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Weird Paradoxical Sleep Pattern

Messages
16
Location
Central Illinois, USA
I had sleep problems that started with some neurological problems prior to my developing CFS. I, like many with CFS, have unrefreshing sleep plagued by frequent wakings and bouts of insomnia. Quite frequently I will startle awake several times a night as if my body let loose with a bunch of adrenalin.

I have been diagnosed with sleep apnea and shallow nighttime breathing. I was not obviously deficient in nighttime oxygen since I do not snore and have no extreme daytime sleepiness, apart from the fatigue. It was only during a sleep study that it was discovered that my oxygen levels were dipping quite low (in the mid 80's and occasionally a little lower) for short periods. I am know trying to get use to a CPAP machine, which is not conducive to having insomnia :(

Anyway, one thing that I find paradoxical is that I the more sleep I get the worse I feel that next day (greater CFS symptoms, higher pain levels, etc...). On nights that I have broken sleep, as if I have too much adrenalin, I have less fatigue symptoms and less pain the next day (although I have to be careful not to do too much). I have been trying to put some type of connection together. Maybe since I was getting lower amounts of oxygen for a longer time on nights that I received more sleep, thus the overall worsen of symptoms the next day. Or it seems that the more actual time lying in bed directly relates to inactivity symptoms such as pain, fatigue, etc... Hmmmmm

I was just curious if anyone else had similar experiences.
 

Plum

Senior Member
Messages
512
Location
UK
I have sleep problems too although have not been through sleep studies etc. I keep trying to figure out why my patterns vary so much. Issues which I do think are of importance is cortisol - which would tie in with you adrenaline theory. A lot of people with ME have reversed cortisol patterns resulting in high levels at night which would mean a possibility of high adrenaline at night too.
Something else to look into is blood sugar balance. Do you suffer from hypoglycaemia etc? Often as blood sugar drops we get an adrenaline surge to try and stimulate our bodies to get 'sugar' from stored sources. This is also noted in some people who get up in the middle of the night to pee.
Often, a more restful night can be accomplished by focusing on blood sugar balance although I know for some this is way easier said than done - like me!
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I have total un-refreshing sleep since I became sick 8 years ago. I have the same problem as you in that the better I seem to sleep the worse I feel the next day. I have been saying this for years and have no idea why. I just went through a hell week of adrenaline surges which kept me up basically the entire night and I had to work the following days. It was tough but I was able to function despite the fact of the horrible sleep.
I had a sleep study done 3 years ago and they said I had no apnea and great oxygen levels. I agree with plum about the hormones in that my entire sleep problem has to do with cortisol and adrenaline issues. At times when I have these surges I am also extremely hungry even though I had eaten dinner. I try to keep a can of almonds close by just in case.

I would actually rather wake up all night because for some reason I am able to function better the next day even though I am tired...I am not saying I want to lay awake all night but when I seem to sleep like a rock is when I feel so terrible....So yes I do have this same experience.
 

Plum

Senior Member
Messages
512
Location
UK
The issues we seem to be talking about are adrenal issues and I'm wondering if you've spent any time looking into this area? I myself find nuts do nothing to my hunger - a boiled egg or a sausage does well though! I have also noticed with blood sugar control that 2 things can happen:
1. I eat dinner early and then don't have a snack - blood sugar drops early hours of morning
2. I eat dinner late, no need for snack - blood sugar still drops after body finishes digesting this huge meal while I'm asleep.
The best sleep I've had has been in the days I used to have peanut butter on toast before bed!
I too know what you're both meaning about the crap night - better day than good night.
My thoughts on this is - crap night = adrenaline surges, adrenaline still in system next day and somehow gets you through. Good sleep = body starts to repair, uses up vital nutrients leaving you depleted and actually more tired, achy etc.
This illness is a bugger!
 
Messages
16
Location
Central Illinois, USA
Thanks for the thoughts on this subject Plum & Sox. I am sorry that you both experience this sleep pattern but it is comforting to know that I am not the only one. I mentioned it to my doctor once and he thought it was very unusual. I do suffer from gastrointestinal issues including gastroparesis since CFS. I do have a blood glucose monitor that I use occasionally to see where my levels are. I bought it when I thought I was getting hypoglycemic. I will keep it next to my bedside and try to check my levels after I "startle' awake just to see if it registers low. Its real fun startling awake wearing the full face CPAP :eek:

