sleep apnea: what I wish I knew from the start.
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- เผยแพร่เมื่อ 4 ต.ค. 2023
- Learn what I wish I knew when first diagnosed with Sleep Apnea, and avoid making the same mistakes.
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Good luck friends! :) Don't hesitate to leave any comments or questions you may have!
This is not medical advice.
THANK YOU for this Video and shouting out other TH-camrs to watch👏🏼
I wish I had pushed back 30 years ago when I was told I was a borderline sleep apnea sufferer (which wasn't worth treating) after a home oximetry test. At the time I had a job that included a lot of driving, I found myself stopping every 30 minutes because I was so tired. I quit the job after I fell asleep at the wheel on a busy highway one day. Apnea has affected me all my life without me knowing. I was young, ideal weight, so perhaps that's what threw them off the trail at the time, or the fact that they didn't have the resources to really look into my problems. This year I finally got diagnosed with severe sleep apnea and started CPAP, but it was me that ended up going to a doctor and suggesting this is what we investigate after exhausting many other routes along the way. I've been on CPAP for around 2 months now, I made a conscious decision to try make it work from day one, to not think of the inconveniences and the discomfort that can arise. My attitude to sleep is now slowly changing. I used to avoid going to bed because I saw sleep as somewhat of a waste of time. When I saw my sleep study results I realised why, I was having more breathing problems per hour than there were minutes, and the average length of each event was more than a minute (sounds impossible!). In fact I wasn't really sleeping at all. So to anyone reading this, if you think you've got nighttime breathing problems, or if someone you are related to has apnea (it often runs in the family), then please get checked out, and push back if you are not getting the help you think you need. You can take charge of your health issues. Good luck.
It's stories like yours that compelled me to start this channel. I'm sorry you went through that man, but I'm glad to hear you've started therapy. One day they'll look back in horror at what they caused and how many patients they missed in screening. Thanks for sharing, and I hope you're getting some better sleep. I'm always here to answer questions should they ever arise. Good luck
Thank you, and thank you for raising awareness and helping out the community, it's much appreciated @@CPAPfriend
Ohh, the stories I could tell of people who either refused to treat mild sleep apnea, who were not told of other potential treatments for mild apnea, or who were told that their mild sleep apnea was inconsequential. Further, it is amazing how simple we can treat some severe cases and how difficult it is to treat some mild cases. Finally, it is amazing how very consequential mild apnea can be for some people, like me, who suffer from presumably unrelated problems. My best to you.
" I used to avoid going to bed because I saw sleep as somewhat of a waste of time. "
I could have wrote this. This was me for so many years, even when I was younger. I just got my machine now and still have those nights. I want to change. Thanks for sharing.
Wise advice from the young man ….best I’ve listened to .
I appreciate the feedback, and thanks for tuning in!
Good lighting.
Good content.
Beard's looking Socratic.
Thank you friend for this video. I need to play it over and over as a mantra to keep going in the right direction to achieve optimal health and quality of life for me and my kid's.
This is a great video. I'm looking forward to more content.
Just got results today and I’m in total shock that I was 53 on the index.
I have suspected I have apnea for quite a while but assumed it was mild/moderate.
But in recent months I’ve been suffering some cognitive issues and forced myself to get checked up.
I’m lucky to live in France where taxes might be high, but a nurse is coming next week to my house to bring me a cpap and show me how to use it and set it up correctly.
I’ve been struggling all day with the fact that I’ve done significant damage to my health over the untreated years and now I’m going to look and feel like a fighter pilot every night!
This video was what I needed to hear right now!
If the cpap is difficult I’m determined to keep at it until I can live with it.
Thanks bro…
Subscribed. 🙏🏽
Awesome to hear you're on your way to receiving treatment :)
The body is far more resilient than most give credit. You're going to be ok
Thank you for the kind words, and I'm happy to hear you've found some value.
I spent six years studying, managing, and mostly fixing the issues of patients for whom CPAP “just didn’t work.” The reasons it doesn’t work can usually be dealt with. I like the skeptical examination, and some of your observations are way beyond what many sleep doctors even entertain. Good stuff. Wish I could just sit and talk with you over a cup of coffee about these things. Signed, RPSGT, CPFT, RT, AE-C (and high school English teacher-go figure).
