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Posted 4/6/2021 2:05 AM (GMT 0)
I would really appreciate any suggestions on this.

Background:
about 1.5 years ago, something "switched" in me and caused severe sleep issues. I generally could fall asleep fine, but I could not stay asleep. Often times, I could only sleep for 4hrs. In time, I stretched that out to 6hrs/night. I have a strong internal clock to wake up around 6/6:30am each morning no matter what I do. All the progress I made was erased about 2 weeks ago, and I'm now back to where I started (actually worse). I even had insomnia so severe the other night that I was literally up the whole night and could not sleep at all. Generally, I can fall asleep but can not stay asleep (and/or frequent wakings, early wake-up).

I've done a ton of the usual recommendations. I have chronic fatigue issues for the past decade. However, I've really made progress on improving that (moving more, exercising until gyms taken away from me, better diet, etc). I truly believe that my chronic fatigue just progressed (despite numerous treatments) and really tanked my hormones. (My cortisol is higher than normal in the morning, and then lower than normal the rest of the day.) Per repeat hormone testing, my hormones are mostly low across the board. I was prescribed bioidentical progesterone, and it has done nothing for me. They doubled it, and it still did nothing for me. I've also been taking LDN for several months. My current doctor recently told me, "I have no idea how to help you." I'm discouraged.

I'm trying to find a new doctor, but you know how difficult that is. I saw one today that believes nearly every health issue will be resolved if you reset your diet and address nutritional deficiencies (been there, done that). I am really trying to find somebody who knows adrenal/hormonal problems, as I suspect that it is a big factor in my issues.

IDEAS?
Any ideas for severe sleep issues? I've tried many herbal and what-not supplements, heavy weighted blanket, eye mask, dark room, cool room, improve sleep hygiene (bleck), numerous sleep podcasts, mouth taping, sound therapy, affirmations, meditation, quirky EMF protector, a pharmaceutical medicine (did nothing), bioidentical hormones, LDN, etc. I do numerous other things, such as infrared saunas, HOCATT, NAD and nutritional IVs, etc for the fatigue/other reasons, and those do not help either for the sleep.

I just want to sleep. sad It is literally my only break from the constant stress I'm under, year after year.

ETA: As for things I've tried in regards to supplements/herbals (in various combinations)...
Turmeric, l-theanine, 5-HTP and/vs tryptophan, magnesium, valerian root, passionflower, lemon balm, hops, GABA, TMG (trimethylglycine <- liked this), chamomile, "sleepy" herbal tea, melatonin (low dose, high dose, and everywhere in between, I guess), CBN, and others I can't think of off the top of my head. Also, I use the Apollo Neuro (for heart rate variability, which is suppose to help sleep).

ETA2 : My sleep issues started for a year before even trying the LDN. I have taken a break from LDN (when I went off everything to prepare for a test), and there were no changes in my sleep. I am taking the LDN in the mornings now.

Post Edited (1000Daisies) : 5/16/2021 9:12:27 PM (GMT-6)

Posted 4/6/2021 2:51 AM (GMT 0)
You mentioned stress. . Some of us just cant have that. Identify the cause.

Its not always possible to eliminate it. So we need to change what we can, and modify our reaction, viewpoint, or "take" on whats left.

Money was always a big deal with this, and a source of stress for many when they dont have it- why I always tell people to broaden their horizons to make income still possible.

Hormones...............what about thyroid? As you probably know Drs dont manage or diagnose thyroid issues very well. If I listened to the average Dr's approach to thyroid I would not be employable. TSH is not the diagnostic "king" and synthetic T4 only does not do squat for some peoples symptoms.
Posted 4/6/2021 3:13 AM (GMT 0)
Have you ever suspected babesia or bartonella?
Posted 4/6/2021 5:24 AM (GMT 0)
Well, thats my point, not many Drs are that well versed on thyroid issues....yet might think they are. Their schooling on this is actually inadequate and somewhat hurried through as if its not that important. Every cell needs thyroid hormone.

Most Drs are happy with patients being a little hypothyroid. Problem is a "little low" may be very low for some individuals and vice versa. For a Dr to say your TSH is fine so no need to look further is not accurate. People need to understand complete thyroid labs and not just take a Drs word for it.

And its not funny how so much literature and Drs assume that only hypEr thyroid creates insomnia..............wrong again. HypOthyroid can create depression, anxiety and insomnia very easily.

