Severe Sleeplessness

Discussion in 'Ask For Help or Advice' started by Jesilyn, Aug 23, 2020.

  1. sribop101

    sribop101 Member

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    A study would be useful to know if you're dealing with apneas, RERAs, or both but there are steps you can take now to improve your situation. First off, start taping your mouth when you go to bed. You need to make sure you are only nasal breathing at night. I would also try nose dilator cones or Breathe Right strips to minimize any sort of nasal resistance. Inclined bed therapy is also an option... it seems to help some people. Sleeping position (and even more critically, neck position) is usually a big factor in respiratory arousals. It's up to you to experiment here. Stomach / side sleeping are your main options, supine position is usually worst for breathing. Try to keep your neck extended, if you tuck in your chin while you sleep that will almost certainly compress your airway. Also, if you are able to, sleeping in a sitting position would probably help a lot, but I imagine it will be difficult to accomplish in your situation. I tried several times and wasn't able to.

    You can also experiment with off-the-shelf MADs (mandibular advancement devices). They move your lower jaw forward and keep it locked there throughout the night to open up your airway. There are dentists who know how to custom-make MADs to your specific jaw, but they are awfully expensive. You'll have to try some appliances from Amazon and see if they give you any benefit.

    With regard to CPAP, I doubt it would be helpful in your current situation. I tried one myself but my anxiety went through the roof and sleep quality plummeted even further. It's like trying to sleep with a vacuum cleaner blowing in your nose. Compliance for CPAP is quite low for a reason. If you've tried the non-PAP options I mention above and want to give it a go, I would recommend investing in a BiPAP (used, no reason to buy new), which modules air pressure when you inhale and exhale. It's much less anxiety-provoking and works quite well for people with UARS. Just remember that all PAP (Positive Air Pressure) devices need a lot of trial-and-error with the settings, different masks, etc. It's not exactly a silver bullet in most cases.

    And yeah, that "acutely vulnerable state" and powerlessness you speak of mirrors my UARS story so closely. It tests your will to live at the very core... But brighter days are ahead, I guarantee it!
     
  2. OP
    Jesilyn

    Jesilyn Member

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    Thank you so much for all of this info, very helpful! I tried sit sleeping part of the night last night, and I can tell it relieves some stress. No wonder I've had the instinct to sit up and meditate when I really can't sleep at night, now I understand a bit more why. Will definitely take some experimentation to make it comfortable. Did you try or come across an good pillow/prop products that work well?
     
  3. OP
    Jesilyn

    Jesilyn Member

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    I tried the ambien last night, and woke up after an hour... maybe breathing problems and sleep meds don't mix, suggests quick search, could even make worse... not sure if I should try something stronger or not...

    I do speak Spanish, a little rusty, but could retrain quickly. Thinking I may need to find a way to go further south this winter because I'm currently relying heavily on sunlight to keep me going. Not sure I could survive winter if something doesn't change soon!

    All an opportunity for deeper healing, at least that's the story I'm gonna bank on ;-)
     
  4. OP
    Jesilyn

    Jesilyn Member

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    Saw somewhere in one of these the suggestion that cellulose in supplement capsules causes early morning wake-up... think there's anything to that? I am ingesting some cellulose capsules.
     
  5. SonOfEurope

    SonOfEurope Member

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    Hola Jesilyn,

    Cellulose might feed some undesired gut flora.... It might be true that for optimal health the colon might need to stay busy as some other members have pointed out... After all if you don't use it you lose it and atrophy of a tissue is the true beginning towards improper cell energization and cancer.

    But I have my "needs" of an indigestible fiber covered with the bell peppers Tropical fruit that's fibrous that I eat. So I'm covered but on the safe side.

    Also look at any additives in the encapsulation yeah?

    I've kept a very sharp Spanish but where I live it's not much of use for finding work etc... If I went to Spain (My Father's Homeland) The bilingualism would help me but right now Europe is not doing too well and unfortunately the West USA is not an option so I'm moving ahead with English alone, I can testify learning another language helps expand the mind as Dr. Peat said and this just between European ones imagine learning Japanese.

    If you are in Northernmost Arizona, Nevada, Utah or Colorado or even Northern California you could benefit from going a little further South, the Winters around there have short, cold days and more cloud cover but trust me, nothing compared to the Northeast, I am right between the Great lakes and from Mid October to the ends of March you don't have even 1 day of enjoyable light.

    Have you seen your Doctor again? Any updates on that?

    I had a rough childhood, no physical abuse but it wasn't easy, and this lead to many reckless actions in my teen years that I'm still paying the price for. I don't forget but forgive and I am aware I'll live with this the rest of my life but it's a life to be lived, sometimes things have to happen... You have to be born naive to be wise one day, I'd just focus on stopping the viscous cycle.

    Homo sapiens ... The wise man.
     
  6. sribop101

    sribop101 Member

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    I haven't unfortunately. Let me know if you find something and I'll have to try it myself!
     
