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Grrr...Wake-up Nightly in a Hypervigilant State

Messages
69
Location
USA
No matter how much I sleep, when I sleep or where I sleep, I always wake-up feeling horribly sleep-deprived, with the following symptoms: wired, disoriented, tremulous, heart pounding, numb extremities and face, sore throat, considerable congestion, clenched jaw and hands, blurred vision, thirsty, headache, and abdominal pain. Forget restorative sleep...for me, it's toxic. And, over the past few years, I now wake-up nightly, roughly 2 to 4 hours after first falling asleep, in a hypervigilant state.

Sleep studies have provided little insight, other than presumed secondary fractured sleep architecture: shortened and delayed onset REM, alpha-wave and alpha-delta intrusion, and heightened arousals.

My hypopnea index is relatively normal. My BP and pulse are typically normal. And, my blood glucose levels are typically normal. Nothing consistently jumps out as an obvious correlate. Curiously, while I tested negative for MCAS years ago, I always wake-up congested.

What am I missing? Any suggested tests, therapies or supplements? Big thanks in advance!
 
Last edited:

Jyoti

Senior Member
Messages
3,408
Hi @RU72. Tell us what you are doing in terms of therapies or supplements already. That would be helpful. It sounds absolutely miserable--what you deal with nightly. I think many of us know a bit about that horror; I certainly do, so you have my sympathy. It is enough to make one truly crazy.
 

lenora

Senior Member
Messages
4,990
RU72.....Good Morning, although it doesn't sound too good. I've had this for a very long time and sleep is one of my biggest complaints. Each time I have steroids (I also have a type of Encephalitis, so don't know when there will be a major seizure and hospitalization will follow), anesthetics or a new cocktail of drugs, my sleep pattern is disrupted even more. I'm now 73 yrs. old and have been followed by sleep clinics since they began.

The fact for me is this: I have brain damage to that part of the brain that controls sleep. I have other illnesses in addition to ME (it was the 4th diagnosis), and damage was done during that time. I'm a very lucky lady if I get about 2 hrs./night. No napping, and I wouldn't mind as much if I could actually accomplish something during the nighttime hours. I no longer get upset about it, it's simply a part of who I am. On the one hand, I do get a lot of work done, which helps the hours fly by, and then do things like check in here. In MY case, nothing helped, not herbal, vitamins or supplements, nor did medicines. Well, that's not true....they would help for a max. of 2 nights and I've been as far as taking rohypnol while under medical supervision. I think I've tried everything, thus my acceptance of what "is." New sleep drugs are on the market, but I don't even bother any longer as I feel that each thing I try only serves to make things worse.

No, no one believes that I can go weeks on such little sleep, but my husband can attest to the fact that I do. I'll fall into a rather bizarre sleep of perhaps 45 min. when I have something hot in my hand. Thus, I've ruined many a keyboard while holding a cup of tea. I literally just pass out....no warning, but it has happened too many times for me not to notice. This, combined with the no energy aspect, is exhausting, but there is nothing that I can do.

We're all different in the amount of sleep we get, but I do notice while on this site, that there are others like me. Now if we could only get our doctors to believe it....my important one does, but so many others just look questioning. We're not normal in this regard.

If you're relatively new to this illness, then it may improve with time. Don't give up trying new meds, one never knows when you'll find success. However, if you do, please let us know. We're the night watchmen(women) of the world. It would be nice to have a break. Take good care. Yours, Lenora.
 

Wishful

Senior Member
Messages
5,855
Location
Alberta
Sleep is vital for clearing waste products from the brain. Maybe you really are suffering form toxic build-up. Maybe such build-up hampers the ability to sleep. I don't know whether there's a way to test for that.

I too developed a problem with waking up frequently (every 1.5-2 hrs). Usually, I can pee and fall back asleep. However, various factors, such as quickly-digested carbs eaten after noon, or physical or mental exertion after early afternoon will cause me to be unable to fall asleep again. I have to avoid reading and posting here past 3 PM or so, for that reason. I suggest experimenting with diet changes and activity changes. There might be something that is affecting your ability to sleep or the quality of sleep.

I think ME affects the astrocytes, which are what 'pumps out' those waste products during deep sleep. I'm not sure which immunomodulators affect astrocytes, but if you're looking for anything that might help, that's one possibility.
 
