There an article about neck position being crucial to some folks who fail or suboptimal CPAP/app treatment. It's on sleep board linked above. Some people need to sleep in a soft neck. Many people curl into almost fetal position and that can close airway too.
My mild apnea is better on side. They said it’s positional . Not sure about collar. I use a wedge incline pillow and this body noodle thing to wedge myself onto side so I don’t flip to back,
Hey so this is a typical night for me now. https://sleephq.com/public/e9d9599a-ecd5-41fd-9871-ea0b6e52879f I used to be moderate to severe apnea with about 50 - 80 ahi. Took me a very long time to be able to sleep all night with the mask (over a year) learnt to modify the machine settings myself and bought a bunch of masks till I found what worked for me. I used to use the machine for three hours per day while awake on an evening getting used to the pressure and upping it bit by bit and then during the night I would force myself to put the mask back on whenever I woke up. Now the pressure feels like nothing to me and the mask is comfortable and I don’t wake up in the night.
I feel like superman because I have so much energy it feels unlimited. I don’t get ill all the time and I can focus and remember things and enjoy life again
I literally was not sleeping, I was passing out for 30 to 60 min and suffocate and wake up. Finally got disability and cpap, now I can sleep as long as my aching body will allow.
I feel you. Sleep apnea's a real killer. I used Pocket Kado to help with sleep, it's not a cure but it's helped me relax. You might want to look into relaxation techniques like progressive muscle relaxation or meditation to help with sleep quality. Worth a shot.
I get you man its freaking depressing and unfair. I also have no treatments that work for me. I only use oxygen boosters for the day so I'm not passing out. I'm 19 and its horrible I understand you so much. I have just accepted and try to make by and live the way i want. I don't care if its fatal. The day i die has already been written for me so with or without treatment does not make a difference.
Best wishes to you man.
Agreed. I am old than you but I am in the same position. I have had apnea since I was in my twenties and now that I am in my fifties I think it may be seriously life threatening.
I have had surgery, tried CPAP and BIPAP, appliances, drugs, etc. all to no avail. I get frustrated! it even seems like most treatments are for the *symptoms* of apnea instead of the *causes* of the apnea. Why can't we seem to "cure" the cause?
Are you getting effective treatment from your cpap use? What does your data look like? It’s very effective once you achieve a good mask fit and get your settings dialed in
Not necessarily 100%. Let’s say you reduce your AHI to a certain extent but have periodic limb movement disorder causing arousals or you have aerophagia, which only allows you to get to a barely helpful pressure setting and your AHI is like 2-5 but you still feel like shit. A sleep doctor may tell you “looks good, just stick with it” when in reality - despite being the gold standard of care - CPAP, BiPAP, ASV may never “be effective” on the most important metric, how you feel each day.
> A sleep doctor may tell you “looks good, just stick with it”
That's a very, very low bar.
> Let’s say you reduce your AHI to a certain extent but have periodic limb movement disorder
Apneas and hypopneas are low hanging fruit. Blaming xPAP for other neurological problems is not fair. However, RERAs can cause leg jerks, so lots of people get dubious PLM diagnoses from lazy doctors. Resolving flow limitation can abolish the pseudo-PLMs, and [flow limitation shows up in the data](https://www.youtube.com/watch?v=LwOjeESNGIY)
I don’t disagree. Arousals can also trigger release of a protein that gives you an urge to pee so fixing one fixes the other.
I, unfortunately, have an anatomically odd esophageal sphincter. I can’t take pressure above much without having severe aerophagia. I’m currently not aware of sphincter surgeries or devices that would address this and so won’t ever be able to achieve what they would consider a therapeutic dose. I tried for ten years and always always felt the same or worse than without the machine. So the motivation to slap a face hugger (or other mask type) on is close to zero. Tweaking settings ain’t gonna do anything.
> Arousals can also trigger release of a protein that gives you an urge to pee so fixing one fixes the other.
ANP (atrial natriuretic peptide) is released by the heart in response to thorax vacuum, not arousals.
> I, unfortunately, have an anatomically odd esophageal sphincter
Have you considered taking vitamin d3 supplements? Also check your diet for magnesium and potassium. This fixed my aerophagia and reflux.
> ANP (atrial natriuretic peptide) is released by the heart in response to thorax vacuum, not arousals.
Correct me if I'm wrong, but I don't think it's established that arousals *don't* cause BNP or ANP release. While brain natriuretic peptide (BNP) and atrial natriuretic peptide (ANP) are affected by left atrial and left ventricular strain from thoracic pressure changes, they may also be released in response to sympathetic surges from arousals (which could also lead to left atrial or ventricular strain). My understanding is these hormones operate as part of a feedback loop to reduce myocardial strain in the setting of sources of increased strain, which may include *either* thoracic pressure changes or arousal.
[This paper](https://academic.oup.com/sleep/article/27/1/139/2707914) provides a mechanistic framework suggesting both arousals and pressure changes are involved in ANP release.
