Cyclical Alternating Insomnia/Sleeping

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Hi everyone again! I can't say I've had much to report regarding my illness, it's been more of the same, only increasingly worse as time progresses with most of my symptoms.

But recently my insomnia seems to have went from week long episodes to a more chronic/intermittent state. Before, there would be a pattern where I would have almost complete insomnia for a week, then a week of sleeping normally and they basically alternated back and forth in a cycle. Now, the insomnia just comes and goes on a seemingly random basis, although commonly the insomnia/normal sleeping will cycle by days as opposed to weeks, so one day insomnia, the next day normal sleeping, the next day insomnia and so on.

I've found though that taking melatonin (3mg) seems to help me nod off around 30 minutes after taking it in the more mild cases of my insomnia. It's been no use though when it becomes more severe. And in these cases, I soon realise I'm not going to fall asleep when I go to bed as I notice this horrible, aggrivating feeling in my head, like my brain cells are all buzzing and tingling and like my brain just isn't in 'sleep mode'. Interestingly, I've experienced this horrible head feeling at it's absolute worst one time when a virus/infection came on when I was about to go to sleep. I'm wondering if this symptom could perhaps even be my cortisol level spiking up at nightime as I know many with CFS can get this along with low morning cortisol. If this is the case, cortisol imbalance might even explain other symptoms I've been getting including the headaches and especially the belly weight gain which is baffling me as I used to be thin and almost underweight prior to the illness.

Has anyone here experienced a symptom like this along with their insomnia and have any idea what it could be? Thanks!
 

Wishful

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I agree that melatonin isn't a magic sleep pill; sometimes it works, sometimes it doesn't. Yes, sometimes I just know, by the 'buzzing' that even melatonin isn't going to help; I'm just in awake mode and there's no point in trying to sleep.

I think I've only had two viral infections since 2001, and they were too long ago to remember whether they caused insomnia.

There are lists online of herbs claimed to reduce cortisol levels. My guess is that any marketing claims for effects on cortisol are greatly exaggerated, but you could experiment to see if they work for you. Of course the problem is not knowing how you would have slept on a given night without the herbs.

I wish I could figure out what's causing my insomnia too. :wide-eyed:
 
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Yes, before I used to have random insomnia. Finally I figured out that this insomnia was actually a PEM symptom and was always preceded by an (intense) activity during the same day. Maybe if you keep a logbook it could help you figure out what is causing it. Many things that seem random actually aren't.
 

Wishful

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Oh, I've found some triggers for my insomnia. Activity past mid-afternoon. Moderate conversations even earlier in the day can trigger it. Quickly-digested carbs between noon and late evening will do it.

By cause, I meant 'what biochemical pathway is messed up?' What I really want to know is: "What chemical to I need to take or avoid taking to avoid insomnia?" It's not just melatonin deficiency.
 
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@Wishful Yep, I'm intrigued to find out what causes this "buzzing" in the head at night. Although I suspect high cortisol at night as one of the issues, I think there could be some sort of higher brain inflammation that kicks in during these times. The fact I had it at an almost unbearable state during a viral onset suggests this too. My whole condition after all basically feels like something is constantly attacking and destroying my brain, hense all these horrible head symptoms I've been getting and hardly any physical complaints.

I'll have a look into these cortisol-reducing herbs, although I'm a little dubious as all the herb suppliments I've been taking so far did nothing for any of my symptoms despite all the supposed health benefits.

I'm glad you've at least been able to find out a couple of insomnia causes at least, hopefully you manage to find some more. I've been keeping a food/activity/symptom diary but still haven't found any correlation with the insomnia or any other symptoms, hense the reason I still consider them random. Of course, these things generally turn out not so random once you find out the cause of course.

@borko2100 Good to hear you've found a cause for your insomnia and are able to manage it somewhat. In my case, it's definitelly not PEM related as I don't appear to have this with my "CFS", or at least haven't noticed it. I have been keeping a diary/logbook but have yet to find any correlation with my insomnia and other symptoms.
 

Wishful

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I don't recall having sleep problems while on prednisone; no 'wired' feeling. That's not strong evidence against the occasional bout of insomnia being caused by elevated cortisol, but it's at least minor evidence against it. So far I don't have any strong support for any theories about what's causing it.