The discussion of wild-hair awakenings in the presence of mild events and those who don’t wake up in the presence of life-threatening sleep apnea is very interesting.
I agree! I try to drive that point home. Most problems are fixable, so if you're reading this my discontent PAP user, then I say, "a little further my friend".
Let's talk sometime Tojo!
This guy is top notch! Thanks for sharing your knowledge!
😎
Well said. Everyone should watch this video.
Hello, thank you very much for your video (read help). Here in the Netherlands I also get help from fellow patients on an apnea forum. I follow you with great interest and I hope you know that you are really helping me!
I really appreciate you taking the time to let me know. Good luck with everything anon :)
Glad I found your channel. Thinking of starting one of my own when I retire in six months.
I think that would be awesome. There's no shortage of patients in need of clarity and guidance.
Great advise thank you
You are so welcome
Amazing work. Keep making a positive impact! ❤
Thank you, I will :)
Fantastic video.
thanks friend :)
I needed to hear this today. Currently, struggling with cpap machine.
I have used the Apneaboard Forum he mentions. People on it are very dedicated to helping CPAP users through their problems. Check it out. Just Google Apneaboard Forum. - Good luck.
Chin up! My Knightsbridge strap should be here soon.
Great Video. Really Helpful.
Recently diagnosed, using BiPAP.
Thanks! I'm glad it was helpful, and good luck moving forward.
Thanks for the thought on the holistic nature of getting better. It’s so easy to forget that everything is connected at times, especially given the linear fashion we often move through the diagnoses from all the different specialists. Personally I was first diagnosed with depression, later an alert nurse practitioner asked the right question and a simple blood test later - hypothyroid, now on medication for depression and thyroid I was still getting far from good results. I became convinced that OSA was the culprit, but getting a sleep test proved difficult, the sleep doctor (really the local pulmonologist) looked at me when I entered his office and said right off that I did not have sleep apnea; he made quite clear he would bet his medical license and reputation on his snap diagnosis. It was very interesting to see his face when he looked at my sleep study- AHI of 51. This just leads to the point that getting specialists involved can be counterproductive since they love the scapegoating game; after that when I still was feeling like crap the sleep doctor said my numbers looked fine and I should go see my thyroid doctor, thyroid doctor liked my lab results and said I should go see the sleep doctor; nothing holistic about this routine. Anyway, really good video.
For what it's worth, I hear variations of this story all too often. It saddens me and it's also part and parcel why I decided to embark on making these videos. I too was confused with the treatment I was receiving for a long time, but, in retrospect, I know now how wrong and unqualified many of the doctors were who consulted / diagnosed my case, and I now consider it a social responsibility to prompt others to be skeptical of their diagnosis or lack thereof, especially in the context of Sleep Medicine.
I really enjoyed the holistic nature of the advice you gave in this video and agree: Re attitude: from the day I was diagnosed with severe OSA, reading up I noted many people give up. I made a decision right then I would never give up. And I haven't missed a night (except when on flights) Also, you are right about nobody caring. it's only human to feel somewhat vain and self-conscious. Admit don't want people to see me in the equipment. However, as the saying goes "you wouldn't worry what people thought about you if you realise how seldom they did ". Yes seek help. Have tried the sleep apnea board a few times, but I haven't found them helpful for me, maybe they found my questions boring! So am considering paying for a consultation with lanky lefty as I'm looking for the holy grail of low AHIs, stable O2 (not dropping below 95%)and want to get my flow limit below 0.10. but it's always much higher than that. I play around with the settings hoping to hit on the right thing one night! Please keep your videos coming. You are clearly very knowledgeable
Thanks for watching, and good work in sticking with it. Thanks for the kind words. If you'de like, I could take a look at your OSCAR data over zoom.
Thank you for telling us of your experience
My pleasure :)
Great video man!!
Glad you found some value :)
Well said!
thank you!
Thank you!
You're welcome!
Great video. As a med student who has sleep apnea, I agreed with alot of the things you said.
Looking forward to more content from you
Thanks for watching! I followed you a while back. Thanks for the valuable content! I think I recall somewhere in one of your videos that you're in Canada. If so, which province?
