5 ms·

I'll keep saying it: sleep apnea is vastly underdiagnosed and undertreated. I had so many weird symptoms for so long, which all gradually started to disappear a

by elric 4y ago

I'll keep saying it: sleep apnea is vastly underdiagnosed and undertreated. I had so many weird symptoms for so long, which all gradually started to disappear as I started to get my sleep apnea treated. Unless you're fat, doctors will rarely even consider the possibility. And once you do get a polysomnogram, the usualy course of action is to throw a CPAP machine at you and send you on your way, without much followup. This, predictably, leads to abysmal compliance and the perception that PAP-therapy is awful or innefective. And while I'm on my soap box, I really wish the PAP-manufacturers would dislodge their collective head from their collective arse. Trying to lock down machines and preventing patients from accessing their data (and settings) is plain evil. And maybe put some money into R&D for better machines? There's literally hundreds of millions of people with sleep apnea, there's bound to be a market for better devices ...

schwartzworld 4y ago
Two relatives in my family who are highly symptomatic were turned down by their primary care when they asked for a sleep study. One for being too skinny and the other for being "too cheerful". If you want to criticize the pap manufacturers, there's a lot more than just that too. There's a shortage of machines because of the negligence of the Philips company. Documents have shown that they knew their machines were causing problems for years before finally doing a recall.
- alostpuppy 4y ago
  This is a huge problem! If they are in the US most insurers allow you to go straight to a specialist. Unsure if that helps them but for anyone reading this, if you can, go straight to a sleep specialist. My treatment was delayed for 3 years because I didn’t snore (another common reason for rejection of a sleep study).
hobo_mark 4y ago
What symptoms did you have, if one may ask?
- cshokie 4y ago
  (Not OP) I would call it the no booze hangover. Sometimes the symptoms would be like a mild hangover. You wake up with a headache, still tired, and a little bit of a “what happened last night?” vibe. Except that “what happened last night” was drink plenty of water and go to bed at a reasonable hour.
- elric 4y ago
  A wide variety of non-specific things. The most frightening of which was palpitations and skipped beats. Then panic attacks. Occasional ice pick headaches. Brain fog. Strangely, daytime sleepiness was not a symptom for me.
vjk800 4y ago
How did you get it treated? I've heard of the machines for this, but its not a very appealing option. I've also heard of exercises for neck/throat/jaw region, but do they work?
- clsec 4y ago
  In regards to your last question, Yes, the exercises can/do work with helping to strengthen your throat area. Tying your jaw shut at night with a scarf, or taping your mouth shut, works as well. Another thing I learned, through a comment found here on HN, is how to force your sinuses to open up. Even if you are congested, close your mouth and try to breath through your nose. Eventually (usually not long) your body's need for oxygen will take over and open up your sinuses. Hope this helps but remember that I am not a doctor.
- elric 4y ago
  With a CPAP machine, a lot of patience, OSCAR [1], and the help of the kind people over at Apnea Board [2]. I was given the machine, which was titrated to the wrong pressure settings, with the cheapest mask that was too small for my big nostrils. If it hadn't been for the fact that I had a friend whose life was greatly improved by CPAP, I probably would have thrown in the towel on the first night. But I stuck with it, asked for help on Apnea Board, tried to learn as much about apnea and PAP-therapy as I could, and eventually got to a point where I'm pretty happy with it. [1] https://www.sleepfiles.com/OSCAR/ https://www.sleepfiles.com/OSCAR/ [2] http://www.apneaboard.com/forums/ http://www.apneaboard.com/forums/
clsec 4y ago
I'm not so sure, my experience tells me differently.. I am a thin guy with very low body fat. As soon as I told my doctor that I had woken up 2-3 times with my soft pallet dry & semi-collapsed, also that I would wake up regularly with a dry mouth, he immediately sent me for a sleep test. I went and did the test and the results were that I had mild sleep apnea. The sleep doctor told me that they were ordering a CPAP machine for me. I asked why I needed it for mild apnea and also told them I wouldn't use it. They ordered it anyway and told me to take the issue up with my doctor. While all this was going on I was in the process of reducing the amount of meds I took (bad accident in 2010). I also started reading up on & studying sleep apnea. One of the first things I learned, and that worked, was keeping my mouth shut during sleep (many ways to accomplish that). The other thing I learned is that Big Pharma/FDA does a horrible job of listing medication side effects. I say that because "causes sleep apnea" was not on the list of side effects for carbamazeine (used for my peripheral neuropathy). As soon as I stopped the carbamazepine the apnea symptoms vanished. I have no need for a CPAP, it was ordered and I've received many calls about it, but there it sits at the sleep doctor's office..
