You're doing good work. I've had Sleep Disordered Breathing since childhood from a mix of recessed jaws and allergies, and my journey was a decline from extreme ADHD in my 10s, to overwhelming fatigue in my early 20s, to essentially dementia.
Nobody offered or was willing to test for anything. I was gaslit and sent to psychiatrists any time I tried seeing a doctor.
By now, it's not my only debilitating chronic condition, and no matter PAP, meds or how hard I try, I'm not capable of basic functioning. Making appointments is extremely difficult, earning money is unrealistic.
In all honesty, I think it's probably too late for me. I have nobody who'd take care of me, and I can't do it myself. My life will eventually end by my own hand, and I don't understand why I'm putting it off.
It's definitely not too late for you mate, no matter how it feels in the short term.
You're putting it off because deep down your subconscious still knows that you are important and have innate value. When things are dark it's easy to forget it but the world needs you, people you know need you and love you. I suspect it's a trick of the mind that hides that from us temporarily.
Anything you do will help and it will get better. Take each day as it comes and note every small win.
Try, fail, try again, fail again but better.
What you are feeling will slowly pass and fade as unlikely as that may sound.
Like a cut healing, one day you just notice that you can remember good things again. Then you wonder why you ever felt that way and you'll be able to keep an eye out in case it ever happens again.
My own sleep problems are caused by allergies, I think. Nasal inflammation stops me sleeping but I also suspect it plays a direct role in depression.
Little things that have helped me:
* Regularly vacuuming bedding.
* Boil washing bedding to kill off any dust mites.
* Vacuuming the house in general.
* Getting more exercise, even just going for a walk every day is good. Being outside also helps boost vitamin D.
* Cleaning teeth properly including flossing. That's to help with gum inflammation which helps with inflammation in general.
* Drinking more water. I like keeping a bottle of cold water in the fridge. I read somewhere that dehydration was bad for inflammation.
How much of that is just anecdotally helpful I don't know but it's simple and cheap to do.
Oh and don't forget that you can talk to people confidentially when you need to:
I'm not a person who went from high functioning to struggling. I'm a person who went from no longer able to attend high school to ten years of being trapped at home by progressively debilitating fatigue.
I've tried hundreds of things over the years, but it's like playing whack-a-mole or trying to slay the mythical hydra. For every improvement I manage, I fail two. No matter what I do, it isn't enough. I can barely take basic care of myself, treatment is unachievable.
I fooled myself into thinking it'd get better when I started PAP, regularly working out. But it just wasn't enough to function. And then extreme post-meal fatigue hit, and everything has gone to shit.
At this point, I'm not even able to try psychologically. I've given up. It's over. Each of my problems has a realistic fix, but none are achievable for me. I can't even do my own groceries or prepare food half of the days.
Could there be an untreated underlying issue? Seems worth doing a thorough checkup to eliminate Lyme, Wilson's, Sjogren, Lupus, neurological issues like FTD, diabetes, mental illness, eg major depression, or even hormones (low t), thyroid, iron levels, etc. Maybe there is something like modafinil that can give you a boost (with a prescription of course).
There definitely is. Partially managed sleep disordered breathing is one, whatever's up with my gut is two, but healthcare where I live sucks. I wait for months just to be treated dismissively and told I need a shrink for daring to think there's something physiologically wrong with me.
I'm pretty sure you've already looked into this but I couldn't scroll past without dropping in my thoughts; feel free to ignore them. I'm dealing with similar problems as a post-covid sequelae, in my early 20s with debilitating problems and also having to get to the root cause myself as doctors are clueless. Have you had your gut microbiome tested (with zonulin + IgA + parasites, fungi and viruses)? If so, feel free to plug it into cfsremission.com to see if something pops out. Oral microbiome and health? SIBO test? Candida? Immunological check up? ANA? EBV or other latent viruses reactivation? Elimination diet / carnivore? You could also try FMT if all else fails (either expensive at a clinic or DIY at home). Good luck man, you're stronger than most of us.
I do want one actually, yeah. Much of my decline started after heavy antibiotics a few years back, and I've experienced temporary relief of some symptoms from antibiotics last year, but then they came back with a vengeance.
I'll be seeing a gasteologist who has published papers on FMT (most here haven't even heard of it), and if that fails, I'd definitely like to DIY.
Have you tried parasite cleanse? I’ve used veterinary dewormers to great effect. I’m also surprised no one has mention doing sinus rinses to clear their breathing problems.
This makes me really sad to read. I really hope you don't do that. I can't imagine how hard this must have been for you.
I sometimes feel like life is to much. What helps me is the realization that life right now is hard but I am enduring. What makes it feel to much is the feeling that this burden is going to go on forever. So I try to be satisfied with the fact that I am capable of handling life right now, and the future is a problem for future me.
What techniques have you looked into for improving your condition?
It makes me sad too, but it just is what it is. I've had individual days of the sun shining through the clouds, but in the end, the trajectory of my life is always downwards.
It doesn't matter what I tried. I don't have enough executive function to stick to it. For every win, I fail two other things. It's a thankless, Sisyphean struggle just to survive from one day to the next.
