Neuroimmune flares following sleep: any more insights?

[gm286]

Recap:

• I have DSPS (Delayed Sleep Phase Syndrome) for last 17 years, developed at the time that I caught a strong flu-like illness. My ANS (autonomic nervous system) cannot "shift into the sleep drive" easily. It does not trigger a release of melatonin effectively or early enough.
• Along with DSPS I develop, throughout the night and in the morning, a sort of neuroimmune flare. I am my worst self before 11AM.
• Symptoms of this neuroimmune flare include: sore / dry throat, dry eyes, IBS flares, diffuse aches and joint pains, accompanied most especially by bone-deep fatigue and negative affect (restless and emotional as I shift out of sleep and awaken).

This pathology and its symptoms are less intense while following a strict ketogenic diet, yet that is tiresome and exhausting all to itself.

I cannot tell where the dreams fit in: as part of the DSPS/ANS dysfunction or as part of a neuroimmune flare but they are smack-dab in the middle of this nightly process: they are tiresome, long-winded, and stressful, involving me in non-horrific but intolerable situations nonetheless, as if my body is indicating exhaustion while it sleeps.

The stress dreams / disturbed sleep sound a lot like a feature of ANS dysfunction in that they call back to a hypervigilant and hypersensitive state, these in turn, a feature of a greater neuroimmune problem.

The neuroimmune problem seems to be working beneath the ANS and dream problems: my body telling me it is exhausted would imply that it is contending with a neuroimmune problem at the core.

I think what has me stumped and a little preoccupied is that I do not always see ME/CFS patients describing this sort of mechanism specifically. To me this is like a delayed-onset yet nightly recurrence of post-exertional malaise. In that case, sure, my "neuroimmune flare" would fall back to being a part and parcel of ME/CFS and I would proceed thinking of it as such.

By the time 4-5PM comes around I am usually low on cognitive, muscular, and digestive flares and symptoms. But then, what exactly explains the flip-side of this picture?

Why is my body contracting and producing nightly flares? What is it about sleep that brings on these neuroimmune symptoms? Is this a type of PEM which people rarely often discuss? Is this just a form of moderate ME/CFS and just the way it operates in my body in particular?

Tools and systems brought up by others:
- Ambien for disturbed sleep
- MCAS, anti-histaminergics, mirtazapine
- Wellbutrin for dysautonomia

Things I am on which have helped:
- Low dose tricyclic antidepressant (imipramine)
- Low dose naltrexone
- Amphetamine / Adderall

 

[redsun]

A recap:

• I have DSPS (Delayed Sleep Phase Syndrome) for last 17 years, developed at the time that I caught a strong flu-like illness. My ANS (autonomic nervous system) cannot shift into the drive for sleep easily, it does not do it effectively and/or early enough.
• Secondary to the DSPS: I develop, throughout the night and in the morning, a sort of neuroimmune flare -- I am my worst self before 11AM.
• Symptoms of this neuroimmune flare include: sore and dry throat, dry vision, IBS flares, diffuse aches and joint pains, accompanied most especially by bone-deep fatigue and negative affect (restless and emotional as I shift out of sleep and awaken).

This pathological process and its symptoms are a little less intense when following a strict ketogenic diet (which is tiresome and exhausting all by itself).

I cannot tell where the dreams fit in: if they are part of the DSPS/ANS dysfunction, or if they are part of the neuroimmune flare, but they are smack-dab in the middle of this nightly process: they are usually tiresome, long-winded, stressful dreams where I am involved in stressful situations, as if my body is telling me it is exhausted even while it is asleep.

Sounds a lot like a feature of the ANS dysfunction in that it calls back to a hypervigilant and hypersensitive state, these in turn, a feature of a greater neuroimmune problem.

The neuroimmune problem seems to be working beneath the ANS and dream problems: my body telling me it is exhausted would imply that it is contending with a neuroimmune problem at the core.