I'm in canada!@@CPAPfriend
I really like your candor in sharing your situation. I’ve been on a CPAP machine for almost 10 years now and I’m almost 100% compliant part of that comes because I in an earlier life was in respiratory therapy and still have a license to practice here in the United States so I know how important it is, but I wanted to say the disappointing thing here is a put everybody on CPAP and they don’t try other methods such as a mandibular device for the teeth to push the job forward. I brought this up with my practitioner and he said because it hadn’t been approved by Medicare here that usually wasn’t the first line and such since that time it has been approved by Medicare, but you have to put quite a bit out of pocket and I went to that device for a while and was able to successfully get off of the CPAP howeverI end up having to go back on because it seemed that it was only good for me for about six months maybe because I put some additional weight on and like you say lifestyle is very important keeping the weight off and doing muscle exercises for the throat kind of the way that I’m gonna be going now and see if the mandibular thing kicks back in to be able to to be used. Thanks again great
Also, I meant to say if anybody’s gonna make a change out there, they should have a 24 hour oxymetry system that they can depend upon to watch their changes to see if they’re actually getting the benefit of getting good oxygen during the night. That’s at least the minimum if you’re making any adjustments.
I appreciate your kind words, and thank you for sharing your story! The MAD could have moved your teeth and the titrated position was lost because of it.
Dope vid. Thanks
You're worth it
THANK YOU 🙏
No problem 😊
Best video on OSA i've ever seen, thank you! I am looking for a bimax op, because CPAP or protrusion splint doesn't work for me. Greetings from Germany/Stuttgart.
sehr gerne :) Viel glueck!
I developed treatment resistant insomnia in my 50s. My primary ruled out OSA because I was normal weight and my neck wasn’t thick. Eventually bad snoring ended up getting me diagnosed with OSA. The insomnia ruined 10 years of my life, which included being diagnosed with mental illness and put on a lot of psych drugs. On CPAP now but having trouble using it more than 5 hours. OSA sucks.
I'm sorry you've gone through that. That's a tough one. Do you find the limited CPAP therapy you do get to help?
@@CPAPfriend Yes, definitely helps. Saw a journal article, based on a survey of CPAP users, more than 6 hours per night had limited benefits.
So less then 6 hours has limited benefits ? How long should i be using the cpap 2 see benefits ?
It would be interesting, groove9tube, to get a full run-down on why you think that you only sleep with the PAP for about five hours, what your habits are when you awaken on the device, etc. Insomnia is a tremendously consequential comorbidity and one of the most difficult sleep issues to deal with. How aggressively have your sleep practitioners delved into the suboptimal sleep time on PAP?
Cool man.
Thanks for the informative video , you speak common sense 👍 Im in the UK & have severe obstructive sleep apnea, I was given a cpap machine in November & have struggled so much with it & tbh I still am. I waited a long time to get an appointment at the sleep clinic & then a long time to be diagnosed & get the machine & it has given me other health problems, mouth breathing is downright dangerous & I didn't realise the consequences , If anyone is diagnosed with sleep apnea please address it as soon as 🙏 possible
You're very welcome. It's good to hear you're on the right path! Good luck with everything
Sorry it took so long, but I’m glad you are now being treated. May you have more dream sleep and remember dreams less often! (You may ask me what that means if you can’t figure it out.)
I have tried everything to get use to my cpap mask to no avail. I already have a very difficult time trying to fall asleep to start with and this makes it even worse. I tried to download the oscar and can't figure it out to see where my issues are but I deal with "bubbles in my mouth" that keep me awake so i eventually give up. I do snore according to my husband so i can't sleep with him if i don't wear it either so i now sleep in a different room. I do know sleep apnea can occur in all ages. My granddaughter has severe sleep apnea at the age of 11. She was born with a tumor near her brain and it affected her nasal issues and ultimately caused learning disabilities due to it!!!!!
Masks and leaks are the hardest part in getting PAP therapy to work effectively. There are many avenues to explore, and I hope you keep at it. There are lots of helpful forums out there where others who have taken your path can help you get to where you're going
I agree with our CPAPfriend. Masks are the most common cause for failure. The second most common cause is simply not getting through the rough patches. In behavioral health we say that it takes 6 weeks to make something part of your routine. So I hope you’ve been able to find the routine, will stick with it long enough that the little complaints fade away, will find a way to aggressively pursue all mask styles, and that you will become the best CPAP expert you know. Most of all, if you’ve struggled with high blood pressure, may your blood pressure come down! If you have suffered with headaches, may they subside. If your thoughts are scattered, may they begin to fall in place. And so much more. Keep plugging.
