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Pills/methods to get DEEPER sleep? re: daytime drowsiness

CAcfs

Senior Member
Messages
178
Hi all.

So what prescription sleep aids, or OTC herbals, vitamins, minerals, hormones, aminos, etc should one take to improve DEEP, RESTORATIVE sleep?

I feel very drowsy during the day, and I really get the sense that the ample time I spend sleeping is not restorative.

I do use a sleep apnea machine, for what was borderline mild/moderate obstructive apnea (some docs wouldn't bother treating at the levels found, but given my symptoms, they decided to)....and so my apneas are now down to basically 0, but no change in daytime drowsiness.

I feel like something must be wrong chemically, and I just need deeper sleep! Help!!!!!?!???! Thoughts? I do exercise during the day, as much as I can.

But what have you guys heard of that helps with quality sleep? (not just knocking you out). I am looking to go through all the phases. My primary type of fatigue is drowsiness, so I think something must be wrong here. I do sleep a lot, about 8-10 hours a night solid, no tossing, but wake up every morning feeling like I didn't sleep at all, then drowsy all day. My sleep/wake cycle is skewed to staying up too late, so I would like to fix that too and maybe it's part of the problem, but I think improving my sleep would help me get up earlier.
 

heapsreal

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Messages
10,089
Location
australia (brisbane)
Everything u use you will develop a tolerance to over time so need to have regular breaks from meds, swap and change etc to keep them working.
Baclofen can improve sleep quality, on its own doesnt zonk me out but with other meds it works well, i normally use it with zopiclone.
Lyrica can improve sleep quality but its same as baclofen in that it doesnt put me to sleep but does improve sleep.
If u can afford it or even get a script, others have used xyrem which is suppose to be the top shelf sleep med, whats interesting is they class baclofen as the poor mans xyrem as both increase deep slow wave sleep, but i think xyrem is probably more sedating.
At the moment i use a combo of meds for sleep, zopiclone, neurontin(leg pains), antihistamine, supps with melatonin, tryptophan, phosphatidylserine, withania, but i do rotate between this and a few other things to try and avoid tolerence.

Sometimes it might not just be poor sleep but adrenal hormones functioning low, so may need to look into this as well.

cheers!!!
 

Adster

Senior Member
Messages
600
Location
Australia
Melatonin around 3mg is good to set your sleep cycle. Take it around 30mins before you want to fall asleep. The slow release types can keep you asleep for longer. If you wake feeling drowsy reduce the dose. Tryptophan and 5htp are also know to improve sleep quality.. Make sure you are waking at a reasonable hour too, even if you feel horrible, try to get up. Rest mid morning if you need to but try not to fall asleep. Deep relaxation is better than napping in many ways as it won't throw your sleep cycle out if you are struggling with it. Avoid LCD monitors, TV's etc before bed.
 
Messages
15,786
2.5mg melatonin helped, but that made ME symptoms worse, probably because it's known to aggravate orthostatic intolerance. Amitriptyline worked fairly well, but made me feel like a full on zombie all day until it was nearly bed time again.

So then I said $&*% that, did some research, and figured my high glutamate levels (probably a common problem in ME/CFS) were very capable of causing my particular sleeping problems. Essentially my brain was not shutting down at bedtime even when I was exhausted, and any little sound/sensation at night was waking me up and keeping me awake.

One way to lower glutamate is with Lyrica (turns glutamate into it's opponent, GABA), but I've got a while til I see my ME doc again. Another way to lower glutamate is with N-acetylcysteine, which is a supplement that's relatively cheap and easy to buy over the counter. It lowers glutamate (and glycine) by combining with them to form glutathione.

I started taking N-acetylcysteine a week ago, including a dose (600mg Jarrow extended release) on an empty stomach right before bed time. I have slept wonderfully every night since then. Usually from 9-9:30pm til 5:30-6am. I also take my phosphatidylserine complex about 2 hours before bed time, which also might be helping with falling asleep quickly.

Extended release tablets may be important, because NAC has a pretty short half life in the body.
 

CAcfs

Senior Member
Messages
178
This is giving me a lot to think about, so thanks! I remember reading about Xyrem, and reading it really did help some people, so who knows, maybe I will try to find a doctor around here to prescribe it.

I neglected to mention that I am currently taking 1,000 mg of Source Naturals brand L-Tryptophan with 6 mg Vit B6 (p5p) at night before bed, and I use that like one would use Lunesta or Ambien....just something to knock me out quickly so my apnea machine doesn't annoy me. I might fall asleep without the Tryptophan, but then I run the risk of tossing around while getting comfortable, or worse yet, waking up more while tossing, which leads to sleep failure.

I have actually been more drowsy in the mornings since taking the Tryptophan, but it could just be a coincidence, or maybe I'm on too much (though it's a normal dose).

