Ask HN: Can you share your experience with sleep apnea? Ever since I was a teenager I have always felt sleepy, tired and unable to concentrate. Later I was diagnosed with mild sleep apnea and upper airway resistance syndrome. Since then I have tried cpap, nasal surgery, mouth appliance etc but none of it helped. My quality of life is significantly lowered because of it. Does anyone here also have sleep apnea or uars? How are you treating it? I would love to hear your story |
I still keep a Tums by my bed at night but very rarely use it. I also keep a bottle of water, and usually that's sufficient to ease any irritation.
Another thing I remembered after writing the original - is that I reduced alcohol consumption to basically zero. I would drink a beer once in a a few weeks before that, but now - zero.
I'm not a doctor, and many of us here on HN aren't. As you'll notice by all the commentary, there's a lot of factors involved in good sleep and even in the reasons why people end up with cpap machines. Probably the smartest thing any of us can say is - look into your own lifestyle and factors, then find the professionals that you think can work with you toward a better outcome.
One thing I'll note - eating late and drinking mess up sleep. When my partner has had a few beers, she might fall asleep quickly, but then she doesn't sleep restfully as those sugars start burning. The acid reflux thing several people mention is definitely a problem. I actually find my cpap's biggest help has been pushing filtered air all night - helps my allergies big time! So, hope you are able to look into whether you have an "environmental" issue, a physical issue, or whatever combination might be affecting your sleep.
He got the sleep apnea face mask CPAP for sleeping, started losing a bit of weight very quickly, got encouraged and revised hs diet and started going to the gym regularly (but not obsessively or anything) and in 9 months was down to just over 200 pounds (95kg).
I can't rememeber when he stopped the CPAP, but was no more than 3 months in.
He's now 26 years old, maintained all the weight loss throughout and and still goes to the gym and goes indoor climbing regularly. He still pays attention to diet, but basically eats what he wants a significant portion of the time.
I don't think he could have done it without starting the CPAP first, it's hard to say for sure, but it definately had an impact almost straight away.
Had the MMA done after three TPD expansions, now no longer need the CPAP, sleep a lot better and run every day.
No joke, I would rather have fought a bout of cancer than have been slept to death like that for years.
My solemn advice to anyone with a severely high AHI is to go grab Dr. Li and have him move your jaws forward, don’t bother with the CPAP, you have a structural issue that requires a structural solution.
Sucks to have been sleepy and tired for all the years I can remember.
Can you elaborate on what MMA and TDP expansions are? Where are you (or the doc you refer) located?
I am completely fine with using CPAP, but if I don’t need it at all, that would be even better.
MMA is maxomandibular advancement. They make fine cuts in the upper and lower jaw, move them forward, and secure them in place with titanium bars. Sounds painful, really was the least painful surgery I have had so far - but the most logistically challenging (chocolate milk for 6 weeks straight).
TPD is transpalatial distraction. He makes a fine cut down the palate and inserts a small device on it, then every couple days you use a little tool to activate it, and it moves the palate apart horizontally, giving you more nasal breathing room.
Wild ride, but I’d do all of those surgeries twice if I had to; they weren’t actually that bad at all, but the results are amazing. Being able to run and breathe through my nose is great, sleeping without the machine is great too.
For those of us who are not overweight or don't have deviated septums (the usual culprits), we probably have underdeveloped lower jaws and recessed chins.
These collapse on the airway when we sleep on our backs. MMA (maxillo mandibular advancement I think) is a surgical way of moving your jaw bones forward.
I had this done in a clinic in Seoul, as my US insurance was crappy and wouldn't cover the peocedure.
It's an uncomfortable recovery process but there's been improvements.
So I mostly sleep on my side nowadays. And sometimes use mouth tape.
