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Sleep apnea pill shows striking success in large clinical trial

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Re: Sleep apnea pill shows striking success in large clinical trial

#101
post #6

[flagged]

Simple solutions to complex problems often aren't solutions at all.

I didn't intend it like that, it's a lighthearted comment on a forum where people exchange ideas. Just wanted to share something that helped me with snoring and closing of the airways. Does every comment need to be a carefully calculated response that provides complex insights?

Edit: It also occurs to me that a sleep apnea pill sounds like a simple solution to a complex problem if it actually works. And as I read it, looks like it targets the same muscles that are trained by proper tongue posture. So there is something to it, don't you think?

Re: Sleep apnea pill shows striking success in large clinical trial

#102
post #70
post #30

Earlier quoted context omitted.

Those who can tolerate the general CPAP experience, have bed partners who tolerate it, and don’t experience detrimental effects should absolutely use it when there are no comparable solutions. However there are lots of perfectly legitimate reasons why not everyone can, and having alternatives (which do also come with side effects) to consider is amazing for the community overall. It’s legitimately great that it sound…

Almost everyone can tolerate CPAP. The problem is that the medical establishment sucks at helping people adjust and is awful at properly titrating them. Followup is abysmal. If they did a better job of that, compliance numbers would skyrocket. Skepticism is very much warranted. CPAP is the gold standard because nothing has come along that comes even close. I'm much more optimistic about an upcoming generation of micr…

*Apap > cpap, but most people call apap cpap …

Re: Sleep apnea pill shows striking success in large clinical trial

#103

Atomoxetine can have some super nasty side effects, and I wouldn't be surprised if it only works for some people. It's a fickle drug in my experience.

This comment needs to be higher. Atomoxetine is also known as Strattera and is prescribed for ADHD. I tried it for less than a week and had to stop because there were VERY painful side effects _down there_. I’m also a CPAP user and I’d 100% keep using it rather than go back on atomoxetine.

Same!

I have no idea what HN's tolerance is for the relevant medical language, so I'll put it like this: when I was on atomoxetine and after engaging in ahem activities, my pelvic floor muscle would stay contracted for something like 10 minutes. Not only was it super painful but it also made it so that I couldn't urinate at all until those 10 minutes had passed.

It was the weirdest thing.

Re: Sleep apnea pill shows striking success in large clinical trial

#104
One thing that I've found very helpful, and wish my doctor had mentioned: when putting on the CPAP (nasal pillows in my case), time turning it one with your breathing such that the machine first kicks in during an inhale.

That's it. It sounds trivial. But my biggest problem[1] with the CPAP is that it feels like it's smothering me. I can get more air in, faster, without the CPAP, and I still vividly remember the initial months when I would rip it off in frustration just to be able to breathe.

The thing is, I wasn't wrong. When I go to bed, I move around a little to adjust my pillow and lean over to grab the headpiece and turn it on, and all that movement means my oxygen requirements are temporarily higher. Putting on the CPAP immediately restricts airflow, so of course I hate it even though I can forcibly breathe through it.

But timing it so that it adds airflow (during an inhale) makes me feel like it's helping, not smothering. I can still breathe a little harder while settling down, but psychologically it feels way better to have it helping me breathe instead of fighting me. I wish someone had suggested this early on.

I don't have an answer for my upcoming 12-hour overnight flight, though. Other than a long series of 5-minute half-naps, watching a lot of movies, and sacrificing the first day to stumble around and catch up on rest. (Which, to be fair, I'd be doing anyway with the time change.)

[1] Well, the other problem is the noise. My partner is a light sleeper, and if she's suffering during the night from my noise, I'll be suffering during the day. We've largely resolved that with a white noise machine closer to her, and learning how to maintain a proper seal with various strap adjustments and position shifts. I only get a shove in the night once every few months at this point. It's almost like she feels entitled to sleep at night too...

Re: Sleep apnea pill shows striking success in large clinical trial

#105
post #70

Earlier quoted context omitted.

Almost everyone can tolerate CPAP. The problem is that the medical establishment sucks at helping people adjust and is awful at properly titrating them. Followup is abysmal. If they did a better job of that, compliance numbers would skyrocket. Skepticism is very much warranted. CPAP is the gold standard because nothing has come along that comes even close. I'm much more optimistic about an upcoming generation of micr…

*Apap > cpap, but most people call apap cpap …

I disagree. APAP is reactive, by the time it kicks in you've already had an event. But if it works for you, all the better.

Re: Sleep apnea pill shows striking success in large clinical trial

#106

Earlier quoted context omitted.

Do you wear a cpap? It sucks. I have an OA now. And it also sucks.

My CPAP provides 3 massive life changing benefits: - a proper night's sleep - moisture that ensures I don't wake up with a massive sinus headache that destroys my morning - letting my partner have a proper night's sleep Any one of the 3 would be worth the minor inconveniences of a CPAP.