There are several different types of mask, and many different models. If you're having mouth leaks then either tape or a full-face mask will help... I had to go FF because I need to mouth-breathe sometimes when I have tongue problems. Tell us your mask, machine, and what problems you're having getting Oscar to load/work.
great video. like and thumbs up for the algo. but now try to imagine, for a second, that its not just those seeking answers to questions like the root cause of sleep apnea being marginalized online, but anyone who questions any part of the current status quo, and then you'll have imagined the world we live in today
Well-said. There's no money in peace or health.
This! I’m a sleep medicine PA and have been treating OSA for more than 10 Years. I’m going to say that at least 40% of my patients do not fit the old stereotype. I always say everyone should have a sleep study. But there is one flaw, we need enough sleep present to make the study valid, ie at least 4-5 hours.
Thanks for sharing your experience. It will help patients who wander into reading it. With awareness, we can do better.
At my sleep study 14 years ago my insurance required 4 solid hours of sleep or I would have to come back and do *two* night study. Thankfully the tech had mercy on my (my AHI was over 100) and stuck a mask on me after about 3 hours of not-sleep. I went *out* and they had to kick me out after what seemed only a moment... 'the sun's up, it's 8am, we have another patient waiting'. Then, of course, I had to wait two weeks for my machine. Insurance in USA is such a scam, now I just buy everything cash instead of trying to fulfill a multi-kilobuck deductible.
inclined bed therapy of Andrew K Fletcher, the only thing you should know.
I found out I had sleep apnea because my red blood cell count was too high. My Dr tested my blood several times and sent me for a sleep test when the count stayed high. Because I am a mom I just thought I was tired from that. She said that was the way my body was trying to get more oxygen at night by increasing the number of red blood cells. I know I snored but lots of people snore so didn't think that was a problem. I was found to have severe sleep apnea and got a cpap machine. Can't say enough about how well that has worked for me. I educated myself and have been doing exercises for my tongue and throat and am getting more fit to try to help with my sleep apnea. Not sure if I'll ever be able to get off my cpap but I'll do all that I can. I do still have my tonsils and a bit of a deviated septum so may in the future see a ENT about if that to see if that is another factor along with my TMJ. For now my cpap gets me a good nights sleep and a healthier life.
It's awesome to hear patient experiences like this, and I'm sure it will instill hope or curiosity to future readers. Thanks for sharing
Whoa! Good story. I hope your care givers are keeping an eye on the red blood cell count. Is it going down? That is a possibility with CPAP use, and if not, then they will want to keep thinking about the problem from other angles. Glad you are doing better.
@@ToJoMayer Yes red blood cell count is in the normal range and has been for awhile now but we keep an eye on it just to be sure. It went down after I was treated for sleep apnea with a cpap.
@@piperlynne1hi sir my father also detect to severe sleep apnea...sir please help me please give your contact no ....so thats i message you personally .....my father also doing these exercise
Same my thoughts belongs to you...i will do everything like exercise n all for my father
I spent a lot of money on a dental implement which they claimed will cure sleep apnea, but it didn't. I had to go for CPAP machine ultimately. My advise yo everyone is to try CPAP first before dental implement.
Good advice. I agree
Exactly exactly said, i was 40 when i went to see my physician, i was always skinny, 1,68m and 62kg, whent to the doctor as i was always tired, sleepy, my wife had earing aids, so didn't hear me snoring, until we slept over with friends. . So doctor... All he said last week under that's not sleep apnea, your too skinny for that. We'll have a look at your nose, oh I see, it's not straight inside... OK was too afraid for surgery that time, last year, finally went to another doctor, he showed me the way to a sleep clinic, one night, severe snoring and apnea Was The result... Need a cpap, so next month second sleeping night at the center to find out wich mask and machine, told me also, my nose and sinussen are totally OK... Hope hope hope now... It took 25 years to find out....
Good luck, and I hope you start to get some better sleeps!
