ME/CFS: Sleepers vs. Insomniacs, Why the differences?

[TheMoonIsBlue]

Has anyone (this would likely be asked by an ME/CFS patient with insomnia!) asked a "real" ME/CFS specialist what they think the difference is between patients who can sleep on their own, unmedicated, and those who can not fall/stay asleep without medication? (Granted,I am sure it will be non-refreshing even for those who can sleep without medication)

I am wondering, has any doctor been able to pin down some difference between "sleepers" and "non-sleepers" on a genetic, chemical, etc. level?

I am thinking, this could also be a major factor for who is able to tolerate certain medications.

 

[caledonia]

I'm not sure exactly, but I do know many of my sleeping problems can be linked to adrenal exhaustion. I'm a "sleeper" - sleep about 8 or 9 hours at night, then I need a big 3 or more hour nap in the afternoon. Those times are all relative because I also have a rapidly forward moving sleep cycle. It moves forward 1/2 hour or more per day, so I'm often have night and day reversed.

My mom on the other hand was lucky if she could put 4 hours of sleep together. Unlike me, she was on a beta blocker which I found out later depletes melatonin, so that was probably part of it.

I did get benefit from a sleep study in that I found out I had periodic limb movement disorder - my legs twitched dozens of times an hour screwing up my sleep. I declined Xyrem and instead greatly increased magnesium which helps a lot. I found out later that if you have adrenal exhaustion, you can't regulate salt and magnesium levels like normal, so you're depleted.

Once my adrenal treatment is completed, my sleep is supposed to get a lot better - as in, it won't move forward anymore and I won't need the big nap. I'm starting to see improvement in the salt/magnesium regulation, about 9 months in.

The one big thing that really screws up my sleep is an allergy to corn. I've fixed that by scrupulously avoiding it, even in the tiniest amounts. You would be amazed by all the things that have corn hidden in them. I even have to have my thyroid medicine compounded because of it.

 

[TheMoonIsBlue]

"I also have a rapidly forward moving sleep cycle. It moves forward 1/2 hour or more per day, so I'm often have night and day reversed."

So do I , Caledonia!

 

[Scarlett]

My sleeping pattern seems to vary depending on my physical condition. When I'm tired but wired I have dreadful insomnia, not being able to get to sleep till 4 or 5am, and then if I'm woken up I can't get back to sleep again despite being exhausted. Then I will have periods of being a sleeper - sleeping 15+ hours a night and not being able to fully waken during the day. Seems to go hand in hand with other physical symptoms.

I'm not on any meds, the only thing I take is Nytol or equivalent herbal type sleeping tablet if I'm at the end of my tether. Didn't realise there was a distinct difference with other people between being a 'sleeper' and an insomniac, I assumed everyone had the same fluctuations as me.

 

[heapsreal]

i think i might be in your sub group, i seem to have got the immune/infection side under control but my adrenal hormones are low and supplementing with them seems to worsen my insomnia so going the herbal adrenal way now and see what happens but i think adrenal exhaustion also has alot to do with my insomnia but i also think that insomnia can be worse from cytokines caused from infections as well, plus maybe some neurological damage to the hypothalamus from infections also may play apart, crikey! im screwed, lol, need drugs to sleep.

I'm not sure exactly, but I do know many of my sleeping problems can be linked to adrenal exhaustion. I'm a "sleeper" - sleep about 8 or 9 hours at night, then I need a big 3 or more hour nap in the afternoon. Those times are all relative because I also have a rapidly forward moving sleep cycle. It moves forward 1/2 hour or more per day, so I'm often have night and day reversed.

My mom on the other hand was lucky if she could put 4 hours of sleep together. Unlike me, she was on a beta blocker which I found out later depletes melatonin, so that was probably part of it.

I did get benefit from a sleep study in that I found out I had periodic limb movement disorder - my legs twitched dozens of times an hour screwing up my sleep. I declined Xyrem and instead greatly increased magnesium which helps a lot. I found out later that if you have adrenal exhaustion, you can't regulate salt and magnesium levels like normal, so you're depleted.

Once my adrenal treatment is completed, my sleep is supposed to get a lot better - as in, it won't move forward anymore and I won't need the big nap. I'm starting to see improvement in the salt/magnesium regulation, about 9 months in.

The one big thing that really screws up my sleep is an allergy to corn. I've fixed that by scrupulously avoiding it, even in the tiniest amounts. You would be amazed by all the things that have corn hidden in them. I even have to have my thyroid medicine compounded because of it.

 

[free at last]

Well i was going to suggest anxiety,but you seem certain its not that, in my case im sure it was a combination of the ME symptoms and anxiety.Infact anxiety can take on different forms, some of which may not at first appear to be. If you constantly are thinking i need more sleep, if you constantly think IF I DONT GET THIS AMOUNT OR THAT AMOUNT OF SLEEP ILL FEEL TERRIBLE. If you constantly look at the clock upon waking to see how much sleep you havent had, and then struggle to get back to sleep, with the realization that you will feel terrible if you do not get back to sleep.Then that is a form of anxiety,

it is a sleep disorder of the mind, a worry disorder. I did all those things mentioned and it got so bad that at my worst i was on 4 hours sleep per every 48 hours, would spend days lying in bed trying ( but mostly failing ) to drop off. the more i tried, and the more i realized i needed it badly the worse the problem became. If i hadnt have sorted this problem out, i think i may have died. and certainly wouldnt have made the slow partiall recovery that i did with the ME symptoms. I tried a couple of sleep meds zopiconle and another i cant remember, but they didnt help a lot.