Messages
69
Location
USA
Hi @RU72. Tell us what you are doing in terms of therapies or supplements already. That would be helpful. It sounds absolutely miserable--what you deal with nightly. I think many of us know a bit about that horror; I certainly do, so you have my sympathy. It is enough to make one truly crazy.

Thank you for the kind words. Well, I was begrudgingly on Adderall for 10-years, but stopped roughly 3 months ago, because I have long felt wired and artificially stimulated, without the benefit of increased energy, attentiveness, etc. My dysautonomia doctor subsequently prescribed a cocktail of Midodrine, Propanolol, Buspar, and Fludrocortisone. I had to stop taking both Midodrine and Propranolol, because they were increasingly exacerbating my headaches, head pressure, and blood pressure. My vision has still not returned to pre-treatment and the increased head pressure and brain fog are impossible to manage. I also take Levothyroxine for Hashimoto's and recently began low dose naltrexone. Finally, I take various supplements, which I've either been on for sometime or taken in the past, without provoking addt'l symptoms. I've been making changes near daily without any benefit; may temporarily stop all supplements.
 
Messages
69
Location
USA
RU72.....Good Morning, although it doesn't sound too good. I've had this for a very long time and sleep is one of my biggest complaints. Each time I have steroids (I also have a type of Encephalitis, so don't know when there will be a major seizure and hospitalization will follow), anesthetics or a new cocktail of drugs, my sleep pattern is disrupted even more. I'm now 73 yrs. old and have been followed by sleep clinics since they began.

The fact for me is this: I have brain damage to that part of the brain that controls sleep. I have other illnesses in addition to ME (it was the 4th diagnosis), and damage was done during that time. I'm a very lucky lady if I get about 2 hrs./night. No napping, and I wouldn't mind as much if I could actually accomplish something during the nighttime hours. I no longer get upset about it, it's simply a part of who I am. On the one hand, I do get a lot of work done, which helps the hours fly by, and then do things like check in here. In MY case, nothing helped, not herbal, vitamins or supplements, nor did medicines. Well, that's not true....they would help for a max. of 2 nights and I've been as far as taking rohypnol while under medical supervision. I think I've tried everything, thus my acceptance of what "is." New sleep drugs are on the market, but I don't even bother any longer as I feel that each thing I try only serves to make things worse.

No, no one believes that I can go weeks on such little sleep, but my husband can attest to the fact that I do. I'll fall into a rather bizarre sleep of perhaps 45 min. when I have something hot in my hand. Thus, I've ruined many a keyboard while holding a cup of tea. I literally just pass out....no warning, but it has happened too many times for me not to notice. This, combined with the no energy aspect, is exhausting, but there is nothing that I can do.

We're all different in the amount of sleep we get, but I do notice while on this site, that there are others like me. Now if we could only get our doctors to believe it....my important one does, but so many others just look questioning. We're not normal in this regard.

If you're relatively new to this illness, then it may improve with time. Don't give up trying new meds, one never knows when you'll find success. However, if you do, please let us know. We're the night watchmen(women) of the world. It would be nice to have a break. Take good care. Yours, Lenora.

Thank you for the kind words and for sharing your story. Happy to hear that in spite of the sleep debt, you're still able to function (reasonably) well. I can manage most symptoms, but the lack of restorative sleep and progressive cognitive deterioration have been shattering. Even when I'm upright, I'm never truly awake. It's as if my brain's off switch has been permanently toggled.
 
Messages
69
Location
USA
Sleep is vital for clearing waste products from the brain. Maybe you really are suffering form toxic build-up. Maybe such build-up hampers the ability to sleep. I don't know whether there's a way to test for that.

I too developed a problem with waking up frequently (every 1.5-2 hrs). Usually, I can pee and fall back asleep. However, various factors, such as quickly-digested carbs eaten after noon, or physical or mental exertion after early afternoon will cause me to be unable to fall asleep again. I have to avoid reading and posting here past 3 PM or so, for that reason. I suggest experimenting with diet changes and activity changes. There might be something that is affecting your ability to sleep or the quality of sleep.

I think ME affects the astrocytes, which are what 'pumps out' those waste products during deep sleep. I'm not sure which immunomodulators affect astrocytes, but if you're looking for anything that might help, that's one possibility.

Big thanks for the response. It certainly feels like my brain is a toxic waste site. I'll have to do some exploring. I recently started low dose naltrexone, which I think has immune modulating properties. Not sure of the effects that med, plus an MTHFR mutation, would have on someone?
 

