What has helped you with sleep/insomnia - post links

[Violeta]

I've found at different times and seasons, different things will help. For a while last summer, some orange juice and cheese helped me fall asleep. Alka seltzer doesn't always work, but this week it is. I just bought some manuka honey and am going to try that tonight. I haven't tried 500mg of sodium, but I have tried a couple of chunks of Himalayan pink salt. It might have helped a few times, can't remember now. Sometimes coffee with cream, little bit of sweetener, some MCT oil along with some CBD oil helps.

 

[GreenMachineX]

I've found at different times and seasons, different things will help. For a while last summer, some orange juice and cheese helped me fall asleep. Alka seltzer doesn't always work, but this week it is. I just bought some manuka honey and am going to try that tonight. I haven't tried 500mg of sodium, but I have tried a couple of chunks of Himalayan pink salt. It might have helped a few times, can't remember now. Sometimes coffee with cream, little bit of sweetener, some MCT oil along with some CBD oil helps.

I just ordered some cbd too. But I'm now starting to suspect I'm dealing with methylfolate and methyl b12 stuff. That might be causing my insomnia since it has in the past.

 

[Violeta]

I just ordered some cbd too. But I'm now starting to suspect I'm dealing with methylfolate and methyl b12 stuff. That might be causing my insomnia since it has in the past.

Do you think you need some folate and B12, or are you taking them and you think they might be causing a problem?

 

[GreenMachineX]

Do you think you need some folate and B12, or are you taking them and you think they might be causing a problem?

Both actually. A few years ago, I went through some issues basically taking the methyl B's in the wrong ratio (methyl-trap) and caused a whole bunch of unpleasant symptoms and realized today, they're all the same...at least, I hope. It was a pain to figure it out last time, but I think I know what to do this time. Well see. Can't quite recall how long it took to correct though.

 

[t27r]

went through some issues basically taking the methyl B's in the wrong ratio (methyl-trap) and caused a whole bunch of unpleasant symptoms

What is the wrong ratio? What have you concluded is the right ratio? I’ve also done a lot of work with my methylation cycle. Of note, lithium helped improve B9 uptake, but I need to see how this plays out long term.


TMG has helped me nap and de-stress.

Iodine has helped me nap.

B5 has helped me nap and sometimes get back to sleep or maybe sleep through the night.

I’m still getting to the core of my 3am insomnia, but sometimes a good nap can selvage the day.

MTHF and 5HTP sometimes help me get good sleep or get back to sleep.

GABA/theanine/valerian sometimes helps me get sleepy after waking up.

Most notably, tyrosine/DLPA (dopamine) distinctly can return me to sleep when it feels like my brain wants to sleep, but is “surfing” or grazing sleepiness and can’t quite immerse into sleep. B5 sometimes also resolves this phenomenon.

I came up with a gearbox metaphor for sleep: GABA is doing the shifting between brain states, and dopamine is the reverse gear AKA sleep. I suppose serotonin also does some shifting. Acetylcholine is basically Park? Not a perfect metaphor, but the GABA-shifiting and dopamine-sleeping is very noticeable in my case. I learned that melatonin is more about circadian rhythm than actual sleepiness (which may be serotonin’s role), so melatonin is basically just telling the brain when to start reversing into the garage for the night.

Stasha Goninak’s work is also worth looking into. She focuses on vitamin D, B5, and B-complex, which may be too simplistic for those of us who are here but it seems to help a lot of people. She has some amazingly insightful interviews, and a workbook for anyone wanting to try her protocol. (Ive experimented with all these individual factors but not followed her protocol myself. Though I do want to get my D a little higher.)

5) Putting white noise on and wearing earplugs so outside noises don't wake me up.

I had this really bad, wearing ear plugs for nine+ years and hating the world whenever a dog barked or car was too loud. I’m trying to remember what resolved it! I think it was dopamine support: DLPA and tyrosine. If not that it was acetylcholine support (ParaSym, huperzine, galantamine). GABA/valerian/theanine may also have helped sometimes, along with B5. I think it was dopamine though as that’s had the largest impact in my life, while the other factors faded away. Now, aside from my 3am jolt, I can usually sleep through, or fall back to sleep from, a disturbance.