A side effect of taking two amitriptylene just as i was dropping off, produced a very strong drowsy effect that was different to the drowsy effect i had from zopiclone. I came to belive that the Amitriptylene somehow mixed with my bodys own sleep chemical, so when the drug started during deep sleep upon waking, it had a double wammy effect. For the life of me i just couldnt wake up, litteraly felt like a ton of bricks. Well it worked right from the first time i took it. If i took two pills a few hours before i noticed the effect was greatly diminished, which is why im convinced the effect of taking the drug just before sleep was a crucial part of it mixing with the bodys own sleep chemical. Im sure there must be others out there who could benefit from this knowledge but strangly as of yet, i havent found many.

most say they are intolernt of it for one reason or another. Someone once said they didnt like it because it left them drowsy for half the day. Well that was also true in my case. But because i was close to complete collapse. that problem was like nothing compared to what the lack of sleep was doing to me. So i suppose it depends how seriouse the sleep disorder is. Mine was seriouse, and i found a cure. which i can only thank my lucky stars that i did. or i would not have seen my children grow up. after years of taking it ( cant remember how long ) As i started to recover from the ME illness. ( took ages BTW ) I Eventually was taken off them. But i continued to sleep normally at this point. and now i sleep fine. sometimes i sleep too much, especially when i get the ME symptoms, as i still occassionaly do.So ive been both a non and heavy sleeper all through this. both sides of the coin. I can tell you the heavy sleepers have it easy. as the zombie comments you talk about i completely understand. I was like the walking dead back then. It still frightens me when i think back. Hope some of this info helps anyone reading this.

 

[ukxmrv]

The Moonisblue,

When you become an "insomniac" what happens? Sorry, just trying to work my brain through this. In my own case I get a delayed sleep problem but once asleep I'm fine and get my best sleep between 6 and 11am.

I also go through times when I can get to sleep at a reasonable time and then long periods of delayed sleep. Had always assumed it was cortisol related (as the 24 hours tests showed cortisol higher at night, but not too high).

 

[TheMoonIsBlue]

Hi Ukxmrv, I guess when I say "Insomniac" I should clarify, I'm talking about ME/CFS people who can't fall asleep without the aid of some sort of medication.

Cortisol could very likely play a role in the sleep cycles. There is a something I think called a "non 24-hour sleep wake disorder", where some people's sleep/wake cycle is much longer, sometimes like 36 hours. I don't know what causes it, I doubt they've studied it much at a genetic level.

I don't know it is all so complicated, I am sure hormones, inflammation, and VIRUSES, all play a role together. Having a neurotropic virus(es) and who knows what else I suppose affects different people, differently. Antivirals (not antiretrovirals, this was a while back) did improve my sleep for a while before I had ADR's to the meds and had to stop, strangely one of the ADR's was that my insomnia got worse! (other people have reported similar problems, I think I developed a lot more inflammation)

 

[ukxmrv]

Thanks TheMoonisBlue,

How do you tell the difference personally between insomnia and delayed sleep? I'd guess that insomnia is when one doesn't sleep at all in 24 hours or so. Is that what happens to you?

 

[TheMoonIsBlue]

Yes, I think people with true "delayed sleep phase syndrome" don't really have insomnia.....they can sleep......just at very abnormal hours. And their hours tend to stay the same I think (vs. non-24 hour sleep/wake disorder)

But with ME/CFS who knows.......I'm sure so many go through phases of sleeping well, sleeping poorly, can't sleep, delayed sleep, etc.

It would be interesting, if the ME physicians like Peterson, Bell, Cheney, etc. have found any difference between hypersomniacs and insomniacs.

Sleep medicine is still in the dark ages.

 

[heapsreal]

i dont like or fit into the grouping they use commonly ie problems initiating sleep, maintaining sleep, waking up too early and this i suppose related to delayed sleep phases. The there are thos that just dont sleep deep enough. I seem to fit into all of them. If i dont get a good 8 hours sleep i feel like crap and if i do mostly through meds, i feel alot better. I hate it when i have had 3 hours sleep and someone says maybe thats all the sleep u need mmm im stuffed so its not all the sleep i need. When we look at the original diagnosis of ME, it means inflammation of the muscles,brain and spinal cord and i can really understand where they are coming from, anxiety over sleep is just crap from the psychobabblers, i have had nights where i just didnt give a crap about sleep and i sat up all night, gee u know i felt like crap, my brain was on fire sizzling in my skull, i lay down for alseep, now i had been awake for 30hrs Plus, so i should sleep for ages, well after 2 hours of shitty light dream sleep i wake up. This is how i feel after working a 12 hour night shift from 7pm to 7am and this is how i feel when at home and use nothing for sleep or sleep meds have stopped working. I then have to go and do another shift with 2-3 crappy hours of sleep under my belt, sleep is crap. I have finally been on a roster of 10hr shifts and not working 12hr shift and no nights, the latest i work is midnight 4 times in 7 weeks and my sleep is just the same. Its not unusual for me to go to work any shift with 2-3 hours crappy sleep behind me. sometimes the meds work great and i function fine but at times they do nothin. thats me in a nut shell

 

[Sallysblooms]

For years I didn't sleep well. A few hours here and there. I now sleep 10 hours a night and a nap. I finally got doctors that know about good blood testing and hormones, supplements.

