Self-Titration?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
PleaseHelp111
Posts: 13
Joined: Thu Feb 04, 2016 10:02 pm

Self-Titration?

Post by PleaseHelp111 » Thu Feb 11, 2016 7:34 pm

I have all symptoms of sleep apnea. I want to have a sleep study done, but my insurance is not very good and will take very long to even get the initial sleep study. I'm falling asleep while driving so this is fairly urgent. Also I'm on a tight budget, so buying an auto-set cpap from craigslist for a couple hundred is a lot cheaper than paying 1000$ + Out of pocket for a real sleep study.

I've read around the forums and it is evident that some people also didn't use insurance and self-treated.

I want to ask what steps did you take?

What machine and mask did you get? What was your initial AHI and what did you do to improve it? Do you feel better?

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palerider
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Re: Self-Titration?

Post by palerider » Thu Feb 11, 2016 7:46 pm

PleaseHelp111 wrote:I have all symptoms of sleep apnea. I want to have a sleep study done, but my insurance is not very good and will take very long to even get the initial sleep study. I'm falling asleep while driving so this is fairly urgent. Also I'm on a tight budget, so buying an auto-set cpap from craigslist for a couple hundred is a lot cheaper than paying 1000$ + Out of pocket for a real sleep study.

I've read around the forums and it is evident that some people also didn't use insurance and self-treated.

I want to ask what steps did you take?

What machine and mask did you get? What was your initial AHI and what did you do to improve it? Do you feel better?
what I recommend, and has worked for many people, is to get an autosetting machine, such as a respironics AUTO, or a resmed AutoSet. these machines will give you full data, and help you out a lot in the process of finding the right pressures.

download sleepyhead, and use it to pull the data, and then post screenshots here for advice. read the first post in announcements on the forum to help start getting familiar with what it all means.

first night, leave the machine at factory defaults, 4-20, and then look at your data and start raising the lower pressure up based on the data that you get.

when I started, I had a machine that had data, but wasn't auto, and it took a lot more fiddling and tweaking to get it right. I ended up with a mask that came with the machine (off craigslist) and it just happened, luckily to be one I liked. everybody is different about what mask they like and what works best for them.

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Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.

Cardsfan
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Re: Self-Titration?

Post by Cardsfan » Thu Feb 11, 2016 7:52 pm

http://www.secondwindcpap.com would be a good place to get a good deal.

Also, the Resmed s9 Auto For Her is on a really good sale for $499 at https://www.cpap.com (if you don't mind that it is pink) It would do a good job, even if you are a guy.

Everybody lists their machine and mask in the bottom of their profile. You can click on them. My AHI was 30, and I definitely feel better.

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MrGrumpy
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Re: Self-Titration?

Post by MrGrumpy » Thu Feb 11, 2016 8:02 pm

You really are going the hard road IMO. To do a proper self titration, you need thirty days average from an auto CPAP (APAP) or an auto BiPap (AutoBIPAP).

One night of data from an APAP run "wide open," or 4-20 is not enough data to get an honest, reliable assessment.

Its much safer, legally, to do it the regular way. Go through a sleep doctor and DME first. Once you get formally diagnosed and set up and compliant for six months or a year or more, you start to learn the ropes and I could see self titration in extreme situations. Which does appear to be increasing btw, if you go by this forum at least.

Mask selection is just as important as data and no online suppliers will sell you masks or even replacement cushions without a formal prescription, anymore.
Id be dead by now if I didn't use my CPAP gear every night.

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chunkyfrog
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Re: Self-Titration?

Post by chunkyfrog » Thu Feb 11, 2016 8:16 pm

PleaseHelp111 wrote:I have all symptoms of sleep apnea. I want to have a sleep study done, but my insurance is not very good and will take very long to even get the initial sleep study. I'm falling asleep while driving so this is fairly urgent. Also I'm on a tight budget, so buying an auto-set cpap from craigslist for a couple hundred is a lot cheaper than paying 1000$ + Out of pocket for a real sleep study.

I've read around the forums and it is evident that some people also didn't use insurance and self-treated.

I want to ask what steps did you take?

What machine and mask did you get? What was your initial AHI and what did you do to improve it? Do you feel better?
Your problems are not that unusual. Lab studies are indeed expensive, and beyond the reach of many.
If you can get your dentist or PCP to write a prescription, you can buy new, online. If not, private sales are "it".
Some members here sometimes sell used machines--no prescription needed. Do not lose hope.
Self treatment is almost always better than none at all, and is often better than the establishment.

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PleaseHelp111
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Re: Self-Titration?

Post by PleaseHelp111 » Thu Feb 11, 2016 8:25 pm

Thank you everyone for the quick informative replies.

