Does ME/CFS cause nightmares?

[LaurelW]

I have rarely had nightmares during my life. But when I'm on the worse end of the health spectrum, I tend to have an occasional very bad dream. I wake up really upset by what I was dreaming, and sometimes am scared to go back to bed. I have trouble talking and it's difficult to explain to family members what is going on.

It seems to me that there is a huge physical component to this. What is it about this illness that makes this happen? Sometimes these occur when I'm more stressed, but not always. Sometimes it's just out of the blue.

It would help if I could tell my family that this isn't all in my head.

 

[adreno]

I've found that high NE can cause nightmares.

 

[LaurelW]

What is NE?

 

[SOC]

I have rarely had nightmares during my life. But when I'm on the worse end of the health spectrum, I tend to have an occasional very bad dream. I wake up really upset by what I was dreaming, and sometimes am scared to go back to bed. I have trouble talking and it's difficult to explain to family members what is going on.

It seems to me that there is a huge physical component to this. What is it about this illness that makes this happen? Sometimes these occur when I'm more stressed, but not always. Sometimes it's just out of the blue.

It would help if I could tell my family that this isn't all in my head.

I don't think it's a common symptom, at least. Still, I've been there, and it's awful.

Before ME/CFS (or perhaps it was the very early stages -- before we could diagnose), I had a very long stretch -- years -- of horrifying nightmares that had no connection to my life. I was genuinely afraid to sleep. I also had pre-sleep hallucinations. There's a name for it, but I can't remember, when you "see" something in that stage where you're just falling asleep, but are not quite all the way asleep. They were not really bad, just a little scary, like a plate-sized spider falling from the ceiling onto my bed. I'd leap out of bed and yell for a minute or two until I woke up enough to realize that a plate-sized spider was unlikely in my part of the world. Poor hubby!

The nightmares were much worse. I'd wake up in tears nearly every day. It was awful. My doc finally prescribed ADs, which did seem to help. Either the nightmares weren't so bad, or I didn't remember them. It wasn't perfect. I didn't have good or normal dreams or long and refreshing sleep, but at least I wasn't afraid to go to sleep.

The best thing, though, came many years later when I was prescribed trazodone for ME/CFS sleep dysfunction. What a huge difference! Finally, I was sleeping normally -- a normal length of time with normal dreams. It was heaven.

My guess is that nightmares not associated with something in the waking life (trauma, stress) is something neurochemical, so ADs helped to some extent. While also an AD, trazodone is an effective sleep enhancer at lower doses. That may be because it increases stage 3 and 4 sleep, which I suspect was a major issue for me.

See this article on trazodone here at PR.

 

[SOC]

What is NE?

Probably norepinephrine, a neurochemical.

 

[LaurelW]

Hi SOC! Nice to hear from you. Thanks so much for you reply. I do take trazodone as one of my sleep meds, and the nightmares are rare these days, but pretty disturbing nonetheless. I did have three days in a row this week where people talked about their problems to me. I'm hoping this is an anomaly and I'll have to be better at setting boundaries in the future as well.

 

[SOC]

Hi SOC! Nice to hear from you. Thanks so much for you reply. I do take trazodone as one of my sleep meds, and the nightmares are rare these days, but pretty disturbing nonetheless. I did have three days in a row this week where people talked about their problems to me. I'm hoping this is an anomaly and I'll have to be better at setting boundaries in the future as well.

Sounds like a good idea. Sometimes other peoples' problems can work their way into our sleep lives.

If the nightmares continue, you might consider asking your doc for a very small increase (12.5 mg) in trazodone dose. Sometimes it can make that little difference between occasionally disturbed sleep and normal sleep.

 

[Leopardtail]

I have rarely had nightmares during my life. But when I'm on the worse end of the health spectrum, I tend to have an occasional very bad dream. I wake up really upset by what I was dreaming, and sometimes am scared to go back to bed. I have trouble talking and it's difficult to explain to family members what is going on.

It seems to me that there is a huge physical component to this. What is it about this illness that makes this happen? Sometimes these occur when I'm more stressed, but not always. Sometimes it's just out of the blue.

It would help if I could tell my family that this isn't all in my head.