- rco8786 4y ago
  This seems to jive exactly with what OP was saying. In that they diagnose you with apnea, throw a CPAP machine at you, and then do no follow up. I’m curious what part of this you are saying is not aligning with OP?
  - clsec 4y ago
    I'm not fat. I was immediately diagnosed and rushed to a sleep doctor.
- wnolens 4y ago
  I had the same experience. Sleep study was a complete joke - I slept in a creepy hotel like room in a clinic for maybe 3h total. Uncomfortable and totally different sleep then at home. AHI of 5, given CPAP with no follow up. It really felt like this sleep Doctor got paid to hand out machines. Hacked the settings, used it for 8months then quit cold turkey as a test. Felt the same. My sleep improved more from: Drastically reducing alcohol, smoking, weed. Septum correction and tonsil removal. Sleep alone in bed in complete darkness in a cool room.
tempsy 4y ago
why treat “sleep apnea” and not the actual root cause? if you’re not fat and have sleep apnea, the other major cause is alcohol consumption/smoking. seems odd to treat the symptom eg sleep apnea and not try to cut out alcohol and smoking and then reevaluate.
- rco8786 4y ago
  Doctors aren’t typically incentivized to treat things with lifestyle changes. For better or worse, that’s something you need to self advocate for.
  - kevviiinn 4y ago
    That's because nobody listens, doctors have more or less given up. People want meds, they always want a quick fix not to exercise and eat better
    - tempsy 4y ago
      that isn’t true. i’ve never received nutritional advice from a doctor, and if i did i doubt it would be much more than “eat fruits and veggies and exercise” the “official” food pyramid put out by the government still tells people to eat mostly refined grains and carbs.
      - kevviiinn 4y ago
        Your statement is not at odds with my claim, not to mention eating more fruits and veggies is an improvement for 85%+ of Americans so yea that's actually solid advice. I don't know why you think it isn't Most Americans are also sedentary and don't exercise at all so again, even just walking more is an improvement for most people. All that being said, I also have not had a doctor who didn't first ask me what my diet and exercise are like before making suggestions
        rco8786 4y ago
        Eating fruits and vegetables is not typically good medical advice when we’re talking about acute issues. Advice for a healthier lifestyle, more energy, longevity, etc? Yes of course. Advice for sleep apnea that’s already set in and affecting a patient nightly? Not at all.
11235813213455 4y ago
isn't sleep apnea usually related to another problem, like diet (most of the time), or smoking/drinking, another is the position of your jaw (the teeth shouldn't touch)
- Llamamoe 4y ago
  ...the teeth absolutely should touch, and besides, that's guided by tooth contact points and not habit/lifestyle factor. Sheesh.
  - 11235813213455 4y ago
    facts https://vadentist.com/a-hard-nights-sleep/#:~:text=You%20may%20not%20have%20realized,mash%20food%2C%20not%20necessarily%20touch https://vadentist.com/a-hard-nights-sleep/#:~:text=You%20may....
- schwartzworld 4y ago
  It's a blanket term that describes a condition where your airway collapses while you sleep, but there are lots of causes. Smoking, drinking and other substances can cause your muscles to relax and bring on apnea, as can being overweight. Lots of body builders suffer from it as their necks become developed. The biggest "cause" once you remove factors like alcohol is heredity. You get the shape of your face from your parents, why not the anatomy of your airway as well?
  - 11235813213455 4y ago
    oh shape right, like for bulldogs (artificially created by humans)
ano88888 4y ago
I recently did a sleep test because i was really sleepy and tired during the say an my apple watch is telling me i have too many wake ups. My AHI score is 33 which is quite bad. I immediately got A CPAP (auto) and after a week of using my AHI is now 1.3. And my brain has become so clear and alert. I can't imagine how I lived before once i got the taste of normal brain.
AndrewKemendo 4y ago
>Trying to lock down machines and preventing patients from accessing their data (and settings) is plain evil. Which means it's profitable and they will double down on it

