• 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?

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
The only thing that has ever helped me sleep is Trazodone. But even with that I wake almost like clockwork at 3 a.m. I actually feel pretty ok with this. The few times I've slept straight through, and wake around 5:30 a.m I feel like garbage.

I've been trying on and off for years to try to find a lot of other things to try. Nothing OTC has helped at all and so far I'm batting zero with RX's. They either drug me or make me feel like I"m on speed.

Someone on another forum said the funniest thing about sleep. He said "I make chamomile tea in a cast iron teapot and then bash myself in the skull with it." Hahaha I still laugh every time I read that!
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
lol Minkeygirl when nothing else works you can always try some violence... Well I took Trazodone of course, had to try right? Well I got a full week of sore throat and two days of flu malaise. Quite scary.

I don´t know what that stuff does to me but googling it I have found others reacted the same, painful sore throat and sometimes flu symptoms!... And no help with sleeping. So odd.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I think we are all so different. I know people who can't tolerate it either but I'd be sunk without it.

Lots of people here like Baclofen, I felt like I was on speed with it. Seroquel drugged me for 24 hours, along with elavil and I forget what else.

It's all trial and error for us.
 

Sparrow

Senior Member
Messages
691
Location
Canada
Douglas Labs Melatonin 3mg sublingual (I specify the brand and dose because every other type of melatonin I've tried doesn't even make a dent, while this one knocks me out like a hammer to the head. Before I tried it, I thought melatonin just didn't work for me. They should be paying me for the number of times I recommend this, but it's been a super help to me).

I also take lemon balm and hops, which help a tiny bit but not nearly like that particular kind of melatonin.

Staying away from any kind of electronics for an hour before bed has helped a lot as well. I didn't expect it to make nearly as much of a difference as it did, and wish I'd started doing that sooner.

Much of the time my sleep is much, much better now, and I'm eternally grateful for that. I do notice that I still have super crappy sleep and wake up in the wee hours of the morning if I've overdone it during the day. I think crappier sleep is just a regular part of my PEM, and one that shows up even when I haven't overdone it badly enough to trigger the worst of my PEM symptoms. If I'm careful about my energy expenditures during the day, I sleep a lot better.

Edited to add: Just to be clear, by "better" I mean that I can sleep through now and don't feel quite so dead in the morning if I get at least 9 or 10 hours. I still don't feel refreshed at all. Haven't yet found a supplement or medication that's made much of a dent in that.
 

Tammy

Senior Member
Messages
2,176
Location
New Mexico
Well...........for me progesterone cream.....but I am in menopause! Might not be of benefit for a young man like you!
 

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
Hehe Tammy actually I am progesterone defficient in blood tests! :rofl:

@Sparrow I believe you. Douglas is a solid brand. In my experience a LOT of brands on the supplement market seem to be very low quality or placebo, that is the only way to explain why 40% or more that I have tried just does not have an effect at all. And not just for me, my healthy smaller brother also didn´t get anything from Rhodiola Solgar for example. I took once 6 pills of the stuff just to see and nada.

How many more brands/types of melatonin did you try? I say this because I have tried a few, from liquid forms, to plain melatonin capsules to sustained-release tablets Kirkmans brand.

Thanks for your comments everyone. Now I have some things to discuss with my GP and that psychiatrist appointment that is coming.
 
Last edited:

leokitten

Senior Member
Messages
1,542
Location
U.S.
Douglas Labs Melatonin 3mg sublingual (I specify the brand and dose because every other type of melatonin I've tried doesn't even make a dent, while this one knocks me out like a hammer to the head. Before I tried it, I thought melatonin just didn't work for me. They should be paying me for the number of times I recommend this, but it's been a super help to me).

The thing to watch out for is melatonin is a potent inhibitor of cortisol production so those of you who are using it as a sleep aid at night if you are taking larger dosages it will definitely negatively affect your cortisol the next day.

I noticed that with me and stopped taking it for that reason and have been better without it. Though I do think if you take a small dosage <= 5mg it should be ok for most people.
 
Last edited:

dannybex

Senior Member
Messages
3,561
Location
Seattle
I think that depends on when you take the melatonin, and how much one takes. I try to take it about 45 minutes before going to bed, so that I'm totally ready to sleep by the time it kicks in.

Also Seriphos is working well for me. It's also supposed to lower high cortisol, which may be why some of us have trouble in the first place. But my doc said to take one about 2-3 hours before bedtime, then another one 15 minutes before I hit the sack.
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
After using so many different sleeping medications and aids, etc I found that in the end they make things worse. They are just a quick fix. I stopped them all a while ago.

I know that a lot of people might disagree with what I say here, but I found that if you try to push yourself (just a little) to stay somewhat active the entire day and resist the urge to take naps then my sleep at night became a million times better, deeper and for more continuous hours without waking. I would also wake up not feeling so terrible.

When I just didn't do much at all and rested and napped one or two times a day I found that this makes for terrible and fragmented sleep at night and waking up exhausted.

Now I don't mean to push yourself until you crash, just try to go the entire day doing things and staying a bit active and not napping. Then by night time you are more tired but not in any way crashing and then you don't need a sleep aid and you sleep more like we did before we had CFS. I felt its more natural for my body to at least try to keep my wake/sleep cycle as much as possible like a normal person.

And it just makes sense, even for people without CFS if they sat a home all day not doing much at all and napping all the time they wouldn't sleep well at night.

I forgot to add it took me like a week or so of pushing myself and doing this every day with the sleep still not being good until then it suddenly worked. And it reinforces itself, once my sleep got better I could be more active and less resisted to take naps during the day which made me more ready to sleep at night without any help and so on.
 
Last edited:

Beyond

Juice Me Up, Scotty!!!
Messages
1,122
Location
Murcia, Spain
This is why I love this site and the people in it. It is inmensely helpful.

@leokitten Good points risen and I will make well sure I do something everyday, to the extent of my daily capacity. Lots of days I barely can walk though :( Today I have a surge of energy! However, I for one had my melatonin tested in urine and I am defficient. So supplementing makes sense at least for a while.
 
Messages
80
Location
South Dakota
I've gotten pretty good 8 hr nights taking 1 475 mg. Swanson Valerian Root 1 hr. before bedtime [which is at about 1 or 2 AM]. If I've eaten sugar or a bit of gluten, casein or soy, I add 1 Swanson 650 mg. quercetin, cuz those 4 items tend to start me itching somewhere. I've tested gluten, casein & soy intolerant.
Sweet dreams to you!
 

helen1

Senior Member
Messages
1,033
Location
Canada
GABA is the only thing that's made a difference to me. I take the pharmaGABA variety which supposedly crosses the blood brain barrier, 250 mg. I still wake up but now I go back to sleep more quickly. And I get deep sleep now which is so nice. Still have a hard time getting out of bed in the morning, but I feel okay once I'm up and moving.