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high dose melatonin

Messages
8
hey all,

I first had CFS type issues in mid 2012. After a mild bout of Guillain Barre, I had a flulike illness that turned out to be EBV. This lasted a few weeks and I thought I was getting better, but my sleep was becoming poorer and poorer until I wasn't sleeping at all. Doctors were of no help, except for Dr. Dantini in FL, who advised to get tested for different viruses and that I could use high dose melatonin to fall asleep. I was desperate and went as high as 80 mg. It worked, and I gradually got back to somewhat normal sleep.

I have been seeing a sleep specialist since late 2012 and have used selegiline for daytime muscle twitching related to the sleeplessness, as well as zopiclone at 7.5 mg. This worked for me until a few months ago, when I noticed my sleep quality gradualy becoming poorer. I had been tapering the melatonin for some time and was down to 20-30 mg and thought this may be the reason. I also experienced fatigue and general malaise in this period. I had seen my doctor and he couldn't find anything wrong. Sleep specialist, same thing.

a few weeks ago I developed a cough that would only come on at night, then chest pain, abdominal pain and headaches. Then the fatigue got worse, debilitating. Had trouble getting out of bed, zero ability to focus. Then I had dizzy spells. Went to ER at one point, they said my bloodwork was fine and sent me home.

In the meanwhile, all the symptoms from the past few weeks have resolved--except the sleeplessness. I find I'm not able to sleep at all, similar to 2012. I've increased the melatonin up to 50mg and it's not helping. I don't know what to do.

I'm worried all the melatonin has effed up my immune system and now whatever autoimmune problems caused the sleeplessness are worse.

Has anyone else had issues like this?
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I can't speak to the melatonin but it is possible you developed a tolerance to the zopilcone so it didn't work as well.

If you look around there are some recent threads where I and @heapsreal talk about what we do for sleep, alternating between a lot of different things, changing each night so we don't develop tolerance. We both use benzos, antihistamines and many other OTC and rx things.

I found when I took 20 mg melatonin it just made me high.
 
Messages
15,786
Melatonin makes me sicker the following day. Probably due to aggravating Orthostatic Intolerance. I take it for a couple nights to combat jet lag, but I plan on being completely useless during those days.
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
I know this is slightly off-topic as I expect @Nick Michalak that you aren't an adolescent. But I wanted to spread this warning around. And perhaps melatonin should not be seen as benign in adults either.

My son, then aged 14 and with ME, was seen at the Royal Children's Hospital Fatigue Clinic here in Melbourne. At the end of the single consultation he was prescribed ritalin (despite not having ADHD symptoms) and 6 mg/night of melatonin (despite not having any sleep problems other than waking up unrefreshed). We were told to come back in 4 months.

Neither drugs did anything to improve my son's symptoms.

Soon after this, there were quite a few articles in the press about the dangers of melatonin in young people.
e.g.
https://www.adelaide.edu.au/news/news76502.html

Warning on use of drug for children's sleep
Wednesday, 25 February 2015

Sleep researchers at the University of Adelaide are warning doctors and parents not to provide the drug melatonin to children to help control their sleep problems.
...
In a paper published in the Journal of Paediatrics and Child Health, Professor David Kennaway, Head of the Circadian Physiology Laboratory at the University of Adelaide's Robinson Research Institute, warns that providing melatonin supplements to children may result in serious side effects when the children are older.
...
"Melatonin is registered in Australia as a treatment for primary insomnia only for people aged 55 years and over, but it's easily prescribed as an 'off label' treatment for sleep disorders for children."
...
Professor Kennaway says there is extensive evidence from laboratory studies that melatonin causes changes in multiple physiological systems, including cardiovascular, immune and metabolic systems, as well as reproduction in animals.
...
Professor Kennaway, who has been researching melatonin for the past 40 years, says these concerns have largely been ignored throughout the world.
...
"Considering the small advances melatonin provides to the timing of sleep, and considering what we know about how melatonin works in the body, it is not worth the risk to child and adolescent safety," he says.


J Paediatr Child Health. 2015 Jun;51(6):584-9. doi: 10.1111/jpc.12840. Epub 2015 Feb 3.
Potential safety issues in the use of the hormone melatonin in paediatrics.
Kennaway DJ1,2.
Author information

Abstract
Melatonin is a hormone produced by the pineal gland during the night in response to light/dark information received by the retina and its integration by the suprachiasmatic nucleus. When administered to selected populations of adults, in particular those displaying delayed sleep phase disorder, melatonin may advance the time of sleep onset. It is, however, being increasingly prescribed for children with sleep disorders despite the fact that (i) it is not registered for use in children anywhere in the world; (ii) it has not undergone the formal safety testing expected for a new drug, especially long-term safety in children; (iii) it is known to have profound effects on the reproductive systems of rodents, sheep and primates, as well as effects on the cardiovascular, immune and metabolic systems; and (iv) there is the potential for important interactions with drugs sometimes prescribed for children. In this review, I discuss properties of melatonin outside its ability to alter sleep timing that have been widely ignored but which raise questions about the safety of its use in infants and adolescents.​
 
Messages
8
this new sleep problem began during my recent illness, which I think had a viral as well as an autoimmune component, same as my illness in 2012.

My zopiclone tolerance has remained steady, never needing more than 7.5 mg in three years. That's not a huge problem if you ask me.

Something in my immune system starts misfiring, and I can't get to sleep. I had been tapering off the melatonin for some time, down to 20-30 mg. I'm worried the long term use affected my immune system..
 

out2lunch

Senior Member
Messages
204
Supplementing melatonin at doses higher than 5mg is probably not smart, unless there's a demonstrated need for it. My levels tested low, but most likely because I have an old calcified cyst in my pineal gland seen on imaging.

From personal experience, taking more than 5mg each night doesn't increase effectiveness. So taking quantities as high as 20mg or more is probably counterproductive if not actually harmful.
 
Messages
8
I got as low as 20 mg last year. Worked for a while. For whatever reason my sleep became poor again and I went back up to 30 mg. But what I'm going through now is ridiculous.