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Does your ME cause sleep inversion?

Does your ME cause sleep inversion?

  • yes

  • no


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leokitten

Senior Member
Messages
1,542
Location
U.S.
One of the most debilitating aspects of my ME is that the disease causes me major sleep inversion. On most evenings, after significant enough exertion builds up from the previous day(s), I primarily get a very strong brain wired-but-tired feeling and my gut starts becoming irritated.

I also get some worsening of other ME symptoms and, if I do fall asleep, I sometimes get intense psoriasis itching which will wake me up. All of this together is definitely PEM.

Without taking some medication to help me fall asleep these symptoms will make me feel wired and awake all night until they start subsiding early in the morning. If I keep adding cumulative exertion and do not aggressively rest these symptoms then become stronger and any sleep medication stops having any effect. My body quickly inverts to sleeping during the day and staying up all night.

If I aggressively rest and do as little as possible within a day or two I do not get these symptoms anymore at night. I am constantly having to reset myself, where exertion causes this inversion and then I have to stay up all night and the next day to get so exhausted and try to overcome the symptoms the next evening so I can fall asleep.

It doesn't always work and its so frustrating. For me this problem is one of the main reasons why my ME make it so difficult to work and try to live a normal life.
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
I am constantly having to reset myself

I do it a bit differently where I try to walk my bedtime back incrementally. With a lot of effort, I feel like I'm making progress for about a week and then all of a sudden, I'm up until 4 am again and then either sleep the next 12-13 hours (with 2 hour interruptions) or sleep 4 hours, wide awake for 3, sleep for 3. It keeps going back and forth between these patterns.

It's very frustrating and very difficult, for instance, to explain to someone why I don't return their phone calls during business hours when I miss several days in a row of business hours or why I always need an appointment for the last slot of the day.
 
Messages
759
Location
Israel
I have all these symptoms....it's like you described me down to the smallest detail!

It's the best description of my life with this crappy sleep problem that I have ever seen!!!
I even get the itching though a lot milder because I have no psoriosis, when feel really bad from lack of sleep.

I am curious to know if you work during the day?
It sounds like you are part time and have to get up in the mornings half the week.?

I can not work but this is still really hard for me. I have a dust allergy so need to be able to hoover my apartment more than once a week. This neighbours would rightly complain if I do it after 9pm. The walls of the apartment are thin.

Then I need the bank once a month, need to be awake at normal hours for the doctor, shops, if I order online- awake for deliveries, benefit office, bank and my Mum and goes to bed at 10pm, while I only wake up at 4pm. My Mum has dementia and needs to be able to talk to me.
It's more debilitating then anyone realises


Do you work?
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
I am curious to know if you work during the day?
It sounds like you are part time and have to get up in the mornings half the week.?

I can not work but this is still really hard for me. I have a dust allergy so need to be able to hoover my apartment more than once a week. This neighbours would rightly complain if I do it after 9pm. The walls of the apartment are thin.

Then I need the bank once a month, need to be awake at normal hours for the doctor, shops, if I order online- awake for deliveries, benefit office, bank and my Mum and goes to bed at 10pm, while I only wake up at 4pm. My Mum has dementia and needs to be able to talk to me.
It's more debilitating then anyone realises

Do you work?

I’ve had ME for six years and worked full-time until the end of 2018. It was an absolute nightmare and the sleep problems I’ve described above were one of the main contributors to it, but like I’m sure you’ve done I just worked so hard to try and manage all the symptoms and my body going out of control.

For the first two years I didn’t take any medication for sleep, but it got so bad that beginning of 2015 I started having to. I was able to manage so so with medication to put me down for about two years but my ME steadily kept getting worse because I was constantly pushing and crashing almost every week.

