Wake up several times a night

[Orla]

I should have added I have tried a lot of sleep hygiene things, some of which help a bit but don't fix the problem. Things I have found which help are black-out blinds (and heavy curtains as well), making sure not to be too hot or too cold, try to avoid over-stimulating things at night, not drinking too much late at night, giving up caffinated drinks (which i did when I got sick originally), and I take some melatonin at night. I can't remember what else but I think there are some other things I do but they are the most important.

 

[overtheedge]

Don't think I have adrenal problems, at least, tested salivary cortisol and it matched the curve nicely though that was on a day where I was waking and sleeping at a usual time. Adrenal glandulars don't do anything for me though adaptogens do but that could have to do with something other than adrenals. I don't have POTS anymore, think it stopped after I started taking sea salt but I'm not totally sure if that's what stopped it. Did a test of blood pressure lying down and then right after standing up, if your adrenals are bad your systolic should rise less than 8 points or even fall below what they were when you were standing, mine rose more than eight points, I've also been meaning to do a flashlight in the eye test to see if my pupils are unable to maintain contraction but haven't gotten round to it yet, I failed that test back years ago when my adrenals were almost certainly doing bad according to my doctor at the time, the one who got me well.

here's some info on that blood pressure thing, don't know how legit it is but it showed up in two of the books I've read, Included the pupil dilation exam too

From: Prescription for nutritional healing

Normally, systolic blood pressure (the first number in the measurement of blood pressure) is approximately 10 points higher when you’re standing then you’re lying down. If the adrenal glands are not functioning properly, this may not be the case. Take and compare two blood pressure readings – one while lying down and one while standing. First, lie down and rest for five minutes. Then take your blood pressure. Then stand up and immediately take your blood pressure again. If your blood pressure reading is lower after you stand up, suspect reduced adrenal gland function. The degree to which the blood pressure drops upon standing is often proportionate to the degree of hypoadrenalism. However, practice a bit with the blood pressure cuff, as readings can vary a lot, especially for beginners unfamiliar with the device. Or use a digital blood pressure measuring device to avoid errors.


From: Treating and beating cfs

Testing for Adrenal Fatigue Although I recommend having a saliva adrenal stress-hormone profile done, there are also some simple tests that you can do at home— or with a doctor’s help— to help you determine the state of your adrenals: Ragland’s sign is an abnormal drop in systolic blood pressure when a person arises from a lying to a standing position. Normally, there should be a rise of 8 to 10 mm. in this number. A drop or a failure to rise indicates adrenal fatigue. Example: Someone takes your blood pressure while you’re lying on your back. The systolic number is 120 and the diastolic number is 60 (120 over 60). Then he takes your blood pressure again immediately after you stand up. The systolic number should increase to 128– 130. If it doesn’t, you have adrenal fatigue.


From: Treating and beating cfs

Another way to test for adrenal dysfunction is the pupil dilation exam. To perform this on yourself, you’ll need a flashlight and a mirror. Face the mirror, and shine the light in one eye. If after 30 seconds, your pupil (black center) starts to dilate (enlarge), adrenal deficiency should be suspected. Why does this happen? During adrenal insufficiency, there is a deficiency of sodium(this is one reason those with adrenal fatigue crave salt) and an abundance of potassium, and this imbalance causes an inhibition of the eye’s sphincter muscles. These muscles would normally initiate pupil constriction in bright light. However, with adrenal fatigue, the pupils actually dilate when exposed to light.(note: if these tests show I have AF check new alt med list for his rec)



Niacin (the kind that makes you flush)
l-theanine
melatonin
inositol
l-glycine
5-htp

tried all of these, 5-htp makes me feel better and really did so when I first started taking it, none of the others did anything for me though I don't think I tested glycine around bed and also I'm testing theanine right now, suntheanine to be exact, think it might be working but it's too early to say, been down with some sort of fever like illness the past few days which interrupted testing and is why I haven't been posting



@Basilico don't really know when exactly this started so I can't tell which supps I was taking right beforehand. I am keeping a food and supplement diary but so far nothing sleep related or food allergy related has come to light from it. No alcohol or coffee, don't think caffeine affects me much. Interesting thing happened to me recently tho, found that taking small amounts of alcohol make me feel real good, I don't mean right after, the day after is when it really kicked in. I ended up feeling great, and I'm talking just a few sips of just moderately strong or even relatively weak alcohol and I would consistently feel awesome. The effects of this sort of wore off I think, might retest.


@santi I used a tester a long time ago when I tried out earthing at the recommendation of a family member, levels were normal, also, did do the earthing thing for a few weeks with no effect


@Orla haven't used many sleep meds, trazodone did work for me but I stopped, maybe I shouldn't have but I wanted to try getting off any prescription meds, trazodone always made me wake up with my eyes strobeing slightly groggy, can't remember if I used to wake up in the night while on it or not, though, I suppose I'm more trying to find out if my waking up in the night can point towards some origin of this illness rather than find a way to get more consistent sleep. I get decent amounts of sleep, usually get enough sleep, though it sucks when i get less than 8 hours and cant get back. I have read that about sleep meds, that they can cause weight gain, never had the issue myself but I've always been rather lean.

Thank you all for your input

 

[overtheedge]

Looking back over my post I hope i wasn't dismissive in a way with that last line and cause an end to any discussion, all the input was good, though, I suppose the problem of awakening is more prevalent in CFS than I thought.

