Self titrate? Guessing game?

[madhungarian]

Hi all. I've been lurking here for a couple of months and this is my first post. This forum by far has been the most helpful and useful resource to me in treating my severe OSA. I was finally diagnosed with severe OSA back in mid-August (AHI 70.8 and O2 desturation at 70%). It took me years to get a doctor to listen to me to have a sleep study ordered but finally I prevailed. The sleep study itself was a wretched ordeal (complete with nasal pillows smelling like pungent curry from the sleep technicians fingers) . Anyway, during the sleep study the 'ideal' titration level was found to be 8cm.

After a significant series of inexcusable delays on the part of the sleep lab/doc I finally was able to order a ResMed S9 Autoset device with Swift FX nasal pillows. Adjusting to it has been mostly fine aside from a nasal sore issue which was resolved through the use of Bactroban. During this time I learned that my DME provider limited my access to the data portions of my CPAP machine but thanks to the resources of this board I was able to work around these obstacles.

In short, today was my 30 day follow-up with the sleep doc/pulmonologist. I took my memory card with me to the appointment but was informed that he has no way to retrieve the data. I then mentioned that my DME provider has been collecting the data from my CPAP but the doctor seemed utterly uninterested in getting the data. Beyond a few ceremonial questions of 'how are you feeling?' the medical appointment was utterly useless and frustrating. Which brings me to my question. My AHI index avg for the month is about 9.3. On a night to night basis I vacillate between 6-13 AHI. Is this fine? I should also point out that I did an experiment for 3 nights where I upped the pressure to 9cm. In the mornings afterwards my AHI went down some but then I felt really irritable and tired on those days. Also, by the third night the pressure felt kind of uncomfortable in my ears and moved it back to 8cm.

So to repeat, is 8cm with the AHI levels in the 9.3 avg the best I can achieve? Yes, I feel 100% better than before but on some nights I do have occasional nocturia (whereas before it was a chronic feature for close to 20 years now) and still feel groggy (but not sleepy) during the day. And should I start looking for a different sleep doctor? After the appt I was troubled by the fact that he didn't seem to care about the empirical data stored on the cpap machine for the last 30 days choosing instead to go by the sleep study which was unquestionably the worst sleep I've had in memorable history. Why is anyone even collecting the data if it's not being even looked at?

[apneawho]

Your AHI is too high. I would look for a new doctor if it were me, not because your AHI is high but because it seems the doctor didn't do anything to assess your therapy and make a plan to optimize it. You can and should take this into your own hands. You can be responsible for managing this better. Read and ask questions here. AHI >5 is too high.
Are you running in straight cpap mode at pressure of 8? Or Auto mode? You should take a moment and go to User Control Panel. Complete your equipment profile using text. If you do not have ResScan software go to member Uncle Bob profile on this forum for the link to the software so you can look at your nightly data and also post some reports for members to look at and help you. It is not a guessing game but more of a common sense approach coupled with experience from those who know!

[Pugsy]

AHI of 9 is too high. Nearly double what we normally would want at a minimum.

Do you have the software to make sure that leaks aren't impacting therapy?

If no leaks... 8 cm pressure is too low.. since increasing to 9 caused discomfort try increasing in small stages to work up to higher pressure and allow your body to adjust slowly. I think the ResMed machines allow for 0.2 increments. I would use those and not do the full 1 cm jump at one time.

Also..are you using EPR? If so at what setting? If you are using EPR and can reduce it comfortably to a lower setting you will effectively raise your overall average pressure a wee bit more without changing the pressure hugely.
Sometime reducing or turning EPR off will help reduce the AHI.

[avi123]

In my opinion the idea that you can titrate yourself with your home CPAP is wrong. To titrate properly you need a few more medical equipment such as EEG, ECG, RIP, etc., costing thousands of $ each. But first check the article mentioned in my signature line about the AHI value being useless for any indication of Sleep Disorders. As to your MD not trusting your home CPAP data makes a lot of sense to me. My MD who is a pulmonologist MD and an Internal Medicine MD, also does not give a damn about my CPAP data output, saying that since it relies on air flow only it's for the birds. Only a full PSG could try to pin down an effective pressure if there is one. Most of the active posters on this board who are just lay people but assume as being mavins insisting on to telling their doctors how to treat them. And if a doctor does not comply with their expertise then they would look for another doc. And another one and ........... So watch out for posters who actually crave attention by posting inssently and rendering medical advice.

