It hit me like a ton of bricks. Need advise.

[balba]

This forum has been so helpful and encouraging to me. I really appreciate you all a lot.

I have been using CPAP for six weeks. My prescribed pressure is 7. I use a ResMed S8 Elite, an Ultra Mirage II nasal mask, and I have a Humidaire 3i. The ramp start time to build up the pressure was originally set for 30 min. The Rep that explained everything to me said that it was so the pressure wouldn't be too much to deal with all at once. After getting use to it I set the ramp to 15 minutes.

It was really ruff the first two and a half weeks but the initial ups and downs ended. I have gotten use to the machinery. As strange as it may seem, the feel and sound of the air pressure seems to have somewhat of a soothing affect on me and I look forward to putting the mask on at night. I guess that's why I am so baffled about what has happened. Well here goes:

At week three I woke up one day and felt absolutely great. I felt like I was getting good quality sleep. I felt less tiredness and more energy than I had in a long time. I was alert. Things I use to put off because I had no motivation I began to deal with. I felt unstoppable. This went on for about a week and a half.

Suddenly out of nowhere I seem to have hit a brick wall. The tiredness is back and so is sleepiness. I am experiencing some of the same symptoms I was having before the CPAP therapy and it doesn't seem to be getting any better. I continue to use CPAP, but there are still no changes. I don't know what went wrong or if I am doing something wrong.

I am asking you guys advise, because I feel that you can relate to what I am going through so much better than my doctor can. It's not that I don't feel she's knowledgable, but she doesn't have sleep apnea. People without it doesn't seem to understand the condition the way that we do.

Thanks again,
balba

[chdurie2]

balba--

same thing happened to me, and i can't explain it, other than to say that perhaps, although i really didn't think so, that the initial "fix" was psychological or that initially the pressure was right, but now that i am used to it, it's insufficient. i dunno. i've been doing cpap regularly for three months and on some recent nights, i think the machine isn't even on when it is. that's why i'm going to lobby, if necessary, for an apap.

anyone have a good explanation?

caroline

[sir_cumference]

Hi

When I first started treatment about a year ago I was 'titrated' on an apap machine - and all was well. But, when the health people thought they had worked out my pressure -7.2- they then set me up with a cpap machine. Within 2 -3 nights I was close to throwing the damn thing out of the window. All my symptoms returned and along with them a great deal of extra frustration that things had started to go so well and were now heading down hill at great speed.

Anyway, to cut a long story short I was back on apap within a very short time and found that my pressure on an average night was well into the 8's!!! So the cpap set at 7.2 was way to low to meet the real need.

I think, that to start with a low pressure will make a great deal of difference because you have had nothing for so long. But, when your body gets to the point where it is starting to recover a little, the real extent of your need starts to be revealed, and if anything, your body asks for even deeper sleep and that can lead to the need for even higher pressures.

So, since that time I have kept an eye on my pressures and noticed that with the apap machine I hardly ever have 2 nights the same. For example, the lowest I have had seems to be 8.2 and the highest (admittedly with a cold) was 14!! BUT even with a cold and a pressure of 14 I got good quality sleep and am able to function just fine.

You see our bodies, being organic, are not like machines which can live with one setting and never need to change. Women have monthly cycles which affect water retention and the like which may well have an affect on their pressure needs. We get mild allergies which affect pressures, we get colds etc etc.. That is why I would never go back to straight cpap - I am not a machine and my need change on a night to night basis.

The only time I think cpap may well work is if you over set it and over titrate so that you are covered for the ups and downs of human life, but a) the medical profession don't like to do that, and b) how good is it for you to have a pressure setting that is higher than you actually need?

So the upshot of all this is to say 'get apap if you can'. If you can't, why not start a little experiment yourself by raising and lowering your pressure until you find a level that works for you? If you are careful, there is no reason to believe this should be dangerous, and who better than you to say if a pressure is working or not? Just raise it a little at a time, say from 7.2 to 7.7 and see if it makes a difference. If not, then try 8.2 ... and if that works, after a few days try 8.0 ... you get the idea.

I hope this helps.
sir_c

PS - after about a year on apap my average level has settled at about 9.0!! SO if I had stuck with the cpap machine I would have been significantly under treated all this time, and not due for a review until August!! Apap has given me back my life in a way that cpap would not have done.

[chdurie2]

sir c:

sounds like a reasonable theory.

do you know how to reset pressure on a sullivan v elite? i may just have to break down and see if a manual is on ebay, much as i hate the principle of having to pay for one.

also, my sullivan v elite adjusts up to 8--so if i need less, it supposedly gives me that. it just doesn't go higher than that. are all cpaps like that? just a question i've been meaning to ask for a long time.

thanks.

caroline

[sir_cumference]

the resmed S7s & 8s and as far as I know all CPAPs adjust from 4 to 20! You can adjust the pressure on an S8 through the clinitians menu which I can tell you how to find if you need. I don't know about other machines but I'm sure you can find info from others on this site.

if you need the info on the menu, let me know.

sir_c

[sleepylady]

Caroline,

You may want to start a new thread and ask if anyone here has a manual they'd be willing to share with you. I was lucky enough to get a P&B 420e manual from a fellow hosehead on this site.

Melinda

[Snoozin' Bluezzz]

My first $.02 for awhile -

I experience some of the same things and I can not say all my sleeping/breathing problems are attributable solely to OSA. I have struggled with weight all my life and in the run-up to starting therapy have become quite heavy. I suffer from GERD, a cervical herniation that flares up, age/weight related arthritis, mild allergies, slightly deviated septum, constricted turbinates, a chronic viral condition, yadayadayadayada. All of these can impact my physical well being when I am trying to sleep and it is sometimes difficult to ascertain which thing I am struggling with, when. I just bought a new bed which necessitated making it level for awhile (it had been raised at the head to relieve GERD symptoms). During that time, even though I did not feel it consciously, the GERD started to give me a sore throat and create a cough which I am sure disrupted my sleep (I have since raised the head back up). I can also have various other physical and emotional stressors in my life related to work, family, friends and pure mood struggles that can disrupt my sleep efforts.

What I am saying is that there can be an entire complex set of things that impact our sleep/breathing therapy and it may not, or may, be your xPAP therapy alone that is causing your regression. All these things need to be managed in one form or another.