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There is also gut health, the direct gut-brain connection.

Post Edited (astroman) : 4/5/2021 11:40:29 PM (GMT-6)

Posted 4/6/2021 10:36 AM (GMT 0)
are you still taking / increasing LDN?

in the long run it may help - but for 2 weeks after each small dose increase i get very disturbed sleepo and am now having to make very very gradual changes
Posted 4/6/2021 12:45 PM (GMT 0)
Daisies: there was a good thread recently about similar issue.. of course no easy answers, but lots of sleep hygiene and supplement recs (maybe one or two you haven't heard about):

https://www.healingwell.com/community/default.aspx?f=30&m=4234137

The problem comes and goes for me.. it may be fluctuating with overall stress levels I'm not really sure, but I'm lucky to be in a good pattern atm.

I've always been a light sleeper anyway (frequent wake ups), but when I'm in a bad pattern, I just can't get back to sleep. I too think that it's cortisol spiking prematurely..

Yes Breezzy, down with daylight savings time sad
Posted 4/6/2021 1:03 PM (GMT 0)
Have you tried lowering your ldn dose. I used to take 4.5 mg and woke up a lot. Now I only take 2 mg and sleep much better. Of course it could be unrelated.
Posted 4/7/2021 1:05 AM (GMT 0)
Sorry I can’t be of much help. I struggle with the same issue. I started thinking maybe it was hormonal bc I notice sleep is bad before cycle and then seems to get a bit better. Idk really. Like Sandy, b12 tends to make me tired instead of getting energy. I still don’t take it at night although maybe i should try. I took some today so we’ll see if I sleep better tonight.
Posted 4/7/2021 9:26 AM (GMT 0)

1000Daisies said...
I'm still at (around) 1.5mg. Every time I tried to increase, it seemed to mess up my sleep. So, I just stayed at 1.5mg. My sleep was problematic long before starting the LDN. However, it's not a bad idea to do a purge on everything, wipe the slate clean, and evaluate where I stand off everything. I was off everything a month or so ago (for preparation for some test), and I didn't notice any difference at the time.

for me with LDN the sleep disturbance effects are pronounced - but last around 1-2 weeks after every dose change - then drop back to either how they were before - or a fraction better - so i suspect it helps in the long run. if you have been on this dose for a while i doubt it is the cause of the latest sleep issues.

fwiw - i started getting these strong sleep effects at around 1mg / day - but have continued to increase the dose every couple to 4 weeks - and just made v small steps each time to minimise the disturbance.
i am at around 3mg now - but i have had to reducer the steps to around 1/10th of a milligram to avoid weeks where my sleep is very bad - as this impacts my overall health adversely.
Posted 4/7/2021 2:36 PM (GMT 0)
In addition to past roller coaster thyroid levels, I also had high AM and late PM (midnight) cortisol as confirmed by several types of tests, conventional and non conventional. Was low in afternoon and i'd get very sleep then.

I also had my adrenals tested via a "control pill" (by my endo Dr) that lowers the pituitary to adrenal signal and they were not stuck on permanently (so no adrenal disease).

Holy Basil mellowed this AM cortisol "hit" feel, as its does with most people. But some said it does the opposite. Ashwagonda reved me up - so that works the opposite way on my body.

Propranolol "old school" blood pres med lowers BP via lowering cortisol - weird but true. That why it was popular with stand up comedians ect in low doses or for anyone with "stage fright/anxiety".
Posted 4/27/2021 8:43 PM (GMT 0)
Ugh. Sleep is such a weird thing. I've fixed mine but I dont even know how. It's like as soon as I got a gf and we started going to bed and waking up at the exact same time every night things improved. I do mouth tape and it helps my breathing, not my sleep exactly.

Do you nap during the day daisies? Forcing myself to cut out naps was also beneficial. I think that was the single worst thing for my sleep that I did.
Posted 4/27/2021 9:14 PM (GMT 0)
"

1000Daisies said...

astroman said...

Propranolol "old school" blood pres med lowers BP via lowering cortisol - weird but true. That why it was popular with stand up comedians ect in low doses or for anyone with "stage fright/anxiety".