Jyoti

Senior Member
Messages
3,408
I am always in awe of people on this site who can grasp complex biochemistry. It mostly eludes me, now more than ever, when I really need it. That having been said, it sounds to me like you experience what I would call 'cortisol rushes' that wake you up. That used to happen to me every night. The question I asked, then, was: what is triggering it?

Which @Wishful was exploring as well, I believe. If it happens every night, two-four hours into your short sleep, then it may be something really easy to change in your routine, or more likely, something very complicated and hard to ferret out.

I have not managed that in my own case, but I have found a 'cocktail' that works to keep me asleep (with interruptions) for up to seven hours a night four or five nights a week. I can't complain. When I do wake up in that hyperaroused state, I often take Serious Relaxer by Wishgarden, Cortisol Manager by Integrative Therapeutics or Maral Root tincture, all of which often help me get back to sleep.

I don't know if any of those would help you, @RU72, but I thought it was worth sharing just in case you wanted to try any of them. You are taking a fair number of things right now, and I don't know much of pharmaceuticals or how they interact. I do know that awful feeling in the night, though, and I can't tell you how sorry I am that you are dealing with it every night.
 

overtheedge

Senior Member
Messages
260
a medical professional told me not long ago that sleep apnea often causes people t wake up with their heart pounding, has something to do with the adrenaline released to wake the person from sleep because oxygen is dangerously low, I have this too, is especially bad when i sleep on my side with my neck angled up or down, try relaxing completely and breathing with your neck at different angles while lying down n some will cause snoring sounds while others wont

having read around this site ive seen it said that cfs often causes sleep apnea and some people have just sleep apnea but it presents like cfs

you can see ENT's or neurologists about this kinda thing or just google sleep doctors in your area
 

Jyoti

Senior Member
Messages
3,408
Interesting, @overtheedge. I was told, as well, that I might be triggering the cortisol/adrenal surges with the positioning of my neck, complicated by suspected CCI or other cervical pathology, cutting off oxygen intake. I did find that by doing all I could to extend my neck (small pillow to help hold my head in extension) I cut down on the scary awakenings, so it seems likely there was some truth to it.
 
Messages
69
Location
USA
a medical professional told me not long ago that sleep apnea often causes people t wake up with their heart pounding, has something to do with the adrenaline released to wake the person from sleep because oxygen is dangerously low, I have this too, is especially bad when i sleep on my side with my neck angled up or down, try relaxing completely and breathing with your neck at different angles while lying down n some will cause snoring sounds while others wont

having read around this site ive seen it said that cfs often causes sleep apnea and some people have just sleep apnea but it presents like cfs

you can see ENT's or neurologists about this kinda thing or just google sleep doctors in your area

Thanks for responding. I've had numerous sleep studies, with very mild sleep apnea. Low hypopnea index. No benefits from a c-pap machine though and pulse ox suggests relatively normal oxygenation. I'm exploring - painfully slowly - whether it's adrenaline related, a cortisol imbalance or some sort of nightly toxic dump. Be well.
 
Messages
69
Location
USA
I am always in awe of people on this site who can grasp complex biochemistry. It mostly eludes me, now more than ever, when I really need it. That having been said, it sounds to me like you experience what I would call 'cortisol rushes' that wake you up. That used to happen to me every night. The question I asked, then, was: what is triggering it?

Which @Wishful was exploring as well, I believe. If it happens every night, two-four hours into your short sleep, then it may be something really easy to change in your routine, or more likely, something very complicated and hard to ferret out.

I have not managed that in my own case, but I have found a 'cocktail' that works to keep me asleep (with interruptions) for up to seven hours a night four or five nights a week. I can't complain. When I do wake up in that hyperaroused state, I often take Serious Relaxer by Wishgarden, Cortisol Manager by Integrative Therapeutics or Maral Root tincture, all of which often help me get back to sleep.

I don't know if any of those would help you, @RU72, but I thought it was worth sharing just in case you wanted to try any of them. You are taking a fair number of things right now, and I don't know much of pharmaceuticals or how they interact. I do know that awful feeling in the night, though, and I can't tell you how sorry I am that you are dealing with it every night.

Thank you. Yes - after a drought, I've been trying to hit this condition harder with various meds / therapies. Tough to know if the current cocktail will have long-term benefits. In the short-term though, I'm pretty much bed bound. Another poster suggested Seriphos and L-theanine for cortisol imbalances, which I plan to begin next week. We shall see. Did you ever figure out what was causing your cortisol spikes?
 