Starting in 2017 managing the ME sleeping problems became more difficult but I kept soldering on. I steadily deteriorated until I couldn’t manage the worsening symptoms anymore and lost the ability to function. Sleep meds became useless. I now can only work part time on a flexible schedule.
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
Here's a copy of a post I made from back in 2013, which seems to fit with this thread...
Thanks Wayne. Were you having a delayed sleep issue too before taking the melatonin? Thank you!
Hi Ocean,

Yeah, in a major way. It seemed like I could feel just horrible for the entire day, and then all of a sudden around 9:00 - 10:00 p.m., things would shift, and I would start feeling a little bitter, and even have a bit of energy. It was a relief to feel better, but it generally meant not knowing when I would finally get to sleep. I remember it generally ranged from 12:30 - 2:00 a.m. or so, but could easily be even later. Occasionally, I wouldn't go to sleep till close to sunrise. As much as I tried to avoid this, I finally settled into accepting it for what it was, and tried to make the best of a time where I at least didn't feel quite so miserable.

I was grateful to find Clonazepam, which helped me restore some normal sleep times, but the price was to wake up each morning with a "Clonazepam hangover", sort of nauseous and sluggish. But I drank coffee back then to pull myself out of it. I never felt coffee was very good for me, and was able to mostly stay away from it once I quit taking the Clonazepam. Discovering how well melatonin worked for me was instrumental in my being able to get off of the Clonazepam. The other piece was taking low-dose hydrocortisone (Cortef). Our cortisol levels normally peak about 4-6 a.m., and when I was able to supplement in the early mornings, I no longer started "waking up" around 9-10 p.m. at night.
 
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leokitten

Senior Member
Messages
1,542
Location
U.S.
I was grateful to find Clonazepam, which helped me restore some normal sleep times, but the price was to wake up each morning with a "Clonazepam hangover", sort of nauseous and sluggish. But I drank coffee back then to pull myself out of it. I never felt coffee was very good for me, and was able to mostly stay away from it once I quit taking the Clonazepam. Discovering how well melatonin worked for me was instrumental in my being able to get off of the Clonazepam. The other piece was taking low-dose hydrocortisone (Cortef). Our cortisol levels normally peak about 4-6 a.m., and when I was able to supplement in the early mornings, I no longer started "waking up" around 9-10 p.m. at night.

I used melatonin to help sleep for a year or so but it stopped working and I would wake up. Melatonin also caused some worsening of ME symptoms for me because I think it negatively impacts our existing metabolic dysfunction. Melatonin tells the pancreas to stop making insulin which then makes ME aerobic glycolysis dysfunction worse than it already is.

I’ve also avoided any benzo or z-drug sleep meds because I think they will cause more problems than they solve long term.
 
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Messages
759
Location
Israel
I was helped by melatonin for a short time. Then after a few months I got a side effect of long periods and ovarian cysts whenever I took them.
So I would take melatonin on and off to lesson the gynacological side effects but after a while it's became a lot less effective. Now at age 42 I start getting problems with my periods if I just take the melatonin a week!
I have never met anyone else with this side effect from melatonin.

Low dose cortisol also did not help me but I am glad I tried it. I have low morning cortisol too.

I tried Seriphos and it did not help but maybe did not try it long enough....never understood if it is supposed to be taken in the morning or evening.

Behavioural techniques are useless.

Avoiding blue light helps a little but not much.
Magnesium doesn't help at all.
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
I was helped by melatonin for a short time. Then after a few months I got a side effect of long periods and ovarian cysts whenever I took them.
So I would take melatonin on and off to lesson the gynacological side effects but after a while it's became a lot less effective. Now at age 42 I start getting problems with my periods if I just take the melatonin a week!
I have never met anyone else with this side effect from melatonin.

Since melatonin is a hormone (as well as a neurotransmitter) maybe it has some direct or indirect effects on other hormones
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
The other piece was taking low-dose hydrocortisone (Cortef). Our cortisol levels normally peak about 4-6 a.m., and when I was able to supplement in the early mornings, I no longer started "waking up" around 9-10 p.m. at night.

Would taking low-dose hydrocortisone have any negative long-term effects on PwME?

It could be that ME causes our cortisol levels to be too low, due to metabolic dysfunction in the adrenal gland cells that make it or something else. This would make sense given the symptoms I only seem to experience at night. As cortisol levels, particularly in the evening, would dip too low and therefore our immune system becomes overly activated, causing higher levels of inflammation etc.
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
Would taking low-dose hydrocortisone have any negative long-term effects on PwME?
I've taken about 20 mg/day for about 20 years now, and have not noticed any negative effects, but lots of positive effects. However... that's me. Others have not had this kind of experience, and even had some pretty negative reactions. That's why I believe any experimentation should be done slowly and cautiously. -- I might just mention a rather curious thing...