by elric 4y ago

schwartzworld 4y ago

Two relatives in my family who are highly symptomatic were turned down by their primary care when they asked for a sleep study. One for being too skinny and the other for being "too cheerful". If you want to criticize the pap manufacturers, there's a lot more than just that too. There's a shortage of machines because of the negligence of the Philips company. Documents have shown that they knew their machines were causing problems for years before finally doing a recall.

alostpuppy 4y ago
This is a huge problem! If they are in the US most insurers allow you to go straight to a specialist. Unsure if that helps them but for anyone reading this, if you can, go straight to a sleep specialist. My treatment was delayed for 3 years because I didn’t snore (another common reason for rejection of a sleep study).

hobo_mark 4y ago

What symptoms did you have, if one may ask?

cshokie 4y ago
(Not OP) I would call it the no booze hangover. Sometimes the symptoms would be like a mild hangover. You wake up with a headache, still tired, and a little bit of a “what happened last night?” vibe. Except that “what happened last night” was drink plenty of water and go to bed at a reasonable hour.
elric 4y ago
A wide variety of non-specific things. The most frightening of which was palpitations and skipped beats. Then panic attacks. Occasional ice pick headaches. Brain fog. Strangely, daytime sleepiness was not a symptom for me.

vjk800 4y ago

How did you get it treated? I've heard of the machines for this, but its not a very appealing option. I've also heard of exercises for neck/throat/jaw region, but do they work?

clsec 4y ago
In regards to your last question, Yes, the exercises can/do work with helping to strengthen your throat area. Tying your jaw shut at night with a scarf, or taping your mouth shut, works as well. Another thing I learned, through a comment found here on HN, is how to force your sinuses to open up. Even if you are congested, close your mouth and try to breath through your nose. Eventually (usually not long) your body's need for oxygen will take over and open up your sinuses. Hope this helps but remember that I am not a doctor.
elric 4y ago
With a CPAP machine, a lot of patience, OSCAR [1], and the help of the kind people over at Apnea Board [2]. I was given the machine, which was titrated to the wrong pressure settings, with the cheapest mask that was too small for my big nostrils. If it hadn't been for the fact that I had a friend whose life was greatly improved by CPAP, I probably would have thrown in the towel on the first night. But I stuck with it, asked for help on Apnea Board, tried to learn as much about apnea and PAP-therapy as I could, and eventually got to a point where I'm pretty happy with it. [1] https://www.sleepfiles.com/OSCAR/ https://www.sleepfiles.com/OSCAR/ [2] http://www.apneaboard.com/forums/ http://www.apneaboard.com/forums/

clsec 4y ago

I'm not so sure, my experience tells me differently.. I am a thin guy with very low body fat. As soon as I told my doctor that I had woken up 2-3 times with my soft pallet dry & semi-collapsed, also that I would wake up regularly with a dry mouth, he immediately sent me for a sleep test. I went and did the test and the results were that I had mild sleep apnea. The sleep doctor told me that they were ordering a CPAP machine for me. I asked why I needed it for mild apnea and also told them I wouldn't use it. They ordered it anyway and told me to take the issue up with my doctor. While all this was going on I was in the process of reducing the amount of meds I took (bad accident in 2010). I also started reading up on & studying sleep apnea. One of the first things I learned, and that worked, was keeping my mouth shut during sleep (many ways to accomplish that). The other thing I learned is that Big Pharma/FDA does a horrible job of listing medication side effects. I say that because "causes sleep apnea" was not on the list of side effects for carbamazeine (used for my peripheral neuropathy). As soon as I stopped the carbamazepine the apnea symptoms vanished. I have no need for a CPAP, it was ordered and I've received many calls about it, but there it sits at the sleep doctor's office..