Recently, I was (incorrectly) prescribed a (different) pharmaceutical medicine that is contraindicated for those with adrenal issues. Basically, it lowered my cortisol dangerously low... so low that I was advised to go to the ER since I couldn't stand (weak, pass out). (I did not go to the ER because in this situation, I knew it was going to be yet another waste of time... and money.) Definitely should have NEVER been prescribed a medication like this with my cortisol issues.

"

-----------------------------------------------------


1)My cortisol lows weren't that low, but my highs (Morning arise and before bed) were to high so this helped in my case.

It did go down naturally since then, to a "high normal" AM level, which is still more than I need though in my opinion. Now I take only 1/3 the amount of Propranolol vs four-five years ago.

2)Since I have a dry mouth at night which can wake me, I recently started using ACT oral dry mouth rinse and some other brand of dry mouth spray before bed. The spray (walmart tooth paste isle) works better and like ACT, its good for your oral health/teeth too. This has improved my night nose breathing, I open my mouth less.

Post Edited (astroman) : 4/27/2021 3:19:53 PM GMT

Posted 4/28/2021 4:30 PM (GMT 0)
1000Daisies, did you ever tried sleep restriction therapy for insomnia issues?

I heard about it years ago, but i didnt investigated deeply enough, but at least is something you can add to all the options you already have.

https://www.medscape.com/answers/1187829-70570/what-is-sleep-restriction-therapy-for-insomnia
Posted 4/28/2021 5:18 PM (GMT 0)
Just to add something, i almost forgot that years ago when i first tried LDN i had horrible sleep issues, but i am also too sensitive. Many dont know this, there are people were LDN helps them sleep, but there are also many people that instead of helping them sleep, makes it a lot more worst, me included.. There are many users complaining about insomnia while taking ldn, if you didnt try to stop it yet, this would be a must approach to try and see what happens if you get holiday from ldn..

Check it here:
https://forums.phoenixrising.me/threads/naltrexone-caused-insomnia.55456/

One of the comments from the user forum above:
"I took LDN at night for many months, but my insomnia has become an increasing problem (hello 6 a.m.!). My doctor recently switched it to a morning dosage, along with some other changes. I haven't noticed any difference with side effects or efficacy."

Also this is a known side effect, for me i had to quit all together, but everybody is different:

Quote:
"LDN can cause sleep disturbances if taken at nighttime – this is most likely because of the increase in endorphin release. These disturbances can take the form of vivid dreams or insomnia."
https://ldnresearchtrust.org/how-naltrexone-works
Posted 4/30/2021 7:37 AM (GMT 0)
Insomnia is one of the main side effects of naltrexone. Check the instruction manual.

And sleep restriction is a very bad idea for people already suffering from chronic insomnia. It's not going to work. It will only increase your lack of sleep.
Posted 5/3/2021 7:19 PM (GMT 0)
So many things can cause insomnia, there is no way to know what is causing it. I will say that your sleep patterns are very similar to mine and I can tell you what has helped me in the past.

4 grams of glycine helped for one or two nights.

Eating polyphenol rich Italian food helped every time I ate it. This only happened at one Italian restaurant, the other Italian places had no effect. I would say it helped 6 or 7 times when I ate there. His olive oil must have been the "good" stuff.

Copper 1mg helped for two nights.

Lithium orotate 10mg (30mg dose) has helped on multiple occasions. One of my favorites.

Limiting calories at supper really helps. At 4pm, I'd eat the bulk of my evening calories and only eat a small portion of them for supper. This almost always helps me.

Going really alkaline in my diet usually helps. My standard meal is 60 g Spinach, 30-60g carrots, 15g red onions, 60g broccoli, 30g almonds, 60g humus, 60 g guacamole (this can be an issue for me), 15g ground flax seed, 15g sesame seeds, a dash of balsamic vinaigrette, a little apple cider vinegar, 1 to 2 tsp combined of oregano, basil, turmeric, cumin, rosemary, parsley, chives, 70g blueberries, 1 navel orange, sometimes cucumbers, tomato, or bell peppers. The more colors the better.

Exercising late in the day has helped.
Posted 5/3/2021 8:24 PM (GMT 0)

insomniaaa said...
Insomnia is one of the main side effects of naltrexone. Check the instruction manual.