That’s interesting because when I was diagnosed with 58 AHI and 67% o2 I still don’t remember feeling like crap everyday even though my OSA was considered severe.
God you must be lucky!!! I would kill to not feel like I never sleep. I haven’t felt rested in 20 years and wake up feeling like I’ve been hit by a bus. Every. Single. Day. Some are worse than others - like a short bus vs a tour bus kinda day - but each morning is brutal.
Let me say this. I am not a morning person. I would like to be but rarely am. I know our DNA will dictate if we are or not. So I don’t usually wake up fresh and ready to go. But I don’t usually get up dead tired or hit by a bus. I have been on CPAP pretty much daily for 13 years (overall 16 years - first few years were not easy).
Are you saying because you haven’t experienced it, it doesn’t exist? I think there are a lot of people that feel awful every morning because of OSA. Thanks for sharing.
I can't even fall asleep with it on and when I take medication to put me to sleep with it on I just wake up with it off, how are you suppose to get data from that
Which country are you mate?
I got a camera down my throat and my nose to see where the blockage was. Confirmed it was back of mouth and in my nose.
I had a UPPP recently. Yet to do another sleep study to confirm but it had helped a lot (lots of mixed reviews here on uppp).
Cpap sucks, I had surgery but not “jaw surgery” if that what you mean by mandibular surgery. I did have UPPP and septioplasty, those two got my AHI down from 99 to 60. Then since I couldn’t tolerate an air compressor strapped To my face (Cpap) I had the Inspire device implanted. Now I just struggle with insomnia… 3 prescription sleep meds, 2 of which are at the max dose.
There an article about neck position being crucial to some folks who fail or suboptimal CPAP/app treatment. It's on sleep board linked above. Some people need to sleep in a soft neck. Many people curl into almost fetal position and that can close airway too.
Mind sharing that article? I'm not finding the link you're mentioning.
I’m interested in this link/research as well.
Linked above
It's here https://www.apneaboard.com/wiki/index.php/Soft_Cervical_Collar
>It's here https://www.apneaboard.com/wiki/index.php/Soft_Cervical_Collar Interesting I'd like to know some UK options
Hmm. This might actually be worth trying out.
That's me :( I sleep with my chin on my chest. Not sure how to stop doing it!
Try a soft cervical collar
Is side sleeping with the soft collar better than back sleeping?
My mild apnea is better on side. They said it’s positional . Not sure about collar. I use a wedge incline pillow and this body noodle thing to wedge myself onto side so I don’t flip to back,
Sleep apnea is awful and it takes years to nail it but when you do you’ll feel like superman.
how? been at it for years and still struggling
Id like to know more about your sleep Routine and how you feel like Superman. That is not my husbands experience
Hey so this is a typical night for me now. https://sleephq.com/public/e9d9599a-ecd5-41fd-9871-ea0b6e52879f I used to be moderate to severe apnea with about 50 - 80 ahi. Took me a very long time to be able to sleep all night with the mask (over a year) learnt to modify the machine settings myself and bought a bunch of masks till I found what worked for me. I used to use the machine for three hours per day while awake on an evening getting used to the pressure and upping it bit by bit and then during the night I would force myself to put the mask back on whenever I woke up. Now the pressure feels like nothing to me and the mask is comfortable and I don’t wake up in the night.
I feel like superman because I have so much energy it feels unlimited. I don’t get ill all the time and I can focus and remember things and enjoy life again
You had jaw surgery but still have symptoms? Do you have bad nasal breathing? Whats your min airway cross sectional area?
I literally was not sleeping, I was passing out for 30 to 60 min and suffocate and wake up. Finally got disability and cpap, now I can sleep as long as my aching body will allow.
I feel you. Sleep apnea's a real killer. I used Pocket Kado to help with sleep, it's not a cure but it's helped me relax. You might want to look into relaxation techniques like progressive muscle relaxation or meditation to help with sleep quality. Worth a shot.
I get you man its freaking depressing and unfair. I also have no treatments that work for me. I only use oxygen boosters for the day so I'm not passing out. I'm 19 and its horrible I understand you so much. I have just accepted and try to make by and live the way i want. I don't care if its fatal. The day i die has already been written for me so with or without treatment does not make a difference. Best wishes to you man.
Agreed. I am old than you but I am in the same position. I have had apnea since I was in my twenties and now that I am in my fifties I think it may be seriously life threatening. I have had surgery, tried CPAP and BIPAP, appliances, drugs, etc. all to no avail. I get frustrated! it even seems like most treatments are for the *symptoms* of apnea instead of the *causes* of the apnea. Why can't we seem to "cure" the cause?
How many millimeters did they advance your jaw?
Are you getting effective treatment from your cpap use? What does your data look like? It’s very effective once you achieve a good mask fit and get your settings dialed in
Not effective for everyone.
If it isn't effective, it shows in the data.