  7. tara

    tara Member

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    There are methods that involve more time and awareness that may be very good, but the method I found quickly helpful was to put a belt around my chest. Tight enough that it was comfortable when there was little air in the chest, but got tight if I tried to breath into the chest. The effect was to get the diaphragm doing the work without me having to think about it. IIRC, I did it for an hour at a time a couple of times while awake and doing chores, and then slept a whole night with it on once or twice. That seems to have made a lasting difference long after those few sessions with the belt.

    Control Pause: https://www.normalbreathing.com/measure-cp/
     
  8. tara

    tara Member

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    I've got my bed inclined ATM. I like it, but not sure if I can definitely whether it's having an effect on breathing. If I were to try sleeping sitting, I'd try a reclining chair first, with feet up.
     
  9. SonOfEurope

    SonOfEurope Member

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    And Jesilyn, are you avoiding Fluoride? Just asking.
     
  10. sribop101

    sribop101 Member

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    I'm finding this sleeping position to be most effective for my UARS. Just make sure to use a pillow under your abdomen like it mentions, otherwise you risk straining your neck.
     
  11. IlektraT

    IlektraT New Member

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    How are you feeling Jesilyn? Any improvements?

    I'm also suffering from the same symptoms as you, but for way less time. There had been an improvement for a while, but eating semi spoiled food pushed me back into the loop again.
     
  12. metabolizm

    metabolizm Member

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    Ray has said that any kind of intestinal irritation is likely to prevent good sleep, usually by raising adrenaline. Keeping the intestine clean is likely to improve sleep.
     
  13. OP
    Jesilyn

    Jesilyn Member

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    Things are still really rough. I was using ambien as an emergency sleep aid, and it made the depression and hoplessness worse to the point that I found myself seriously suicidal for the first time. I declared emergency to my parents and they have been much more involved since. I am really seeing what an incredibly heavy burden I've been carrying, and it feels like I finally have some serious teammates, so that's a big improvement. I am feeling really helpless and hopeless, though, struggling with basic existence still quite a lot, pretty much every moment of every day. I stopped the ambien and progesterone per naturopath directives. She suggested a benzo would be appropriate given the severity of the situation, but they couldn't give me one at the ER, so they gave me gabapentin instead and suggested it in combo with melatonin. I moved in with my mom, which I would have done a lot sooner if she didn't live right next to a cell tower. So I'm literally swimming in radiation now, but the emotional level is just trumping all right now, and I have benefited from sleeping in bed with my mom. And honestly a couple of my better nights of sleep were when I skipped the gabapentin. Intestinal irritation is definitely a factor, but my digestion and appetite has been quite a bit better since I started sipping on charcoal and slippery elm water between meals throughout the day. I have to up the cascara a bit to prevent constipation, but it has allowed me to eat a lot more, and reduced the endotoxin symptoms for sure, but it is still a factor in why I don't sleep some nights I think. My sense is the breathing dysfunction is playing the biggest role in sleeplessness at this point. Praying for miracles, particularly a winter getaway in Hawaii! :):

    Just did some bloodwork that included a Lyme test and some co-infections, so we'll see what comes back there. Did a home sleep study, on a night where I barely slept at all, so not sure how useful the results will be, and it sound like it will be awhile before I get the results for that. Have an appointment with my Medicaid doctor at the end of next week, so maybe I can get a benzo instead of the gabapentin. Not sure if that would be better anyhow, but I guess they are both equally hard to get off of, and a benzo might be more powerful? The gabapentin is definitely not a sure bet on making me sleep, it helps deactivate some anxiety, but does not consistently make me sleep.

    Hope you get out of the loop again soon!!
     
  14. OP
    Jesilyn

    Jesilyn Member

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    yes, as much as possible, I probably get some transdermally since last I checked our city water is fluoridated.
     
  15. OP
    Jesilyn

    Jesilyn Member

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    I do like this position, but not for the whole night, at least not yet. And what else are you doing to address the UARS?
     
  16. sribop101

    sribop101 Member

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    I'm glad your parents have recognized the severity of the situation. This kind of journey is difficult to do alone and you need all the help you can get. My UARS made me near suicidal too... Just remember everything will pass. You will get better. And you'll thank yourself for pushing forward at a time like this. As long as the sleep study scores RERAs and you slept a little bit, we'll know if its UARS you're dealing with. Can you pester them to send you a copy of the report? Sometimes its autogenerated and it might be ready now. Don't wait for a doctor's appointment if you don't have to.
     
  17. sribop101

    sribop101 Member

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    My main form of treatment now is the Homeoblock, which is basically a palate expander I wear every night to increase the size of my airway. It's a slow, gradual process and I'm only a month in, but I'm hoping a few more months will be enough to eliminate the sleep disruptions. Aside from that, I've completely de-stressed, eating clean, spending time outdoors and getting sunlight. A few things that helped me before bed: Claritin (antihistamine) to reduce nasal obstruction and Epsom salt baths. Generally speaking, you need to eliminate all forms of stress, stimulation, and blue light 2-3 hours before bed. Journal, meditate, coherence breathing, etc. Are you using glue-light blocking glasses by the way?
     