And sleep restriction is a very bad idea for people already suffering from chronic insomnia. It's not going to work. It will only increase your lack of sleep.

for balance - my sleep has actually improved somewhat since starting LDN - but i do notice a week or so of disturbed sleep if i step the dosage up by too much in one go - this then settles down after 1-2 weeks and after that if anything its better than before.

this is one of the main factors involved in making LDN work - for those that it works well for in the end - there are often short term adverse effects - something many of us with Lyme are familiar with

as you say we are all different ....
Posted 5/3/2021 8:40 PM (GMT 0)
Could it be babesia? After Lyme SOT I had both bart and babs flares but when babs flared I had a lot of trouble sleeping.

It had gotten better but now after the first Moderna vax I'm waking up early every morning. Really regretting doing it.
Posted 5/3/2021 9:51 PM (GMT 0)
I slept better after taking a dose of pyrantel pamoate (Reese’s brand OTC). If you clench your teeth or have restless leg syndrome - something to consider.
Posted 5/3/2021 10:04 PM (GMT 0)

k07 said...
I slept better after taking a dose of pyrantel pamoate (Reese’s brand OTC). If you clench your teeth or have restless leg syndrome - something to consider.

I'd previously considered that approach and still have the product in my Amazon Wish List. I clench my teeth and have restless legs. But, I also had restless legs as a kid. I never tried Reese's (except for peanut butter cups), because I didn't have any of the itching that's often associated. I also never did the "tape test."

Did you have teeth clenching and/or restless legs? Any other symptoms? If so, did they improve, in addition to your sleep?

Thanks for posting the suggestion.
Posted 5/3/2021 10:39 PM (GMT 0)
I had no itching either. Well, my nose itches at night but i don’t know if that’s related. Surprisingly (or not) my daughter did have the other “itch”. So i guess that’s where i got it. Very common in young kids. My restless legs & clenching seem to come and go. Restless leg syndrome is horrible. Supposedly these critters are easy to get rid of but I have not found that to be true. I recently read that chondroitin sulfate can help so I’m going to try that. God knows my joints need it!

I think pyrantel works on a few different parasites.

Post Edited (k07) : 5/3/2021 5:18:21 PM (GMT-6)

Posted 5/3/2021 11:58 PM (GMT 0)
Indeed, the restless legs are terrible. They're bad enough for me, but I know others have them worse. Sometimes, I move like Elvis did in 1956.

After an in-clinic sleep study, over a decade ago, I was diagnosed with Sleep Apnea and "Periodic Limb Movement Disorder." For years, I thought "Oh, that's just a fancy new name for Restless Leg Syndrome," because no one ever discussed it with me. But, it's different. It was only recently that I bothered to look it up.

Anyway, I wish you good luck with the chondroitin sulfate. I'm only vaguely familiar with the name, but really know nothing about it. I have pain in my hands, elbows (which is new), and it cycles in my knees, hips, and ankles. I'm not sure if it's infections, getting old, both, or neither. Whatever it is...I don't like it!

I'd enjoy hearing about your experience with chondroitin sulfate, should you think about it and feel inclined to share. Either way, I wish you and your family the best.
Posted 5/4/2021 12:07 AM (GMT 0)
By the way, k07, since you've been around this forum a while, have you ever looked into any of the treatments on Susan Luschas' "Debug Your Health" website?

http://www.debugyourhealth.com/parasites-in-humans

(The above links directly to the "Parasites" section of her website.)

Clearly, she's reported great success for her and her family. But, some of the things she recommends seems a bit "out there" to me. Of course, that doesn't mean those things don't work. I just have a skeptical attitude toward things that don't make obvious sense to me or that don't seem to have a plausible mechanism of action.
Posted 5/4/2021 9:16 AM (GMT 0)
Hi 1000Daisies,

I feel so bad for you not being able to sleep. It's possible that stress is causing this. If so (and if you could afford it) have you tried getting professional massages? I have had them and afterward I was so relaxed.

I just bought my Mom a massaging pad that lays either on her bed or a chair though not for sleep (though people state it helps with sleep) but for her chronic tension headaches.

Another thought is acupuncture (though I never tried that but would like to).

I also think diet plays a huge role.

Just a thought,
Denise
Posted 5/4/2021 1:58 PM (GMT 0)
I had terrible sleep. I woke up every hour and it took +- 10 minutes to fall asleep again.
It stopped after I started using modified citrus pectin, based on the shoemaker protocol. It binds to all kinds of nasty things and removes it.

Post Edited (Vimzor) : 5/5/2021 6:54:22 AM (GMT-6)

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