[split] Therapy Questions

[nativedancer]

I discovered I had apnea following a COPD episode when my son could not wake me one morning and called 911. I woke up finally in the ER after they started oxygen therapy. My oxygen reading was around 40, a nd I nearly died. The pulmonary Dr suspected apnea and advised a sleep study, unless I wanted to return to the ER every week or so. I weighed about 244 then, some of it a recent gain, perhaps, owing to a regimen of steroids during the hospitalization. The sleep Dr's verdict was severe OSD, complicated by a partially deviated septum, mouth breathing, and the necessity of an oxygen regimen. The RX was a Resmed S-9 vpap with a full face mask and a pressure of 26/20. My relief was almost immediate, and although the HME said that the AHI was relatively high, ranging 8-9, they were not concerned, and the Dr. did not make any changes. I was no longer falling asleep at the computer, and was able to escape a morning or afternoon nap. And whereas I had been getting up 12-15 times/night to urinate (or so I thought) I was suddenly getting up only once, and that had more to do with running out of water in the humidifier than with any driving need to relieve myself.

This went on for some months, and I loved my mask, but from the beginning I had experienced some difficulty in coping with the leaks. At first I did not know how bad the leaks were, as my HME did not advise me, and the only report I was given was the AHI. In my ignorance, I was unaware of the other variables, or my ability to change any factor(s).

In the past month, however, the leaks got worse, and I simply could not keep the mask adjusted to allow for any comfort or really restful sleep. And then I found this board and discovered my way into the S9 clinician's manual. I did not feel capable of making any changes, but while scrolling through the various modes, I forgot what the initial setting had been. Oops. The only term I was familiar with was CPAP, so I set it at that, and not wishing to be known for my true meddling self, I left things there, not even aware I had changed not only the mode, but the pressure, which was set, I learned later, at 8/8.

Oh wondrous day! The first night of CPAP was the most restful I had experienced under the therapy. Nor did I have to tighten the straps until the velcro fasteners of my quatro mask reached behind my ears. I found I had lost 20 lbs over the past four months, and suspected the loss may have affected my pressure needs. And the readings seemed to support this: the fiirst night my AI was .5, AHI 3.6, and LEAKS only 15L, when I had been averaging over 115. Things continued to progress for about a week, when i grew concerned that, despite the excellent numbers, I might have made some really stupid mistake. I notified the HME, and they too were astonished at the good readings, but when I told them about the change to CPAP, they called the Dr., who ordered a return to the initial pressure, and the S mode, and suggested I make a new appt to see him. Ok, I went in, but he was loathe to change anything without a new sleep study. Which I have just completed. I don't see the Dr. for another month, but the sleep technician advised me she had been able to lower the pressure to 18/13. When I got home this morning, I immediately changed the pressure on the machine. Which is where things stand now, and I am eager for tonight's new adventure.

I really think I'm on the right path finally, and I'm no longer fearful of my mysterious but wonderful machine. Were it not for the brave and resourceful members here, I don't believe I could ever have conquered my hesitation at taking things into my own hands. As the sleep technician told me this morning, "don't worry so much -- everybody messes with their machine."

Thank you all, so much!

[nativedancer]

deep satisfying 11 hr sleep the first night w/new pressures. Very little change in the readings, however, and my major problem, excessive leaks of about 120, has not diminished. I didn't notice major mask leaks during the night, and could not detect a hose leak, but today, just as a safeguard, I installed a new hose. Hoping for a better score tonight ...

[nativedancer]

After 2nd night w/new pressures, I am confused and somewhat disappointed. AI was 4.2, AHI, 14.8, largest it has ever been in therapy, LEAK, 133, also the most I've experienced, and MV 4.2. Suspecting a hose leak, I had installed a new thinline hose, and, as a further measure, a new cushion.

I have always enjoyed the full face mask, and have used several different kinds with no problem beyond leakage, which, under my initial RX had finally gotten pretty severe, involving constant adjustment throughout the night.