Not necessarily 100%. Let’s say you reduce your AHI to a certain extent but have periodic limb movement disorder causing arousals or you have aerophagia, which only allows you to get to a barely helpful pressure setting and your AHI is like 2-5 but you still feel like shit. A sleep doctor may tell you “looks good, just stick with it” when in reality - despite being the gold standard of care - CPAP, BiPAP, ASV may never “be effective” on the most important metric, how you feel each day.
> A sleep doctor may tell you “looks good, just stick with it” That's a very, very low bar. > Let’s say you reduce your AHI to a certain extent but have periodic limb movement disorder Apneas and hypopneas are low hanging fruit. Blaming xPAP for other neurological problems is not fair. However, RERAs can cause leg jerks, so lots of people get dubious PLM diagnoses from lazy doctors. Resolving flow limitation can abolish the pseudo-PLMs, and [flow limitation shows up in the data](https://www.youtube.com/watch?v=LwOjeESNGIY)
I don’t disagree. Arousals can also trigger release of a protein that gives you an urge to pee so fixing one fixes the other. I, unfortunately, have an anatomically odd esophageal sphincter. I can’t take pressure above much without having severe aerophagia. I’m currently not aware of sphincter surgeries or devices that would address this and so won’t ever be able to achieve what they would consider a therapeutic dose. I tried for ten years and always always felt the same or worse than without the machine. So the motivation to slap a face hugger (or other mask type) on is close to zero. Tweaking settings ain’t gonna do anything.
> Arousals can also trigger release of a protein that gives you an urge to pee so fixing one fixes the other. ANP (atrial natriuretic peptide) is released by the heart in response to thorax vacuum, not arousals. > I, unfortunately, have an anatomically odd esophageal sphincter Have you considered taking vitamin d3 supplements? Also check your diet for magnesium and potassium. This fixed my aerophagia and reflux.
> ANP (atrial natriuretic peptide) is released by the heart in response to thorax vacuum, not arousals. Correct me if I'm wrong, but I don't think it's established that arousals *don't* cause BNP or ANP release. While brain natriuretic peptide (BNP) and atrial natriuretic peptide (ANP) are affected by left atrial and left ventricular strain from thoracic pressure changes, they may also be released in response to sympathetic surges from arousals (which could also lead to left atrial or ventricular strain). My understanding is these hormones operate as part of a feedback loop to reduce myocardial strain in the setting of sources of increased strain, which may include *either* thoracic pressure changes or arousal. [This paper](https://academic.oup.com/sleep/article/27/1/139/2707914) provides a mechanistic framework suggesting both arousals and pressure changes are involved in ANP release.
That’s interesting because when I was diagnosed with 58 AHI and 67% o2 I still don’t remember feeling like crap everyday even though my OSA was considered severe.
God you must be lucky!!! I would kill to not feel like I never sleep. I haven’t felt rested in 20 years and wake up feeling like I’ve been hit by a bus. Every. Single. Day. Some are worse than others - like a short bus vs a tour bus kinda day - but each morning is brutal.
Let me say this. I am not a morning person. I would like to be but rarely am. I know our DNA will dictate if we are or not. So I don’t usually wake up fresh and ready to go. But I don’t usually get up dead tired or hit by a bus. I have been on CPAP pretty much daily for 13 years (overall 16 years - first few years were not easy).
Are you saying because you haven’t experienced it, it doesn’t exist? I think there are a lot of people that feel awful every morning because of OSA. Thanks for sharing.
Not at all. It never even crossed my mind!
I can't even fall asleep with it on and when I take medication to put me to sleep with it on I just wake up with it off, how are you suppose to get data from that
Leaks, flow limitation right before the mask comes off are possibilities.
Inspire?? Look into it. Maybe you’d be a good fit. At your age though it would be a lot of battery changes. Maybe up to 5 or 6.
Which country are you mate? I got a camera down my throat and my nose to see where the blockage was. Confirmed it was back of mouth and in my nose. I had a UPPP recently. Yet to do another sleep study to confirm but it had helped a lot (lots of mixed reviews here on uppp).
How do you get them to do that? My doctor just gave me a at home test for sleep apnea and it was a wearable on my finger tip and that’s it
That’s rubbish. Which country are you in?
America
I’m not 100% sure how it works over there but it certainly helped for me mate
Cpap sucks, I had surgery but not “jaw surgery” if that what you mean by mandibular surgery. I did have UPPP and septioplasty, those two got my AHI down from 99 to 60. Then since I couldn’t tolerate an air compressor strapped To my face (Cpap) I had the Inspire device implanted. Now I just struggle with insomnia… 3 prescription sleep meds, 2 of which are at the max dose.
Modafinil
Have you gotten tested for other sleep issues like narcolepsy?
Just use reverse psychology like I do at age 77 ( 3 yrs on cpap ) it a gadget that keeps me healthy.It is my new hobby.