I think what has me stumped and a little preoccupied is that I do not always see ME/CFS patients describing this sort of mechanism specifically. To me this is like a delayed-onset yet nightly recurrence of post-exertional malaise. In that case, sure, my "neuroimmune flare" would fall back to being a part and parcel of ME/CFS and I would proceed thinking of it as such.

By the time 4-5PM comes around I am usually low on cognitive, muscular, and digestive flares and symptoms. But then, what exactly explains the flip-side of this picture?

WHY does my body "contract and produce" nightly flares, and more specifically, what is it about sleep that brings on these neuroimmune symptoms? Is this a type of PEM which people rarely often discuss? Is this just a form of moderate ME/CFS and just the way it operates in my body in particular?

Is there anything else which I may have missed or overlooked in this picture?

Tools, supports, and systems brought up by others:
- Ambient / low dose amitriptyline
- Histamine and MCAS
- Autonomic dysfunction and IBS

Things I am on which have helped:
- Low dose tricyclic antidepressant (imipramine)
- Low dose naltrexone
- Amphetamine / Adderall

What foods do you include on this "strict" keto diet that you follow? What foods do you avoid?

 

[gm286]

What foods do you include on this "strict" keto diet that you follow? What foods do you avoid?

When push comes to shove, I do it the only way I know: no sugar, no gluten, and no dairy, only eating whole foods howsoever possible. But this is honestly a huge burden and just so, so difficult to maintain.

 

[redsun]

When push comes to shove, I do it the only way I know: no sugar, no gluten, and no dairy, only eating whole foods howsoever possible. But this is honestly a huge burden and just so, so difficult to maintain.

Ok so you typically avoid those foods. What are the foods you eat on this keto diet?

 

[gm286]

Ok so you typically avoid those foods. What are the foods you eat on this keto diet?

Protein (poultry, meat, fish). Vegetables. Vegetable juices. Vitamins, minerals. Low-carb / low-starch foods. In that order, I guess.

 

[redsun]

Protein (poultry, meat, fish). Vegetables. Vegetable juices. Vitamins, minerals. Low-carb / low-starch foods. In that order, I guess.

Do you eat eggs? Also by vitamins and minerals, do you take supplements? What supplements do you take?

 

[gm286]

Do you eat eggs? Also by vitamins and minerals, do you take supplements? What supplements do you take?

I have recurrent and separately verified malabsorption markers involving protein: high indican (a metabolite of tryptophan), and high 5-OH-indoleacetic acid (a metabolite of serotonin). But I don't think this alone can cause all that I've described.

There is something going on with sulfur but I am not sure what. I have a mixed response to eggs, garlic, cysteine/NAC.

The supplements I take succeed the problem, which started a very long time ago. The supplements are absolutely and unequivocally not the cause of the problem. Nor has any medication nor drug caused the problem as at seventeen years of age, when all this started, I was not on a single medication / supplement / drug / specific diet.

I caught a bug, a virus, or something was there from the start -- inherited or predisposed. Hence the "neuroimmune" descriptor. I tested several times for bacteria, clostridia, yeast, fungus... I am ridden of all that. No bacteria emerges through any of my recent testing.

Along the lines of Dr. Myhill's ME/CFS book, neuroimmune for me reverts back to: neurological damage (traumatic, viral, or toxic). Alternatively, an enterovirus. An HPA axis dysfunction due to neurological or gastroenterological damage.

 

[redsun]

I have specific, verified malabsorption markers involving serotonin/tryptophan (and thereby protein): high indican (a metabolite of tryptophan), and high 5-OH-indoleacetic acid. But I don't think this alone can cause all that I've described.

There is something going on with sulfur but I am not sure what. I have a mixed response to eggs, garlic, cysteine/NAC.

The supplements I take succeed the problem. The problem started a VERY long time ago. The supplements are absolutely and unequivocally not the cause of the problem. Nor has any medication, nor drug caused the problem, as at seventeen years of age, when all this started, I was not on ANY medication, or supplement, or specific diet.

I got a stomach bug, or a virus, or ...something. Hence the "neuroimmune" descriptor.

I didnt think a supplement you were taking caused this issue. I just wanted to see what kind of nutrition you were getting.