Following a new sleep study, I lowered the pressures from 26/20 to 18/13, which the clinician had found satisfactory. I experienced no problems in the study and slept wonderfully, not really wanting to get up after the 5 hr regimen. There was, however, one difference between this study and my initial one some months ago: after discovering I could not tolerate a nasal device, she suggested a Resmed Airfit, which I found very comfortable and a good choice, which I plan to order soon.

Here's the thing: I am sleeping soundly 9-10 hrs/night, and having to get up only once during that time. That has been true from the beginning of the therapy. I still get a little drowsy during the day from time to time, but attribute that in part to a side effect of my Lasix scrip. But earlier, under the former pressures, I had gradually been forced to keep the mask very tight to prevent leaks. Now, though, I can keep the straps comfortably loose, and have to make only minor adjustments. But these numbers surely indicate that some adjustment needs to be made. My quatro mask seems to be a good fit, and the smiley icon says so as well. I don't notice any untoward noises, and I am resting well. I am a mouth breather, though, and always have dry mouth to contend with. I have tried a chin strap, but it didn't help at all.

My next doctor appt is a month away, and the clinician advises it is sometimes a week or so before the doctors get around to reading the results. So, rather than suffer through the previous higher pressures, I made the change myself, at least for the time being. But really, I don't know what else to do.

I am planning to install Sleepy, but my OS is a Linux, and I will need my son to do it for me, which may be a while.

Thanks for any suggestions.

[nativedancer]

i guess there's such a thing as devoting too much attention to a problem, particularly as one grows older. And too, I suppose I was expecting a quick fix to my readings by simply setting new pressures. Also, I envy some of the great numbers I read about here, and want to be in that company. I'll just keep searching for the cause of the leaks, and just plod along at a more leisurely pace.

[Sleepster]

Hi nativedancer, I have moved your posts in the Success Stories thread to this new thread. I think you'll have a better chance of getting your questions answered this way.

You are correct thinking you should takes things slow and not get overly concerned with the bad AHI numbers. They really don't mean much when your leaks are so high. Get with your equipment provider and ask to try a different mask. Look at the hours used each night to verify that you're using the machine all night and not removing it during your sleep. Once you get the leaks under control you can start working on lowering the AHI.

[nativedancer]

Thanks Sleepster. And I appreciate the move. Going back to my old simplus tonight. I liked it before except the straps are too thin.

[retired_guy]

If it ain't broken, don't be fixing it. You have been sleeping very well. Getting up only once a night? You're feeling good.

So you're concerned about the leaks. What can you say about those? I don't care about the maximum or highest value over the course of the night, but rather the average or median values. If it spikes once a night but the rest of the 7.99 hours it's fine, then there is not problem.

If the median is over the thresholds, then work on it.

But pay more attention to the fact that you are sleeping so wonderfully than to the fact that a leak score isn't quite what it needs to be. At the pressures your using you will probably have this happen.

When you accidentally went to cpap 8/8, what was your ahi score? What number of apneas, versus Hypops versus CA's? What are they now at your current pressures?

You really need to get the software installed so that you can see what's really going on. It could well be that your apnea could be controlled at much lower pressures than what the Doc is currently insisting on. But you can't know that without results.

[trish6hundred]

Hi nativedancer,
WELCOME to the forum.!
Much success to you as you continue your CPAP therapy and fine tuning it.

[nativedancer]

thanks, trish6hundred. today i decided that my facial hair is perhaps a major factor in the leaks. i don't have much of a beard, but neither do i shave very often. so tonight i'll give it a try. i also plan on ordering an airfit soon if the shave doesn't do the trick.

[Crimson Nape]

Good going, nativedancer!

For your consideration; I've found that the shorter time span between shaving and bed plays a major role on AHI and leaks. Also, washing your face prior to bed can have an effect.

Hang in there.