I take good compounded hormones and good supplements that made my CFS MUCH better. Not much of a problem. I succumbed to POTS two years ago and I am now fighting back from that. Refreshing sleep is key. Blood testing and supplements are very important also, we have to be supported in every way.

 

[Crappy]

Sally

Do you know what they are testing and monitoring with you? and what you use to try and regulate the dis-regulation?
What has made the biggest difference for you?

Thanks

 

[Sallysblooms]

Hormones are so important so they are always testing them. Keeping them balanced with the best bioidentical gels and compunded pills. 5HTP has made a huge difference along with SAMe. My Seratonin and Vit D were LOW!!!!! They are both in a good range now. That was wonderful. Magnesium powder is good too. My B12 was very low and that is very good now. Many things are monitored. Twice a year. I get more blood tests if needed.

 

[Marg]

ME/CFS : Sleepers vs. Insomniacs, Why the differencees?

Once my adrenal treatment is completed, my sleep is supposed to get a lot better - as in, it won't move forward anymore and I won't need the big nap. I'm starting to see

What is your adrenal treatment if I may ask?

I have my days and nights mixed up a lot and at those times I feel well at night.

I know I have way too much adrenaline.

I never had much luck with melatonin but maybe I should have worked on my adrenals first.

TIA

 

[Sallysblooms]

I take many things to help the adrenals but Adrecor is one. Really good. I am on Thyroid from the compounding pharmacist also. I will think of more things we do to help.

 

[klutzo]

I think I am exactly the type of sleeper you are looking for. Before I was diagnosed, I once went 4 days with zero sleep. I was unable to walk unassisted, suffering from awful vertigo, consciousness and people's voices were fading in and out as if in an echo tunnel, I had horrible nausea, and more, but I could not fall asleep. Friends took me to the ER, and I was hospitalized. I found out later that I could have died, since 4 nights in a row is considered about the max you can live through. BTW, the idiots at the hospital dx'd me with an inner ear infection, but also gave me a sleeping pill, thank God. It took many more years for me to get the correct diagnosis.

I fall asleep at exactly 11:15 pm every night now, thanks to 3 things.
1. The drug Clonidine for my high BP, which also has a strong sedative effect.
2. My CPAP machine, which helps me fall asleep in about 2 minutes, instead of taking an hour, like it used to.
3. L-tryptophan in huge doses at night (3 grams in 2 doses of 1.5 grams each) which prevents waking up with panic attacks every time I had a nightmare, like I used to.
(why don't I use 5-HTP like another poster? I wish I could, but it is a much stronger vasoconstrictor than L-tryptophan, and is dangerous for those with high BP or any other heart risks or issues).

I wake up at exactly 8:15 am now too. The bad news is that I am up for an hour between 2-3 am every night. I have to get up to take more meds and more tryptophan, and I must stay up awhile, or the meds reflux and burn my throat so badly, I can't sleep the rest of the night. Losing one hour of sleep is much better than losing the rest of the night.

FWIW, several of my docs have told me this is due to my sympathetic nervous system being so dominant, which is typical in FMS (which was my first dx, before Lyme and CFS were added). In the sleep lab, awake brain waves were piled on top of the few deep sleep waves I produced, like having one foot in sleep and the other in wakefulness. This is called the alpha-delta sleep anomoly and is ubiquitous in FMS patients. I would love to know if a study has been done on CFS/ME patients without FMS regarding their sleep lab patterns, to see if they are the same as in FMS.

klutzo

 

[taniaaust1]

Has anyone (this would likely be asked by an ME/CFS patient with insomnia!) asked a "real" ME/CFS specialist what they think the difference is between patients who can sleep on their own, unmedicated, and those who can not fall/stay asleep without medication? (Granted,I am sure it will be non-refreshing even for those who can sleep without medication)

I am wondering, has any doctor been able to pin down some difference between "sleepers" and "non-sleepers" on a genetic, chemical, etc. level?

I am thinking, this could also be a major factor for who is able to tolerate certain medications.

I used to have hypersomina with the CFS (sleeping often over 23hrs per day for months on end) to nowdays insomina (Ive gone more then 2 days without sleep at times). Im currently only able to get to sleep a lot of the time just before day break (and if i miss going to sleep then, I cant sleep till the night after). The hypersomina was when i was in a far worst state CFS/ME wise.

I are medication senisitive (MCS) .. I cant remember if i had MCS back when I had extreme hypersomina thou. (In my own case, taking melatonin often has a strong postive effect on me, so I assume Im very deficient in it).