I do know that I do sleep better if I eat something, especially certain sweets shortly before bedtime. Probably due to insulin.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,089
Location
australia (brisbane)
insulin from carbs would help push tryptophan into serotonin and melatonin production. I have had similar experiences where i just could drop off to sleep even with meds but had a carb craving and ate something and then fallen asleep. generally im on low carb diet. SO i think there is something to carbs helping sleep, but it is hit and miss.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I have so many symptoms of adrenal insufficiency..done a lot of reading on it . I have had the saliva test done twice and both times it was flat throughout the day but normal at night. I know when I have the nights of adrenaline I am going to crash soon after. I am stress dosing on the cortef now in the hopes of avoiding an all out crash. Yeah..the peanut butter on toast is a great snack. I agree that it is the left over adrenaline that keeps me going the next day..in fact I think I run on adrenaline most of the time because whenever I try to rest and relax I never can..I always seem to have that motor running in my chest..
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Anyway, one thing that I find paradoxical is that I the more sleep I get the worse I feel that next day (greater CFS symptoms, higher pain levels, etc...). On nights that I have broken sleep, as if I have too much adrenalin, I have less fatigue symptoms and less pain the next day (although I have to be careful not to do too much). I have been trying to put some type of connection together. Maybe since I was getting lower amounts of oxygen for a longer time on nights that I received more sleep, thus the overall worsen of symptoms the next day. Or it seems that the more actual time lying in bed directly relates to inactivity symptoms such as pain, fatigue, etc... Hmmmmm

I was just curious if anyone else had similar experiences.

Can you re-phrase the large paragraph, not sure I understand everything you are trying to say.

I was found to have obstructive sleep apnea, got a hold of the study result, low enough oxygen that I had my Dr prescribe oxygen (2 liters/minute) into my cPAP machine. I also use an oxygen concentrator also, not bottles. FYI

GG
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I mentioned this on another thread recently. Most of the time, when I get a broken sleep, I feel better with better functioning the next day. The "hit by a large truck" feeling the next morning is less. What I don't get are any surges through the night though. During the night I often have to get up to go to the loo and pass water. This can happen up to 8 times are night.

I'd been assuming that this could be due to cardiac problems overnight, a deep sleep meaning that I had the problem, with a broken or light sleep meaning that I wasn't deeply asleep enough. Wondering if people waking up with surges are having heart or circ problems and this is waking them up? Where-as people who sleep through the problem are having less oxygen/circulation and feel worse off for it?

I've often felt that when I sleep something "bad" happens in that I go to bed feeling the best all day and awake feeling the worst. My saliva cortisol levels are lowest in the morning, then rise during the day. They are OK at night but not high.

Not sure about the effects of food although a midnight banana does help my restless legs problem. I'll pay more attention to this.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
Do you dream a lot when you sleep soundly? I often have a lot of 'chaotic' dreams, sometimes nightmares. I sometimes get more rest laying awake with the radio running. If I doze off while the radio is running, I can have really weird dreams, though.

Do you only sleep heavily when you are especially exhausted? This could leave you tired the next day because you still needed more sleep.

I used to have blood sugar problems as night. I find a snack of carbs and a little protein to be helpful. Toast and peanut butter, crackers and cheese, and cereal (hot or cold) and milk are common snacks.
 

Ruthie24

Senior Member
Messages
219
Location
New Mexico, USA
I think you may be onto something with the theory about the increased "adrenaline" at night causing you to wake up and then still being around to keep you moving better the next day as well. I seem to have the same pattern you are describing. Will frequently operate like this for some time and then crash big time with heavy sleep and waking with the "just been steamrolled" feeling.

I have reactive hypoglycemia too, and when my CBGs drop it definitely triggers those other ANS reactions as well.
 

Old Salt

Rowing the boat
Messages
70
Location
S/W Pa.
I know from many years of experience, the issue is "gut dysbiosis"! ie. toxins in the gut and when dealt with, die off is the issue. Terrible food reactions, often occur between 2 and 4 am. Wheat is a common culprit and for me, citric acid, it's in everything. Corn syrup is an enemy. The problem stems from the gut. Lyme related????
 

soxfan

Senior Member
Messages
995
Location
North Carolina
It seems as though many people experience this same thing! sleeping pretty good but waking up like you have been hit by a truck. I also feel something strange happens during my sleep because I too most of the time go to bed feeling pretty good. I did have the study done but there is no denying that there is definitely some type of problem going on. I am fairly certain it is my ANS system being very dysfunctional because it is that way during the day too. Just the slightest thing can get my heart pumping...I can't handle stress at all...good or bad...I feel better while away on a trip...lots of Adrenal dysfunction symptoms.
When I have the surging it is usually right off when I get into bed or it will wake me around midnight and go all night. I slept pretty good last night waking a couple times but falling back to sleep pretty quickly. Will be interesting how I feel today since upping the Cortef.
 
Messages
16
Location
Central Illinois, USA
I think you may be onto something with the theory about the increased "adrenaline" at night causing you to wake up and then still being around to keep you moving better the next day as well. I seem to have the same pattern you are describing. Will frequently operate like this for some time and then crash big time with heavy sleep and waking with the "just been steamrolled" feeling..

Ruthie, I have seemed to cycle with this pattern for some time. I will operate with the night "adrenaline" for several days then eventually I will get real tired in the evening, sleep longer with less broken sleep, then wake up and feel terrible with tremendous fatigue.

What scares me is that I am still getting worse on the amount of extreme fatigue when it hits. That is why I am searching for some type of correlation that will at least help me find something to level it off for now and stem the progressive decline.
 