rco8786 4y ago
This seems to jive exactly with what OP was saying. In that they diagnose you with apnea, throw a CPAP machine at you, and then do no follow up. I’m curious what part of this you are saying is not aligning with OP?
- clsec 4y ago
  I'm not fat. I was immediately diagnosed and rushed to a sleep doctor.
wnolens 4y ago
I had the same experience. Sleep study was a complete joke - I slept in a creepy hotel like room in a clinic for maybe 3h total. Uncomfortable and totally different sleep then at home. AHI of 5, given CPAP with no follow up. It really felt like this sleep Doctor got paid to hand out machines. Hacked the settings, used it for 8months then quit cold turkey as a test. Felt the same. My sleep improved more from: Drastically reducing alcohol, smoking, weed. Septum correction and tonsil removal. Sleep alone in bed in complete darkness in a cool room.

tempsy 4y ago

why treat “sleep apnea” and not the actual root cause? if you’re not fat and have sleep apnea, the other major cause is alcohol consumption/smoking. seems odd to treat the symptom eg sleep apnea and not try to cut out alcohol and smoking and then reevaluate.

rco8786 4y ago
Doctors aren’t typically incentivized to treat things with lifestyle changes. For better or worse, that’s something you need to self advocate for.
- kevviiinn 4y ago
  That's because nobody listens, doctors have more or less given up. People want meds, they always want a quick fix not to exercise and eat better
  - tempsy 4y ago
    that isn’t true. i’ve never received nutritional advice from a doctor, and if i did i doubt it would be much more than “eat fruits and veggies and exercise” the “official” food pyramid put out by the government still tells people to eat mostly refined grains and carbs.
    - kevviiinn 4y ago
      Your statement is not at odds with my claim, not to mention eating more fruits and veggies is an improvement for 85%+ of Americans so yea that's actually solid advice. I don't know why you think it isn't Most Americans are also sedentary and don't exercise at all so again, even just walking more is an improvement for most people. All that being said, I also have not had a doctor who didn't first ask me what my diet and exercise are like before making suggestions
      - rco8786 4y ago
        Eating fruits and vegetables is not typically good medical advice when we’re talking about acute issues. Advice for a healthier lifestyle, more energy, longevity, etc? Yes of course. Advice for sleep apnea that’s already set in and affecting a patient nightly? Not at all.

11235813213455 4y ago

isn't sleep apnea usually related to another problem, like diet (most of the time), or smoking/drinking, another is the position of your jaw (the teeth shouldn't touch)

Llamamoe 4y ago
...the teeth absolutely should touch, and besides, that's guided by tooth contact points and not habit/lifestyle factor. Sheesh.
- 11235813213455 4y ago
  facts https://vadentist.com/a-hard-nights-sleep/#:~:text=You%20may%20not%20have%20realized,mash%20food%2C%20not%20necessarily%20touch https://vadentist.com/a-hard-nights-sleep/#:~:text=You%20may....
schwartzworld 4y ago
It's a blanket term that describes a condition where your airway collapses while you sleep, but there are lots of causes. Smoking, drinking and other substances can cause your muscles to relax and bring on apnea, as can being overweight. Lots of body builders suffer from it as their necks become developed. The biggest "cause" once you remove factors like alcohol is heredity. You get the shape of your face from your parents, why not the anatomy of your airway as well?
- 11235813213455 4y ago
  oh shape right, like for bulldogs (artificially created by humans)

ano88888 4y ago

I recently did a sleep test because i was really sleepy and tired during the say an my apple watch is telling me i have too many wake ups. My AHI score is 33 which is quite bad. I immediately got A CPAP (auto) and after a week of using my AHI is now 1.3. And my brain has become so clear and alert. I can't imagine how I lived before once i got the taste of normal brain.

AndrewKemendo 4y ago

>Trying to lock down machines and preventing patients from accessing their data (and settings) is plain evil. Which means it's profitable and they will double down on it