Mine is nonpositional. CPAP pressure is 16 and allows me to sleep on my back, but I'm ususlly a side sleeper. I use nasal pillows after an over-the-nose mask for the first 6 or 7 years. If I lost weight it'd probably help but I also have a deviated septum and an elongated soft palate / large tongue for my mouth size. So a perfect storm for apnea. Fortunately CPAP works well for me and I've never had an issue with mask fit or any other interference with sleep, aside from the air noises my new machine makes. I sleep with earplugs or earbuds with rain sounds (also have mild misophonia so the sound of the machine rising/falling as I breathe in and out, vs my original actual constant pressure machine, drives me bonkers) and/or a fan in my room to cover up the breathing sounds :)
Sorry to hear that your options have not worked -- it sounds like you've tried a lot of things. Is it worth getting another sleep study to see if there are any other changes that might explain the issues? I know my first doctor/study was nowhere near as complete as my 2nd one. It was the 2nd one that raised my pressure from 11 to 16 and that made a huge difference.
Good luck!
I was diagnosed with sleep apnea, not because of any obvious problem, but because my psych wanted to put me on drugs that might make me drowsy, so he wanted to make sure I was OK in that regard. A sleep study showed that I had mild to moderate sleep apnea.
I spent the following two years trying various things: turbinate reduction surgery, and 6-9 months adjusting my CPAP to no avail. No matter what we did, my AHI never went below 20. In fact, all of that actually caused severe insomnia that took me another 3 or 4 months to finally resolve.
I continue to look for ideas and new technology, but I'm not willing to do anything surgical. These days I just deal with it by getting at least 9 hours of time in bed (not 9 hours of sleep, because the result is more like 6 hours of actual sleep). I still wake up 3-4 times per night, but it's just enough—along with coffee—to continue to function.
It is night and day. 3-4h of sleep with my machine is worth any amount of sleep whiteout it. And a proper night make me feel so good.
That worked well enough, but what worked better was exercising and losing weight. Exercising was not what achieved the weight loss, although it had myriad good effects. What made losing weight possible was eliminating sugar. In particular, eliminating all sugar not accompanied by fiber. Sugar in fruit is fine because (except in grapes!) fruit has plenty of fiber. Juice doesn't.
Actually having sleep apnea can itself interfere with losing weight. So, get treatment for that, then work on losing the weight.
1. Inspire is an implant that electrically activates the muscles in your airway. You program it with a Bluetooth remote. It require that you have tried CPAP without success, but it works very well for some people. https://www.inspiresleep.com/
2. Apnimed is developing pharmaceutical interventions for sleep apnea. They’re conducting clinical trials; you could try to get involved in one of those to see if your apnea is improved by one of those drug candidates. https://apnimed.com/pipeline/
This might give you nightly data on which you can experiment continuously
It measures your sleep via reusable eeg electrodes on a device thats connected to an app
I got it a couple years ago I think for 600 USD. I think now it may be geared towards clinical trials though, at least in the USA, so you may have to contact them about it
There also is (was?) a feature on it where pulses of pink noise were played in sync with deepest NREM brain waves to enhance that aspect sleep... but last I checked you had to purchase it while in the EU or something (i.e. not USA)
All it does is jut out your lower jaw a bit, opening up your windpipe (or whatever it is that's getting stopped up). IT WORKED GREAT! To hell with CPAP. And now that I'm married, I have a full-time Apnea Alerter (TM).
- It can take a while to get used to it. A month is not unusual.
- It's easier if you put the excess tubing on the bed with you, instead of dragging over the edge of the mattress as you turn.
a few years ago I got another one, and didn't like it at first. Turned out that I needed the mask that covers my nose and mouth because I am a mouth breather. Getting a different mask made a big difference.
I was in a ton of pain, so I dutifully bought one and started monitoring my data using SleepyHead. Getting the right pressure was key, as was finding the right nasal pillow fit and making sure no mouth leaks. The first month was brutal, but my body started adjusting. The first night I slept well I woke up with a refreshing feeling I hadn't felt since grade school. That motivating me to keep going. I read sometime later that when you have an apnea, your vascular system constricts in the extremities and dilates going to the head to prioritize getting oxygen to the brain. Sure enough, that was what had been happening. My hand pain was the feeling of lack of oxygen or lactic acid build-up, I'm guessing. The headaches were from too much blood pressure going to the head (I've since found that a cold compress on the neck or a naproxen can help that if it occurs). The nocturia came from the fight or flight response when the adrenaline of apnea kicks in. All three symptoms went away when I started getting down to <2 AHI.