  18. SonOfEurope

    SonOfEurope Member

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    ^

    I can attest to the efficacy of Magnesium in that form, before I actually close my eyes I turn off all lights, no WIFI in the apartment and I've placed the shades in a way that the light of the Post lamp outside is almost fully blocked.

    Total darkness, I stare at the darkness for 10 minutes and falling asleep uncontrollably... I guess it's a good melatonin response.

    I keep a small lamp by my side just in case I need light fast in an emergency.

    Something that also makes me really sleepy is turning off all the lights and being in a room lit only by a candle, I DO NOT ADVICE THIS, instead a safer method might be a red light lamp in low power.


    I guess the tenuous reddish light of a fire made my ancestors really sleepy in the caves of Eurasia. Watching a sunset has a similar albeit less profound effect as you would expect it was in the tropics.
     
  19. OP
    Jesilyn

    Jesilyn Member

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    Oh gosh, things are not happy in this corner of the universe. I sure hope I can find the support this poor sweet body needs to get out of this vicious cycle soon! There is a fairly prominent and vicious 48 hour cycle happening. It's been happening consistently enough that it seems independent of what I do or don't ingest in the day food/supplement/medication. What I eat and take each day doesn't vary much at all, and yet I am swinging dramatically back and forth between sleeping the majority (or even all) of the night, and sleeping only 1-2 hours or less the next night. I have been working with the gabapentin the last week or two and actually slept better on a couple of nights that I skipped it on an intuitive hit. The past two nights I used low dose doxepin that the sleep specialist prescribed. The first night I slept solid for 7 hours. Totally unprecedented. Felt a little out of it the next day, but not bad considering how extreme my accumulated lack of sleep is. Last night I slept an hour or even less and was awake the rest of the night. This is so brutal.

    My understanding from research is the low dose doxepin works as a potent antihistamine. So I am wondering if I need to do something additional to work the serotonin too? Should I try it in combo with cyproheptadine? On the nights that I don't sleep there is a fire in my gut for sure, so gut inflammation seems to certainly be playing a significant role in addition to the airway collapse problem. Can the serotonin and inflammation kind of build up in the system? The body goes into crisis and mounts a huge stress response which keeps me awake all night, and I kind of ride the adrenaline/cortisol for the first part of the next day, crash, sleep better the next night, regardless of whether I medicate or not, seem to be more sluggish the next day, and then end up with too much gut irritation the next night to stay asleep no matter what I take. It hasn't followed that description exactly every 48 hourvcycle, but that sketches the basic dynamic as far as I can discern from what I understand and am experiencing.

    The only starch I am eating is well cooked winter squash, which is included in specific carb diet and GAPS, so I thought would be pretty benign, but maybe not? Also eating really well cooked apples, maybe need to try to back off that too? I haven't been having much of it, but it seems like OJ causes gut stress too. I think I will see what abstaining from dairy does too. Hate to go back in the direction of restriction, but don't know how to put this fire out. Have been using charcoal daily as well, which noticeably helps, but not enough I guess. Raw carrot and mushroom too, although I haven't done the mushroom in awhile. Cascara is still keeping my bowels moving once daily, although some days they definitely feel reluctant. Anything else I'm missing that might help the gut and/or serotonin problem?

    I am noticing gas that has a smell it didn't used to... I think it is methane. Any ideas there?

    The sleep specialist said she almost never prescribes benzos due to addictiveness and interference with breathing, but I wonder if one would keep me asleep. So far I haven't been able to get anyone to prescribe me one, but maybe she will when I tell her the doxepin isn't working... thoughts?

    The bloodwork came back negative for Lyme antibodies and co-infections. So I don't know what my naturopath will suggest next. I think I asked her that 'what if' question but my memory is seriously going to hell, it's very unsettling to experience.

    The bloodwork also showed that my TSH has dropped very low (I've been supplementing 1 grain NDT daily), so I've been advised to stop supplementation.

    The sleep study came back inconclusive (I only slept an hour the night I did it), so I am going in on Tuesday to do one hooked up to all the fancy equipment. The specialist said it's pretty important for the results that I sleep, so I'm not sure what to do since no medications are reliably keeping me asleep. She also offered mirtazapine, but said she has found the doxepin to work better.

    Does anyone know a practitioner who really knows their pharmaceuticals and has a metabolism focused understanding? I need help solving this, I feel like it's too much psychological pressure to be trying to solving this on my own. I really like my naturopath, but she is not available enough and I'm not sure she understands these drugs...
     
  20. OP
    Jesilyn

    Jesilyn Member

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    yes, been working the light angle for the past year
     
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