HyperJMA's OSA Journey

[hyperjma]

Hi Everyone!
Definitely a newbie here! I looked around at the web-posts, but Im feeling a little overwhelmed with all this information. I don't know where to start.....
Here's a brief description of my history -
Without knowing it, for oh *about* the past 8 years, I have been struggling with sleep apnea. I have a variety of health problems, and now that I know about sleep apnea I am sure the apnea isn't helping those problems! On a yearly visit to my immunologist/allergist I mentioned this cough I had had for a few months, and he asked my husband a few questions and basically diagnosed me with sleep apnea right there in the patient room. Then there was a long round of sleep-studies, etc etc. result - they believe I have severe sleep apnea with oxygen drops.
Right now, I have the respirotronics with humidifier. They originally put me on a value of 12, but they are raising it because I have been taking it off in the middle of the night. the gave me an auto-machine for a month, and the auto machien suggested putting it on 20. Isnt that a bit too high? my gosh!
Anywho - I have come across another ANNOYING problem that I cant seem to fix. The mask that I have is a full face mask, and it leaks SO BAD. It doesnt leak - the seal between the mask and my face - but it leaks within the mask! Like the plastic piece that sits on my face is separating from the hard plastic mask part. It leaks around my chin area.
I have stressed out about this so much, even considered stopping the cpap use because it is getting me so frustrated! --- my loving husband last night searched around online, hoping to help me the only way he could and came across your website. Can anyone suggest any help? Also, I am looking to maybe get a DIFFERENT cpap machine. (as you can probably predict, my husband and I are techies and would love to be able to read the data on my card, and etc etc..)
Thanks!
Jessica
- and husband Bryan -

[Hawthorne]

The mask - it sounds like the silicone seal is not inserted into the frame correctly or it may be the blue foam cushion that is not inserted correctly.

The clear (opaque) silicone seal has it's own track (slot) that it fits into. That's the outer track or slot. The blue foam seal fits into its own track as well (the inner track).

They both MUST be in, all the way around and all the way in the track, or the mask will leak like crazy. ALso, don't make the headgear too tight. That will also cause leaks. Finding the right tightness for the headgear is trial and error.

As for your machine, it is the M Series Plus according to your profile. If you want data that you can analyze and monitor your own therapy, you need the M Series PRO or the M Series AUTO in Respironics machines. The AUTO is better because it can also be run in cpap mode.

With the PRO and the AUTO, you can purchase software and a card reader(cpap.com) to get detailed data about what it happening while you sleep. It will tell you if and how many Apneas, Hypopneas and Flow Limtations you may have during the night as well as your leak rate which is also important for optimim cpap therapy.

With the Plus all the data you will get (even though there may be a Smart card in it) is compliance- how often and how long you used the machine.

You may be able to trade off for, at least a PRO, but if you can ge them to trade for an AUTO that would be even better. You MAY need a new prescription to get an AUTO.

Hope this helps for a start!

[fuzzy96]

as hawthorn was stating about the seal -- sounds like you got leaks to take care of . leaks on an auto will make it try to "find " a pressure amd not sure where you got the 20 from (hope it's not your doc) but it could be the auto chasing the leak.

you may want to try a chin strap. search the topics you'll find where members have made thier own or our sponsor sells them too .

to better help us help you please put your equipment in text form

[hyperjma]

I just had hubbie check, and we have updated my machine identity. He says the only information he can get off the machine is "Remstar Pro M series". but it has a humidifier attached with heat and also it has a ramp possibility and it has a smart card in the back of it.

I will call my DME to see what type of information is on the smart card. it might be worth buying one.

Also, yes, they got the measurement of 20 off of the auto machine. I called the sleep specialist at my allergist and I asked them to double check it, because I said it leaked ALOT!!!!!!!, and they said that the auto machine was supposed to accomodate leaks, and that if i preferred, they would only up the pressure a little bit. The person I talked to seemed a little condescending when I expressed concern about it being so high. *jerk*

[OutaSync]

Did you get the instructions with that mask? If it is assembled properly it shouldn't leak within the mask. That foam piece needs to be pushed in all the way around. If they didn't give you the instructins, take it back and get a new one with the instructions. You have to get the leaks stopped before the numbers will mean anything. That being said, there is an exhaust vent where the air is supposed to be coming out.

Please don't stop using CPAP because your mask is faulty. If you can't get the leaks fixed, get another one. Don't let them change your pressure based on large leaks.

Bev

[Quinda]

20 cm isn't all that bad ... that's the pressure I use, and to tell you the truth ... it feels very soothing now ...

[Hawthorne]

So glad to hear that it a PRO you have rather than the PLUS! That means it is data capable and, with the software and reader, you can get all that data I mentioned in my first post!

A pressure of 20 cm is very high - in fact as high as that machine goes. That pressure, however, may not be accurate. Sleep studies are just one night and a very strange night at that, all wired up etc. so it could well be off some.

It may be that you need a Bipap but that is down the road a little, if at all. You need to make sure that mask is put together correctly first and get used to sleeping with air blowing down your airway.

Some people adapt quickly but for others it may take some time. Don't be discouraged!

Keep coming here and asking questions. There are lots of people here who are successfully using cpap and feeling so much better because of it.

They are able and willing to help you get started and to keep at it until you feel the benefits!

Good luck!!

[builta]

Hi,

A good mask and seal bath may help.