I had my adenoids removed back in like Grade 2 after not being able to breathe through the nose, so maybe that saved me from this fate. Definitely not worrying about the CPAP machine itself should speak leagues. This input after having apnea in the family and seeing sleep problems everywhere obviously. Drinking and lack of sleep are the major exacerbaters from what I've seen. Potentially nose breathing and exercising those neural pathways may be a big solution idk
It's quite possible. It might be in everyone's family / life in one way or another nowadays. Hope you're doing well buddy!
I'm actually having a tough time finding a doctor who will at least entertain the idea that I have central sleep apnea. I've seen two doctors so far for my problem, and they basically run you through their mill and send you on your way as quickly as possible without taking a deep dive into the problem. I'm convinced I don't have obstructive apnea because I can tell that I don't even make attempts to breathe. Both doctors basically said something along the lines of "I've only seen 4 cases of central in my entire career, so the chances of you having it are slim".
If you haven't done so already, then getting a proper in-lab sleep study might be the next reasonable step. They shouldn't be commenting on your sleep if you've yet to have one.
Try to get that sleep study .. check how many events you have and then decide what’s next. Maybe you have a mixed central with obstructive apnea or only central . For central you may need a bipap or another device. Also measure your blood oxígen during night with o2 ring it will help you to measure the impact you’re having and also ring will wake you up if your levels go too low. . Also use app to record your sleep mintal tracker or RoncoLab .. But don’t desist , you’ll find a solution . Keep pushing !
I got "treatment emergent central and complex apnea" after being on a CPAP for a year. It seems weird that the treatment should make things worse. With an Airsense 10 STA my AHI is still usually between 20 and 30. I am going to download either Oscar or Skeephq because she can't tell on her app what type of apneas I havethe most for the settings. She figures it's central so she is treating it that way.
I tried Cognitive Behavior Therapy too and what a disaster! at least for me. I had a similar experience where I had to be an advocate for myself and "fight the system" or else nothing would ever have gotten done. And I was a walking zombie. Literally when the medical community shuns us they are leaving us for dead.
for the non-believers that fight that they don’t have Sleep apnea- Do this first: # 1 Record yourself with a cheap small tape recorder that only turns on when it senses noise near by. # 2 Listen to the sounds you are gasping trying to get air as you breathe from the previous night. # 3 apologize to your wife for not believing her when she said you are waking up so many times at night.and poking you to wake up. By the way - I was told my apnea was so bad I may stop breathing and never wake
up! The tape doesn’t lie. Take it your your doctor-
get a sleep analysis- get on a CPAP machine and start getting better!
you tell em
Wow! Nailed it! I was diagnosed in 2016 with OSA. I was somewhat in denial that therapy was necessary. How did all of our ancestors live through it? Well, most of them died earlier...I wonder why? I did my therapy for weeks or months. I cannot remember how long, but finally stopped because I had so many sinus issues and I firmly believed the machine/equipment were making it worse. Fast forward to 2023. I have low oxygen saturation per arterial blood test and a myopathy, which I knew I had, but didn't understand that it could affect my O2. I am now on BIPAP and have been faithfully trying to get the best mask fit and least leaking and believe I'm almost there. I have only watched two of your videos, but really appreciate your point of view. Please please tell people how important it is to replace some parts of their equipment and how often. I'm pretty sure that's where I went wrong in the past. I thought the doctor's office would just tell me and/or supply me with new gear when the time came. I was clueless.😊
Also, come to America! We don't have to wait a year to see a specialist. At least not in Indiana.
Thank you for the kind words, and I hope you stay the course!
I just released a video that touches on replacement schedules :)
What are your thoughts with people with UARS who have some difficulty nasal breathing/ airway resistance
I think that patients need to do everything they can, together with their providers, to restore nasal patency. Should none of the nonsurgical avenues yield results, and be sure to explore all of them, then surgery should be considered. From what I've learned from the literature, proper, symmetrical maxillary expansion seems to produce the best results for the greatest number of patients, but, like all cases in medicine, need will vary and we shouldn't hand out blue-plate specials. Notwithstanding the outdated nature of it, many physicians still follow the old Riley-Powell protocol and try to slap everyone with a UPPP or turbinate reduction, unfortunately.
Love the “blue plate specials” caution.
Have you looked into hypoglossal nerve stimulation as a treatment for a OSA?
I've paid attention to its development, and I've spoken to many others who have it. I'll try to do a video on the data at some point in the future, because it seems to be a topic of interest for many. I've seen it do wonders for some and nothing for others, but what the split is, I couldn't say. Hence, I'll try to do a video on the data so as to give viewers a clearer, unbiased idea.