Messages
69
Location
USA
Interesting, @overtheedge. I was told, as well, that I might be triggering the cortisol/adrenal surges with the positioning of my neck, complicated by suspected CCI or other cervical pathology, cutting off oxygen intake. I did find that by doing all I could to extend my neck (small pillow to help hold my head in extension) I cut down on the scary awakenings, so it seems likely there was some truth to it.

Maybe a soft cervical collar?
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Curiously, while I tested negative for MCAS years ago, I always wake-up congested.

What am I missing? Any suggested tests, therapies or supplements? Big thanks in advance
This doesnt sound good. Sleep should be a help, not a stumbling block. But having fought sleep issues, too, they can be very real.

Most doctors do not test adequately for MCAS. They test histamine and tryptase only and leave it at that. Were you tested for chromogranin A, prostaglandin D2, or prostaglandin F2?
Well, I was begrudgingly on Adderall for 10-years, but stopped roughly 3 months ago, because I have long felt wired and artificially stimulated, without the benefit of increased energy, attentiveness, etc.
Adderall can definitely be a factor. It messes with your brain and depletes nutrients. Looking into long term effects and how to replenish whatever it's changed might be a part of a solution.
My dysautonomia doctor subsequently prescribed a cocktail of Midodrine, Propanolol, Buspar, and Fludrocortisone. I had to stop taking both Midodrine and Propranolol, because they were increasingly exacerbating my headaches, head pressure, and blood pressure. My vision has still not returned to pre-treatment and the increased head pressure and brain fog are impossible to manage.
Propranolol has had a negative effect on sleep. Shortened nighttime sleep by 2 hours.

You might look into Huperzine A, a supplement that increases acetylcholine. Pyridostigmine, (Mestinon) does too.
I also take Levothyroxine for Hashimoto's and recently began low dose naltrexone
Timing of both if these can affect sleep. Moving either from .morning to evening or evening to morning may make a big difference. I recently moved LDN to morning and it helped sleep improve.
Another poster suggested Seriphos and L-theanine for cortisol imbalances, which I plan to begin next week. We shall see. Did you ever figure out what was causing your cortisol spikes?
That may have been me. Seriphos can fix inappropriate cortisol production - I've seen it work in different ways in folks with different sorts of cortisol problems Theanine is calming to the nervous system.

You might also have catecholamines tested. Something could be off decreasing sleep. Dopamine or GABA?

Your other symptoms sound like infection or immune dysregulation, maybe. Have you been screened for all the typical ME/CFS related. Infections?

Best wishes in sorting this out - I suspect it's not just one thing....
 

Wishful

Senior Member
Messages
5,855
Location
Alberta
I did find that by doing all I could to extend my neck (small pillow to help hold my head in extension) I cut down on the scary awakenings, so it seems likely there was some truth to it.

Since you've found something that does make a difference, following up on that might be better than trying to explore other options at random. Cervical/spinal issues do cause various symptoms, and there do seem to be new research discoveries in that area. Maybe try to find a good doctor who knows about that sort of problem?

Tough to know if the current cocktail will have long-term benefits.

My preference is to minimize drugs, especially multiple drugs. Even if each drug does serve a valid purpose, interactions might cause other problems. Drugs that claim benefits based on some theory are fine, if that theory applies to you. Since you don't know what's going wrong, which theory applies? Some diseases are treated effectively by drug cocktails, but as far as I know, that's for very specific, identifiable diseases, which your problem doesn't fit into.

My other preference is to occasionally minimize all possible factors, to hopefully identify things that are making my symptoms worse, or allow me to test something that might reduce my symptoms. I recently developed a sensitivity to meat, so I'm going back to a very minimal diet, even leaving out little snacks and condiments that I knew were safe years before (that can change). I think the sensitivity started gradually after I started taking Evening Primrose Oil which seemed to improve my sleep. I'll have to see if stopping that oil will allow me to eat meat again eventually.