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palerider
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Re: Self-Titration?

Post by palerider » Thu Feb 11, 2016 9:09 pm

PleaseHelp111 wrote:Thank you everyone for the quick informative replies.
please remember that "mrgrumpy" knows NOTHING and is best put on the foe list.

for instance, he rants and froths at the mouth about how bad off he has it when he sets his machine to 4-20, but then wants you to suffer the same thing.... best ignored for your sanity.

he's also completely wrong about buying mask parts... just look at amazon

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Mask: Bleep DreamPort CPAP Mask Solution
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Get OSCAR

Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.

MrGrumpy
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Re: Self-Titration?

Post by MrGrumpy » Thu Feb 11, 2016 9:27 pm

You were just put on my "foe" list tonight. Ive been doing CPAP since 2007, successfully until almost three years ago. I'd suggest you stop replying to my posts and at least TRY to go see a real sleep medicine specialist. You come over as very irritable and I believe something is not right about your "therapy." Others have observed you are rude and not quite right as well.

Other than that, I wish you well. But I aint replying to you anymore.

palerider wrote:
PleaseHelp111 wrote:Thank you everyone for the quick informative replies.
please remember that "mrgrumpy" knows NOTHING and is best put on the foe list.

for instance, he rants and froths at the mouth about how bad off he has it when he sets his machine to 4-20, but then wants you to suffer the same thing.... best ignored for your sanity.

he's also completely wrong about buying mask parts... just look at amazon
Id be dead by now if I didn't use my CPAP gear every night.

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palerider
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Re: Self-Titration?

Post by palerider » Thu Feb 11, 2016 9:32 pm

MrGrumpy wrote:Ive been doing CPAP since 2007, successfully until almost three years ago.
and, you know *NOTHING* about taking care of yourself or managing your own treatment, all you know is going to the doctor and hoping that they give you good advice, and so your statements in this thread are coming from a point of total ignorance.... of course, most of what you say fits that description.

nearly everything you post is factually inaccurate, and needs to be corrected, for the sake of other readers that haven't taken the time to read your posting history.
MrGrumpy wrote:But I aint replying to you anymore.
could I REALLY be so lucky?????

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Mask: Bleep DreamPort CPAP Mask Solution
Additional Comments: S9 VPAP Auto
Get OSCAR

Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.

Mudrock63
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Re: Self-Titration?

Post by Mudrock63 » Thu Feb 11, 2016 10:44 pm

PleaseHelp111 wrote:I have all symptoms of sleep apnea. I want to have a sleep study done, but my insurance is not very good and will take very long to even get the initial sleep study. I'm falling asleep while driving so this is fairly urgent. Also I'm on a tight budget, so buying an auto-set cpap from craigslist for a couple hundred is a lot cheaper than paying 1000$ + Out of pocket for a real sleep study.

I've read around the forums and it is evident that some people also didn't use insurance and self-treated.

I want to ask what steps did you take?

What machine and mask did you get? What was your initial AHI and what did you do to improve it? Do you feel better?
I have a friend at work that did it this way and is just fine and very happy with his results.

There are members on this board that rail against it, for whatever reason.

I had the fancy sleep study, in lab. My AHI was 37. My oxygen levels went down to 60% during my not-breathing episodes. That is NOT good. Neither is falling asleep while you are driving. So after the fancy sleep study with all the bells and whistles, I went back for another titration study in the lab. The sleep doctor associated with the sleep center prescribed me with a fixed level of 6.0cm, which is very low. I stayed on this level for about a month and started studying the posts on this board. Figured out how to download SleepyHead. My data after a month showed an average AHI of 23.7, which is still horrible and equivalent to being poked awake 24 times/hour all night. I learned how to post screenshots of my Sleepyhead data here and asked for advice. A wonderful lady with a screen name of Pugsy took me under her wing, and made several brilliant suggestions for changing my setting to help me. My AHI is now down to below 5.0, which is not perfect but a hell of a lot better than 23.7. Pugsy also told me I probably need a different machine than that prescribed by the "expert" doctor to get my condition fully under control. Sadly, some of the nutbags on here have run her off. Hopefully she is taking a break and will be back. We will see.

So, to make a long story short, I would have spent another month and a half on the nearly useless 6.0cm setting, and then God knows what the treating physician would have changed to to. Probably 8. Setting it to auto between 18-20cm have given me the best results by far. How many doctor visits would it have taken to get there? Probably more than the number of licks it takes to get to the center of a Tootsie Pop. LOL.