You could try giving the mask a good bath in soapy water (Just do not put the blueish gray foam in the bath). You see a little bit of oil or lotion in the attachment tracks of the hard plastic mask or the silicon (the translucent rubbery seal) will cause the seal to separate from the mask during therapy and presto--big leaks.

[JoyD.]

Welcome Jessica (and Bryan)!

So glad you found us!! Be sure to read the "New Users" section at the top of the page.

OutaSync wrote:
Did you get the instructions with that mask? If it is assembled properly it shouldn't leak within the mask. That foam piece needs to be pushed in all the way around. If they didn't give you the instructins, take it back and get a new one with the instructions. You have to get the leaks stopped before the numbers will mean anything. That being said, there is an exhaust vent where the air is supposed to be coming out.

Amen to that advice . . . #1 is getting leaks stopped. But, be aware that there is an EXHAUST VENT on every mask . . . something that made me panic thinking I had a large leak somewhere! It was only the exhaust vent that carried away my CO2 - it can be quite strong depending on your pressure. An instruction book comes with every mask . . . so you need to obtain that in order to learn everything about your mask and how to adjust it. Also, use the forum's Search Engine to read older posts about the same mask and how to fix leaks.

If you are currently using an AUTO on loan from the DME for a month, be aware that an auto works within the RANGE that it is set. You will notice on many of the forum "signatures", the person lists his/her current AUTO SETTING, for example, 14-20. Is that where you are getting your "20" figure? In the example above, it will START out at 14 pressure, then automatically increase gradually to take care of any flow rate changes (beginning of obstruction) before they become apneas or hypopneas. Then return to a lower pressure if the higher pressure is no longer needed. When you have mask leaks, the pressure takes off to compensate for the leak, and in "run-away mode" can hit high pressures which create more leaks. Mask leaks create a vicious cycle making you crazy & rendering your data inaccurate. So, #1 fix needs to be leaks as OutaSync said.

Good luck! It is very frustrating when you start out with so many new things to learn. Hang in there, and take it step by step. It WILL get better

Joy

[hyperjma]

Hey everyone! Thanks for your help and support! Today, I decided to take a more pro-active role in my CPAP therapy, so I called the DME I work with and started to talk to them. The guy I talked to suggested a new face mask type and let me know that they can probably finagle the insurance into paying for a new mask in May. So, I decided to call my allergist and talk to the sleep technician there. And boy am I glad I did!!!!!! He sat on the phone and talked to me for at least an hour. I explained that I wanted to be more involved in the CPAP therapy, and had a lot of concerns. He took a look at the study from when I borrowed the APAP and said that I only really had a leak for about 10 min / night, and that the AHI was still 20, even with treatment. He agreed that it would be suggested to increase my CPAP level to 17, but when I explained my hesistance (the mask leaked alot, and even on the level of 12, I have to have the cflex up to 3 in order to be able to exhale) and described how I felt, he decided to change the prescription to a BiLevel CPAP machine. He also suggested that I check out the Quattro face mask. I feel so much better after talking to him! Finally, someone is willing to listen to me and my concerns! Since I expressed so much interest in researching the CPAP machines, he said to check out the VPAP-S from respironics and the Auto-pap something or another from resmed. Has anyone used these machines before? Do you have suggestions or comments? Also, what have you heard about the Quattro?

Thanks everyone for your help! I can't wait to get the machine, try it out, and see how much better I feel!

[rested gal]

HyperJMA, here's a link to names of machines that provide useful data (AHI and leak info) and those that don't:

viewtopic.php?p=307168#p307168

[Brimstar]

Hi all,

Jessica's husband Bryan checking in. I carefully seat everything almost every night before she puts the mask on. Still getting leaks on the lower edge of the mask. The silicone seal portion ends up popping out in the night. Nights when it doesn't it gets close. Not sure what's going on. She uses an astringent to clean her face each night and the silicone is cleaned regularly as well.

[hyperjma]

W-O-W! boy, has a lot changed within just a few weeks! I called the manager of the sleep lab for my specialist and let him know what problems I was having, and he gave me the info on a few new machines to try, and changed me to an Auto-BiPap. After 3 frustrating phone calls with the current DME, I called back to the sleep lab who gave me a reference for a new DME. I simply called them, let them know that I wanted to change and that I wanted to be *proactive* and *involved* in my therapy and the Respiratory Nurse was totally understanding and compliant with my requests! I made an apt for last Friday, returned the old machine and then went and got a new machine! I changed to the ResMed VPap Auto 25, with the Quatro facemask. The respiratory nurse also had some amazing suggestions and home-made tips on how to make the therapy go better and smoother. I have never felt so rested!!!!!!!!!!! The new mask doesnt leak at all, and I feel so supported from the respiratory nurse, she taught me EVERYTHING about the new machine.
So, I am in the middle of week one with the new machine and mask AND im hoping things improve. Also, can anyone suggest a support-forum for diabetes? I was tested with a fasting blood sugar of 75; but I have had 4 episodes in the last year where i felt faint, started shaking, and my pulse was over 100 and I had to leave work. So my PCP has prescribed me a blood glucose monitor to use on a daily basis and start to get some information about the cycles of my blood sugar. I would love to find a forum as supportive and proactive as this one!

(oh - thanks Dear Husband for joining. the people here are so awesome! *** plus, being a spouse of a CPapper, you can also learn some new tricks and connect on here also)