Laurel,

Vivid dreams are a common symptom of ME - your nightmares are probably a version of that. ME has been shown to lower levels of Melatonin thus changing how deeply you sleep. Dreams/Nightmares occur during light sleep. MILD anti-depressants (herbal or medical) might help with this. Melatonin might also help.

Good luck,

 

[SickOfSickness]

Most of us take herbs and/or medications to fall asleep or stay asleep. Some of them can cause nightmares. When I searched for different herbs, people's experiences varied, what caused 1 person nightmares was fine for another person. I think it is related to many neurotransmitters, not only norepinephrine.

 

[Aerose91]

I know I'm a little late on this thread but @LaurelW I suffer from the same thing and am wondering what is going on. After a crash about 6 months ago I started getting very vivid and disturbing dreams and nightmares every single night. This has never stopped. Every night I go to sleep I know.in in for something disturbing. However there is the occasional night where I sleep a little better and no dreams- how wonderful that is.

I didn't change anything though, this phenomenon was (as all of my other disease progression) 100% related to energy expenditure. I was thinking it has some blood sugar/adrenaline connection but I can't get it under control. It sucks so bad!

 

[justy]

same problem here to varying degrees over the years. Not so many nightmares now but have had a hwole week of VERY intense and exhausting dreams that feel like they go on all night.

Dreaming is related to Acetylcholine being high... there was another thread on this somewhere...

 

[Aerose91]

Very exhausting dreams that go on all night. Very good way of putting it.

 

[Misfit Toy]

5HTP and melatonin caused horrible nightmares for me. 5HTP was the worst. Now, even off of them years later, I have intense dreams that feel real. For me, it's related to hormones. But, you are not alone.

 

[Tired of being sick]

We dream because that is all we can do......

our sleep centers are shot...

never see a morning of refreshed cells

without stage 3,4 sleep our bodies will eventually give up

Xyrem is the only drug on Earth that can induce stage 3,4 sleep

body builders use it and you see how huge they get.......

In fact, I believe lack of growth hormone is the main culprit behind all CFS/ME/fibromyalgia symptoms

 

[Little Bluestem]

When I first saw the title of this thread, I wondered if you meant daytime nightmares or nighttime nightmares.

 

[Leopardtail]

@LaurelW

This is a tough one to answer without expensive scans or blood tests. The stage of sleep you are in is considered to be regulated by the nervous system but seems likely to be linked to levels of Melatonin/Dopamine/AcetylCholine.

Personally I suspect the root cause is likely to be some combination of Melatonin being too low or Cortisol too high. My experience with Melatonin was:

• If it's far too low you sleep is very disturbed / very light / non-existant (first depth of sleep)
  
• if it's a little too low you dream very vividly and/or have nightmares (second depth of sleep)
• if it's normal you sleep well
• if too high you have difficulty waking in a morning and fall back to sleep.

I have noticed with friends that they sometimes get nightmares when they take very light doses of melatonin, but it improves with stronger doses (never take more than 5mg, most people need 0.3-1mg). For me that dreaming occuered when I took too little.

One obvious question, do you also suffer restless leg syndrome?

 

[Little Bluestem]

And if you have a skewed sleep cycle you will have too little melatonin at night and dream very vividly and/or have nightmares. Then you will have too much in the morning and have difficulty waking. If you lay down during the day you will often fall to sleep (but if you are taking things for energy during the day, you still will not sleep well.)

 

[Allyson]

Dreaming is related to Acetylcholine being high... there was another thread on this somewhere...

Interesting Justy thanks - anything we can do about that ?

Ally

 

[Leopardtail]

And if you have a skewed sleep cycle you will have too little melatonin at night and dream very vividly and/or have nightmares. Then you will have too much in the morning and have difficulty waking. If you lay down during the day you will often fall to sleep (but if you are taking things for energy during the day, you still will not sleep well.)

On that subject I found it useful to keep a sleep diary for a week, recording when I went to sleep, when I woke up and whether I was sleeping daytime - this was helpful both to me and my doctor.

 

[Allyson]

Sounds like a good idea Leopardtail and I tihnk there are apps that can do that for you now too

I suggest anyone who does thins also keep a record of upright time that day - for OI /POTS purposes - and compare them with payback in subsequent days

Ally