The Lyrica is an interesting thought. I vaguely remember a doctor friend of mine, who I was a patient of, telling me she wasn't a fan of that and that she considers it a "dirty drug", meaning she considers it more prone to side effects than the actual benefit you could theoretically get. I think she told me that because I actually asked her if I should take it for sleep. She was like, "only take it if you need it for fibro, but don't take it just for better sleep." However, she could be wrong. She's not an expert in those fields.
 

sensing progress

Senior Member
Messages
296
Location
Tucson, AZ
melatonin does help me to fall asleep, and doxepin helps me to stay asleep. benadryl is also good for helping to stay asleep. with doxepin I really do feel like I'm getting deeper sleep but its a fine line with taking enough to reach it or too much and I feel very groggy the next day. I think the best advice is to try many different things and always begin at low doses until you find something that works for you.
 

penny

Senior Member
Messages
288
Location
Southern California
Baclofen can improve sleep quality, on its own doesnt zonk me out but with other meds it works well, i normally use it with zopiclone.

Hi Heapsreal,
I was wondering what dosage of baclofen do you take?
I take 10mg a night, and I think it helps, but am needing to tweak my sleep stuff as it doesn't seem to be working so well. Weighing my options of upping baclofen, ambien or adding something new...
Thanks, and apologies if I've asked this already! I feel like I've written this email before : )
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Hi Heapsreal,
I was wondering what dosage of baclofen do you take?
I take 10mg a night, and I think it helps, but am needing to tweak my sleep stuff as it doesn't seem to be working so well. Weighing my options of upping baclofen, ambien or adding something new...
Thanks, and apologies if I've asked this already! I feel like I've written this email before : )

lol written this email, i feel like i have probably asked the same question u are asking lol. I have used as much as 75mg at night but now settle for 20-30mg, sometimes 50mg but try not to use it every night. Larger doses do help but u just get a tolerance to them so i stick to 20-30mg and when it feels like its not working i stop using it for awhile. I have recently started using tizanadine at 4-8mg and it seems to help. example of my night time concoction is valium 5mg, tizanidine 6mg and 50mg diphenhydramine. Im finding if i wake up in the early morning etc 2-3000mg of tryptophan works well for helping me get back to sleep, maybe works well as my stomache is empty and its not competing with other amino acids.

In saying all that and sounding like an expert, i had a crap sleep last night, waking up every 2 hours. I did jump on here at 3am for a short while and then had to blow poor madie off as i had the urge to sleep again, lol, sorry madie. but in general my sleep seems to be getting more consistent, but i still get a bad night once a week minimum.

good luck.
 

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
For me, an expert in hormone replacement has been amazing. Took my years of migraines away in a day or two. They help sleep of course also.

5htp helps me as well as a good powdered mag. Both of these as well as my hormones are from this specialist. He works with my integrative MD. He does blood testing twice a year. Not cheap, but worth every dime.
 

penny

Senior Member
Messages
288
Location
Southern California
lol written this email, i feel like i have probably asked the same question u are asking lol.

I'm glad I'm not the only one ; )

Hmmm, I wonder if I have acclimated to the meds, and thus the worsening. Alternating does make sense, but I don't really have that many things in my 'arsenal' so am not sure how well I can do it. I did take 10mg of Ambien last night (usually only take 5mg) which helped, but my doctor is hesitant about the Ambien and I wouldn't be able to take 10mg every night without a change in rx from him. I might have better luck with getting a larger dose of baclofen prescribed - I'll test out a 20mg dose the next couple of nights and see if that helps. Also I could try benadryl occasionally and was thinking about trying Valentijn's recommendation of NAC. And possibly tryptophan or 5htp (though I feel like maybe I've tried that? ach, my memory again).

Tricky to find something that improves sleep but doesn't leave one zombified the next day. I swear this illness is as time consuming as a full time job and more expensive than a child!

Thanks everyone! And sweet dreams : )
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
Penny, look into other different antihistamines like doxylamine and phenergan, but try them on a night when u dont have to do much the next day just in case your groggy. Kava and withania are also good for sleep. I prefer tryptophan for sleep over 5htp but have to take it a few hours after eating.

cheers!!!
 

suzanne

Senior Member
Messages
178
I recently trialled ecklonia cava- it is said to be good forfibromyalgia and recommended by Dr martin Pall a art of his protocol.

I had the best sleep ever- I even wante to go to bed at 10.30 om instead of midnight and I slept like a log. Trouble was, the ecklonia cava gave me a bad headache and nausea. I dont know if I stayed on the ecklonia or just lowered the dose, and hang in there if these bad symptoms go away. Apparently it can increase your serotonin and human growth hormone, so maybe my symtpoms were related to changes in serotonin levels?

