Night Sweats and Exhausting Dreams?

[PallasKat]

Hello Everyone! I am new to this forum....but I have already learned so much from reading your posts

My doctor and I just recently came to the conclusion that I have probably been suffering from CFS/ME for about 4+ years. We have been approaching my issues as though they were hormone-based for years, but I never responded at all to any treatments.

One of my main torments has been chronic night sweats - the kind where you wake up shivering, PJs drenched, blankets and sheets drenched, muscles aching, head throbbing. These have happened pretty much 4 out of 5 nights for the last 5 years. Needless to say.....they leave me exhausted. Sometimes I have to change my PJs and blankets twice per night.

What accompanies these sweats are extremely busy dreams. In these dreams I am always panicking to get somewhere, working in a chaotic restaurant, walking for miles in the sand, flying too fast, dropping from the sky, climbing over treacherous obstacles or screaming in anger and frustration. My husband tells me that I have started talking and yelling in my sleep.

Has anyone else gone through this? If so, has anything worked for you?

(I know it probably sounds like I need some serious cognitive therapy - and I agree....but I had to leave my therapist after 7 years. I cannot work much anymore and am uninsured, so I could no longer afford her rates).

 

[justy]

Hi @PallasKat and welcome to the forum. I have myself suffered from night sweats and very vivid, frightening or difficult dreams for many years - they get worse when my other symptoms are worse or if I overdo it. I think there are many threads on PR about night sweats and vivid dreams. You could try searching these terms in the search box at the top of the page.

I'm not sure that anything has worked for this - apart from getting an awful lot of rest so that I am pacing correctly and not overdoing it. I presume with the night sweats that other possibilities have been ruled out by your doctor first?

I first started having then at about age 36- was told it couldn't be hormonal as I was too young - now im 44 and if I mention it my GP he just says 'it's your age' - well if it wasn't my age at 36 how can it be my age now??!!
Hopefully someone else will pop in with some suggestions for what may have helped them.

All the best
Justy.

 

[adreno]

High norepinephrine can cause night sweats and nightmares. Rather common in ME.

 

[Hanna]

Babesia infection causes also night sweats.

 

[PallasKat]

Thank you so much @justy and @adreno ! Yes, my night-sweats started in my late thirties too - and became progressively worse - I am now 47. After blood tests, my doctor reported that my hormones were "normal" but that it still had to be perimenopause - we tried 2 different kinds of birth control pills to "even out" my progesterone and estrogen, but both made me extremely depressed within one week. I have a history of clinical depression, and the hormones seemed to "override" my antidepressant. My doctor did not want to risk my mental health, so she took me off the birth control.

All my blood levels for thyroid, glucose etc. have been normal for the last two+ years. We tried every kind of herb & supplement and acupuncture (which I could not tolerate - too painful - and did not give any relief after multiple treatments).

The only test I have not been able to do is a sleep study. Without insurance, it costs over $1500 out of pocket. I do not have insurance because I am on a program with the pharmaceutical company that makes Cymbalta - (the only antidepressant that has worked for me) and I receive all my medication free of charge. If I get insurance that I can afford, I will not be able to afford the Cymbalta - I would be required to take the generic, which I tried and does not work for me. (This is a typical dilemma in the U.S. even after the Affordable Care Act).

Of course Cymbalta is a SNRI @adreno , oddly my night sweats started and progressed while I was taking no antidepressants at all - so I wonder if anything would actually change with my sleep were to go off that medication.....that's a big question. I did not know that high norepinephrine was common in CFS/ME.

Resting and not overdoing it is a whole new concept for me - I have always been as active as possible, but now I really have to watch myself.

Thank you again!,

PK

 

[Tired of being sick]

Coming from a Veteran of this issue I will give you a pointer or two

Wear the least amount of clothing to bed as possible(naked would be ideal)

Do not cover up unless you have to in order to fall asleep

now, when you wake up drenched, take the covers off and fall back asleep

after this you will wake up cold ,so then, just cover back up and go to sleep

This is a never ending cycle but I found dealing with it this way makes me less frustrated

Good luck P Kat

 

[PallasKat]

Thank you so much @Tired of being sick - I will give your system a try!

I have found these fabulous light weight blankets that wick away the moisture and don't overheat. They are Calvin Klein Plush @ Amazon.com. I don't even bother using a top sheet anymore (since it just ends up sticking to me and feeling like a sheet of ice). I have two of these blankets for me and one for my Hubby.

When my first blanket is too damp in the middle of the night - I switch it out, and I don't have to bother Hubby. By morning my first blanket has dried out completely and my second blanket will be dry by mid-morning. Needless to say, I wash them QUITE regularly, and they always come out of the laundry like new.

My PJs are always lightweight and also made with a wicking fabric like Rayon/spandex or Modal/spandex - sadly, 100% cotton gets too icy when drenched.

It's these little systems that can save a person's sanity.

P Kat

 

[Daffodil]

night sweats are common in other autoimmune diseases as well. it could also indicate that your body is trying to fight an infection. i believe it also occurs in some cancers.

curiously, my night sweats stopped when I was put on long term antibiotics. who knows why?

my doctor asked me to get a Babesia test but it was negative.