I'll have a look into these cortisol-reducing herbs, although I'm a little dubious as all the herb suppliments I've been taking so far did nothing for any of my symptoms despite all the supposed health benefits.
I just ignore the 'health benefits' claims of marketing. I check the research papers for evidence of effectiveness. The two things that work for me were accidental discoveries, and lack any theoretical basis for working. All the 'supposed to help you sleep' herbs might be useless for you, but some food item in the grocery store might work for you, with no explanation for why.
 
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@Wishful No sleep problems while on prednisone? Interesting, although might well just be coincidence. I'm not standing by any theories so far either in my case with insomnia. Especially since in the 3 years I've had this illness, no one knows a thing about it and if it even is in fact CFS. The melatonin I've been taking is still so far the only thing that's had any effect at all on any of my symptoms and only in some cases.

I agree on those "health benefits" marketing claims too and avoid those expensive snake oil suppliments like the plague nowadays. I'm much more likely to try something if others with similar issues as me say it helped them. I tried taking ginkgo for my brain fog for example after hearing many with CFS said it helped them somewhat, although it did nothing for me even at high doses. But of course, I need to find something that works for me personally which could well be something from a grocery store or otherwise.
 

Wishful

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The melatonin I've been taking is still so far the only thing that's had any effect at all on any of my symptoms and only in some cases.
For my insomnia, 5-HTP seems to work just as well (my conversion pathway to melatonin seems to be working okay). If you have any problems with melatonin, you could try 5-HTP and see if it works better. The 5-HTP would also increase serotonin, which might have some effects. There's no guarantee that any extra effects would be good ones, but I consider all effects on my ME to be useful at least for providing information about what systems might be involved, and maybe what to avoid.
 
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@Wishful I tried 5-HTP not long ago to see if it would help with my anhedonia and blunted emotions. I didn't get any effects at all and it didn't seem to do anything like almost every other suppliment I've taken, although I don't recall having any insomnia/wired episodes on it. I'll try taking it again and see if it does anything particularly with my sleep.
 

Wishful

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5-HTP didn't do anything for me other than counter insomnia. If you do try it next time you have insomnia, and it doesn't help, then maybe you have problems with the tryptophan->melatonin pathway. Unlikely, but possible.

I think many of us discard useful treatments because we test them at the wrong times. I didn't notice that cumin blocked my PEM until I did something that I was sure would cause PEM, and it didn't occur. Checking my journal showed that I'd had some cumin the day before.

If you've taken something that actually would counter insomnia, but only took it at times when you weren't going to have insomnia, how would you know that you should take it for insomnia? o_O
 
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@Wishful I agree and admit to making those mistakes myself. I've spent probably most of my time and money taking suppliments and medications for my 'degenerative' brain fog/emotional decline, overlooking the fact that they could be useful for another symptom like my insomnia or headaches for example.

I've tried taking 5-HTP (100mg) again for the past 3 days, this time at night. However it doesn't seem to have made any difference so far, I still have the insomnia and that same head sensation that accompanies it. I'll keep taking it in the meantime and perhaps try a higher dose and see if it helps any.
 

Learner1

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5-HTP is what pushed me into Dr. Phair's IDO2 trap. If you have any of the IDO2 SNPs, it would be wise to stay away from 5-HTP unless you want to be in the metabolic trap.

Things that have caused insomnia - cortisol produced at wrong time of day, too much ammonia or oxalates.

Things that have helped for different reasons:
  • ornithine aspartate
  • citrulline
  • theanine
  • glycine
  • magnesium
  • melatonin
  • Seriphos
 
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@Learner1 I'm not quite sure what you are referring to with this metabolic trap, I'll have to do some research on this.

With my condition though, my symptoms are very different from classic ME/CFS: no PEM, intolerences (that I know of) or any major physical complaints. So I'm not so sure about any of my metabolic pathways that would be affected, my symptoms could be of a different cause entirely and not actually be ME/CFS at all. Although too much cortisol at night time causing my insomnia is still a possibility.

I have taken magnesium and theanine before but it didn't help my insomnia or any other symptoms. So far though, melatonin has helped me in mild cases of insomnia. This is the only thing I've taken that's had any noticable effect on any of my symptoms in the past 3 years.
 

Aerowallah

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A neurotransmitter spit test would take the guesswork out of this and show you what's elevated. No point knocking down cortisol if your glutamate or histamines is elevated. I have random sleep maintenance insomnia that actually showed a loose on/off pattern once I logged it. Since I respond to Benadryl, it appears my histamines elevate during nighttime detox and subsequent adrenaline release during light sleep cycle.

