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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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Can't sleep at all

Messages
13
I just had cfs sudden onset on thursday and since then I could not sleep at all! I'm just not feeling tired, but my head does not allow me to get only a little bit of sleep.

It's that every time I fall asleep I get some kind of shock in this moment and am wide awake again.

Do you know what I could try? Is this ever going to change to some version where I might get at least some hours of sleep now and then?

Thanks!
 
Messages
170
Location
Hippietown
As @Valentijn mentioned a sleep specialist might be a good idea.

If you go see your PCP, they'll likely prescribe you something like Trazodone or one of the Z drugs.

There are always OTC meds to help with sleep, ie Benadryl, Unisom, Chlor-trimeton, etc.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
If non sleep lasts more than a week, or it induces hallucinations, seeing a doctor is not only important but urgent and it may be life threatening to not get help. As a precaution do not drive or do anything else that might be dangerous if you cannot pay attention.

One thing that can happen though is that, as sleep deprivation continues, you might have short catnaps and not even know it. These can be minutes or even seconds long. Once you start dreaming even while awake you can become dangerous to yourself.

I have had zero sleep for long periods with ME, over three days, and some I know of have gone four or more days, but its not common, and is accompanied by many other ME symptoms. When I had the three days without sleep the doctor's heavy dose sleeping pills did nothing for me. It resolved on its own.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
What are you eating? What have you been eating? The brain requires some omega-6 fats to actually trigger sleep. An omega-6 fat derivative is the final messenger telling cells to go into sleep mode. If that is disrupted, by chemicals, or alcohol, or bad fats, or no omega 6 fats in the diet, the solution is to fix the nutrition.

Some antiinflammatory drugs can disrupt the same pathway, especially aspirin.

Are you in the extreme northern hemisphere, such as Alaska? Sometimes the environment matters.
 

Hip

Senior Member
Messages
17,874
I just had cfs sudden onset on thursday and since then I could not sleep at all!

You had sudden ME/CFS onset 4 days ago?

How were you able to get your ME/CFS diagnosed (or diagnose it yourself) so quickly? Usually it takes months or years before a patient can settle on a ME/CFS diagnosis, partly because there are so many different symptoms in ME/CFS that it takes a while to familiarize yourself with them.

Was the onset infection-induced?
 
Messages
13
It was induced by emotional stress I fear...

I knew about this illness before, because a relative has it, so I understand what this is when my blood flow is completely shut down suddenly. But I didn't know about this no-sleep-thing, I thought you would always sleep very long instead of nothing at all. I could sleep for 5 hours due to a medication now, but I'm not sure how to do it in the following years. I actually wish to sleept EVERY night.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
There are probably a hundred different reasons for getting CFS like symptoms, if not more. Its impossible to be sure this is what you have, though its more likely if you have a severe viral onset. Its not at all proven that stress can cause CFS or ME. Stress might however be a risk factor for other things that might trigger it.

This needs to be investigated by a doctor. Many similar problems are far more easily treatable.

You might need to see a neurologist, but a primary care (general) practitioner is the first step.
 
Messages
13
Did anyone make the experience that he had insomnia in the beginning but it got better over time? I can't imagine a life with hardly any sleep.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The irony is I am not sleeping right now. Its been a day or two, but I can grab regular rests and I think I nodded off for ten minutes during one of my rests. So I am trying to track down what is causing it myself. I know part of the answer, I am slowly recovering from acute sinusitis which leaves me unable to breathe properly. I need to take some omega 6 next, if I have any. Every now and again this happens.
 

maddietod

Senior Member
Messages
2,860
Insomnia is very common in diagnosed CFS. I've been active on a number of insomnia threads, and I don't remember anybody saying it resolved. Some people find a sleep med that works for them, some rotate sleep meds, some are successful with supplements, etc. Lots of us just learn to live with it.

I haven't heard of insomnia presenting as the first symptom of CFS. I strongly support the advice above to get right to your GP. If you have apnea, for example, you could be waking a lot more times every night than you realize, which would cause extreme exhaustion. As Alex pointed out, this level of exhaustion is very dangerous for drivers.
 

xena

Senior Member
Messages
241
insomnia is really unpleasant, i hope you can find out what is causing it.
if you have been having post exertional malaise and fatigue for a few months, i would suspect it is linked to CFS. otherwise, i might look for another explanation.
 
Messages
6
Insomnia cannot be cured completely. But yeah, you can try some pills that can help you sleep.

But if you do not want to get addicted to pills then you can make some changes in your routine like you can avoid caffeine and any late meal.
 

morse27

Senior Member
Messages
123
Location
NORTH of FRANCE
sleep disorder is common in schoenfeld syndrom , after a vaccine contain adjuvant
no deep sleep can be saw in sleep recording (N3 and N4, normal range is 20 to 25 %)
sleep disturbance is not always in relation with psychologic problems and sometimes with serious brain injury
 
Messages
11
Insomnia is terrifying, and totally destructive to one's mental health. For me it kicked in about six weeks after I got sick with ME/CFS in 1991. Fortunately, it is easily treatable. I have been taking Trazodone by prescription ever since. It is a very inexpensive antidepressant with no side effects that I know of. My dosage has been stable for years, so it's not addictive.
 

maddietod

Senior Member
Messages
2,860
I've had insomnia for over 20 years, and it's not always easy to treat. I've trialled many sleep medications, including Trazodone (which causes very loud tinnitus, a contra-indication). They all have immediate unacceptable side effects, in me, at doses usually well under what's normally prescribed.

I'm glad it was easily treated in you. You're very lucky.
 

morse27

Senior Member
Messages
123
Location
NORTH of FRANCE
some ME/CFS are not , but have an other illness , ASIA SCHOENFELD SYNDROM its seem 95% of symptoms known in ME/CFS but its an other disease , you cant sleep for years , and feel in crazy world , and dying with several fatigue tiredeness more than you can have in high ME disease.
i you have lower 5% of deep sleep in your sleep recording , you know what i mean !
ASIA syndrom is similar with GULF WAR SYNDROM ,