• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

What has helped more with your sleep?

JamBob

Senior Member
Messages
191
LDN helps with my sleep. It's about the only thing it does help with but it's worth taking just for that one reason. It makes my sleep more restful.
 

Sing

Senior Member
Messages
1,782
Location
New England
I recently saw an explanation but I don't know if it was on here. They work in different ways though. It's kind of weird. I don't now why doctors don't know these things and why we either have to read about it on here or figure it out for ourselves. They would rather prescribe some pill that doesn't work for us or has terrible side effects.

It is challenging but we need to take responsibility for our lives. In this instance it means finding out about the pills, tests or treatments, and advocating for ourselves, steering our own course.
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
LDN helps with my sleep. It's about the only thing it does help with but it's worth taking just for that one reason. It makes my sleep more restful.
A hallmark of autoimmunity/immune dysregulation is unrefreshing sleep from all I have seen and experienced. So that is why LDN helps...
 

WoolPippi

Senior Member
Messages
556
Location
Netherlands
I'm now sleeping through the night. I fixed my sleep you guys!

  • I spend fewer hours in bed for sleeping. Lights out from 23 till 6.30. With 45 minutes extra on each end to settle down or start up. This is a remedy for sleep, not a result.
  • Low tyramine diet (because of MAO A gene)
  • Got rid of the wiredness. During day as well as night. With valerian root and cognitive behaviour/NLP techniques and not eating anything that startles the body. Basically I eat chicken soup all day every day.. and relax my body all the time.
  • Taking serious downtime during the day. Horizontal rests for an hour, twice, at least.
This 3 to 5 insomnia is not psychological.
But influencing the body's stress system can be done with psychological techniques. For about 50% I say.

And stress at night is related to stress during the day. Can't fix the first without adressing the last. I snapped out of it with Gupta Amydala techniques and now I can manage stresses better. They wash over me and I guide my body back to ease when the stressor is gone.
I also take Hydrocortizone and MPO Progesterone so my body doesn't have to scramble for anti-stress hormones.
 

redaxe

Senior Member
Messages
230
What I found helpful was GABA and melatonin.

Gaba is a controverisial supplement. In theory it's not supposed to cross the blood-brain barrier but its possible that in large enough amounts some does. Some people also affirm that if your blood-brain barrier is permeable then you do get a bigger effect - im not sure if that is based on peer-reviewed science but that does seem to correlate with my own experience.
For instance I react quite strongly to GABA, after amount 15 minutes I feel really drowsy but when I gave a dose to my brother (who is in good health) he didn't feel any tranquilizing effect at all - only the characteristic tingling and heat flush sensation.

For those that don't know GABA is the main inhibitory neurotransmitter in the brain, I was recommended it by an anti-aging doctor who treated CFS with nutriceuticals. He claimed it soaks up the N- methyl D Aspartate which is an excitotoxin that contributes to our feeling wired and being unable to sleep (even though we don't have the energy to lift our hands over our heads)....

But by far the best thing ever for me has been strict mold avoidance. But camping in the arid outdoors indefinitely is not something everyone can try.
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
2015 and what helps so far is Melatonin Sublingual Dr Best or Douglas and Kavinace PM Ultra.

Phenibut in other words, and quite overpriced. But is real phenibut. Cannot be taken everyday and sometimes gives you really bad nightmares and that nullifies the deepness of sleep.
 

digital dog

Senior Member
Messages
646
There is a new drug on the market in the USA now. I can't remember the name but I know that it works on completely different receptors than the other Z drugs. Reviews are mixed.
I find I go through cycles and I am sure it is due to hormones. I can't take hormones though so I rely on as little ambien as possible. Maybe two 5mg tabs a month. If I didn't have these the wall behind my bed would be full of holes where I have slammed my head.
I have tried EVERYTHING there is to get adequate sleep but I'm afraid that nothing has helped me that doesn't cause bigger problems in the future.
I am going to try LDN though. I know it will cause insomnia to begin with (and in my case it may never go) but a great deal of people report better sleep after the initial period.
I am also going to try DHEA as it is something I have not tried for fifteen years.
How many of you here have tried these?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Benzos have a bad rap but, GABA is the main inhibitory neurotransmitter. So many people try to avoid anything to do with gaba receptors but it's like saying that when u drive a car that you are going to stop the car without the brake. U can take your foot off the accelerator but it's not very effective at stopping.

Medicine with its current sleep medications need to work out the best way to use them to help avoid tolerance and dosage escalation in chronic insomnia. More research needs to be done on sleep medicine.

The new orexin antagonist is promising and great if it helps but does seem like my analogy of taking your foot off the accelerator without the brake to stop. It seems like higher doses are needed than recommended from what I have read. Maybe a combination pill with a lower dose zolpidem with an orexin antagonist. I haven't used belsomra but just my view looking from outside in.

If I was smart enough and a biochemist researcher etc, I would look into some type of treatment to improve GABA sensitivity , similar to how type two diabetic meds improve insulin sensitivity, I think that would stop or reduce benzo tolerance. The best in theory I have found are nmda antagonists which are known to help reverse benzo tolerance as well as other drug tolerances. I think that would probably be the goose that layed the golden egg to have a new drug that could do this efficiently .

We can dream about sleep but that's one big contradiction haha.
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
Ambien just puts me to sleep doesn´t do anything for the refreshment factor.

It reduces cortical plasticity during sleep by 50%.

