High CPAP Pressure

[Phatsalmon]

Please can someone help end the misery. I have bee diagnosed after 6 studies with severe sleep apnea. Yesterday i got my machine and mask. The machine is a Respironics BiPAP auto SV. The mask is a resmed full face mask. My problem is the pressure setting has been prescribed at 28 cm. The system does have a ramp feature but in about twenty minutes my cheeks are ballooning, and my ear drums are exploding from the inside. The mask is squeaking no matter how tight I pull the straps. The bridge of my nose is crushed and my chin is sore. What can I do?. I would rather have the disease than have to tolerate these procedures. I do not feel that bad. Please any advise would help

[Breathe Jimbo]

Why did it take 6 studies? Such a severe case should be obvious the first time.

[Phatsalmon]

They could not titrate. could not find the right pressure. Finally they did the BiPAP thingy. The doctor is frustrated. I took three weeks to get someone to supply the device due to the high pressure. Also during the last studies I developed what they call "centrals". I believe that this was caused by the high pressures as they did not exist on previous studies. I have also used two sleep centers due to being relocated due to the "job".

[DavidCarolina]

Im at 13 pressure after 2 sleep studies and requested to go a little higher---partly because im one of those positional sleepers who likes to sleep on his back but obviously cannot now, and who cant sleep on my stomach because it hurts my back.

My doctor warned me that increasing pressure can cause centrals which scared me off trying to increase the pressure. Even so, I recently met a guy
who's been at pressure 18 for ten years with optimal results. He's about sixty i'd say.

Im very sorry youre struggling with this. I know firsthand how panicky you can get when youre trying to get things right----we're talking about your
central nervous system here and your life's well-being is at stake. We're ALL in a lifelong process of learning here. We all have to keep making
adjustments. There is no such thing as "arriving". We keep learning and adjusting and the goal is to find optimal but not perfect solutions.

All I can offer is a few comments:

1. Keep doing extensive research on forums to find others with identical situations to yours and compare notes.

2. Get down to your optimal weight. Atkins diet, liquid diet, weight watchers, whatever works for you. Walking is the best excercise, but unfortunately you cannot burn enough calories to lose a lot of weight unless you walk a couple hours a day ( i walk an hour a day, six days a week) so its mostly diet
that determines your weight.

3. Dont eat after 6 pm or so if possible. Can make a big difference.

4. Determine if you can benefit by learning the correct position to sleep in and whether elevating your head slightly helps.

5. If you dont like your doctor, I'd recommend an ENT or oral surgeon who specializes in surgery for a consultation. These people are found in the larger cities. I recently met with one myself. Find out your options. It may be that using a dental appliance can even help you. If you have great insurance you might consider surgery as a bold option.

6. Do some research on oxygen therapy and hyperbaric chambers. Some of the cpaps have 02, only a skilled doctor can know if it can help you.

7. A deeper reservoir mask might possibly help you. The shallower ones seem to leak more. There is a new design out that contours under your chin to hold on better. Research it out.

8. PM me if I can be of any encouragement. We need each other when we're struggling at our worst. I know everyone else on here will help any way they can.

9. Im only speculating, but with at your optimal weight, and your correct positional sleep position, it would be better to be at a lower pressure, than to give cpap up altogether. You may "feel" ok, but the numbers dont lie. You can damage your central nervous system further by bailing out now.

[MidnightOwl]

1. Try loosening your mask. It seems backwards but it can help.

2. Call your DME (The company that gave you the CPAP). If that doesn't help call the doctors office. The are unlikely to know much about adjusting the mask but they may have leverage with the DME.

When you read answers keep in mind that most people here don't use that much pressure (including me) but there are some.

[Pugsy]

There are a handful of other forum members using the same type of machine as you are trying to use.
I suggest you modify your subject line to add help with ASV to get their attention. They understand your machine and the pressure needs.

Please register here at the forum and then add your equipment to your profile like you can see I have added my equipment at the bottom of this post.
wiki/index.php/Registering_Equipment_in_User_Profile

And here a group of ASV users are talking about their experiences. You might read it. Also look for posts from member JohnBFisher. He has to use some pretty high pressures also.

viewtopic.php?t=65791

[pj2448]

DavidCarolina's reply, paragraphs 2,3,9.

[Julie]

You need to look at other masks and/or sizes - over-tightening a mask can in fact cause tiny leaks where there weren't any otherwise due to distortion, and they should be comfortable, or you will end up with marks and headaches and who knows what else, plus overtightening causes the 'cushion' to flatten and not do its job either. When you first put on a mask and lie down, you can (and usually will want to) adjust it in tiny ways, but once in place, you should lift it slightly so that the air fills the cushion (soft edge that touches you) to seal properly.

[jamiswolf]

Phatsalmon,
Apparently you have what's called complex sleep apnea. It's often characterized by central (clear airway apneas) being triggered by your xpap therapy. You probably have some centrals normally too would be my guess.

You could get copies of your sleep studies. There are some talented people here to help you sort it out.

Do you sleep on your back? That causes many people to require more pressure.

Your machine is capable of operating as a bilevel (BiPap) unit until you have clear airway events and then the machine will bump up pressure to trigger a breath. It should only need those extreme pressures while doing that. I somehow think your machine isn't set up right.

Was one of your sleep studies a specific ASV titration session?

I recommend you ask the peeps over on the ASV thread. They are kind and helpful, but they will demand more info from you.

viewtopic.php?f=1&t=65791&st=0&sk=t&sd= ... asv+thread

Good luck,
Jamis

[Phatsalmon]

Thanks all. Firstly I zm new to posting issues such as this. I am not overweight and I do not snore. It has bee four long years dealing with being tired and a very very stressful job before the doctors found this issue. I live in Nevada now and I am hiking three time a week in the Mt Charleston area. These hike often last three hours. Just me and my dog.

At the same time as this I have bee diagnosed with allergies. I seems as though I am allergic to everything that was on the skin tests. I also have no symptoms but I am getting the shots anyways at the request of my Sleep Specialist.

Can I just start the therapy at a much lesser pressure till I get used to it? And what about the sore ears? That pain is with me all the following day.

Thanks for the help and God Bless you all for answering my stupid question

[Pugsy]

With painful ears... please discuss this with your doctor. I can see where high pressures would take some time for the body to adjust to and since the ears are connected to the airway via some very tiny passages there could be some pressure stabilization issues. Normally no worse than altitude changes like in an airplane.

While a lower pressure is better than no pressure (as in working up to your pressure) it obviously is not ideal but may need to be done in your situation. This is something that you need to have your doctor involved on. The ASV machine simply has many more intricate settings that interact within themselves. Until you have a full understand of all those settings and even then really...keep your doctor involved. What you have is not run of the mill plain jane obstructive apnea and needs special treatment with your very special machine.

So talk with doctor and if an RT is available at the DME that person also.