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Self Titration
There is an interesting thread on www.apneaboard.com about self titration with scientific correlation if any one is interested. The thread is on the Main Forum and titled "Self Titration".
Views: 426
Replies to This Discussion
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Permalink Reply by RockRpsgt on
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Liz, You can't compare yourself to Mary. It has yet to be proven that she will be able to self-titrate. Unlike your own situation.
The key point in your entire statement was "my doctor knew what I was doing and why I needed to." This in know way gives you the right to tell others to do the same. At least form posting it on an open forum. What works for you could harm another.
"it's ridiculous that self titration works better than titration with a tech watching you."
Opinion your honor! I would like it stricken from the record. ;)
Until you have walked a mile in my shoes.
Guessing is not titrating.
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Permalink Reply by ymmits on
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And yet in the UK outcome is almost everything. All the authorities care about is whether you're going to fall asleep while driving. All the insurers and employers care about is whether you're going to fall asleep at work. Health service managers care about targets and budgets, they have to treat a patient presented to them in a certain time and yet they have to manage that within a certain budget.
Yes, it's a broken feedback loop, but it's measurable and simple, if very far from perfect. Is it really any different in the US?
Of course you can take other options, and if one has the financial security in the UK one can pay for one's own diagnosis and treatment - but when the health services are playing a part then the whole market thing comes into play, and hospital referrals cost money!
Hopefully bringing more power and control down to the GP will help this.
Somnonaut said:AHhh, the old "If" game
Which is why in both cases I'm of the opinion that anyone who thinks they have OSA and has the "classic" symptoms and no contra-indications should be able to give a modern, full APAP a trial- there's minimal risk and maximal potential reward. If it stops the snoring and enables their bed partner to sleep through the night that's enough reward. If it increases productivity due to being more wakeful and alert that's a bonus. If it aids weight loss then that's not a bad thing either. If it prevents injury or fatality from accident or disease then that's perfect.
And yet you hold out for "outcomes measures" how is that? The outcome should never be something that can be effected by a very small decrease in AHI. As the field has documented, a small OBJECTIVE change in AHI, can yield a large SUBJECTIVE feeling of relief. Meaning, if you take a patient with an AHI 60 down to 40, he will FEEL better and may think it is "good enough," but is objectively still pathological by a long shot.
In this disorder, you cannot go by perceptions alone. I think that is why the UK is experiencing a broken feedback loop in their medicine.
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Permalink Reply by Somnonaut on
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Liz,
You state:
"All those studies didn't help her very much."
How do we know? It sounds as if you and Mary probably suffer from a more complicated case of Sleep Disordered Breathing called Complex Sleep Apnea. Guidance by a knowledge, trained sleep physician, (for this I would probably utilize one with a Pulmonary background) seems to be the most prudent. But, hey you can do whatever your heart desires.
As for laws, the laws allow you to do almost whatever it is you want to do to yourself. You can treat yourself to your hearts delight, the problem comes when your forays into self-treating directly effect your ability to function the piece of machinery (car, bus, etc) and things go awry. The laws you speak of will not directly stop people from treating themselves, but when you have to show longitudinal compliance data at the physician's Rx to get your license, then.... You get the picture. Driving is a privilege, not a right, so the state can keep anyone they deem hazardous off the streets.
Ahh the classic example of when not recognizing the limits of one's ignorance.
"I have a brother with a masters in physics, and I asked him about this, because I knew enough physics to think that this was wrong but wasn't sure I had the details right. After I explaining how CPAP works and the problem I had spotted, and I asked him if I was right. He not only agreed with me, but thought that I had to be wrong about CPAP. He kept asking me if I was sure that the pressure was kept constant. He couldn't believe it really was. As I said, it's not rocket science. Ever wonder what causes flow limitation?"
Confucius said:
It is truly the wise man who knows his limitations.
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Permalink Reply by Mary Z on
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I was hoping for that magic AHI under 5- I'v never gotten near it. MY sleep doc gave me some samples of Nuvigil, but deferred the prescritption to my neurologist because he didn't want to worsen my neurological issues. My main concern is to get my AHI under 5, instead of 20 something. At my last titration, 4/8, they saw no centrals, but I didn't see/feel any improvement.
.Somnonaut said:WHen on PAP desaturations are rare, so to not find desaturations is not a finding that one would use to change settings (ie, lower pressure). The most likely scenario the doc was using was to investigate lung issues and were you desating even WITH the PAP on. Now a finding of chronic basal low saturation could be cause to alter therapy.
