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    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.

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drugs=sleep

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
hi

I have also heard that some cfs people need sleep meds forever. I feel this might be the case for me, also 20 years of rotating shift work has messed my sleep up permanently as well as cfs, melatonin has helped a little with more normal sleep patterns although sometimes it just go's crazy.
 

RestingInHim

Realist
Messages
159
Location
Riverside, CA, USA
sleep meds

i've been on ambien for probably 15 years...got off of it for about a year somewhere in there. i still take it...but in the last year found it was not effective alone. i found sleep meds recommendations for cfs on CAA's website, i believe (i'll try to find it again & post it). i took it to my doc and she put me on trazodone in addition to the 10mgs of ambien. trazodone can be increased more than ambien. it's working great.

i've tried lunesta and ambien cr...but didn't work for me. my problem is usually falling asleep, not staying asleep. it relieves a tremendous amount of stress to know you will fall asleep every night!
 

Nielk

Senior Member
Messages
6,970
sleep meds

Does anyone have any experience with the supplement Kava Kava for sleep?
My Dr. recommended it for me but I'm in middle of switching a different medication and want to wait for that result before I start something new.

Thanks,
Nielk
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
Does anyone have any experience with the supplement Kava Kava for sleep?

I tried Kava (not for sleep, just for mood/relaxation) and it was horrible. Its basically an intoxicant akin to alcohol. Also it is very very rough on the liver. I've taken all sorts of herbs/meds in the last few years and nothing has ever been as rough on my liver as kava. Some people swear by it, but I would say PWCs should use with caution.
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
according to my pain doctor, once you have experienced markedly abnormal sleep patterns you will never again sleep normally. She believes I will always need sleep meds.

What your doctor is really saying is: "if we don't solve the underlying problem and just go for symptom suppression, the underlying problem will remain". I mean its hardly breaking news.

"Healthy people" with markedly abnormal sleep patterns get their problems fixed all the time with things like sleep hygeine. The problem in our case is our problems go deeper, and until we solve the underlying problem with our body chemistry we will always be reliant on external factors (meds, melatonin etc.).

The short term solution is to take meds/melatonin/whatever you need to get a good nights sleep whilst you undertake the long term solution of fixing the underlying health problems causing the sleep dysfunction.
 

Nielk

Senior Member
Messages
6,970
sleep

I tried Kava (not for sleep, just for mood/relaxation) and it was horrible. Its basically an intoxicant akin to alcohol. Also it is very very rough on the liver. I've taken all sorts of herbs/meds in the last few years and nothing has ever been as rough on my liver as kava. Some people swear by it, but I would say PWCs should use with caution.

Thanks for your reply. I will proceed with caution.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
I just started using a higher dose progesterone and am finding it is very helpful as a sedative.
I've written about this on another thread I recently posted about research that suggests progesterone can aid brain repair after brain injury.
 
Messages
27
Location
brisbane, Australia
i'm on prothiaden 75mg, imovane 7.5mg, restavit 25mg and melatonin 5mg. I take all those at once every night. It gets me 8 - 10 hours sleep. Without them I can't fall asleep or stay asleep.
 
Messages
27
Location
brisbane, Australia
Not true in my case - I had months of hardly sleeping at all when my fibromyalgia was bad a few years ago, but when I'm in remission I sleep normally.

was it the pain keep you awake? With CFS it completely knocks your sleep center in your brain for six. Some Fibro sufferers seem to be able to sleep fine still but they can't get good sleep due to pain. Kind of what I have been picking up from stories and research. People with CFS/Fibro that can still sleep naturally seem to be the ones that make a good recovery.
 

HopingSince88

Senior Member
Messages
335
Location
Maine
Adrenal Insufficiency affected my sleep - DHEA helped

I had the 'can't stay asleep' issue for nearly 2 decades. I never had problems falling asleep, but woke up at about 2am every morning, and just could not go back to sleep no matter what I did with diet, sleep hygiene, etc. In 2007 I was dx'd with adrenal insufficiency, and was prescribed bio-identical DHEA. It took me over a month of trial and error to get the dose right. But once I got that right, I was able to consistently sleep through the night. The nurse practitioner that prescribed the DHEA would only let me stay on it for about a year. Luckily, I have not had a relapse, and my system seems to be able to stay asleep without assistance from meds now, unless I let stress slip into my day.