When I had trouble getting to sleep I had elevated glutamate from trialling something I shouldn't have before I finally tested. One simple trick is to check your diet for foods with high levels of things that cause insomnia--histamines, copper, glutamate etc. and see if you respond when these are minimised....if you do you can eliminate these until you rebalance.
 
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@Aerowallah Neurotransmitter spit tests? I'd better have a look into these. Yep I'm tired of doing guesswork with this condition and if there's a way for me to check all my neurotransmitters then I think I'd better be doing so. This is one area that's never been checked and they could well be severely out of balance, causing my insomnia and many of my other symptoms.

It could even be high glutamate rather than cortisol when I'm trying to sleep, or high hystamine for that matter. And that feeling I get in my head could well be my brain being overstimulated due to high glutamate. I'd better get my neurotransmitters checked and see for sure. I also reckon my worsening anhedonia/emotional flattening could be the result of my dopamine slowly depleting as time goes on, as with the "degenerative" brain fog I experience.

I'll try minimising foods high in histamines or glutamate and see if it helps with my insomnia. And I'll look into getting my neurotransmitters tested like you mentioned. Thanks again!
 

Aerowallah

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You bet. High glutamate felt different for me than cortisol peaking at night. You are quite calm, wide awake and almost hyper alert, which I guess is what glutamate is for as part of the stress response cocktail. High cortisol or adrenaline makes you feel more energised, and some people talk about panic attacks and heart palps. High histamines and low blood sugar can also lead to adrenaline spikes which can jolt you awake. But glutamate was a calmer state for me. I felt like my eyes were like big lamps, switched on at 4am!
 
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Yep, that sounds a lot like me. I definitelly don't feel energised or experience any negative emotions like anxiety or stress when trying to sleep. And it's not like my mind is racing when I'm trying to sleep, it's more the opposite. In fact I'm almost an emotionless zombie when I'm about to nod off and have almost no thoughts at all as it's too much effort for my brain to think at that time of day, although I'd say that calmness is the closest thing I feel when in bed at night.
 

Aerowallah

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Glutamate sharpens the brain and recall when you're chased by that sabre tooth tiger and trying to remember where the cave is your tribe is hiding in. Glutamate seems to go up quicker than it comes down. There are things you can try to lower glutamate, but I was scared about messing up my brain chemistry further. Avoiding high glutamate foods--esp. nuts and seeds--until everything rebalanced was what I did. Weirdly coffee enemas got rid of the all nighters that I really worried was going to take my sanity. Still haven't exactly pinned down why, except other people with metals reported the same result, so I tried it. Urine test can tell you if that's an issue. Glasgow--binge watched "Still Game" and was up half the night laughing...
 
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In my case, my brain feels anything but sharp and recall is one of my main cognitive functions that continues to deteriorate. Everything is just a big mush when I try to think now and my head hurts the more I try. If my glutamate is too high, then my brain cells could be too fried to be stimulated by it in the manner you describe, perhaps causing those aggrivating feelings I describe. I'm am going to get this checked ASAP and see for sure if this could be the case.

I'm glad to hear the coffee enemas stopped you being wide awake all night as strange as this is to hear. Maybe you'll figue out the reason why soon.

Been watching Still Game huh? Yep it's hilarious and will turn you Glaswegian if you watch it often enough!
 

Aerowallah

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Do you feel mushy in the midle of the night? I get brain fog in the morning, which electrolytes help to clear. I think whatever our individual issues, we carry around every toxic exposure we've ever had, and with CFS and lots of rest, the body starts to clear out storage sites once metabolic energy comes up and major detox comes back online. So whatever else is going on there is a stress response from metal clearance piling on. The standard neuro test depending on when it is taken may not catch a spike in histamines, or even cortisol, unless you take it in the evening, but it will definitely show useful glutamate, seritonin, dopamine, epi and norepi levels. If you are waking up in the middle of the night and a benadryl BEFORE going to bed ameliorates this, then you probably have a histamine / adrenaline issue, too, from nighttime clearance.

For those who underestimate detox as a factor, my metals test showed three very toxic substances--methylmercury from bi-weekly sushi for 20 years; lead from sash dust in pre-war apartments; and BARIUM, from one little dixie cup I swallowed for an x-ray in 1974!!!