The stressful dreams you describe I similarly dealt with once. As well as emotional restlessness, Dry throat and eyes and overall feeling dried out, and chronic pain. You have the right idea that your autonomic nervous system is having issues shutting down your sympathetic system. It will also make you hypervigilant and this will translate into your dreams.

Your diet generally is very low in choline and also iodine since you told me you do not eat eggs and milk. You do get iodine from fish but it depends how often and how much fish you are actually eating on a daily basis. Also if you do supplement with iodine then thats not an issue.

Lack of iodine will reduce ATP production in the brain due to reduced thyroid hormone levels, which makes it very difficult for your nervous system to remove neurotransmitters from synapses as all the transporters that do this depend on ATP.

Also because you seem to avoid eggs or rarely ever have them, your diet is definitely very low in choline which could be compromising your ANS function since acetylcholine is the principle parasympathetic neurotransmitter that makes your body shift from a wakeful, alert, vigilant state to a calm, relaxed state which is necessary to transition to sleep. If you have never experimented with a choline supplement to make up for your lack of eggs, that may be helpful to improve autonomic function.

 

[gm286]

@redsun This is all interesting / useful info, thank you.

Re: iodine. I have supplemented with iodine in the past. It is far from curative given the circumstance and panoply of symptoms, but obviously due to that description you gave which was clear cut, I'll add it back into the mix.

L-carnitine: was recommended to me in order to shift out the sympathetic nervous system. Any thoughts?

Re: choline. Interesting, again, thank you. Which form of supplemental choline or brand would you suggest? I've often had trouble pinning down ways to purchase choline. I am taking an expensive, high-dose phosphatidylserine. Does this make up for it or substitute?

Re: supplements. I've gone through years of trial and error. But: some B-vitamins per labs (cannot tolerate B1), C (powder, but it is giving me bowel problems), D and K, A as cod liver oil, E mixed, Omega 3, Potassium, Trace Minerals Mag with other essential minerals, Lion's Mane, 25B CFU Probiotic (lactobacillus + bifido), D-ribose, NAC, ALA, Selenium, bioavailable Copper, PQQ, Lithium...

It all costs a darn fortune, not thrilled...

On the open question of being on a medicated regimen before the problems began. I recall being on a medicine (roaccutane) before the problems fully came into their own. I was on roaccutane between 2003-2004, whereas the rapid onset illness came in late 2007. I recall the occasional IBS flare, mildly negative affect, short yet irrepressible bouts of fatigue, and some dermatitis before that circa 2005-2007.

 

[redsun]

@redsun This is all interesting / useful info, thank you.

Re: iodine. I have supplemented with iodine in the past. It is far from curative given the circumstance and panoply of symptoms, but obviously due to that description you gave which was clear cut, I'll add it back into the mix.

L-carnitine: was recommended to me in order to shift out the sympathetic nervous system. Any thoughts?

Re: choline. Interesting, again, thank you. Which form of supplemental choline or brand would you suggest? I've often had trouble pinning down ways to purchase choline. I am taking an expensive, high-dose phosphatidylserine. Does this make up for it or substitute?

Re: supplements. I've gone through years of trial and error. But: some B-vitamins per labs (cannot tolerate B1), C (powder, but it is giving me bowel problems), D and K, A as cod liver oil, E mixed, Omega 3, Potassium, Trace Minerals Mag with other essential minerals, Lion's Mane, 25B CFU Probiotic (lactobacillus + bifido), D-ribose, NAC, ALA, Selenium, bioavailable Copper, Lithium...

It all costs a darn fortune, not thrilled...

Carnitine by increasing fat delivery to mitochondria may improve ATP production though from what I have seen it cannot enter the brain. I believe the brain has to make it itself which is the case with the brain for many things actually. Good news is you eat I assume a significant amount of meat which is a source of carnitine but also is naturally high in the cofactors necessary to produce carnitine which are zinc, iron, b6 but not vitamin C (which vegetables would provide). I don't think its specifically beneficial in your case. I am assuming because you do eat keto you are also eating red meat which is the best source of zinc. If not, I would make sure you eat more red meat specifically. Zinc is very helpful for sleep and red meat is the easiest way to get it. 1-2 servings of red meat a day will provide a significant amount of zinc.