[Pugsy]

Only a full PSG could try to pin down an effective pressure if there is one.

Well in an ideal world I guess it should or would but OP here has already had one PSG titration study and they didn't get it right then so I am sure they would for sure get it right the next time...or the next...or the next. For enough money yep, I bet they would eventually be spot on.

Or OP could do a little homework and most likely get things much more under control on his own. Unless there are some unusual complicating factors it really isn't that difficult and hurts nothing to try at these relative low pressures.

[chunkyfrog]

As you can see, there is a variety of views concerning the value of AHI.
It is however, usually a reasonable guideline, which, when combined with your other symptoms, can help in mapping effective treatment.
For example, my original machine was an S9, set at 14 cm, which I used with an EPR of 3 for nine months.
Once I bought my S9 Autoset, I fiddled with my range for a while until I discovered my average pressure is around 12, and many nights it is more like 10.
I don't know if all PSG's are as unreliable as mine was, but. . . .

[madhungarian]

My machine does have EPR and I think it's set to 3cm. The leak information is kind of cryptic for me to interpret. But every morning I do get the green smiley face.

[apneawho]

My machine does have EPR and I think it's set to 3cm. The leak information is kind of cryptic for me to interpret. But every morning I do get the green smiley face.

Post some of your graphs so the members can direct you regarding leak, etc. It does not have to be cryptic.

[madhungarian]

In ResScan for 30 days it says Median 0.0, 95th Percentile 0.0, and Maximum 12.0 for leaks. I don't *think* I'm having a problem with leaks.

[apneawho]

So watch out for posters who actually crave attention by posting inssently and rendering medical advice.

I am in the medical field, 33 years, and despite having access to "good doctors" I had to diagnose myself, ask for the appropriate tests, and let them think they came up with it. No one here gives medical advice or any advice in a vacuum. This is about providing support, becoming educated and being proactive in self disease management. No one seems to frown on self management of diabetes or countless other conditions. Unless there are complications it is not rocket science.

[avi123]

My machine does have EPR and I think it's set to 3cm. The leak information is kind of cryptic for me to interpret. But every morning I do get the green smiley face.

You asked: Why is anyone even collecting the data if it's not being even looked at?

If you read the article that I mentioned to you above,then you saw that only AHIs above 20 could indicate some problems worth investigating further. Especially if it indicates a possibility of a Central Sleep Apnea Syndrome. When I started CPAPing a year ago I also gave a lot of importance to to my AHI values. So I started titrating myself but I was surprised that I felt the same (negative ) feelings all along of AHIs from 7 to 20, and pressures from 6 cm to 15 cm. With and without EPRs. By "same feelings" I don't mean the early 3 months of CPAPing such as headaches, air ingestion, etc., but the of sleep fragmentation, the residual sleepiness during the day time and the needs to take naps.

Talking to my MD about it he suggested that it's probably due underlying medical conditions such as diabetes, peripheral neuropathy (such as vertigo) that I suffer from.

Check here about those medical conditions that are associated with OSA (comorbids):

http://emedicine.medscape.com/article/304967-overview

http://emedicine.medscape.com/article/295807-overview

[Pugsy]

Avi edited his comments to add this little jab after I posted my comments.

Most of the active posters on this board who are just lay people but assume as being mavins insisting on to telling their doctors how to treat them. And if a doctor does not comply with their expertise then they would look for another doc. And another one and ........... So watch out for posters who actually crave attention by posting inssently and rendering medical advice.

He has zero idea who I am or what I am yet he is real quick to try to discredit anyone but himself when he makes an off the wall diagnosis or some inane comment. Jeezz if his doctors were so smart how come he still hasn't got his therapy optimized? Oh well, no sense beating a dead horse.

This is about providing support, becoming educated and being proactive in self disease management. No one seems to frown on self management of diabetes or countless other conditions. Unless there are complications it is not rocket science.

Amen. Well said.

A little common sense and education goes a long way. Some people just don't have any common sense and have to rely on someone with a bunch of fancy letters after their name. We both have known a lot of doctors with zero common sense.

In ResScan for 30 days it says Median 0.0, 95th Percentile 0.0, and Maximum 12.0 for leaks. I don't *think* I'm having a problem with leaks.