As for the 10 studies, it seems like you are being followed very closely, and yet you complain that you are not being helped.
Who Rx the Nuvigil? the same sleep doc or another, and does this sleep doc know you are on Nuvigil? Is you major complaint EDS, or other?
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Permalink Reply by liz4cps on
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I understand that self-titration can be risky. I was very conservative to start with and still am; changing only 0.5 cm H2O at a time, and I started with a titration from a lab (that was about 4 too low!). If you're trying to fall asleep and you're finding it harder to breath in on the machine than you did off the machine, that's not a good sign. This is a bit tricky since it can be hard to breath out at the right level, but that is one way you can tell. These days, i can't fall asleep with the pressure too low.
Sometimes, I can tell when it's too high as I start to fall asleep; other times, I wake up with an extremely dry mouth. When that happens, I reduce the min by 0.5 cm. The lowest I have it set is 12; the highest is 14, so this is not a huge range but this can make a big difference in how I function the next day. The first lab originally set it at 8; the second saw that was way too low. I gained weight after starting on CPAP until I'd crept the pressure up to about 12.
I understand in the lab you jump 2 cm at a time. From my experience, I'd think you'd want to tweak it by less when you've gotten into the range.
My point about Mary is that her studies have apparently not been able to titrate her either.
My guessing titration worked better than titration with a tech. Something is really wrong.
Rock said:Liz, You can't compare yourself to Mary. It has yet to be proven that she will be able to self-titrate. Unlike your own situation.
The key point in your entire statement was "my doctor knew what I was doing and why I needed to." This in know way gives you the right to tell others to do the same. At least form posting it on an open forum. What works for you could harm another.
"it's ridiculous that self titration works better than titration with a tech watching you."
Opinion your honor! I would like it stricken from the record. ;)
Until you have walked a mile in my shoes.
Guessing is not titrating.
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Liz,
You are mixing apples and oranges.
A single night titration in a lab with standardized protocol is an objective titration.
A multi0night titration outside a lab with no standard protocol is a subjective titration.
We techs don't just sit there and watch.
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Of course you don't sit there and watch. In theory, you should be able to do a much better job.
In fact, someone totally failed me.
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I did have guidance from a doctor. I was actually diagnosed with UARS (upper airway resistance syndrome; not sure that term is used much these days). During my first titration, I woke up constantly but they weren't seeing the sleep breathing problems I was having and didn't try raising the pressure. I was told by another sleep tech that the lab that titrated me should have tried increasing the pressure to see if the frequent awakenings would stop. It's possible that they were not looking for flow limitation back then; I have a suspicion they would have seen at least that. This was in 1997.
To his credit, the doctor figured out pretty quickly that I knew more about the machines than he did. I mentioned my education here earlier. In more detail, I have a PhD in computer science/artificial intelligence from the U of Maryland at College Park, a masters in computer science, and a BS with a double major in math and computer science. The last included 3 semesters of engineering level physics. I learned something about pressure, flow, and resistance along the way, although that was not my focus. When I spotted this problem, I knew that it would definitely be a problem if this involved water, but I wasn't sure the analysis was the same for air since it's compressible and water is not. So, I called my brother since he knows more physics than I do; he has an MS and BS in physics from Rensselaer Polytechnic Institute and works at NIST (National Institute of Standards and Technology).
The software that I wrote that was used on one of the older autopaps was YAPS. If you click thru to it, you'll see an article I wrote for a conference in 1983 where I gave a talk on it while I was a grad student. To clarify, it is not specific to CPAP technology, but it can be used by a programmer to write an expert system; for example, it was also used to write an expert system used air traffic controllers.
In reference to the patient that thinks all is good because he's gone from 80 to 60. I did see some improvement at 8; at least I thought I did. In retrospect, I was still quite tired, but I lived with it for over a year, getting more frustrated. I had an opportunity to try an autopap in 1999 or so, but it still didn't see my sleep breathing problems. However, I could creep the pressure up and was found I did suddenly do a lot better. Maybe you're saying I should have crept it up more?
Back to my doctor: He agrees that I am better treated at the pressure level I'm at now than the pressure they set for me after that first titration. This was also confirmed by a sleep tech, the last time I went for a titration. She started me at 8 cm and I told her, please don't leave it there long because I won't be able to get enough air, and I thanked her when she put it up. She said it was clear cut as I'd started snoring. I actually gained weight when I went on CPAP while at 8 cm and stopped gaining as I got the pressure up to a therapeutic level (no one has been able to explain that -- my stomach was growling almost constantly during that time). So, it's possible I wasn't snoring in the original study, but it's clear that they did not titrate me correctly.