Phosphatidylserine doesnt have any choline so it doesnt help increase choline levels in the body. You can get choline bitartrate supplements (Solgar for example is good) or they also have phosphatidylcholine supplements, most being derived from soy lecithin. Now brand has a good one derived from sunflower lecithin. Either works.

Other issue I forgot to mention is lack of enough bioavailable calcium in your diet. Lack of calcium can lead to high parathyroid hormone levels, which can contribute to increased risk of sleep disorders. This is another major nutrient you do not want to skip if you have sleep problems. Calcium citrate or bone meal powder on amazon are good options to meet calcium needs. Pure encapsulations is a good brand for calcium citrate. KAL Bone Meal powder is good. All of these options I mention are on amazon.

You need a minimum of 800 mg of dietary calcium a day to maintain calcium homeostasis in normal circumstances. This is based off of absorption rates and daily calcium losses. But if you have been low on calcium for a while you would likely benefit from higher calcium intake for a few weeks. For example, most calcium citrate tablets have 300mg per serving. Normal maintenance you would take 600 mg (most people even with no dairy get 100-200mg of calcium a day), but for a few weeks you can take 600mg twice a day to help reduce PTH levels.

Iodine is good, just keep the doses moderate, 150-250 mcg (micrograms) a day. Milligram doses may cause problems in some cases, not too mention you dont need anywhere near that much.

This unfortunately is the unintended consequence of diets. You remove foods which may cause symptoms but you also worsen health in the long term as you expose yourself to nutritional deficiencies, which further contributes to metabolic and hormonal dysfunction.

 

[linusbert]

What is it about sleep that brings on these neuroimmune symptoms?

i ive read somewhere that the immunse system works at night the most. so that could explain this.

as if my body is indicating exhaustion while it sleeps

energy deficiency. also explains the wild dreams.
do you eat something right before you go to bed? like a piece of bread + butter? some feel better with this, some worse.
if you wake up at night, it might be help full to have a little snack.

wild unpleasant dreams i also have, and i associate it with energy problems. when i wake up nights at 4-5am and have a little snack like a piece of bread or joghurt, i sleep the following 2-3h like a baby.

i think dreams are always a expression of what the body feels and processes right now. if you have stress in your dreams, your body has stress.



btw how are your morning cortisol levels? it should be the highest and flatten over the day, but some have too less or a weird rythm. that could explain your inflamation in the mornings.
maybe small dose of cortisol could help.

 

[gm286]

@linusbert My morning cortisol levels are most likely rock bottom low in the AM, and raised in the PM. I had done a salivary cortisol test 1-2 years ago but my doctors refuted it based on the fact that I was on prescription steroids, which messes up the reading (I don't buy this, but whatever). I'm still on steroids, albeit switched from prednisone to hydrocortisone recently and taking half the equivalent dose (10mg to 5mg).

Definitely feels like a weight has been lifted off me, as the prednisone was becoming intolerable for many other reasons.

I did ask my PCP why had no doctor ever considered following through on my problems when younger and look into pituitary testing to see what exactly was going on with my cortisol output back then. It obviously never happened, and I was told outright that I am "dealing with anxiety," whatever that means after your nervous system gets wrecked. But my current PCP is open to looking into all of this for me.

 

[linusbert]

I was told outright that I am "dealing with anxiety,"

that means in plain english that these doctors are ignorant incompetent morons who do not even consider looking in scientific literature to do some research but believe their current knowledge is the height of wisdom - and they actually dont know whats going on. but nevertheless they taint your curriculum and destroy your life permanently by giving nonsense psychiatric diagnosis's.

so hydrocortisol in the morning doesnt help with the flares?

i would not trust those salivary tests. i did do them multiple times and often they were for me contrary to the blood tests.
testosterone blood = too low
" saliva = too high
cortisol was similiar. low cortisol in blood and high in saliva.

