a z drug. But definitely worth a try and might have to experiment with lower doses if next day grogginess is a concern.

It probably could help someone who is on a higher dose of benzo/z drug to cut their dose back and add an orexin antagonist. Even if someone did this for a couple of months, it might help reduce benzo tolerance????

 

[heapsreal]

Seriphos (phosphorylated serine) - this works well to reduce high cortisol in the middle of the night. I would not take it without an adrenal stress index test, which will show if he has nighttime cortisol, which can cause severe insomnia. At one time I had to take 8 capsules (a very high dose) for middle of the night insomnia. But most people I hear from react quite a bit with only 1 or 2 caps. We're all different. Morning seems to be the best time to take it. And you can do the adrenal stress index test at home - google it.

Phosphatidyl series is definitely helpful for high night time cortisol. In the past I used 500mg, it definitely helps even though I took sleep meds with it.
I think if someone has a bad circadian rhythm and melatonin isn't helping, adding PS can help.

 

[Hannah1]

I have used suvorexant. This is my experience but I think it's definitely worth trying.

I just realised none of these newer drugs are available in our country

 

[Mary]

Phosphatidyl series is definitely helpful for high night time cortisol. In the past I used 500mg, it definitely helps even though I took sleep meds with it.
I think if someone has a bad circadian rhythm and melatonin isn't helping, adding PS can help.

Seriphos, which is phosphorylated serine, is different than phosphatidyl serine. The names are confusingly similar and they are used for similar purposes. And they can both be called "PS". But I remember reading several years ago that Seriphos was more effective than phosphatidyl serine for insomnia and reducing high cortisol.

But I've read phosphatidyl serine can be helpful too - I've never done a comparison, sticking with Seriphos because it worked so well for me.

 

[Florida Guy]

@Mary, you take seriphos in the morning to help sleep at night? That seems counter intuitive but its not making you sleepy directly, it works indirectly from what you say. So that may explain it

That is quite a list you have, I thought I had quite a list. As for thc, delta 9 is the normal variety, delta 8 is the synthetic variety. I have found d9 to be far superior and does not give tolerance as fast as d8. Have you ever tried thc without cbd? I find the cbd reduces the sleepy effect of the thc when I take them together. CBD by itself does little for me, its slightly relaxing and thats about it.

@Hannah Gower if those drugs aren't available locally, you can always order them overseas. From my experience and from what I hear, it almost always gets through even if its prohibited. Here is hip's list of reliable pharmacies https://forums.phoenixrising.me/threads/list-of-reliable-prescription-free-online-pharmacies.8113/

In general, I advise against using antihistamines for sleep. They give tolerance rapidly and according to medical studies, use of antihistamines increases the risk of alzheimers and other forms of dementia. There are many types of antihistamines and a drug that has a small antihistamine effect might not be dangerous. Anyway, we all calculate risk vs reward and try to do the right thing

It seems like its turning off the thoughts, that is the problem. Instead of dreaming, I'm thinking about something.

 

[Mary]

you take seriphos in the morning to help sleep at night? That seems counter intuitive but its not making you sleepy directly, it works indirectly from what you say. So that may explain it

Hi @Florida Guy - yep, I take it in the morning. When it was first recommended to me some 20 years ago, I was told to take it at night before bed, so I did. And had a horrible night with a strange insomnia, hard to describe. I then found something put out by the manufacturer that explained that it was best taken in the morning. And it really worked really well for me that way. I did feel calmer, but not sleepy, during the day, and it helped me go back to sleep middle of the night, which is usually my worst time.

I have found d9 to be far superior and does not give tolerance as fast as d8. Have you ever tried thc without cbd? I find the cbd reduces the sleepy effect of the thc when I take them together. CBD by itself does little for me, its slightly relaxing and thats about it.

Thank you, I didn't realize that about the tolerance differences between delta 8 and delta 9. And I've never tried the THC on its own, I think I was a little afraid to . . . anyways, it sounds like it's definitely worth a try!

In general, I advise against using antihistamines for sleep. They give tolerance rapidly and according to medical studies, use of antihistamines increases the risk of alzheimers and other forms of dementia.

I know they're not ideal, but going without sleep must be quite damaging as well. Anyways, you're right - we have to calculate risk vs. reward. I wish there were effective sleep meds which did not cause addiction or tolerance or "complex sleep behaviors" (this means doing things like driving or cooking, etc. while "sleeping" - this has got to be one of the most creative euphemisms concocted by a marketing department!)

 

[Florida Guy]

I know they're not ideal, but going without sleep must be quite damaging as well.

