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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Non Restorative Sleep

Seven7

Seven
Messages
3,444
Location
USA
I have only used that one, others here
Use other things. Also some drugs like benzodiazepines are known to reduce stage 4 so be careful on what other meds are you taking.
 

Cheesus

Senior Member
Messages
1,292
Location
UK
I use amitriptyline when I go through patches of bad sleep. I also used it continuously for 2 years before I got to a point where I could sleep independently. I found as long as I didn't take too much I had no drowsiness or side effects. I also didn't get addicted.
 

mattie

Senior Member
Messages
363
I've been prescribed low dose Amitriptyline (10mg) by a neurologist. This was after a sleep study that showed I was lacking proper deep sleep cycles. Also countless awakenings every night.
Neurologist told me that from her experience with many hundreds of patients amitriptyline works well for around 60%

Hoping side effects will not be too bad as I've read that this med could worsen OI or POTS.
Will start with small dose and build up from there.
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
'Sleep' for me used to mean closing my eyes at night, changing position many times during the night, then opening my eyes in the morning. I know that I lost consciousness and 'slept' but I felt exactly the same when I woke up as when I closed my eyes the night before. I had no sleep grogginess and my mind was alert as soon as I regained consciousness. The poor sleep developed so slowly that I had no idea how bad it had become until I started reading about sleep problems with CFS.

Now I actually stay asleep for much of the night, wake up to change position but feel sleep groggy and usually go back to sleep quickly. My sleep quality still isn't great but it's much better than it used to be and there is some restorative aspect to it, thanks to:

* B12 (1mg) and Methylfolate (800-1600mcg) - sleep quality first started to improve when I started taking both as part of Freddd's treatment. I noticed that the wired-but-tired feeling I had been living with for many years finally started to fade away.

* Low dose Naltrexone - 2.5mg at midnight. When I started it my sleep worsened but now is much improved. I wake up, squirt it in my mouth, and usually go back to sleep within seconds.
* Melatonin - time release 1mg before bed
* Organic India Peaceful Sleep - herbal mixture, one capsule before bed. Very effective compared to other herbal remedies that I have tried.
* Nighty Night tea is also good in place of Peaceful Sleep
* Magnesium citrate before bed, roughly 150mg.

Niacinamide was great for improving my sleep even more but I had to stop after a couple of nights because it was lowering my already low blood pressure even more.

Due to the above essential sleep aids my thought clarity is much improved and I feel better in general than I have in the past five years or more. I'm still partly bedbound due to OI and have major problems with muscle fatigue and PEM if don't stay within my meager energy envelope, but mentally and mood-wise I feel much better.
 

Hip

Senior Member
Messages
17,865
My situation might be a little different as I was a victim of a severe adverse reaction to Lexapro last December.

May I ask, how long were you taking Lexapro before the adverse reaction began? What was nature of the adverse reaction (what symptoms did you experience)? How long did this adverse reaction last for? Did you immediately stop taking the Lexapro when the adverse reaction first appeared? Did your ME/CFS-like symptoms appear immediately after the adverse reaction, or some time later?

Are you able to do physical exercise without any difficulty or payback? Usually in ME/CFS, physical exertion leads to post-exertional malaise (PEM), and the PEM can last for several days or even weeks.

Have you found anyone else online who developed an ME/CFS-like syndrome after taking an SSRI drug?

Is it possible that you might have caught a viral infection at around the time when the adverse reaction symptoms appeared, and could it be that your symptoms were actually the result of a virus? ME/CFS typically begins after catching a virus. Around the time of the adverse reaction, did you have any tell-tale signs of a viral infection, such as a sore throat or respiratory infection, gastrointestinal upset, stomach pain, diarrhea, fever and high temperature, etc?

That's not to deny the idea that Lexapro did cause your condition; but just checking that it was not something else, like a virus. Exposure to lots of mold in water-damaged buildings is another reported trigger of ME/CFS.
 
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Hip

Senior Member
Messages
17,865
@Cubbies2016
Actually I found this account of someone who developed ME/CFS from Lexapro. They mention low dopamine. Have you tried any supplements that help increase dopamine, like NADH or DL-phenylalanine?