 

[Wishful]

What is it about sleep that brings on these neuroimmune symptoms?

The brain's immune cells--particularly astrocytes--change function during sleep. Why those changes might cause your symptoms is a mystery. There's just not enough known about how the brain works (and fails to work properly).

Deep sleep (delta waves?) is important for flushing out waste products from the brain, through the glympatic network. That might be playing a role too.

 

[lenora]

Hello & welcome to PR. As I read your complaints, it occurred to me that you may also actually be suffering from fibromyalgia. Pain is one of the hallmarks, as well as interrupted and difficult sleep. You're tired, but you can't "shut off."

I know that you don't do much each day, but how about trying to get out into your parents backyard? Granted, winter isn't the best time, but especially when the weather clears.

If there is nothing to sit on, take a chair and just spend time with nature. Little by little your senses may come back to life...it's also good for anxiety.

Look at the symptoms of FM and try to decide if that is a problem. I'm a victim of it and have been for 35 yrs., or more, I also have terrible anxiety and panic attacks. All are under control at the moment and I have plenty of problems, but at least FM has taken a vacation. Why? Who knows?

You're young, so getting back on your feet is important and I would support you 100%. Yours, Lenora

 

[eric_gladiator]

Since I started 5 years ago in the long run, as well as my symptoms were improving, I could also notice that my quality of sleep was getting worse, I managed to sleep many more hours, I sleep more deeply but little by little without understanding why I feel that it is worse, every night I have strange dreams, I wake up often in pain, my heart rate is fast... I'm currently trying various supplements like cordyceps, reishi, during the day, 5htp at night, magnesium, valerian, theanine... they really work a little but They do not work miracles, much less do they take away my illness, the ketogenic diet has also been seen to help. I highly suspect that my problem is a neuroinflammation or something that comes from the intestine although I have no symptoms of that

 

[linusbert]

tried a night times snack right before sleep? like bread + butter?
intense dreams can be a sign of energy deficiency.

 

[lenora]

Insomnia is very common with us. I've lived with it for probably 35 years now. Presently, I'm about the best I've ever been (which is a guarantee of perhaps 3-4 good nights sleep). Valerian was terrible for me, but has helped others.

I stopped all night vitamins, supplements and sleeping pills. They worked for a night or two, at most. Why bother? I have a nighttime routine that helps me the most. I always read and it takes my mind off the day and troubles that arise. I just don't read something too exciting...mysteries, facts, political articles, that sort of thing. It's not a guarantee but it does help.

To break a pattern of not-sleeping, I'll take a Ny-quil and ibuprofen for pain. If it's bad enough, I'll take a muscle relaxant earlier in the afternoon. Those days are seldom, though. See, for me a snack would start a whole chain of events that would keep me awake. As you can see, we're all different and there are simply no guarantees for any of us. I wish you luck. Yours, Lenora

 

[eric_gladiator]

Does it happen to you that from the heart to the brain you get very strong beats while you are with those very vivid dreams? In my case, I think that they are getting more and more, I sleep 8 or more hours without waking up with a very deep sleep but of very low quality with so much sleep at night. I am currently taking cherry and I am doing well together with reishi, 5htp and theanine but there is no way to fix the unpleasant sleep and how bad it feels to get up

 

[lenora]

Hi, Eric. I think the older we get the harder sleep becomes for us. Although having said that, my husband (almost 79) can fall asleep as soon as sits down....which isn't often. Still, he think it's a bad night to wake up once to urinate.

Me, there are nights (many) when I sit in another room doing something to keep me busy until I feel that I can fall asleep. Part of my problem has always been sleep related and sinus problems don't help.

I found it helped (finally) to ignore how I slept, how many hours and just get up and live as best I can. I had a period about 2 yrs. ago where sleep was incredibly elusive. It didn't matter what I took or didn't. In my case it comes from the brainstem....and nothing can be done. It just is.

I wish you better nights....I know what the alternative is like. Funny thing is that I'm more alert when I don't sleep as much. Why? Yours, Lenora