Yes, I take some stuff that is a little iffy but the alternative of not sleeping is simply not acceptable. If thc didn't give tolerance I would use it every day but everything seems to give tolerance. Trying new things is a little risky too because if it doesn't work, then I have a sleepless night or have to get up and take some etizolam which always works.

As for tolerance with thc, there is a substance called cbn which makes you sleepy especially when used with thc. They both come from the same plant. I take about 1/3 the milligrams of thc in the form of cbn. I only use it in the form of an edible, smoking does not seem to work and vaping is less useful for me. I get the syringe of concentrate and put some on a cookie and eat it, then swallow some cbn. Some concentrates have to be heated in order to be used so ask about that but with the syringe you can eat it without heat

 

[Pearshaped]

sorry didnt read it through but very familiar with insomnia so here what helps me: Glycine powder (good quality) at least 1gram (try more) and Taurin powder (more helps me more but makes my bladder added to my sleeping pills as well as a about 300mg magnesium citrate.
Oddly enough, mag glycinate doesnt help me compared to the normal glycine and the mag citrate.

if not tried yet, low dose Benadryl as an add on to your sleeping pills ?

My 19-year-old son has had M.E./ CFS since getting Glandular Fever 3 and a half years ago. He is housebound and socially isolated other than close family but his worst symptom is insomnia. He takes Zopiclone to sleep most nights and only occasionally manages to sleep without it - albeit latent, restless, disrupted sleep. He does a lot of meditation and breath work, doesn't nap during the day, follows all the sleep hygiene protocols - sunlight in the morning etc., and does NLP exercises to help calm and maintain a positive outlook.
With the meditation and NLP, there have been improvements in his daytime slightly 'wired' feeling - he mostly feels calm, but hardly ever feels sleepy.
It is like his brain never gets the signal to sleep.
The interesting thing is we have tried various alternative treatments and supplements and sometimes they work for a time but within a few days to a week the insomnia returns.
The latest thing we are trying is Mestinon/ Pyridostigmine. This was prescribed to him by a specialist because he gets venous pooling in his feet. The medication did make him feel calmer during the day and after taking it for a week or so he did start to sleep at night. For almost a whole week he slept well without sleeping tablets and then the insomnia started to return.
This seems to be the pattern and makes it seem as though new treatments work by distracting his 'brain'. Consequently, he can sleep for a while until his brain makes sense of it and then it is back to being 'switched on'. I realise that this is just me creating some narrative to try to make sense of what is going on and, likely, this is not at all what is actually happening.

We wonder if he is in some sort of perpetual flight or fight state, however, my sense is that it is more complex and nuanced than this. Despite this, we wonder if Ketamine of psilocybin mushrooms might help in some way. Ketamine because it can help with the fight-flight thing and psilocybin because it can assist with brain plasticity. Neither of these things are easily available in the country where we live.

I understand that M.E. comes in many different forms, however, is it true that there are two distinct groups? Those that 'sleep' a lot and often dose, and those that simply never feel tired and just get progressively more wired until they need pharmaceuticals to help. If this is the case it would seem that these are quite different symptoms or very different manifestations. I have tried to read all the science but somehow I can never retain or adequately comprehend.
Anyway, I would appreciate any clues anyone may have.
p.s. we have tried low-dose anti-depressants - amitriptyline and mirtazapine but my son couldn't handle the feeling these gave him and they didn't seem to help much with sleep.

I beg you to add Glycine (powder, you can take 1-3 grams) to his sleep meds and also Taurine (powder) and Magnesium glycinate or citrate.
This mix helps me a lot, though not speeping like a healthy person, it is definetely worth a try and I tell everyone who has sleep issues to try it bec it both (Glycine and Taurine) calms the brain.

Also, he could try a low dose benadryl as an addition or like me, I take mirtazapine as an enhancer to my sleeping pill.
Many of us need enhancers to the sleeping pill bec alone it doesnt work enough.
Also, he might need another med as Zopiclone… Many here, including me, have this problem with „fight or flight“= to much adrenaline.
Every Benzodiazepine helps for „flight or fight“ problems thats why I think Ativan could be better for him than Zopiclone. Hope this helps.
All the best.

 

[perchance dreamer]

We are all so different. Taurine and magnesium citrate give me insomnia. Magnesium forms that help my sleep are lactate, glycinate, and baths with either sulfate or chloride forms of magnesium salts. In my experience, it takes a lot of experimenting to improve sleep, and things that help other people might not help you, and vice versa.