To be honest, your whole post/approach makes me think of finicky/deficient neurotransmitters. Maybe low GABA and low serotonin?

bravermantest.com is a nifty questionnaire for gauging neurotransmitters (search the webpage for insomnia too), and the book Mood Cure also offers neurotransmitter quizzes that can be found in the book or on the author

 

[GreenMachineX]

What is the wrong ratio? What have you concluded is the right ratio? I’ve also done a lot of work with my methylation cycle. Of note, lithium helped improve B9 uptake, but I need to see how this plays out long term.


TMG has helped me nap and de-stress.

Iodine has helped me nap.

B5 has helped me nap and sometimes get back to sleep or maybe sleep through the night.

I’m still getting to the core of my 3am insomnia, but sometimes a good nap can selvage the day.

MTHF and 5HTP sometimes help me get good sleep or get back to sleep.

GABA/theanine/valerian sometimes helps me get sleepy after waking up.

Most notably, tyrosine/DLPA (dopamine) distinctly can return me to sleep when it feels like my brain wants to sleep, but is “surfing” or grazing sleepiness and can’t quite immerse into sleep. B5 sometimes also resolves this phenomenon.

I came up with a gearbox metaphor for sleep: GABA is doing the shifting between brain states, and dopamine is the reverse gear AKA sleep. I suppose serotonin also does some shifting. Acetylcholine is basically Park? Not a perfect metaphor, but the GABA-shifiting and dopamine-sleeping is very noticeable in my case. I learned that melatonin is more about circadian rhythm than actual sleepiness (which may be serotonin’s role), so melatonin is basically just telling the brain when to start reversing into the garage for the night.

Stasha Goninak’s work is also worth looking into. She focuses on vitamin D, B5, and B-complex, which may be too simplistic for those of us who are here but it seems to help a lot of people. She has some amazingly insightful interviews, and a workbook for anyone wanting to try her protocol. (Ive experimented with all these individual factors but not followed her protocol myself. Though I do want to get my D a little higher.)




I had this really bad, wearing ear plugs for nine+ years and hating the world whenever a dog barked or car was too loud. I’m trying to remember what resolved it! I think it was dopamine support: DLPA and tyrosine. If not that it was acetylcholine support (ParaSym, huperzine, galantamine). GABA/valerian/theanine may also have helped sometimes, along with B5. I think it was dopamine though as that’s had the largest impact in my life, while the other factors faded away. Now, aside from my 3am jolt, I can usually sleep through, or fall back to sleep from, a disturbance.

To be honest, your whole post/approach makes me think of finicky/deficient neurotransmitters. Maybe low GABA and low serotonin?

bravermantest.com is a nifty questionnaire for gauging neurotransmitters (search the webpage for insomnia too), and the book Mood Cure also offers neurotransmitter quizzes that can be found in the book or on the author

The wrong ratio for me seems to be a seesaw of increasing b12, then needing more folate, then more b12...etc. I haven't found the right amounts of either yet, but I just know I'm mildly functional with what I'm doing now. I'll have to keep at it though and keep niacin, lemon balm and theanine handy at all times.

 

[SWAlexander]

Having LC and ME/CFS, vWF, Petechien, low cortisol and hypoglycemia plus Antiphospholipid syndrome and more, I have tried prescriptions and nearly everything over the counter. Nothing worked until, back in May 21, my friend told me to try antihistamines. Unfortunately she said, antihistamines keep some people awake. But it worked for me. Now I sleep between 7-8 hours a night.
Not sure Cetirizine-ADGC is available in the USA.

 

[SpiralOut]

For me it's 30mg mirtazapine plus 50mg diphenhydramine.
I'm aware of the dangers of anticholinergics but it's my hope that the 'cholinergics' I take (citicoline, ALCAR) mitigate things in that regard.
This combo works a bit too well so I sleep for 12 hours (fragmented and unrefreshingly, but on balance the lesser of the evils). However if I cut the dosages at all then insomnia reasserts itself.
Also due to very long elimination half lives the daytime grogginess is quite extreme. But I find that 600mg of adrafinil counters that nicely.

 

[Annie59]

I have DSPS (delayed sleep phase) which is not technically insomnia.

But sometimes I do get an exaggerated DSPS effect which definitely feels like insomnia. In which case coffee has a paradoxical effect on me (makes no scientific sense!)
I would not recommend that for everyone however.