 

[PallasKat]

night sweats are common in other autoimmune diseases as well. it could also indicate that your body is trying to fight an infection. i believe it also occurs in some cancers.

curiously, my night sweats stopped when I was put on long term antibiotics. who knows why?

my doctor asked me to get a Babesia test but it was negative.

@Daffodil - that is really interesting about the antibiotics....I will pass that on to my doctor. It also seems that a Babesia test is in order too, which hasn't really come up before

 

[Daffodil]

@Daffodil - that is really interesting about the antibiotics....I will pass that on to my doctor. It also seems that a Babesia test is in order too, which hasn't really come up before

my doctor recommended the Babesia FISH test, which is available through Igenex.

 

[PallasKat]

my doctor recommended the Babesia FISH test, which is available through Igenex.

Thank you soo much

 

[Aerose91]

If I overexert, physically, cognitively, emotionally etc.. I get weeks or months of restless sleep and incredibly uncomfortable nightmares. The one thing consistent with all of them is I'm in an extremely uncomfortable situation. It takes 2 or 3 hours to fade once I wake up, but it eventually does. The only thing I can do to help it is to rest as much as possible and just deal with it.

 

[BadBadBear]

I was going to say the same as Adreno - possibly norepinephrine. My night sweats and scary dreams have settled down to a large degree as the hyper-adrenalization has calmed down.

 

[minkeygirl]

@PallasKat I'm sure you looking into this but some pharmaceutical companies have programs for people who have insurance but is income based. I mean even with insurance some meds are outrageously expensive.

I know the makers of Lyrica have one where, depending on your income you can get the medication free or $25/month.

 

[PallasKat]

@PallasKat I'm sure you looking into this but some pharmaceutical companies have programs for people who have insurance but is income based. I mean even with insurance some meds are outrageously expensive.

I know the makers of Lyrica have one where, depending on your income you can get the medication free or $25/month.

Hi @minkeygirl! Yes I actually receive my Cymbalta directly from Eli Lilly through the Lilly True Assist program - Free of charge. The application process was not that hard - especially since I had two very good doctors advocating for me. If anyone is interested, here is the link to the application: http://www.lillytruassist.com/_assets/pdf/lillycares_application.pdf

Thank you so much!!
P-Kat

 

[WoolPippi]

The only test I have not been able to do is a sleep study. Without insurance, it costs over $1500 out of pocket.

Don't worry about the sleep study. That would only show wether you have apneu or snore or have restless legs or have lack of REMsleep.
Your busy dreams tells you you have REM sleep and the other three are unlikely in your case and your husband would know anyway.

High norepinephrine is more likely, it's something I suffer from too. I have no solution (yet)
Something triggers the body into a stressreaction at night... (?)

With me it's typically after 4,5 hours of sleep: three neatly sleep cycles. Just as the Deep Sleep cycles are completed and there should be 2 or 3 more cycles with just REM in them.
For what it's worth: to get from nonREM to REM norepinephrine needs to rise a little. But not so much you start sweating.

So perhaps we start producing it a little but the body doesn't stop in time. Or it doesn't break down what's been made well enough (a DNA mutation called MAO A).
I don't know. It's all theorizing.

I've tried removing all conceivable triggers: noise, musquitos, low blood sugar, lowering stress during the day, dust mite allergy, mineral insufficiencies, raw meat before sleep, escellent sleep hygiene.
Nothing has worked consistently. (sorry to talk so much about me, it's the only reference I have to offer)

About the hormonepills you took: they might have been progestins, not Progesterone. Progestins are in all anti-conception pills and have side effects, because the molecule is not the same as the one your own body produces.
The molecule your own body produces is used to make the long term anti-stress hormone cortisol. It's not so much a female sex hormone, it's a fundamental human hormone.

 

[WoolPippi]

I was going to say the same as Adreno - possibly norepinephrine. My night sweats and scary dreams have settled down to a large degree as the hyper-adrenalization has calmed down.

How did you accomplish that?
Plus I'm happy for you

 

[BadBadBear]

How did you accomplish that?
Plus I'm happy for you

I dunno what fixed it, really. At the time I had some pretty bad symptoms when I had an adrenaline dump - extreme anxiety, my hands would shake like I'd seen a ghost, sweats, etc. I had nighttime adrenaline dumps around 4 a.m. that seemed related to gluconeogenesis.

I was on Florinef for a while for POTS type symptoms, and that seemed to help to some degree. When I went off Florinef, symptoms came back but they weren't as bad. Being off of caffeine definitely helps. Eating a moderate carb diet seems to help (versus low carb, which I was doing before). T3 thyroid med seems to calm my system down overall. It's probably been more a series of small improvements and improvements to the overall system than a single thing.

I still have days where I have mild symptoms, but have not had night sweats in a long time. Maybe once or twice this summer. I have not had shaky hands in probably 6 months or so either.

 

[biophile]

This may not help but in my experience I usually only experience night sweats or bad dreams if I have way over-exerted or consumed a food or medication that did not agree with me. Newer patients may still have to learn what those triggers are.

 

[Aerose91]

This may not help but in my experience I usually only experience night sweats or bad dreams if I have way over-exerted or consumed a food or medication that did not agree with me. Newer patients may still have to learn what those triggers are.

I get the same and the exhausting dreams are horrible. Night sweats can be dysautonomia as well which is common with this disease.