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Messing with your own PAP settings can be a bad idea. I have complex apnea - a little bit of obstructive apnea (small pie hole), a little bit of central apnea (

Messing with your own PAP settings can be a bad idea. I have complex apnea - a little bit of obstructive apnea (small pie hole), a little bit of central apnea (brain messages to breathe don't get through). I had an Auto BiPAP machine, which is like an intelligent ventilator that varies settings to determine the best one. A sleep study plus home monitoring indicated that the machine made my apnea worse! After another sleep study where they tried many different settings, it was found that static CPAP, the simplest form of PAP therapy, was most effective in addressing my apnea. This was highly unexpected. My point is that only a sleep technician or a sleep medicine doctor could have figured the right settings out. Beware of fucking with your own settings! I did it multiple times and it hurt my sleep instead of improving it. Pulse oximetry is not good enough to tune your own settings.

walshemj 8y ago
Having done home dialysis id be very wary of changing the firmware settings on a CPD machine let alone a HD one - but that is a lot more invasive.
IshKebab 8y ago
> After another sleep study where they tried many different settings, Sounds like messing with the settings helped you. Of that you'd discourage other people from trying it.
- abjorn 8y ago
  Professionals tried different settings, that's the key difference.
tptacek 8y ago
Central apnea is the scary story people tell on the forums about why not to just get an APAP and skip the sleep study. (I'm sort of suspicious that I have some kind of apnea since my wife says she thinks I do, but there is just no way I'm doing a sleep study, so this is a topic of some minor fascination for me).
- jazzychad 8y ago
  Curious why you won't do a sleep study? I recently went through this whole process, and it was pretty fascinating to see the data they collected from all the sensors (also confirming that I have mild OSA).
  - tptacek 8y ago
    I have a _very_ delicately balanced sleep routine and a sort of mortal terror both of insomnia and of hypnotic drugs. If it were safe and easy I'd probably just buy the APAP and see if it made me feel better. I don't feel much urgency; I get about 6 hours a night on the regular and don't as a rule feel tired or cloudy during the day (but it's possible that with an APAP I would, relative to my current condition, feel like an atomic superman, which is what drives my fascination.)
    - mabbo 8y ago
      I did my sleep study when I was 24. There were no drugs involved. It's just a bunch of sensors taped to you while you sleep with a camera watching you. Bit odd of an experience, but nothing that should concern you much.
      - tptacek 8y ago
        My understanding is that if you're not going to fall asleep in the setting of the sleep study, they'll Ambien you out.
        oostevo 8y ago
        That does not match my experience (but n=1 and all). In my case, the result of the sleep study where I didn't really sleep was, "hmm ... it looks like you might have insomnia." (No kidding). No drugs were offered -- or forced -- during the study.
        JoshTriplett 8y ago
        You're ultimately in control of the situation. If you explicitly tell them that under no circumstances do you want to take a drug to induce sleep, they're not going to force you to. You could just call it off if you can't sleep. I've taken a sleep study before; they're not that weird, just a pile of sensors and a bed. And I also know from multiple people that if you do have any form of apnea, addressing it can have a life-changing impact.
Zak 8y ago
> My point is that only a sleep technician or a sleep medicine doctor could have figured the right settings out. Why? What about the process of adjusting the treatment and monitoring the results wouldn't have been possible to do at home? I don't mean to discount the advice of experts. Certainly, an expert willing to dedicate sufficient time and attention to getting the treatment right for a particular patient is more likely to get optimal results than a patient modifying their own treatment. The problem the article focuses on, however is patients being unable to get sufficient time with experts.
01100011 8y ago
Thanks for sharing your experience. I don't think enough people understand the complexities of apnea. That said, I'm curious why you don't think pulse oximetry is enough? Isn't the ultimate goal to ensure proper oxygenation(and CO2 removal but I would think that would be correlated)?
nulagrithom 8y ago
Counter-anecdote: My particular doctor shoots for an AHI around 10, which is still mild sleep apnea (5 is the threshold) and is still high enough to get you diagnosed and provided a CPAP in the first place. So for 6 months my AHI hovered around 8 or 9, occasionally spiking to 12 (which made me really feel like crap). My technician won't adjust without doctor's orders (and incidentally also told me I'd fry the entire machine in days if I used non-distilled water in the humidifier, which is just absurd.) The doctor books appointments months out, and is OK with my current results anyway. So I tried bumping my pressure up by 1 and lowering the exhale comfort feature on my own. Tada! After a month my AHI averages 4, sometimes spiking to 6, and I feel much, much better.
- TylerE 8y ago
  Wow, that's insane. My AHI during my sleep study was approx. 55-60 (It's been several years, forget the exact number). With my machine my number is usually 1, most nights under 0.5. (FWIW: Like you I found increasing the pressure a little and turning off all the 'comfort' features was the winning formula).
- ridgeguy 8y ago
  CPAP with humidifier user here. About nondistilled water: My humidifier has a heated metal plate in the bottom of the tank. Its temperature is set on a humidifier scale of 1-8, plate temperature increases from 1-8. Evaporation of nondistilled water will leave mineral deposits behind. Deposits decrease thermal conductance between heated plate and water. This will reduce evaporation rate, reducing effective humidity for a given setting. If the control loop is smarter than usual and includes humidity sensing, there's a potential for thermal runaway. Doubt this is an issue, it's probably a simple temperature loop. I don't think you'd "fry the entire machine in days". There may be more bacterial growth potential with nondistilled water. Don't know. Using distilled water is a little less convenient, but could avoid some issues.
  - webnrrd2k 8y ago
    It's really not a big deal to use tap water, I did for years until I lost enough weight that my sleep apnea went away. 1.) Fill the tank with regular cheap vinegar to get rid of the mineral deposits. Maybe there is a problem with some tanks, but mine were all plastic or stainless steel and vinegar didn't seem to have any affect on them. 2.) Usually the tanks hold enough water for two nights, maybe a little more, at the settings I used them at. Dumping out the water in the morning kept the mineral content from becoming concentrated due to evaporation, and kept the buildup down to more manageable levels. If I didn't dump the tank every morining then I have rapid mineral buildup. I know it sounds silly, but it took me an embarasing amout of time to figure this out. Once I worked out those two things I had no trouble with using regular tap water in the humidifier.
agumonkey 8y ago
Very interesting. Happy you improved your treatment. Very interesting.
yholio 8y ago
Sure, messing with any medical device could be fatal - but so can the medical condition itself. I would like to live in a world where I can make those decisions on my own and improve my life by taking calculated risks, as opposed to a world where my death is an acceptable trade-off for an overloaded and risk averse medical establishment. That being said, the regulations around medical devices and healthcare have evolved in a certain cultural environment where blame is the name of the game: if any treatment ever fails, the public and political uproar against the healthcare industry is always vicious and patients will never accept any personal responsibility. It's understandable why the medical professionals react by removing any kind of control away from the patient - you cannot assume responsibility for something that you do not control. That lone idiot that pushes his treatment to eleven to see if it has any effect on his erection ruins it for the rest of us. And I guarantee you that for any user accessible feature on a medical device, there will be such an idiot, and that he or his family will sue. And that's the case against which medical manufacturers optimize against, in this instance, by abusing unrelated copyright regulations and denying life saving options to other patients.
- carlmr 8y ago
  >Sure, messing with any medical device could be fatal - but so can the medical condition itself. I would like to live in a world where I can make those decisions on my own and improve my life by taking calculated risks, as opposed to a world where my death is an acceptable trade-off for an overloaded and risk averse medical establishment. >That being said, the regulations around medical devices and healthcare have evolved in a certain cultural environment where blame is the name of the game: if any treatment ever fails, the public and political uproar against the healthcare industry is always vicious and patients will never accept any personal responsibility. It's understandable why the medical professionals react by removing any kind of control away from the patient - you cannot assume responsibility for something that you do not control. I completely agree. I think there should just be laws governing this though. It needs to be an adult making the decision that is sufficiently smart to understand the risks. And then you sign something that absolves others if you take that personal risk and can't sue if it harms you.