Which is to say, you're much safer driving on the road with me now than when I was first on CPAP with it too low. And, yes, again, my doctor was involved in all this.
The laws about not changing CPAP pressure are frustrating to me since it doesn't make sense to keep the pressure constant in the first place. It's almost like the a law I heard about that set pi to be exactly 3. You can pass all the laws you want, but pi is still going to be 3.14159... Take care about who is ignorant about what. Doctors can prototype but they are not engineers; trust me! It was clear to me, that CPAPs were not engineered well from the very beginning. I had a running joke that it was engineered by a new grad, then I figured it was a class project. Now, I realize, it was a doctor. Doctors are brilliant but they don't know their limitations; they know they don't know math or physics; I have talked to enough to know that. I'm not sure why they think they can be engineers and design something like this properly. That doctor did a great job prototyping CPAP and showing proof of concept -- and with computers the way they were way back then, it probably would have been prohibitively expensive to program CPAP effectively. However, things have changed since then and someone needed to sort these issues out.
To give you a trivial example, the first headgear I got was designed without considering hair on someone's head. Now, as a woman with long hair, I realize that I am far from the typical sleep apnea patient -- a middle aged man with a lot less hair. Still, it shows that no one sat down and thought these things thru -- a real engineering design was not done. Headgear has improved since then, but the headgear I made for myself is still better than anything else I've tried.
I think it's a little like wheelchairs. Before an engineer landed in one, a person in a wheelchair had no way to move the chair; someone else had to have push it.
I think educating at least some patients makes sense so they are able to adjust the pressure, more along the lines that is done for diabetes patients, at least until the pressure issues can be sorted out. CPAP has helped me alot and so I'm not saying this is a fatal flaw. But I think CPAP therapy would be much more effective if this was sorted out. Ideally, you get an engineer to think thru how to solve the problem of having the pressure high enough to keep the airway open and to prevent the airflow from dropping rather than trying to compensate after it has dropped. Thankfully, they are at least beginning to make machines that respond when the airflow drops, but they're still not there.
Somnonaut said:Liz,
You state:
"All those studies didn't help her very much."
How do we know? It sounds as if you and Mary probably suffer from a more complicated case of Sleep Disordered Breathing called Complex Sleep Apnea. Guidance by a knowledge, trained sleep physician, (for this I would probably utilize one with a Pulmonary background) seems to be the most prudent. But, hey you can do whatever your heart desires.
As for laws, the laws allow you to do almost whatever it is you want to do to yourself. You can treat yourself to your hearts delight, the problem comes when your forays into self-treating directly effect your ability to function the piece of machinery (car, bus, etc) and things go awry. The laws you speak of will not directly stop people from treating themselves, but when you have to show longitudinal compliance data at the physician's Rx to get your license, then.... You get the picture. Driving is a privilege, not a right, so the state can keep anyone they deem hazardous off the streets.
Ahh the classic example of when not recognizing the limits of one's ignorance.
"I have a brother with a masters in physics, and I asked him about this, because I knew enough physics to think that this was wrong but wasn't sure I had the details right. After I explaining how CPAP works and the problem I had spotted, and I asked him if I was right. He not only agreed with me, but thought that I had to be wrong about CPAP. He kept asking me if I was sure that the pressure was kept constant. He couldn't believe it really was. As I said, it's not rocket science. Ever wonder what causes flow limitation?"
Confucius said:
It is truly the wise man who knows his limitations.
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I still think you have a myriad of issues going on and all the paper hanging on your wall will do naught for your sleep disorders(s) until you begin to peel them back one by one. But, you have fun tinkering with your NIST brother, it still does not mean either one of you know squat about how to properly recognize and treat all the sleepd disorders within sleep medicine.
You are actually one of those patients who takes pot shots at the people who are there to try and help you byfitting you into a cubbiehole, (yes, a cubbiehole) because that is what modern medicine tries to do. See if the cubbiehole containing the set of symptoms and testing pathological level and the therapies that are prescribed for that cubbiehole can be applied. But, as you express more and deeper levels of symptomology, you become more and more upset that the quick fix was not in your cards, and you then take the therapy out of the hands of those who understand it best (yes that is NOT you, nor your brother) and then turn on the field and complain to every and anyone how you get no help from the therapies that you are now controlling.