Messages
16
Location
Central Illinois, USA
It seems as though many people experience this same thing! sleeping pretty good but waking up like you have been hit by a truck. I also feel something strange happens during my sleep because I too most of the time go to bed feeling pretty good....Just the slightest thing can get my heart pumping...I can't handle stress at all...good or bad...I feel better while away on a trip...lots of Adrenal dysfunction symptoms.
When I have the surging it is usually right off when I get into bed or it will wake me around midnight and go all night.

Sox, I understand not being able to handle stress at all. I was in law enforcement for 28 years...cool as a cucumber...now it is just the opposite. I has to take an early retirement due to ME issues. My stress response is 'over the top' on many issues. It is as if the ANS has 'retrained' itself to respond poorly, throughout the day and night.

When I first started the nighttime startling it was exactly as you describe, it would usually occur once shortly after falling asleep then I would be able to get back to a more normal sleep. If the startle would happen later on in the night it would usually go on for the rest of the night, resulting in terribly poor sleep but better daytime functioning.

I had someone suggest to try a neural training program to help with the ANS response...who knows.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I slept pretty good last night but I am feeling really tired right now and my eyes are burning as if I didn't have enough sleep. I am certain my sleep quality is extremely poor. I am not getting the deep sleep to wake up refreshed. I have tried so many things over the years to help but I most of the time wake up extremely hungover even on the tiniest dose.

I am using Kavinace and Klonopin right now or else I would never fall asleep. The minute I lay down it begins...the wired feeling.
It is awful not being able to handle stress of any kind. I have a very limited social life due to the fact that I can't handle the interaction. My ANS is in really bad shape. I am seeing the doctor tomorrow and I will come back here and let you know if he had any ideas on what to do about this....

I also go through the adrenaline cycles and then is seems to take forever to get back to whatever "normal" is.
 

Plum

Senior Member
Messages
512
Location
UK
The ANS problems you talk of are due to the Sympathetic NS being overly stimulated. This is the same in adrenal fatigue. I mention this in case you want to learn more - it's an easy thing to look up.
The SNS governs our fight or flight response, ups adrenaline andmakes us feel panicky. I too am much more stressy than I used to be. The slightest thing causes me to freak out.
Things I have come across to help this:

Breathing properly - proper, deep, lung breathing BUT slowly. Hyperventilation syndrome can occur with ME. I need some Osteopathic manipulation to help with this as it's still something I have to work on daily.
Perrin Therapy is designed to turn off SNS
Yoga helps too as does meditation.

If you consider the other side of the ANS the parasympathetic NS this is turned off as our SNS is in overdrive. The PNS governs what is called 'rest and digest' so no wonder we have gut problems and can't get enough sleep. A balance between the 2 is needed for health.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
Yeah...I have read up a lot on this. I downloaded a book on CFS called CFS Unravelled by Dan Neuffer which is excellent. It explains all of this and really helped me understand that this is my main problem. It is so true that my body just simply can't calm down after it has been stimulated. It can be from work...social activity...shopping...just about anything. My insides over react so easily and I really have no clue on how to stop this from happening. If it gets really bad I will take a bit of Klonopin to help calm my insides down. It isn't even my brain in overdrive but my insides. I can feel it happening.

I have tried to meditate but it is hard to concentrate when your chest is vibrating and heart feels like a sledgehammer pounding back and forth. . I can't say that I have any gut problems as sleep is definitely my worse issue. For me the fatigue is the most troublesome problem of this illness for me.
There are times when I am talking to co workers and almost feel out of breath because my body is getting into overdrive mode so it is interesting you mention the Hyperventilation syndrome because that is exactly what it feels like. I never knew what the deal was with that.

My body is always in a tug of war between the flight/fight and calm down. I don't think my calm down system works anymore.

I am learning so much great information from this thread!
 

Plum

Senior Member
Messages
512
Location
UK
There's a guy called Buteyko who has written a few books on Hyperventilation Syndrome especially in people with Asthma. But it works for anyone. There's also various clips on youtube.
I think the biggest thing is to spend time concentrating on yr breathing and making sure your out breathe is longer than yr in breath. Also work on diaphragmatic breathing rather than upper chest breathing. This also helps calm the SNS and aids in relaxation.
The Bohr effect is also a very important issue to look into as it explains why a longer exhalation is important to push Oxygen into cells:
http://www.normalbreathing.com/CO2-bohr-effect.php

If you suffer from hyperventilation it's a good idea to get yr rib cage checked out by an osteopath or chiropractor.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I guess I'm one of the lucky ones in that I don't get these adrenal surges and years ago I was tested for hyperventilation. Feel relaxed at night but still get the broken sleep and wretched mornings.

Does anyone know what it the physical sytem overnight that rests the cortisol? I go to bed feeling almost human but have that cortisol slump over night that results in my "living death" mornings.

For people who are hyped at night have you tried the old remedy that people with CFS use Seriphos (which is supposed to lower night cortisol)?