Boring, boring diet! :grumpy:
 

gbells

Improved ME from 2 to 6
Messages
1,500
Location
Alexandria, VA USA
Sounds like it could be anxiety and poor sleep is common with ME. I've successfully used diluted organic essential lavender oil (1-2 drops per 6 oz water, stir and sip) for anxiety. Sleep improved with C3 curcumin time release and grounding.
 

lenora

Senior Member
Messages
4,990
Thanks, Wishful. I do know that each hospitalization (and there have been 8 in the past year) leads to a breakdown of my sleep patterns, if I have any that is. I do love to read, and that's the only good/bad habit I could break, but I'm not so sure that I want to. I can't concentrate very well at the present time, so can't get through my usual 4 or 5 books/wk. I guess as habits go, it's fairly cheap....still it does mount up. I could try diet changes because our mail meal is once/day about 2:30 or so. I'll have a cup of warm milk later (almond milk, I'm not a milk lover). However, mixed with vanilla and artificial sweetener (herbal type, but I can't think of the name of it), it's a great drink for late in the evening....or early enough that you aren't in the bathroom all night.

To be honest, I'm tired of trying things....this has been a very long haul and most of my doctors have thrown up their hands. I don't blame them, there simply doesn't seem to be an answer. See, now I feel sleepy, but don't be deceived. I'll be wide awake by the time I hit the bedroom. Thanks for your input. I do urge you to keep trying with anything new or even new ideas. I've just done more than my fair share of that and I'm well, tired! Good wishes are being sent your way. I hope we can expect good word from your side soon. Yours, Lenora.
This doesnt sound good. Sleep should be a help, not a stumbling block. But having fought sleep issues, too, they can be very real.

Most doctors do not test adequately for MCAS. They test histamine and tryptase only and leave it at that. Were you tested for chromogranin A, prostaglandin D2, or prostaglandin F2?
Adderall can definitely be a factor. It messes with your brain and depletes nutrients. Looking into long term effects and how to replenish whatever it's changed might be a part of a solution.
Propranolol has had a negative effect on sleep. Shortened nighttime sleep by 2 hours.

You might look into Huperzine A, a supplement that increases acetylcholine. Pyridostigmine, (Mestinon) does too.
Timing of both if these can affect sleep. Moving either from .morning to evening or evening to morning may make a big difference. I recently moved LDN to morning and it helped sleep improve.
That may have been me. Seriphos can fix inappropriate cortisol production - I've seen it work in different ways in folks with different sorts of cortisol problems Theanine is calming to the nervous system.

You might also have catecholamines tested. Something could be off decreasing sleep. Dopamine or GABA?

Your other symptoms sound like infection or immune dysregulation, maybe. Have you been screened for all the typical ME/CFS related. Infections?

Best wishes in sorting this out - I suspect it's not just one thing....

Hi @ Learner1.....I'll return a favor to you. I have found that using Guafenesin is a great help in not only liquifying secretions (think of Mucinex) but also in helping with dry mouth. This was one of the very early meds used for ME and since it helped me so much, I decided to stay on it. You'll find it's much cheaper if you buy the off-store brand under the name of Mucous-Relief, Guafenesin, or something close to that. Take an entire pill and a full glass of water ) if you can tolerate a full glass, that is. It relieves the congestion of allergies, makes it easier for us to breathe and I find that if I take on about 6:00 p.m. or so that it will last all night, even if you do get up.

Anyway, I gave you the name I did b/c it's much cheaper than Mucinex and when you're using it as often as we are, its worth one's while to find the cheapest. Try it twice/day and that should be enough. Yes, it came out b/c they thought that if they moved the fluids in ME that it would stop the side-effects. Well, that was a bust, but it did help those of us with allergies (which can develop at anytime....they tend to get worse year by year and, as you know, are a pain in the neck). Please bear in mind that I'm 73 yrs. old so it's stands to reason that I would have more than the average person's things wrong with me. I shouldn't, I've led a clean life, but I do. Still, it could be a lot worse, so all is not lost. I have to stay out of the hospital, though, that's detrimental to anyone's health....being in those dreadful inflatable beds and having no chance to recover in between times. On the other hand, I'm thankful that my life was saved on more than one occasion. Yours Lenora.
 

Wishful

Senior Member
Messages
5,855
Location
Alberta
Have you looked into alpha gal?

Interesting possibility. The ticks known to carry it aren't in Alberta, but the allergy has been reported in places without those ticks, so it's not completely impossible. I don't suffer the typical symptoms of it; it seems to be an increase in my general ME symptoms. I think it peaks around 9 hrs after eating meat, which sort of fits. However, I seem to get the same reaction from chicken, which doesn't have alpha-gal. I'm waiting until the present symptoms (finished off the last of my bacon) fades, and then I'll try peanut butter again to see if that triggers it too (I think it did, but not sure). So, more experimentation needed, but I'll definitely keep alpha-gal in mind. Thanks.
 
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