If money is an issue, and for most of us it is, go on Craigslist and keep an eye out for a gently used, data-capable machine that preferably works with the Sleepyhead software. In the meantime, read up on everything you can on this board to educate yourself on the condition. Once you have your machine, upload some data to this board and I guarantee the experienced folks on here can get you very close to where you need to be on settings. Remember, it's a marathon, not a sprint. So you are going to have to be patient.

Best of luck to you!

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stienman
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Re: Self-Titration?

Post by stienman » Fri Feb 12, 2016 8:13 am

PleaseHelp111 wrote:I want to ask what steps did you take?

What machine and mask did you get? What was your initial AHI and what did you do to improve it? Do you feel better?
This fits my own situation halfway. I had insurance for the at home sleep study, and all it found was that I did have sleep apnea. Because of my situation I waited for two months before pursuing therapy, and then when the insurance situation got worse I started my own research, found this place, and have chosen to go the rest of the treatment alone.

First, there's nothing illegal about self diagnosing and self treating your symptoms.

Second, the newer automatic, full data machines provide enough expertise built in that you can generally self diagnose and self treat safely. There are cpap contraindications, illnesses, situations, and diseases which, if you have, you should not apply cpap without physician approval or significant expertise. These can be found in the manufacturer's clinical manuals for their machines, or by doing an internet search for "cpap contraindications". One I learned of recently is in the class of connective tissue diseases.

As long as you don't have a contraindication, then it's generally safe to apply auto PAP (APAP) therapy. This type of machine will detect apnea events and attempt to apply PAP therapy to reduce or eliminate them. With an automatic full data machine you can get the high resolution data and discover what the machine's algorithms has discovered about your sleep respiration.

So I was diagnosed, they recommended a dental appliance, insurance wouldn't cover anything, and after pricing out my options, it became obvious that APAP was the cheapest and most likely to be successful strategy:

Mouth appliance: perhaps 50% chance of working, would require a follow up sleep test to determine if it worked, cost at least $800 for cheapest option, and the follow up sleep test would be $500, for $1,300 total. Could not sell mouth appliance after use, so no cost recovery if it doesn't work.

APAP: 99% chance of working: Machine on sale, nasal pillows on sale, heated hose, with an additional coupon: $506. Could sell all equipment after use, with perhaps a 20-30% loss given the sale, if this didn't work (so worst case my apnea is untreated and I'm out $150). For full price equipment you should figure a 50% loss. I just saw a new resmed s10 auto with mask on craigslist for $450, and they are $900 without a mask new, so plan accordingly. Note that the machine I got (resmed s9 for her) is still on sale most places, but is $500 rather than the $400 I paid.

I'm just at the beginning of my journey, though, last night was my third night on the APAP, and I'm still learning the ropes.

My diagnosed AHI was only 10, but my blood oxygen levels dropped to below 56% during the test. I'm more worried about that than the AHI, so I bought a logging pulse oximeter before I got the APAP machine. Since I started using the oximeter I've seen my oxygen level go below 75%, and most nights I've spent 25% of the night below 88%, so that is the battle I'm fighting.

Since I got the APAP I've been above 89% oxygen 100% of the night every night, so it's already measurably improving things. I'm in this for the long haul though, and am making changes in other areas (diet, exercise) so I know that I won't be setting the machine and just using it without change, I'm going to be constantly observing my sleep and adjusting the APAP.

There are ways to self titrate so it's largely a set and forget, though, if you don't want to keep adjusting it. And the machine will continue to auto titrate every night as you use it if you give it a good working range.

I've done a lot of reading and research and feel comfortable doing this without physician oversight, so if you're still having doubts, continue to research your options, the experiences of others, and make sure you're getting the best care for yourself.

Good luck, and keep asking questions!

_________________
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Re: Self-Titration?

Post by Guest » Fri Feb 12, 2016 9:13 am

stienman wrote:
PleaseHelp111 wrote:I want to ask what steps did you take?

What machine and mask did you get? What was your initial AHI and what did you do to improve it? Do you feel better?
This fits my own situation halfway. I had insurance for the at home sleep study, and all it found was that I did have sleep apnea. Because of my situation I waited for two months before pursuing therapy, and then when the insurance situation got worse I started my own research, found this place, and have chosen to go the rest of the treatment alone.

First, there's nothing illegal about self diagnosing and self treating your symptoms.

Second, the newer automatic, full data machines provide enough expertise built in that you can generally self diagnose and self treat safely. There are cpap contraindications, illnesses, situations, and diseases which, if you have, you should not apply cpap without physician approval or significant expertise. These can be found in the manufacturer's clinical manuals for their machines, or by doing an internet search for "cpap contraindications". One I learned of recently is in the class of connective tissue diseases.