Leaks probably are not an issue. Those are fine leak numbers.
If you can comfortably reduce EPR or even turn it off this might help with that AHI.
EPR is a per cm drop during exhale in the pressure (setting of 3 means a 3 cm drop during exhale) which effectively reduces the pressure for about 50% of the night during exhale. Reducing it will limit the drop in pressure which may be allowing some events to occur. This would be what I would do first if I could comfortably exhale without EPR or have it set to 1. EPR is strictly a comfort feature and there is no reason in the world why someone cannot alter this setting if they want to. Pressure change? Well that is up to you on what you are comfortable doing. But given your ear problems with a higher pressure I would try altering EPR first. It might just give you the lower AHI and no need to increase the pressure above 8.

[madhungarian]

Thanks everyone for the prompt and informative replies. The consensus advice seems to point to finding a new doctor but also experimenting with the EPR setting. I will try that soon. I'm having surgery (unrelated to OSA) this Friday and will probably wait some before I revert to trying to optimize my treatment since the painkillers and discomfort will no doubt impact my sleeping habits in the near term. I had briefly wondered if changing my setting on my machine to Auto would do anything of value but I wouldn't even know where to begin as far as coming up with a range to set it at. Tinkering with the EPR setting seems to be easier.

As for Avi's suggestion to ignore the AHI readings--the points you make are intriguing however aside from OSA and a soon-to-be-removed bad gall bladder issue I'm otherwise a very healthy individual with no underlying illnesses.

[Pugsy]

a soon-to-be-removed bad gall bladder

Good luck on your surgery. I had it myself almost 20 years ago.
We will all be wishing for a speedy and uneventful recovery for you.

[avi123]

Thanks everyone for the prompt and informative replies. The consensus advice seems to point to finding a new doctor but also experimenting with the EPR setting. I will try that soon. I'm having surgery (unrelated to OSA) this Friday and will probably wait some before I revert to trying to optimize my treatment since the painkillers and discomfort will no doubt impact my sleeping habits in the near term. I had briefly wondered if changing my setting on my machine to Auto would do anything of value but I wouldn't even know where to begin as far as coming up with a range to set it at. Tinkering with the EPR setting seems to be easier.

As for Avi's suggestion to ignore the AHI readings--the points you make are intriguing however aside from OSA and a soon-to-be-removed bad gall bladder issue I'm otherwise a very healthy individual with no underlying illnesses.

I could tell you how I have decided on the pressures range setting when I switched from the CPAP mode to Autoset. But as I mentioned I see no changes in my AHIs which are changing randomly between 7 and 19 at pressures from 9.6 cm in CPAP mode to 11 min and 15 max (EPR =0) in Auto mode.
At above pressure of 15 cm the AASM recommends switching to a bipap machine.



p.s.

Notice the exact wording of the 2008 Clinical Guidelines for the Manual Titration of PAP in Patients with OSA (from AASM 2008).
Link:

http://www.aasmnet.org/Resources/clinic ... 040210.pdf

The pressure of CPAP or BPAP selected for patient use following the
titration study should reflect control of the patient’s obstructive respiration
by a low (preferably <5 per hour) respiratory disturbance index
(RDI) at the selected pressure, a minimum sea level SpO2 above 90%
at the pressure, and with a leak within acceptable parameters at the
pressure. (14) An optimal titration reduces RDI <5 for at least a 15-
min duration and should include supine REM sleep at the selected
pressure that is not continually interrupted by spontaneous arousals
or awakenings. (15) A good titration reduces RDI ≤10 or by 50% if the
baseline RDI <15 and should include supine REM sleep that is not
continually interrupted by spontaneous arousals or awakenings at the
selected pressure. (16) An adequate titration does not reduce the RDI
≤10 but reduces the RDI by 75% from baseline (especially in severe
OSA patients), or one in which the titration grading criteria for optimal
or good are met with the exception that supine REM sleep did not occur
at the selected pressure. (17) An unacceptable titration is one that
does not meet any one of the above grades. (18) A repeat PAP titration
study should be considered if the initial titration does not achieve a
grade of optimal or good and, if it is a split-night PSG study, it fails to
meet AASM criteria (i.e., titration duration should be >3 hr).
******************************************

RDI = (OA + CA + MA + OH w/arousal + OH w/desat) per hour of sleep.
AHI = (OA + CA + MA + OH w/desat) per hour of sleep.

So for a patient who shows up at the PSG clinic with RDI of 60 and after CPAPing reduces the RDI to 17, it would then be regarded as an adequate titration.
********************************

Good luck with the Gall Bladder removal!

(I speak some Hungarian.)