Besides, tolerance is real after 6 weeks for me.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
The new orexin antagonist is promising and great if it helps but does seem like my analogy of taking your foot off the accelerator without the brake to stop.

I like that analogy! I used to need stronger drugs, but having calmed my nerves through diet and supplements I decelerate more quickly and rarely need one which I refer to as a sledgehammer - but even my sledgehammer drug would probably not be enough for many people here - promethazine - and I only take half a 25mg tablet (a whole tablet knocks me out for about 24 hours).

Usually I only take paracetamol and codeine (I only need the codeine but can't get it on its own), other sedating antihistamines and/or melatonin, taken in rotation to avoid tolerance/dependence.

I still get the 'decelerating' effect, with the drugs gradually helping me to wind down in the evening, then finally get sleepy. Maybe it's the still-overactive brain that is the reason why some drugs take so long to work with me - the milder sedating antihistamines anyway.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
2015 and what helps so far is Melatonin Sublingual Dr Best or Douglas and Kavinace PM Ultra.

Phenibut in other words, and quite overpriced. But is real phenibut. Cannot be taken everyday and sometimes gives you really bad nightmares and that nullifies the deepness of sleep.

What dose of melatonin do you take?
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
I like that analogy! I used to need stronger drugs, but having calmed my nerves through diet and supplements I decelerate more quickly and rarely need one which I refer to as a sledgehammer - but even my sledgehammer drug would probably not be enough for many people here - promethazine - and I only take half a 25mg tablet (a whole tablet knocks me out for about 24 hours).

Usually I only take paracetamol and codeine (I only need the codeine but can't get it on its own), other sedating antihistamines and/or melatonin, taken in rotation to avoid tolerance/dependence.

I still get the 'decelerating' effect, with the drugs gradually helping me to wind down in the evening, then finally get sleepy. Maybe it's the still-overactive brain that is the reason why some drugs take so long to work with me - the milder sedating antihistamines anyway.


Interesting .

I have managed to keep my doses pretty much the same for many years but i need an initiator eg benzo and sleep enhancer eg antihistamine etc and different combinations of similar meds. If i just take an antihistamine I dont sleep. If i just use a benzo i may fall asleep but it doesnt last. The med combo is like hitting the brake as well as taking the foot off the accelerator ;)

i still need meds but now i definitely sleep better, maybe because of other treatments for infections etc . But the same combo a few years ago and i would continually wake up every hr or two or maybe get 2hrs one night and 4 the next, all from the same meds and doses now . Im probably less wired and tired , and more tired. Not sure if its a good sign or not.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
i still need meds but now i definitely sleep better, maybe because of other treatments for infections etc . But the same combo a few years ago and i would continually wake up every hr or two or maybe get 2hrs one night and 4 the next, all from the same meds and doses now . Im probably less wired and tired , and more tired. Not sure if its a good sign or not.

I hope it's good, as I am the same!
 

perchance dreamer

Senior Member
Messages
1,691
@heapsreal, you had talked about ornithine for sleep on a couple of other threads, so I tried it. It does help.

Unfortunately, I have to take sleep medicine. I'm actually doing pretty well on Belsomra, the new sleep drug that inhibits orexin. I do have some next-morning sedation, but I'm generally feeling more rested than before, so I think it's helping my sleep quality.

Belsomra does cause some people to dream or remember dreams more than before going on the drug. I usually feel better the next day if I dream.

I had a funny one recently. I dreamed I tried to smother an ex-boyfriend, whom I haven't seen in decades, with a dry cleaning bag. You know how the bags always have warnings? I woke thinking, wow, those bags really are dangerous!
 

aquariusgirl

Senior Member
Messages
1,732
LDN & mitolipo. Best sleep in 20 yrs on mitolipo. Google for more info. I guess a lot of my issues were mitochondrial (duh). & a special form of copper was the missing piece.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I dreamed I tried to smother an ex-boyfriend, whom I haven't seen in decades, with a dry cleaning bag. You know how the bags always have warnings? I woke thinking, wow, those bags really are dangerous!

Dreaming about killing...sounds like you're dangerous (or at least your subconcious is!) :eek:
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
@heapsreal, you had talked about ornithine for sleep on a couple of other threads, so I tried it. It does help.

Unfortunately, I have to take sleep medicine. I'm actually doing pretty well on Belsomra, the new sleep drug that inhibits orexin. I do have some next-morning sedation, but I'm generally feeling more rested than before, so I think it's helping my sleep quality.

Belsomra does cause some people to dream or remember dreams more than before going on the drug. I usually feel better the next day if I dream.

I had a funny one recently. I dreamed I tried to smother an ex-boyfriend, whom I haven't seen in decades, with a dry cleaning bag. You know how the bags always have warnings? I woke thinking, wow, those bags really are dangerous!


I would like to try the belsomra to see what its like. As for dreams , they are already weird type dreams going back in time to when i was a kids or places as a kid etc. Maybe remembering pte cfs days?
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
Forgot to say Zolpidem (Ambien) is amazingly effective for sleep onset in my case at 10 mg, but tolerance will appear at some point. It has zero side effects for me. So, add this med to things that work.

I don´t need it because melatonin sublingual works and is an hormone which has an antioxidant and antinflammatory role in the body, but it is quite amazing to have a med that puts you to sleep without side effects.

I just need something that deepens sleep. Phenibut does it, but cannot be taken everyday. Probably, healing my leaky gut and emotional/family stress will bring back refreshing sleep eventually.