You are living a self-fulfilling prophecy.
Good luck in your strife, as you are throwing the baby out with the bathwater by taking the drivers seat, it will be a lonely trip because not many are going to get in the car for the ride along with you, as you adjust the knobs and dials willy-nilly like.
"Have fun stormin' the castle"
Now we have added gaining weight to your neural network of disorders. You need a clinic approach...but they are doctors what the heck do they know? You REALLY think that the billions of dollars that have been spent on CPAP machines was left to be engineered by the physician? Really? And the headgear, you REALLY think that the doctor's at more at fault than engineers for the design of the straps to headgear? REALLY? You trully have an axe to grind, and I for one will not be your soapstone.
Over and out.
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Is it so hard to believe that a lab back in 1997 could have messed up? And, yes, I think there are systematic problems as well.
Who says my symptoms have been getting worse? I was much worse off in 1996-7 before cpap. Then better in fall 1997 when I got on cpap, even though they put me at 8 cm. In Spring 1999, when I started adjusting my pressure, I finally felt a lot better. At this point, I have REMstar Auto set to a pressure range of 13 cm to 15 cm. About once or twice a month, I need to tweak the minimum up or down by about half a cm. Doing that, I feel better than I would if I had the machine set to, say 10-16. The REMstar Auto does look for flow limitation and so catches more of the problems I have breathing than older autopaps, so I don't need to adjust the minimum as often as with my old one. Still, it doesn't see all the problems I have.
I have been checked for other problems; I have no other sleep disorders.
My plan is to stay on top of the technology in new autopaps as they come out, lose weight, and continue tweaking the minimum pressure on my autopap as needed. And see if I can help sort out this pressure/flow/resistance problem. I can't help but think I'd sleep better if pap technology took these issues into account.
I think this will be my last response except maybe to say when I post an explanation of the physics problem on my personal blog -- unless someone else has a question. The physics problem post won't be until next week, at least.
For patients that are reading, please understand that cpap really does help a lot the way it is, and the sleep techs usually do come back with a pressure that works. The problems I'm talking about occur when the resistance in your airway changes too much when you sleep. However, keep in mind that even with my problems, going on cpap helped me a lot. So stick with cpap, and solve the problems you run into. Back in 1997, it was a lot harder to get a mask that worked right or anything else -- it took me from a titration in May to the following September before my insurance company approved my first cpap! And it was January that I first went to the doctor about this. So, things have improved a lot; masks are a lot better, etc.
If you think you're having problems similar to mine, you might want to think about a newer autopap since they do adjust when they see flow limitation. Those might well help you a lot, and do talk to your doctor.
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Mary, There are many reasons that a tech might raise the pressure in circumstances such as yours. As mentioned supine REM or any REM might be one. Optimal pressure is the main goal of the study. It is also the job of the tech to show the doc as much useful objective data as possible. it is very rare that a person go through an entire titration without being raised. With that much time and opportunity I would have raised your pressures just to see if there was a difference. This protocol is called raising for "observation" and is an acceptable part of any titration(see aasm protocol). This rule allows for us to up/down titrate up to 5cm just to show the doc the effects. It also allows us and the doc to look at your sleep related breathing patterns from many different angles.
I hope that helps Mary. Unfortunatley you will have to speak to the tech or doc to find the true reason behind your circumstances.
Mary Z said:Rock, do you know how much access I have to my Sleep Tech? Zip. He only works nights and you can't get through on the phones and the daytime techs are very closed mouthed. They will only discuss minor problems with you. If it's a question about your sleep study or you want to send in a data card to have them check it. They won't (can't?) tell you anything about it. Any information has to come through the doctor and if you don't want to accept "No changes at this time" you have to make an appointment. I get tired of paying the guy. I get far more help from the techs on this forum than from my sleep centers techs. But maybe those are the rules.
Speaking of which, can any of you guys explain why a sleep tech would run me at 8/4 for 437 minutes, find no apnesas and then raise the pressure to 10/6 for 16 minutes, 12/8 for 21 minutes
, 14/8 for 15 minutes, the 16/8 for 18 minutes with all of the results marked N/A. They were watching for centrals. No one at the sleep center will comment. I got home expecting to finally have decent numbers (remember all night no apneas) and they were as bad as ever AHI high teens to +20, AI high single digits.I don't know why this went bold and italisized I didn't touch the buttons and I can't undo it. There was no special emphasis on this part of the post.
Mary Z.
Rock said:
Clowns to the left, Jokers to the right.............
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