walshemj 8y ago

Having done home dialysis id be very wary of changing the firmware settings on a CPD machine let alone a HD one - but that is a lot more invasive.

IshKebab 8y ago

> After another sleep study where they tried many different settings, Sounds like messing with the settings helped you. Of that you'd discourage other people from trying it.

abjorn 8y ago
Professionals tried different settings, that's the key difference.

tptacek 8y ago

Central apnea is the scary story people tell on the forums about why not to just get an APAP and skip the sleep study. (I'm sort of suspicious that I have some kind of apnea since my wife says she thinks I do, but there is just no way I'm doing a sleep study, so this is a topic of some minor fascination for me).

jazzychad 8y ago
Curious why you won't do a sleep study? I recently went through this whole process, and it was pretty fascinating to see the data they collected from all the sensors (also confirming that I have mild OSA).
- tptacek 8y ago
  I have a _very_ delicately balanced sleep routine and a sort of mortal terror both of insomnia and of hypnotic drugs. If it were safe and easy I'd probably just buy the APAP and see if it made me feel better. I don't feel much urgency; I get about 6 hours a night on the regular and don't as a rule feel tired or cloudy during the day (but it's possible that with an APAP I would, relative to my current condition, feel like an atomic superman, which is what drives my fascination.)
  - mabbo 8y ago
    I did my sleep study when I was 24. There were no drugs involved. It's just a bunch of sensors taped to you while you sleep with a camera watching you. Bit odd of an experience, but nothing that should concern you much.
    - tptacek 8y ago
      My understanding is that if you're not going to fall asleep in the setting of the sleep study, they'll Ambien you out.
      - oostevo 8y ago
        That does not match my experience (but n=1 and all). In my case, the result of the sleep study where I didn't really sleep was, "hmm ... it looks like you might have insomnia." (No kidding). No drugs were offered -- or forced -- during the study.
      - JoshTriplett 8y ago
        You're ultimately in control of the situation. If you explicitly tell them that under no circumstances do you want to take a drug to induce sleep, they're not going to force you to. You could just call it off if you can't sleep. I've taken a sleep study before; they're not that weird, just a pile of sensors and a bed. And I also know from multiple people that if you do have any form of apnea, addressing it can have a life-changing impact.

