Thank you for your reply
I'm quite behind... with everything including the forum.
The problem seemed to be due to several issues, hydration and posture, panic attacks. Potassium was always fine
The problem eventually has boiled down to 2 separate sleeping disorders, both graded as severe. I'm going into more detail below for the people interested in general. I include a warning about melatonin supplements at the end and why.
I'm trying to reach out to as many people as I can at least in my country with my story because I am sure quite a lot of people who are diagnosed with chronic fatigue syndrome actually may have either Early Onset Sleepphase Syndrome or Delayed Sleep Phasslet Syndrome (DSPS). We can be forced into a treatment programme that treats this with cognitive behavioral therapy, strict hours of waking up and sleeping every day at the same time and increasing exercise from 30 minutes to an hour daily. They only count the 30-60 minutes if in one event. 20+10 minutes don't count. If not, you can loose tour job or not get a disability because the institution has claimed they have a 70% succesrate. This doesn't include people that stop during the programme.
Since they didn't even take my question about testing not only 14 vials with blood but a melatonin test in the screening I'm trying to help at least someone.
I would have been sicker had I followed the programme (something else came in between and I never came back. Luckily. ..
Maybe if you ever come across it yourself or know someone with sleeping issues this may (emphasis on may) be a little helpful. Which is why I am going into it below.
One of my disorders included too little restful sleep, just 30 minutes instead of 120 for both physical recovery and mental recovery. My melatonin has to be reset because it started too late at night for the job I had (regular hours from 8:30-6pm)
There is a time frame in which people with no problems produce melatonin so that they sleep at certain times and after the initial alarmclockbattle (lol) are good to go a whole day. Someone who's melatonin produces later actually sort of wakes up on the middle of their biorhythmical night. On one hand the body still produces melatonin and wants to keep on sleeping. On the other hand adrenalin starts to increase. The longer this lasts in weeks, months etc and the later the production, the more problems will arise. Such as dizziness and stomach issues. Fatigue. You can imagine that if a body had to live on adrenalin more and more every day, it starts to get more difficult if not impossible to function. It can lead to excessive sleeping during the day, hypersomnia. If the DSPS is the cause of the hypersomnia, the hypersomnia is secundary and should get better when people are on melatonin on a daily schedule where the moment of intake is established on your personal curve and has to be taken at the same time every day for 6 months at least to get the body to take over itself again.
If the hypersomnia doesn't respond and all other causes such as a depression or other medication is excluded you have what is called primary hypersomnia. There is no cause for the sleep problems and depending on how often it occurs it is categorized as mild, moderate or severe. Only option is treat symptoms as best as possible and it's a lifelong problem with almost zero chance of spontaneous recovery. The results of these medications (ritalin or modafinil) are at best limited.
I suffered from sleepattacks every day at unpredictable times and slept for hours. Together with a body empty of adrenaline it's not difficult to imagine physical exercise starts to get harder and can even damage (if your body doesn't recover during the nights. ..)
I have no idea how my medication is working. Just started a week ago with ritalin and it varies. So I guess it's a matter of finding out what works best and what factors may also be involved (such as the rest at night).
If my most improvement would be 2h awake without attacks and then 2h of sleep and so on during a day it sounds bad. But it's a huge improvement if at least things are predictable and I can learn to live without it. A job though. .... but that's for later. I'm hoping for at least some improvement. Sleeping up to 20-22h a day can be depressing.
Nothing worse though than being misunderstood and be called lazy or unmotivated. That's gone now, gladly.
And I've learned to really enjoy all the things I can do and that give me.mental strength.
I may not getting into running anymore but that's not an issue that is on my mind much. First a bit of recovery and then get some of my life back.
Now that warning about melatonin. This is often defended as a natural supplement and therefore harmless. This is some strong marketing. You do not need melatonin supplements if you produce enough of it at the right times. Also, the moment of taking depends on your own individual production, not the standard info on the leaflet. Most day 1-2 hours before going to bed. While that may be true, it says nothing about "at the same time every day" so people end up taking it at irregular times. This is messing up your own hormonal balance and you actually create your own sleeping problem. (To which some respond with "see, I do have a problem". Which is true but caused by wrongful use of something you never needed in the first place)
Some take up to 10mg because lower doesn't work. Don't. If 5mg doesn't help you, it's not working for you. More than 5mg will not be able to be used by your body and again it may upset your own body.
People over 40 should stop taking it for 2 days in a row (weekends are the easiest to remember) because their own body won't be able to "understand" to produce it on its own anymore. Do not take it for more than 13 weeks. It's true that there are no longterm effects known. Which is only because these studies aren't done yet.
Only a sleep specialist can decide otherwise.
Hormones are not something to take as lightly as a lot of people do. Would you take testosterone just like that because it's a natural hormone? Are you taking thyroidmeds/supplements because it's also a hormone? I guess not.... it's not any different with melatonin, yet somehow this is considered an innocent supplement even by the fda and a Dutch judge who did not listen to the sleep specialists trying to get the higher dosage off the normal shelves.
If you have been taking it for a long time and you stop, you will find it difficult to sleep on your own but that is not "see? I need it" but may be a simple effect of your body not used to producing it itself anymore. There simply wasn't a need to as it got it from the outside. Why work if you don't have to?
In that case it's a good idea to consult with your doctor but keep in mind most of them also think it's harmless. In that case you may have to sit it out and otherwise get your bum to the doc again and see a specialist.
Now I'm done