I can't yet find a link to support that. I can't find links to support 90% of what happens to me

Hi Wolfcub, I too have this and take half a Stilnox but only when I really have to. Some night when I have a free day after I might try coffee! You are right, makes no sense - sounds silly even! But many things about this disease don't make sense.

 

[christiankatz]

Raw honey about 2 teaspoons

I never, ever thought it would work, as I'm a hardcore insomniac, but it works. And it worked more than one night, as I instantly build up tolerance and can't take anything two nights in a row.

 

[SpiralOut]

For me it's 30mg mirtazapine plus 50mg diphenhydramine.

I just wanted to bump this because today I feel like I made an important realisation:
I had to get up relatively early after 'only' 8 hours sleep, and I'm in a bad way because of it. But the penny just dropped...
What I've been thinking of as an unwelcome 'side-effect' (sleeping 12-14 hours) of the above meds is in actual fact a very good thing! It's like taking a high dose of a not very bioavailable substance - B12 for example. Eventually you get a reasonable effective dose... and that's what is happening with my/our sleep. It's basically unrefreshing, but the more you get, the closer you get to an amount that at least isn't worsening symptoms.

My point is simply: If as many of us do, you have the 'pretext' of depression, I recommend you give mirtazapine a try. It's my experience that one's day-to-day baseline state is strongly affected by the lack of, and unrefreshing nature of sleep. And finding a way to 'oversleep' could really help.

(There is of course no free lunch, and there are long-term concerns over taking anticholinergics. I think it might be the lesser of the evils, but you have to make your own mind up. Also as I do you could take pro-cholinergic substances.)

 

[SpiralOut]

https://pubmed.ncbi.nlm.nih.gov/22860241/

"Eight studies used detailed measures of sleep and consistently reported that mirtazapine produced significant improvement in sleep efficiency, total sleep time, and sleep quality."

 

[Wishful]

It's my experience that one's day-to-day baseline state is strongly affected by the lack of, and unrefreshing nature of sleep.

My experience is that my symptoms don't correlate with sleep duration. I've had plenty of short nights (insomnia) and some sleeps of 10+ hours, and neither had a noticeable effect on my ME symptoms.


While I'm posting, I'll also mention that elsewhere I posted about Evening Primrose Oil increasing my ability to sleep longer than 90 minutes before waking. I've recently found that safflower oil is just as effective. I'm pretty sure that it's the cis-linoleic acid. Ruminant fat also worked, and it has the cis isomer as one or more of the triglyceride components. I'm just guessing that it's working via changing cell (or exosome) membrane structure.

 

[Wayne]

https://pubmed.ncbi.nlm.nih.gov/22860241/

"Eight studies used detailed measures of sleep and consistently reported that mirtazapine produced significant improvement in sleep efficiency, total sleep time, and sleep quality."

Hi @SpiralOut -- The thing about these pubmed publications is they rarely give a person insight into some of the potential side effects of the drugs they mention. In the case of mirtazapine, I've seen several accounts on a tinnitus forum of people people getting tinnitus from taking this drug. Everybody's range of experience is different, from having no tinnitus at all, to developing severe debilitating tinnitus. -- Best...

 

[sb4]

I took mirtazapine for years, recently quit. Initially the sleep effects where quite good but after the body gets used to the antihistamine effect its not so good. One of the main reasons I quit was the constant adrenaline fueled nightmares mirtazapine gave me. I only realized it was the Mirt responsible last year.

I think it is because mirtazapine increases adrenaline release and I was taking it at bed time. So that is something to look out for. Taking it in the morning instead just resulted in needing a morning nap very soon after getting up and also feeling groggy.

 

[lenora]

Hello Everyone.....Wow! I could probably write a book on this subject (and no, it would not be a best seller!), but I've simply had to learn to live with this lack of sleep.

Interesting about the antihistamine effect wearing off. I've been coughing non-stop for the past 18 hrs. or so....I mean really coughing and 4 Ny-Quil have not stopped the symptoms. Ears stuffed up, just a general mess &, once again, no decent sleep to speak of.

I don't use antihistamines for sleep because, as pointed out, they tend to wax and wane and then you're left with nothing for ongoing allergies, colds, etc. last night was the first such very strange reaction that I've had....not hyper, not sleepy.....just coughing non-stop It's still going on!