Zak 8y ago

> My point is that only a sleep technician or a sleep medicine doctor could have figured the right settings out. Why? What about the process of adjusting the treatment and monitoring the results wouldn't have been possible to do at home? I don't mean to discount the advice of experts. Certainly, an expert willing to dedicate sufficient time and attention to getting the treatment right for a particular patient is more likely to get optimal results than a patient modifying their own treatment. The problem the article focuses on, however is patients being unable to get sufficient time with experts.

01100011 8y ago

Thanks for sharing your experience. I don't think enough people understand the complexities of apnea. That said, I'm curious why you don't think pulse oximetry is enough? Isn't the ultimate goal to ensure proper oxygenation(and CO2 removal but I would think that would be correlated)?

nulagrithom 8y ago

Counter-anecdote: My particular doctor shoots for an AHI around 10, which is still mild sleep apnea (5 is the threshold) and is still high enough to get you diagnosed and provided a CPAP in the first place. So for 6 months my AHI hovered around 8 or 9, occasionally spiking to 12 (which made me really feel like crap). My technician won't adjust without doctor's orders (and incidentally also told me I'd fry the entire machine in days if I used non-distilled water in the humidifier, which is just absurd.) The doctor books appointments months out, and is OK with my current results anyway. So I tried bumping my pressure up by 1 and lowering the exhale comfort feature on my own. Tada! After a month my AHI averages 4, sometimes spiking to 6, and I feel much, much better.

TylerE 8y ago
Wow, that's insane. My AHI during my sleep study was approx. 55-60 (It's been several years, forget the exact number). With my machine my number is usually 1, most nights under 0.5. (FWIW: Like you I found increasing the pressure a little and turning off all the 'comfort' features was the winning formula).
ridgeguy 8y ago
CPAP with humidifier user here. About nondistilled water: My humidifier has a heated metal plate in the bottom of the tank. Its temperature is set on a humidifier scale of 1-8, plate temperature increases from 1-8. Evaporation of nondistilled water will leave mineral deposits behind. Deposits decrease thermal conductance between heated plate and water. This will reduce evaporation rate, reducing effective humidity for a given setting. If the control loop is smarter than usual and includes humidity sensing, there's a potential for thermal runaway. Doubt this is an issue, it's probably a simple temperature loop. I don't think you'd "fry the entire machine in days". There may be more bacterial growth potential with nondistilled water. Don't know. Using distilled water is a little less convenient, but could avoid some issues.
- webnrrd2k 8y ago
  It's really not a big deal to use tap water, I did for years until I lost enough weight that my sleep apnea went away. 1.) Fill the tank with regular cheap vinegar to get rid of the mineral deposits. Maybe there is a problem with some tanks, but mine were all plastic or stainless steel and vinegar didn't seem to have any affect on them. 2.) Usually the tanks hold enough water for two nights, maybe a little more, at the settings I used them at. Dumping out the water in the morning kept the mineral content from becoming concentrated due to evaporation, and kept the buildup down to more manageable levels. If I didn't dump the tank every morining then I have rapid mineral buildup. I know it sounds silly, but it took me an embarasing amout of time to figure this out. Once I worked out those two things I had no trouble with using regular tap water in the humidifier.

agumonkey 8y ago

Very interesting. Happy you improved your treatment. Very interesting.

yholio 8y ago

Sure, messing with any medical device could be fatal - but so can the medical condition itself. I would like to live in a world where I can make those decisions on my own and improve my life by taking calculated risks, as opposed to a world where my death is an acceptable trade-off for an overloaded and risk averse medical establishment. That being said, the regulations around medical devices and healthcare have evolved in a certain cultural environment where blame is the name of the game: if any treatment ever fails, the public and political uproar against the healthcare industry is always vicious and patients will never accept any personal responsibility. It's understandable why the medical professionals react by removing any kind of control away from the patient - you cannot assume responsibility for something that you do not control. That lone idiot that pushes his treatment to eleven to see if it has any effect on his erection ruins it for the rest of us. And I guarantee you that for any user accessible feature on a medical device, there will be such an idiot, and that he or his family will sue. And that's the case against which medical manufacturers optimize against, in this instance, by abusing unrelated copyright regulations and denying life saving options to other patients.

carlmr 8y ago
>Sure, messing with any medical device could be fatal - but so can the medical condition itself. I would like to live in a world where I can make those decisions on my own and improve my life by taking calculated risks, as opposed to a world where my death is an acceptable trade-off for an overloaded and risk averse medical establishment. >That being said, the regulations around medical devices and healthcare have evolved in a certain cultural environment where blame is the name of the game: if any treatment ever fails, the public and political uproar against the healthcare industry is always vicious and patients will never accept any personal responsibility. It's understandable why the medical professionals react by removing any kind of control away from the patient - you cannot assume responsibility for something that you do not control. I completely agree. I think there should just be laws governing this though. It needs to be an adult making the decision that is sufficiently smart to understand the risks. And then you sign something that absolves others if you take that personal risk and can't sue if it harms you.