Just thought I would chime in in case this helps anyone.
 

sensing progress

Senior Member
Messages
296
Location
Tucson, AZ
I ran out of my prescription for Doxepin over the Thanksgiving holiday and boy did I feel the difference. Tried substituting Benadryl as a sleep sustainer but it just doesn't get the job done.
 

penny

Senior Member
Messages
288
Location
Southern California
So I've had two lovely nights of sleep on a higher baclofen dose (20mg) - it helped me fall asleep (still with 5mg of ambien), stay asleep better, and go back to sleep if I wake up before my alarm in the am (or, if I wake up after my alarm and just keep hitting the snooze button ; ). I've felt better rested the day after, and have been pretty clear cognitively.

Admittedly two days is too short a trial to generalize, but it's been a nice two days! Now we'll have to see if it KEEPS working (and if my doctor will up my prescription).
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
So I've had two lovely nights of sleep on a higher baclofen dose (20mg) - it helped me fall asleep (still with 5mg of ambien), stay asleep better, and go back to sleep if I wake up before my alarm in the am (or, if I wake up after my alarm and just keep hitting the snooze button ; ). I've felt better rested the day after, and have been pretty clear cognitively.

Admittedly two days is too short a trial to generalize, but it's been a nice two days! Now we'll have to see if it KEEPS working (and if my doctor will up my prescription).

All sounds good, great to hear. I dont find baclofen puts me to sleep or even makes me sleepy but with sleep meds it does improve sleep quality. I have found if brain fog/headaches are bad during the day sometimes this has helped alot, sometimes. Dr Jay Goldstein recommended baclofen highly for cfs. I havent been using it as much lately, maybe once or twice a week at 30mg, but when i do i seem to get good sleep with it. For me using less often has helped reduce the tolerance. I think i mentioned this before, but i have been using tizanidine which is a muscle relaxer and it has been working quite well too but limiting its use to a couple of times a week.

Penny i think its a smart move using a combo for sleep as it helps u to keep total drug doses down, as u have been able to keep your ambien dosage down, save u money as well. For many of use its hard to get good sleep, im envy of the people who have used the 1 med at the 1 dosage for along time and been able to get good sleep. for me its a never ending cycle of different combo's, but i have been able to keep my drug dosages down, i think if u get to the stage where u have to keep increasing dosages you can end up with problems and addiction as well as worsening sleep problems. I think if something stops working after maybe a small dosage increase, its time to take a break from that med and use something else for awhile??

cheers!!
 

penny

Senior Member
Messages
288
Location
Southern California
I think your right (on many counts). I think right now, for me, baclofen, ambien, LDN and (maybe) magnesium are all working together, where no single thing would do the trick on it's own. But even with the combo my dosage of the baclofen has been creeping up. Originally, about 8 months ago, I was prescribed 10 but only took a half most nights, then the whole 10, now 20 is seeming to work well. I think my sleep study showed that I was short on slow wave sleep, and so I do feel more comfortable with increasing the baclofen than my ambien, since it seems to be a more targeted to an observed issue.

But I don't want to 'ruin' the effectiveness of any of them, or create a situation where it doesn't help much but I'm dependent on it. It's difficult for me to skip nights though when I have something that has worked in the past, just for fear of having an awful night. Not that taking the same thing means I won't still have an awful night, but it feels like it gives me a chance. I think what I need to do is try some alternative combinations on non-work nights, when I it'll be 'easier' for me to be groggy/foggy/sick the next day. We'll see!

I do feel incredibly lucky that something seems to be working, some, some of the time ;) Knock on wood. Fingers crossed.
 

u&iraok

Senior Member
Messages
427
Location
U.S.
This may not work for you if you need complete silence in order to sleep like I do, but it helped my husband. He doesn't have ME/CFS but he has severe insomnia caused by a head injury he got as a child which makes it difficult for him to fall asleep, stay asleep and go into a deep sleep. Also his body clock tells him to sleep during the period of 3:00 am to 11:00 am.

It's a sleep machine called the Tranquil Moments Sleep Sound Therapy System. Based on scientific research it plays sounds, each separately based on either theta or delta (and alpha, should you want that!) brainwaves that coax your brain to match those frequencies.

I can't use it to sleep but a few of the settings do relax me if I'm not trying to fall asleep.

I don't know if it would work for PWCs but it worked for my husband and nothing works for him except strong drugs, one of which messed him up, and the other, Ambien, had him a nervous wreck and sleep- walking, doing dangerous things.

In developing the Tranquil Moments Sound Therapy System, Brookstone worked in close partnership with world-renowned sound therapy expert Dr. Jeffrey Thompson, D.C.
'Tranquil Moments Sound Therapy represents more than two decades of research into using sound to heal and positively change states of consciousness. It is the result of successful work with thousands of patients and clinical research.'
Dr. Jeffrey Thompson, Founder of The Center for Neuroacoustic Research