I can't agree more!

I was always tired. Falling asleep was a chore. Waking up was worse.

I pushed back against the sleep study for so long because I feared the mask. The sleep study was the best night of sleep I could ever remember.

Nasal Pillow CPAP, even with the little extra burden when travelling, has changed my life for the better - full stop.

Re: Sleep apnea pill shows striking success in large clinical trial

#107
After nearly 14 years of using a cpap (https://theprogrammingbutler.com/blog/archives/2014/02/13/sl...) and then bipap religiously I was able to switch away recently.

All I do now is use now is a piece of kinesthetic tape to make sure my mouth stays closed and that somehow works. I’d just done another sleep study to see if I had options other than the bipap because it’s been filling me with air since I was intubated and put on life support overnight a few years ago. I’ve been miserable the past few years and doctors couldn’t figure out how to fix it. Bipap helped a bit but not completely.

I’d even turned down the cpap and then bipap to the lowest settings, which was enough to help me have a great night of sleep, but still the balloon effect. Then I was chatting with a family member and they mentioned trying and liking taping, something they saw on TikTok, and I told them it was a terrible idea. They assured me it was helping them avoid the snore and they woke up less dehydrated and better rested.

So I gave it a go. I wear my Apple Watch when I sleep and have been able to confirm on at least 3 occasions before I started taping that the sleep apnea stats always lined up with when I was experiencing the effects of apnea. The first night I taped but still used the mask and was fine the next day albeit filled up with air. Then I tried a night taping without my cpap and someone to monitor me and make sure I didn’t die and I couldn’t believe when I woke up in the morning completely rested and not feeling awful from the balloon effect.

I’m not suggesting what worked for me will work for anyone else, but thought I’d share as my quality of life has gone way up the past few months.

Re: Sleep apnea pill shows striking success in large clinical trial

#108
post #104

One thing that I've found very helpful, and wish my doctor had mentioned: when putting on the CPAP (nasal pillows in my case), time turning it one with your breathing such that the machine first kicks in during an inhale. That's it. It sounds trivial. But my biggest problem[1] with the CPAP is that it feels like it's smothering me. I can get more air in, faster, without the CPAP, and I still vividly remember the init…

Having used multiple machines; some are "better" at this than others -- might be time for you to just get a new one? Probably technically you want an APAP.

Re: Sleep apnea pill shows striking success in large clinical trial

#109
post #7

I swear CPAP wouldn't get such a bad rep if the media would stop using pictures of men with obscenely large full face masks. The most commonly used CPAP mask is probably the minimalist Resmed P10 [1]. It looks a lot less intimidating than a bulky full face mask. And in most cases, full face masks aren't needed (no sources to cite, but titrating to the correct pressure allows most people to breathe through their noses…

The problem with CPAP is that 40% of patients don't tolerate it even for the 4h/night defined as treatment compliance, while most of the rest use it less than the full duration of the night, with studies demonstrating that treatment compliance depends on efficacy. And this is for traditional OSA in men - people with Upper Airway Resistance Syndrome(mostly identical mechanism as OSA, less oxygen desaturation, more aro…

I will keep beating this horse to death, but the vast majority of those who cannot tolerate CPAP are improperly titrated and/or have a mask that isn't right for them and/or are having leaks. Often all of the above.

That 4 hours is just another symptom of a medical establishment that's not interested in treating patients, but is only interested in numbers. If you want maximum benefits from CPAP, you have to wear it all night every night. If you can't do that, there's a problem that needs to be addressed.

It would be more accurate to say that 40% of people who are offered CPAP are not receiving proper guidance and followup. This is not their fault. This is not CPAP's fault. This is one of medicine's biggest failures.

And yeah, UARS is an entirely different shitshow. It's finally starting to be recognized, hopefully that will lead to improvements for patients.

Re: Sleep apnea pill shows striking success in large clinical trial

#110

I don't have sleep apnea but during allergy season my nose does like to get stuffed at night causing my mouth the get really dry which causes me to wake up a few times. I've been using nasal strips for the last few weeks and those events have stopped. I swear I also feel better during the day.

Fluticasone can be especially helpful for people with allergies and/or OSA. "Intranasal fluticasone treatment may be useful for patients with nasal obstruction-related obstructive sleep apnea to improve sleep quality and limit daytime dysfunction." https://pubmed.ncbi.nlm.nih.gov/31521518/ "Intranasal steroids and montelukast did not decrease AHI; however, total sleep time and percent of stage R sleep significantly i…

I find the most effective nasal sprays also give me terrible withdrawal symptoms. Like, I'd use them for a few days at night, alternating nostrils and then when I stop, my nose is closed shut for the next few days.
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