One of the big problems I've run into with this illness is the lack of unique symptoms which could point to one specific cause, it seems like every symptom points to multiple underlying conditions and not just one. Rather problematic

 

[me/cfs 27931]

Quercetin helps a bit with my sleep disruptions. As does LDN. Not much else does.

 

[flitza]

Hello. Not wanting to be irritating here but wanted to make a small suggestion here to help you out in the future and then expand if I may:

Firstly, cortisol should not be high in the morning. High morning cortisol is a sign of low blood sugar (stress on the body) or some other abnormal process that needs to be ruled out. Cortisol levels (in the absence of a stressor) should be within range in the morning. Perhaps you meant, cortisol levels are highest in the morning Vs at night? As this would be the case.

Secondly, I would advise anyone with ME CFS trying to get help for their adrenal function that is 'off' to try to avoid using the term 'Adrenal Fatigue' as doctors will treat you negatively. In medicine, cortisol is either low normal or high. Doctors usually raise eye-brows if they hear patients say things like 'Adrenal Fatigue' as naturally, they want evidence of the claim which is understandable. As is stands, there is no direct evidence of 'Adrenal Fatigue' per se (without extensive testing of things like Thyroid and nutrients that help support adrenal function), but, these are rarely performed and indirect. Due to this, the medical profession will largely be hostile to patients who use this term, so be careful who you share the concept of 'Adrenal Fatigue' with.

Lastly. In ME CFS the universal problem (there are always exceptions) isn't with our adrenal glands, it's in our brains. The brain in ME CFS unfortunately allows us to be become overwhelmed by stress and does not 'fire' cortisol in time to protect us from it. This makes us think we have pathalogically low cortisol at times of stress, when we largely don't, we have a triggering and management problem from HPA axis dysfunction, probably due some kind of inflammation. In hospital based testing (Short Synacthen test) we tend to have low normal cortisol but still sufficient. It does rise (after an injection of synthetic ACTH), but produces a classical 'blunted' response in ME CFS patients. In itself, doctors will ignore this finding as largely insignificant and give you a clean bill of adrenal health as technically they are right if limiting the investigation to the adrenal glands alone.

Where they are mistaken, is they don't then don't advance onto other ways to measure cortisol brain utilization such as stressing your pituitary gland (Glucagon stimulation test) and then measure cortisol production this way, instead of activating your adrenal glands via an ACTH test only as mentioned above. If one had this additional test, you could get them to measure Growth Hormone (GH). In adult GH deficiency, cortisol production is impaired, as is utilization of glucose. What I'm suggesting is PWME CFS can erroneously put their 'low cortisol' and 'low blood sugar' issues down to ME CFS when in some patients, it's actually down to adult GH deficiency, and even worse patients have no idea because they get blocked from the test because their IGF-1 comes back normal. Then they are incorrectly told they don't have GH deficiency. This is incorrect though and we can have GH deficiency with normal IGF-1. In addition to IGF-1 there is also a marker called IGF-BP2 and IGF-BP3 to look at which is rarely investigated due to cost. A single GH blood test by the amateur ME CFS patient forced to play doctor is useless to asses GH deficiency unless trying to rule out high GH. What is more useful is a 24hr urine GH test, available from ELN lab in Holland (Europe) or via their American Lab. With this test, you must get some sleep to maximise GH as GH is produced in certain stages of sleep in bursts (don't drink at night or a few hours before bed), as if you don't sleep the test won't be as accurate if you're up all night peeing, it will be falsely low. Getting a result back of low 24hr urine GH may explain odd cortisol symptoms that aren't true deficiencies that endocrinologists demand. What it doesn't do is prove you have GH deficiency, and you may instead have a sleep disorder. Still, with low 24Hr Urine GH you may then be able to progress onto a Pituitary Stimulation (Glucagon Stimulation test, or similar) and at least see how much GH your produce. If it's really low, then you might feel a lot better on GF injections, if deemed suitable.

In addition if you wanted to investigate cortisol issues fully when you've thought of everything else 'conventional', I would do the following tests most people don't think of:

Adrenal CT scan
Adrenal Cortex Antibodies

I'm sure they will be normal, but if they aren't, then having something like atrophy of the adrenal glands (found in some ME CFS) might be interesting as well as having sub clinical low cortisol via the presence of adrenal cortex antibodies.

Hope that wasn't too much like preaching to the choir, and apologies if it was.

Wow! What an excellent post!

 

[jesse's mom]

I tried to read this whole thread and found much of the science exhausting. I have bad brain fog today and just saw the thread. I have found that, for me no matter what the reason I have to use a simple blindfold to get more than three hours of sleep. I also need white noise.. I just use a box fan.

I have many coexisting factors including, but not limited to CKD stage 3, measurable spinal stenosis and degenerative disk disease, so I do get up to pee an average of three times on a good night. I have had a sleep study and never ever, did my brain go into stage 4 sleep. My neuro said that my brain simply never went to sleep... ever. I have been taking a benzodiazepine called Halcion for several years with success. It is good because it has a five hour half life and I don't feel drugged for hours in the morning like with Ambien or Lunesta. (not a popular decision on this forum) He added trazodone and it helps, now I have an active dream life that is very interesting. Good thing as my daily life is pretty boring.


For me, the simple solutions are best.
blindfold me and hit me over the head with a brick. LOL