Although I am now able to consistently sleep through the night, I still don't get deep sleep, and still wake up physically fatigued. I have had 2 sleep studies that confirm the lack of stage 3 and 4 sleep. The one aspect that improved slowly since 2007 is that my REM sleep has increased. I think that the increase in REM sleep has helped a bit with the brain fog.
 

Jenny

Senior Member
Messages
1,388
Location
Dorset
was it the pain keep you awake? With CFS it completely knocks your sleep center in your brain for six. Some Fibro sufferers seem to be able to sleep fine still but they can't get good sleep due to pain. Kind of what I have been picking up from stories and research. People with CFS/Fibro that can still sleep naturally seem to be the ones that make a good recovery.

Hi da foles - No not the pain particularly, just feeling wired and having night sweats. But my fibro isn't so bad these days and even when I'm in a ME relapse my sleep isn't bad. Amitripylene helps.

Jenny
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
hi jenny,
i have used amitriptyline before and never found it sedating at all but was good for low level all over type pain. could take it during the day with no problems, but from what i have read about others, it knocks them out, makes them put on weight etc.
Go's to show how different people are with meds. I hate that wired tired type feeling, ithink its from all the inflammatory things going on in our body and brain that do this to us.

cheers
 

alice1

Senior Member
Messages
457
Location
Toronto
I've used Restoril for 20 years and have only had to increase my dose a few times.I like this drug because it doesn't add to the normal fatique that I have in the morning.
I also take Magnesium at night.
 

Martlet

Senior Member
Messages
1,837
Location
Near St Louis, MO
I've used Restoril for 20 years and have only had to increase my dose a few times.I like this drug because it doesn't add to the normal fatique that I have in the morning.
I also take Magnesium at night.

Would you mind telling me what dose you are on? Normally, this works well for me, but then I go through periods where it just seems to quit working. Usually when other symptoms are also bad. Given my druthers, I'd have a 26-hour day as that seems to be how my internal clock is set.
 

flybro

Senior Member
Messages
706
Location
pluto
Before I went on the painkiller tramadol (zydol usa) my sleep was all over the place, I was up and down all night for a pee, and could never get comfortable.

Since having the Tamadol, i get more quality sleep, I often hurt like hell when I wake up though.

I can still get into the wired but tired thing, especially when my symptoms are flaring up. Zopiclone helps with this, but it has unpredictable effects on me.

It has also caused halucinations, not scary but definately weird. Sometime I can take half a tab and be knocked out for 12 hours and drowsy for the nxt day, another time I can take a full one and get very little benefit.

I have started to develope a bit of a bed phobia. I always feel rough when I wake up, quite often the rough feeling will stay with me for days or weeks.

When I am feeling well I don't want it to stop, and I know going to bed will make me feel like crap the next day, hence bedphobic.
 

Hope123

Senior Member
Messages
1,266
My drug of choice is low-dose trazadone which works well and has minimal side effects for me. (CFS only)

I think the sleep problems from CFS stem from abnormally high levels of cytokines at night - there was some study about this - so the usual sleep hygience measures can augment but not resolve CFS insomnia. My insomnia started the week I came down with CFS - no prior history of insomnia at all.
 

flybro

Senior Member
Messages
706
Location
pluto
My family used to joke that I coud sleep on a clothes line and it would take a bomb to wake me up.

Funnily enough a bomb did actually wake me up once, but in all fairness it did make me fall out of bed LOL
 
J

johnrite

Guest
Poor sleep quality can occur as a result of sleep apnea or clinical depression. Poor sleep quality is caused by the individual not reaching stage 4 or delta sleep which has restorative properties. There are, however, people who are unable to achieve stage 4 sleep due to brain damage who lead perfectly normal lives.