However. Though I grew to be used to the CPAP, I never liked it. It made a good night better but a bad night worse. I started having unrelated back pain which made it hard to sleep in certain positions with the headgear on. And during the summer my allergies made it near-impossible to get enough air (I found fluticasone to help though). On a whim I bought a snore-aid mouth appliance. It didn't work initially because it made my jaw hurt so much, so I stuck with CPAP and began using the mouth appliance with less mandibular advancement during only the last 3 or so hours of the night. Finally a work trip came up and I decided to rip off the band-aid. I took only the mouth appliance, and found I could tolerate the further advancement. It worked, no more apnea events, mind still clear in the morning, no hand pain etc. I waited a couple weeks, then packed away the CPAP. I had been on it for 3 1/2 years. I wish the sleep lab had mentioned that option for my condition.
https://www.hopkinsmedicine.org/health/treatment-tests-and-t...
I just need 12.5mg before bed.
I became a different person after taking the medication. Even after just a couple nights.
It’s quite remarkable how you are mentally and physically when you’ve never slept.
I would take the machine to the neurologist monthly or so, he'd read the SD card and show me the results: stopped breathing at least 40-100 times a night.
Fast forward about 3 years, I entered into ketosis -- that's another story, but for now it just means that I stopped eating all carbs, my liver started pulling fat from my diet and fat stores and forming ketones. Muscle would burn the fat, the brain would use the ketones exclusively.
I felt amazing, slept incredibly well, did not nap during the day, was just all manner of incredible things happen from that. Went from 202 to 187 in about 55 days (I wasn't monitoring it, just knew what I'd weighed, and went for a weigh in to get clearance for a gym at work one day and there it was. I was shocked.)
Took the BiPAP machine in about 3 months after going into ketosis: Zero events. I had zero times I stopped breathing at night.
Maybe my cause was different, but I'd bet anyone going into ketosis for a period of months would see healing in the brain that may help this and other issues. I think this because back in the day, epilepsy was treated with a diet that kept patients in ketosis, and after about 6 months, they no longer had epilepsy. Sounds to me like the brain did some repairs it couldn't do when on carbs.
I now think ketosis used to be our natural state before agriculture. Not like there were vending machines with Snickers bars on the savannas we evolved on - high carb diets I don't think existed. Wish I could find the reference, but some research showed that someone on the typical modern diet (high levels of blood glucose) would, when given ketones exogenously (they ate or drank them), have them taken up by the brain immediately -- the brain prefers ketones, even over glucose, the opposite of what we keep being told. Hardly anyone today ever enters ketosis with our diets.
Before doing any further drastic and potentially irreversible things like surgery or drugs, I'd seriously consider trying to get and stay in ketosis for at least 3 months and see how that affects your apnea. It can be a challenge, but not insurmountable. First couple of weeks may be hard, read up on what to do to get through that time, then stick with it for a while.
(EDIT: Forgot to mention, I had GERD too, that's gone. No more acid reflux, even when I eat foods that used to trigger it.)
Better options may be SnoreRx Plus (1 mm adjustment, from 1 to 6 mm) or VitalSleep (1 mm, from 1 to 8 mm) which allow for easy adjustment, no cutting required.
Note that none of these devices are rated for sleep apnea. However, the cost is $60-100, whereas a fully FDA-approved device runs about $2000. And not everyone who has sleep apnea can benefit from an oral appliance. You don't know until you experiment with one, and it can be money wasted. So I felt justified in trying a cheaper one out off-label to see if it helped alleviate my problem before investing a lot of money. I'm still considering paying for the more expensive one since they are FDA approved, seem less bulky, and may be less likely to cause tooth movement in the long run.