I wish I could catch a break, but my other problem is horrifying, debilitating, day-long fatigue after eating nontrivial amounts of anything at all. No specific triggers, it's either starve myself or feel so horrible I can't even read/watch/game to distract myself.
I'm no expert so don't take too much stock in this suggestion, but I figured I'd speak up on the off chance it helps you.
I experienced similar symptoms with eating anything causing extreme day long fatigue. This was a problem for me for over a several month period. It started as diarrhea when eating my typical diet of seemingly healthy foods. Then it progressed to eating very little and getting exhaustion from eating even when diarrhea wasn't triggered. I reasoned that I probably had IBS, and worked on figuring out what foods trigger it. For me I found it was the following: milk products, high fat products, animal fat, any meat except low fat chicken and fish, high fiber vegetables, high fiber grains, high FODMAP food such as fruits. Eventually I settled on a diet that cuts out all of my IBS triggers and I feel much better.
Another major trigger is meal frequency and size. If I eat too much at one time I suffer from IBS and exhaustion. I suspect that this may also be a factor for you. So I suggest eating small meals many times throughout the day. This helped me tremendously as well.
Lastly, medication was very effective in managing the issue as well. Imodium and peptobismol can be used in combination pretty frequently. This slows down your digestion and reduces gut inflammation, which I hypothesize is what causes the extreme exhaustion symptom. You can also see a doctor for IBS and they can prescribe you other medication that has a similar function but is perhaps stronger such a viberzi, though Imodium and peptobismol worked well enough for me. When I want to experience a cake or something outside my diet, I take all this medicine preemptively, including lactase if having dairy, and eat a small amount of it, and make sure not to do that too often.
I don't know if any of this will actually apply to your situation, but regardless I sincerely hope you find a solution as I did. I certainly understand how poor health is one of the hardest things to deal with emotionally.
So far I've been met with specialists blaming it all on stress, despite the fact that I'm a remarkably calm person outside the flares(they make me feel abysmal). I'm not able to single out any specific triggers, and at my current level of debilitation I've been unable to make major changes in my diet.
I'll be seeing a hopefully good gastro soon, and if all else fails I'd like to try DIY FMT, but it's all such a horrifying struggle against multiple sources of severe disability with no support.
Its been shown that sleep apnea related brain damage reverses completely within a year of treatment. If your issue is a narrow airway due to a recessed jaw an MMA can be curative. Insurance covers MMA if AHI > 15.
Do you have people around you that can help cover an MMA if you need to self fund? Or people you can borrow money from? Dr Alfaro in Barecelona will do it much cheaper than the US.
I understand the dread. I also saw multiple suicides in the UARS/Sleep apnea communities. I hope you find the strength to continue
My dude, Alfaro charges prices that are vastly out of reach of anyone not made of money, and I'm at a point where making Dr appointments in the first place, nevermind coordinating travel, pushes me to my limits.
I can probably get it done under public healthcare where I live, but I don't know if I can afford orthodontics, even if it's "only" a few thousand bucks over here.
Just wanted to share a cheap suggestion that has helped me with poor breathing due to narrow breathing passages. This was temporary due to bad respiratory virus, but was effective. Nyquil and breath right strips. Probably using NyQuil every night is not a good idea, but could perhaps use on occasion, or some other nasal dilator drug such as asthma medications/ steroids. But the breath right strip can be used all the time, and it really does open up your nasal passages noticably in my experience. Maybe worth a try.
Edit:
More ideas: sleep on your side, when sleep on your back stack multiple pillows to lift your head higher up (seems to help IME).
Depends on what exactly is going on with a given person's airways. Expansion is the best treatment for poor nasal breathing, but if you're got a narrow pharynx going on also, you probably need that MMA.
I won't advise anything. Only you can figure out eventually what's helping you
But the first thing is providing body with essentials.
And these for sure are balanced proteins daily. Especially first meal. And it shouldn't spike insulin = no carbs.
Food naturally balanced without manual mixing is: eggs, meat, fish, dairy
And if there isn't 10-15gram of balanced proteins body doesn't even start using it - because it's not cost effective to start machine fully.
That's why small meals are never working, only wasting body energy.
Start simple and general. it's easy to get lost in details while big picture may show something different
I fixed my histamine troubles with a specific antihistamine bacteria mix probiotic. without drugs. doctors. with the trashy internet and persistence
I didn't do anything to myself because I'm an egoist, I selfishly want to see future, of childish curiousity, I can be sick, half dead, burden to others, in don't care, I want to see cool future and I believe I can fix things, maybe I am slow, but i always get there, step by step, try after try, even if stopping and reversing bad steps.
And I refuse to believe any mental issue is irreversible. I believe we have godly bodies that given a chance can be fixed itself.
We just put inhuman things in it. Or our pregnant mothers did. But nature saw it all and worse.
Nobody offered or was willing to test for anything. I was gaslit and sent to psychiatrists any time I tried seeing a doctor.
By now, it's not my only debilitating chronic condition, and no matter PAP, meds or how hard I try, I'm not capable of basic functioning. Making appointments is extremely difficult, earning money is unrealistic.
In all honesty, I think it's probably too late for me. I have nobody who'd take care of me, and I can't do it myself. My life will eventually end by my own hand, and I don't understand why I'm putting it off.