Great. I think HGNS can help OSA Pts who have failed CPAP. Full disclosure, I am a territory manager in San Diego for Inspire medical systems. I work with ENT Surgeons to implant Inspire Hypoglossal nerve stimulator‘s into OSA patients that could not tolerate CPAP. I also then work with the sleep specialist to provide post implant long term follow up care for these patients. Basically, I work with these patients on a daily basis to make sure they are getting the most possible benefit out of Inspire therapy. I’d be happy to discuss all things Inspire with you on a deeper level. If you would be interested in this, please let me know how we might connect. Thanks!
The most significant clinical improvements I’ve seen with Inspire have come with the very severe patients who develop complications due to high pressures. Inspire can be a wonderful adjunct therapy for those folks. It brings the highest PAP setting down to manageable levels. I’ve seen many severe patients who go to Inspire only, when they really should not discontinue the PAP device. Jury is still out.
Ps Have subscribed!
How about the apnea mouth guard . do you have an opinion about that?
Mandibular advancement devices are shown to work, but they come with their own set of problems, and I've rarely heard of patients who consider themselves treated using them in isolation. I do encounter a sizeable number of patients who use one with a CPAP.
Man! We are definitely on the same page.
Hello Sir
Do you wear a CPAP Machine?
and how do you go to sleep with air blowing in your nose and mouth????
I do! Many nights of resolve and experimentation. There are specific machines / settings that can make the breathing feel a little bit more normal, such as expiratory pressure relief, using mask liners for comfort, or using BIPAP for a lower overall pressure. Stay the course!
I’m struggling with my CPAP machine. Untreated OSA for years had my tonsils removed in 2015 which helped with the snoring. I’ve been so mentally and physically messed up which somehow got worse after losing 40lbs. Diagnosed with RLS and mild sleep apnea. My oxygen dropped to 82% during the study but I know for sure I’ve dropped lower. CPAP is not helping my oxygenation though. I’ve been making calls to my doctor with no response the CPAP provider had the nerve to tell me not to wear it in my sleep and wear it while sitting on the couch for 4 hours (I do not have time for that). The CPAP has been making me more tired but seemed to help a couple days with the heart palpitations. My O2 ring should be in soon and I’m working on setting up Oscar. I can not rely on these doctors. I’ve already tried several masks but I’m curious how much my deviated septum is contributing to the problem.
I'm sorry you're going through all of that. It sounds like you're working on some potentially fruitful solutions though. Keep your chin up and believe that better days are to come :). There are lots of helpful patients on reddit and apneaboard.com that can provide free advice and share their own experiences!
Any luck on finding something to help . I have a hard time getting used to this facemask . Even when i do use it . I still feel tired or worse
@@tonehernandez8598 my oxygen is still dropping in my sleep. I notice it especially drops when my gerd is acting up, I believe I am having laryngeal spasms and that’s why I am getting perfect scores on my air and a I think on Oscar (still learning to read it) the other night I had slipped from my scar it GERD diet and had my mother in laws curry and a peice of chocolate. My wellu ring woke me up to an o2 of 78% and my CPAP was working fine. The reflux was so bad. I am still waiting for the results of my overnight oximetry bc I have to redo it. Of course the night I did it my oxygen was perfect.
@@tonehernandez8598 also, switching to full face helped with the “feeling worse” I switched to the airtouch F20 and I much prefer it to the other masks.
Oh, man! Sorry to hear of your struggles. I met hundreds of people with a similar profile when I ran a lung health clinic for over 9 years. CPAP is not a cure-all for low oxygen, so I trust your healthcare providers are staying on the job and working on finding other potential sources of that problem. There are many reasons that poor sleep from sleep apnea brings a wrecking ball to your health, and low oxygenation may be the most provocative problems. I always ask people to take their situation into their own hands whenever possible. Good luck.
For mine, I made a small adjustment and started sleeping on my side with my mouth taped closed and it is virtually gone
Thanks for sharing what worked for you! :)
At least you didn't have a stroke before you got diagnosed.
Hope whoever this refers to is doing better
@@CPAPfriend It was not severe but to did show me that doctor don't spot sleep issues early.