I made an inadvertent discovery a couple days ago. I ate a big bunch of grass-fed beef liver on Sunday (my intuition literally catapultted me out the door that morning to buy some), which gave me a remarkable sense of being "grounded". I then perused some reviews of various grass-fed organic organ supplements on Amazon, and was struck by the variety of results people have gotten from taking them.

These benefits included better sleep, better hair, and skin, and probably most prominantly, better energy levels. Some said their autoimmune conditions got better, and a lot of other comments indicating a new kind of homeostasis for their bodies. Even though I ate that liver on Sunday, I'm still feeling the effects of it today. -- None of this may be relevant to what you're dealing with, but it sure sounded like my results and those of others were similar to what people who take adaptagens get. Which of course can improve adrenal function, and perhaps circadian rhythms.
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
I’ve also avoided any benzo or z-drug sleep meds because I think they will cause more problems than they solve long term.
@leokitten
You're absolutely right .... they're deadly if you try to get off them, and repercussions down the road are hellish.

When things get really bad sleep-wise and I know that if I can't at least force a drop off, even if I wake up later during the nite or day or whenever it happens to overtake me, I'll take 1/4 to 1/3 of a Unisom, which usually works like a charm.

Doesn't always keep me asleep, but it gets me to sleep, and I keep .50 mg of melatonin and 100mgs of magnesium glycinate on the bedside table, and just kind of hand-dance on the table top til I find them and dry drop them while praying for oblivion. It doesn't work immediately, but I'm usually still drowsy from the Unisom and the melatonin potentiates what's left of it eventually, the mag eases me down, and I'm gone again.

It's a hellish way to live and leaves no room for even a semi-normal life, but it's what I've got and I'm willing to work with it in any way it allows. The little buggery bustard .....
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
@Wayne
I ate a big bunch of grass-fed beef liver on Sunday (my intuition literally catapultted me out the door that morning to buy some),
This is soooo strange.

About maybe 1 1/2 months ago, I woke up thinking "desiccated beef liver". It was almost a compulsion, a sort of OCD response. I couldn't stop the thought, I didnt know where it cam from, but more and more, it seemed to make sense.

I spent the rest of that day researching and trying to find info sources that weren't selling it, or a Paleo diet, or a supplement that contained it, or a book or blog about it. I did find some decent sources, including Weston A Price, and as you noted abve, the reports on it were impressive.

I spent the day after that researching and, where possible, calling or emailing companies that sourced their liver from New Zealand, possibly the last place on earth that sells truly hormone and antibiotic free, pasture-fed, rigidly gov't vetted beef liver, and I found several. I settled on one, ordered the caps, and have been taking it, starting mega slowly, ever since.

I noted vague, subtle changes even on 1 capsule a day, which is what I started at, out of the 6 a day recommended.

And recently I've observed that my hair loss has slowed dramatically, my energy is much better, my sleep is still .... well, my sleep, but not quite as bad. My spirits have been better, my better days more frequent. I can't say enough about it, although apparently I've bored at least person on these boards to tears by doing just that.

So I'll add my somewhat less-feeble-than-before voice to your much stronger one, and see if that helps get the word out. It's not a miracle cure or the Holy Grail, but it's the closest thing I've found.

Next I'm going to try the desiccated bone marrow, which also has remarkable properties. Will report back when I have input on that.

And it was good bumping into you @Wayne, I've been missing you and wondering where you'd gone. So this was a doubly pleasant surprize. :):) :hug:
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
I have severe sleep inversion. Currently going to bed at 7 AM, sleeping all day, get up around 6 PM. When I work, I have to get up around 5 AM! So, I just don't get much sleep when I work. Usually I work 4 days in a row and then have a break. So, I manage to get to bed around midnight or 1 AM work nights, get 2-4 hours of sleep. Then, if I have time, I take a nap in the afternoon/evening, usually for about 2-3 hours. I do pretty well this way, but don't think I could sustain it beyond 4-5 days.