 

[Mary]

I beg you to add Glycine (powder, you can take 1-3 grams) to his sleep meds and also Taurine (powder) and Magnesium glycinate or citrate.

@Pearshaped , I agree with you about the glycine, it can be quite helpful! (I forgot to include it in my list above, have been taking it for several years)

About taurine - I think it can go both ways. It helped me for awhile, and then started doing the opposite. Now I take it in the morning.

I agree about magnesium glycinate, I do well with that. But magnesium citrate - anything with "citrate" - gives me insomnia. See this list of msg-related additives, including citrate, almost all of which give me insomnia: https://www.truthinlabeling.org/names.html

@Florida Guy - one more thing to consider adding to one's stack is n-acetyl-glucosamine. I got the idea to take it from this thread by @Hip and it does seem to help calm my brain down.

Also earthing or grounding can help, if one is able to do this. I have tried a few earthing mats which didn't seem to do anything but when I was able to have my feet literally in touch with the ground (cement) for at least an hour a day (2 hours was better), it noticeably helped. But I can't do it where I live now due to pesticides etc. And I know doing this is beyond many members' capability. I have a small portable PEMF device which I can't decide if it's helping or not, but it's not too awfully expensive ($248) and I use it about 4 times a day on the earthing program (30 mins each time) Resona Vibe

One final thing (it gets exhausting [and expensive!] trying to sleep!!) - the pose in this thread can be helpful, usually I will notice a difference after doing it for about 7 - 10 days, though eventually I think it stimulates my thyroid so will need to back off. And again, I know this like earthing or grounding is beyond many members' capabilities.

 

[Mary]

One more last thing - I've found that laying down with my hands over my solar plexus is very calming. It doesn't put me to sleep unfortunately, but does help relax me, and can be done I think by anyone. The longer you do it of course the calmer you get. I discovered this by accident many years ago. So even if I'm too messed up to meditate (too tired, sick, crashed or otherwise unwell), I can at least do this.

 

[Hannah1]

Thanks for all your suggestions. We have a few new things to try now. I also hear trazodone come up a lot in the literature. I wonder how this compares with mirtazapine?

 

[Wayne]

mirtazapine

I would suggest that whatever drug someone is considering, that they do some thorough research on potential "side effects". Tinnitus is common side effect of many drugs, and so I'd suggest when considering a drug, do a search something like, "mirtazapine tinnitus". Many people on tinnitustalk have reported getting or exacerbating tinnitus from taking drugs, including most antidepressants.

 

[Florida Guy]

Mirtazapine will make you sleep but its low quality sleep. Trazadone never worked for me, I've taken 2 on occasion and felt nothing. Highest quality sleep seems to come with thc though I can't use it every night due to tolerance building up. Anther thing that gives low quality not so refreshing sleep is seroquel. I've had tinnitus for decades and started mirt just maybe 8 or 10 years ago and it has not worsened the tinnitus but I don't like taking it.

 

[Hannah1]

Highest quality sleep seems to come with thc

Thanks. My son has tried CBD with THC for a decent period of time but it had no effect on his sleep. He has it very bad. Without Zopiclone he can go days on end without sleeping - not even napping in the day (Melatonin and anti-histamines also do nothing). Unfortunately, the Zopiclone does not provide quality sleep at all. He's decided to give Mirtazapine a go until we can source something else and perhaps some other things that we have yet to try

 

[starlily88]

Long long ago - the top CFS drs which were few - did papers on CFS/ME's inability to fall asleep, and inability to stay asleep - the circadian rhythm in brain no longer functioned. They all agreed that this was very important to treat, since lack of sleep got most CFS patients so much worse.
They all published taking small dose of Sinequan (Doxepin) and small dose of Klonopin, one got you to sleep, other kept you asleep.
My Dr called CFS Dr in San Francisco - got his advice, put me on this - but made me do "drug holidays" every 3 months - so I never got used to meds.
It worked great - I did get to sleep 12 hrs a day without getting up, without this I had no ability to sleep.
Stopping the meds for drug holiday helped me not get used to them.
When my Dr retired I went to Neurologist that did sleep disorders/migraines. She used Muscle relaxers on me - which was too much for me - because it's too strong.
Unfortunately without using some of them I have no ability to sleep - trying to wean off them now.

 

[heapsreal]

Thanks for all your suggestions. We have a few new things to try now. I also hear trazodone come up a lot in the literature. I wonder how this compares with mirtazapine?

The things I'd watch out for with mirtazapine is a hangover from it and it can cause significant rapid weight gain, if used intermittently may help avoid weight gain.