As long as you don't have a contraindication, then it's generally safe to apply auto PAP (APAP) therapy. This type of machine will detect apnea events and attempt to apply PAP therapy to reduce or eliminate them. With an automatic full data machine you can get the high resolution data and discover what the machine's algorithms has discovered about your sleep respiration.

So I was diagnosed, they recommended a dental appliance, insurance wouldn't cover anything, and after pricing out my options, it became obvious that APAP was the cheapest and most likely to be successful strategy:

Mouth appliance: perhaps 50% chance of working, would require a follow up sleep test to determine if it worked, cost at least $800 for cheapest option, and the follow up sleep test would be $500, for $1,300 total. Could not sell mouth appliance after use, so no cost recovery if it doesn't work.

APAP: 99% chance of working: Machine on sale, nasal pillows on sale, heated hose, with an additional coupon: $506. Could sell all equipment after use, with perhaps a 20-30% loss given the sale, if this didn't work (so worst case my apnea is untreated and I'm out $150). For full price equipment you should figure a 50% loss. I just saw a new resmed s10 auto with mask on craigslist for $450, and they are $900 without a mask new, so plan accordingly. Note that the machine I got (resmed s9 for her) is still on sale most places, but is $500 rather than the $400 I paid.

I'm just at the beginning of my journey, though, last night was my third night on the APAP, and I'm still learning the ropes.

My diagnosed AHI was only 10, but my blood oxygen levels dropped to below 56% during the test. I'm more worried about that than the AHI, so I bought a logging pulse oximeter before I got the APAP machine. Since I started using the oximeter I've seen my oxygen level go below 75%, and most nights I've spent 25% of the night below 88%, so that is the battle I'm fighting.

Since I got the APAP I've been above 89% oxygen 100% of the night every night, so it's already measurably improving things. I'm in this for the long haul though, and am making changes in other areas (diet, exercise) so I know that I won't be setting the machine and just using it without change, I'm going to be constantly observing my sleep and adjusting the APAP.

There are ways to self titrate so it's largely a set and forget, though, if you don't want to keep adjusting it. And the machine will continue to auto titrate every night as you use it if you give it a good working range.

I've done a lot of reading and research and feel comfortable doing this without physician oversight, so if you're still having doubts, continue to research your options, the experiences of others, and make sure you're getting the best care for yourself.

Good luck, and keep asking questions!
Yeah; it really does seem like getting the Autoset is the most logical choice. It feels like im killing two birds with one stone. The test and treatment. The autoset might not detect other sleep issues but with my own recording and logging I am fairly sure its OSA. Is the oximeter necessary to test progress? I know the AHI is the main indicator, is the quality of sleep / AHI / Oxygen levels all correlated?

Cardsfan
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Re: Self-Titration?

Post by Cardsfan » Fri Feb 12, 2016 9:22 am

When your airway is blocked, you are not breathing in air. (suffocating in your sleep, over and over again). Your oxygen level drops, your organs struggle to function, brain , heart etc. Your brain says "wake up and start breathing". In sleep apnea, this process repeats over and over all night long. And all night long, your heart is working overtime to keep up. The AHI is the average of how many times an hour this cycle happens. Each time it happens, you wake up. With successful treatment, the cycle stops because your airway is kept open.
How far your oxygen level drops is very dangerous in some people. You can do the titration without the expense of the oxygen monitor if you chose to. My oxygen level did not drop to anything significant, and I have moderate apnea. I think it varies with each person.

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Last edited by Cardsfan on Fri Feb 12, 2016 9:30 am, edited 1 time in total.

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palerider
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Re: Self-Titration?

Post by palerider » Fri Feb 12, 2016 9:23 am

Guest wrote:Is the oximeter necessary to test progress? I know the AHI is the main indicator, is the quality of sleep / AHI / Oxygen levels all correlated?
no, and not everyone that has SDB has significant oxygen desaturation.

however, oximeter data can be fun to look at.

_________________
Mask: Bleep DreamPort CPAP Mask Solution
Additional Comments: S9 VPAP Auto
Get OSCAR

Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.

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OkyDoky
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Re: Self-Titration?

Post by OkyDoky » Fri Feb 12, 2016 10:31 am

Mudrock63 wrote:There are members on this board that rail against it, for whatever reason.
Very few that I have noted.
If you become knowledgable and know what and why you are doing things, I think it is a good option. There are times where other problems become evident that a sleep study may be helpful, but with the majority of Sleep Apnea being obstructive it is pretty easy to self-titrate with software monitoring progress.
And yes you can find ways to get machines and masks without perscriptions. Maybe not the mask you want or it is only available in parts that you put together but it can be done.
ResMed Aircurve 10 VAUTO EPAP 11 IPAP 15 / P10 pillows mask / Sleepyhead Software / Back up & travel machine Respironics 760