In the past 30+ years I don't believe there is anything that my neurologist hasn't tried on me, including the date rape drug. Absolutely nothing, I was Miss Bright Eyes all night long (this was thought at one time to be of use to hardcore insomniacs.....no luck!_ So basically I seldom try anything any longer and can go days upon days with no sleep, but there is a physical cause in my case & it has a diagnosis....which really does make anything better, but at least I know the cause.

Honey: Thanks for the tip (first heard from @christiankatz) but it doesn't seem to have worked either. Although I should try it for this constant coughing....may coat the throat or something. Mix & match, that's what we do and pass on tips to others. Thanks everyone, you've been a great help. I wish I could give you some good advice in return. Yours, Lenora.

 

[perchance dreamer]

I wish I had known years ago that I have obstructive sleep apnea. I'm not at all overweight, and I don't snore, so I didn't suspect apnea. I spent so much time and money tackling my sleep problem, but was just spinning my wheels because of this basic fact: If you don't breathe well, you don't sleep well.

That's not to say there aren't many other kinds of sleep problems, but if you do have apnea, you need to address it in addition to whatever the other problems are.

I think anyone who has a sleep problem should go to a good ear/nose/throat doctor to have their breathing evaluated. They can order home sleep tests and refer you to a sleep doctor if you have something like central apnea or other types of sleep disorders.

 

[Wishful]

I'm surprised that there isn't a simple home test for sleep apnea yet. The fancy equipment for monitoring oxygen levels and whatever else will give the data required for a proper medical diagnosis and risk potential and treatment, but surely something like monitoring sound, perhaps via a tiny stick-on bluetooth microphone would provide a simple yes/no result of reasonable reliability. A simple phone app that records interruptions in breathing sounds might be enough.

 

[Jyoti]

I recently came upon what I think is a new application of sleep-inducing stuff: herbs, minerals, etc. Like so many of us, I have been taking my own personal recipe of these for years, two of this pill, then one of that, a couple of droppers of this and a tab of that.

It all worked ok to get me to sleep (for which my gratitude often knew no bounds), but inevitably I was awake by 2am and very frequently never to sleep again that night. In other words, soundly knocked out at 9 (on the good nights) but all the stuff wears off and my SNS roaring back by early morning.

This new thing is a patch. This method may have been used for sleep in the past, but I certainly have never encountered it before. It is a time-release patch which includes many of the items in my 'recipe': magnesium, potassium, zinc, melatonin, 5-HTP, Ashawaganda, chamomile flower extract, passion flower, valerian, hops, l-theanine.

I haven't been able to eliminate all of my other supports for sleep--I am still using THC in addition, but 50% less than before. Falling asleep has been a bit more gradual--which is good and bad. Sometimes it is TOO gradual and I need something else to get there. But mostly, I like surrendering to the slow relaxing engulfment by what seems to be actual sleepiness--something I do remember from pre-ME times! And then....once asleep, I am able to stay that way till morning at least four nights a week. A triumph for me, in any case. I think the fact that the stuff continues to be delivered for 6 hours gets me over that early morning wake-up tendency.

There are a few brands out there, but the one I got is called (embarrassingly) Zleep. It is only sold as a monthly subscription for about $35 a month, but you can get an introductory month for $20 and then cancel if you don't like it. The price is good for me--I am spending less now than I was previously.

If you are interested, you can find it here: https://www.zleeppatches.com The website is a bit worrying, but I am glad I gave it a try despite the cheap advertising. It is available on Amazon too.

 

[lenora]

Thanks, @Jyoti for the information.

If I fall asleep it's generally from 12:30 a.m. to 2:00 or thereabouts. Not long enough and right now I'm feeling like one sick old chick.

I'll (hopefully!) come out of this, but I guess too much visiting at the weekend just really did me in. For some reason, most sleeping pills that I've taken in the past, have had the same odd reaction that you describe (and I'm experiencing again as of last night). One night fine, but more than that I can only expect to get very, very little sleep. Valerian also has the same effect on me.....well, it seems that everything does. This has been a problem for 35+ years.

My healing from the 5 fractures in my pelvis was going well, as long as I didn't do too much (which is really very little). Patience, I guess and I don't want to lose my fairly cheerful outlook. It's hard on my husband, too....and seems unfair. He's healthy and this latest setback, is just that....a setback. I'm looking forward to sunnier days.

I'm glad you're having good success and hope if continues. Take good care. Yours, Lenora.