Newbie here, from Switzerland

[VeeBeeMee]

Hi all!
I have recently stepped into this world, of cpap, masks and all the paraphernalia . The stories are heartening but also a bit scary. It's been exactly one week now.
These are my immediate needs:
1. I wake up several times a night and can't sleep (though this isn't exactly new)
2. Dry, parched mouth and throat when I wake up. Is that an indication of leaking? How do I know if I am leaking?
3. I literally need over an hour to wake up in the morning. I am sooooo sleepy, half asleep and can't get myself to wake up. In the past I used to wake up early without problems and get right to the task of getting ready for work.
4. I have no idea if I have the right machine, mask. I didn't have choices. It was what I was given.
5. I don't know what questions to ask. I don't even know what I don't know.... Reading what I can. This forum helps.
6. I am going to be in the U.S. Later this month. Does anyone have a doc to recommend in southern CA?

I guess the good news is that I will feel better. When, exactly, will that happen?

Trying to take in stride... But, barely getting out of denial about all this,
Thanks again!
Vee

[DocWils]

If you are in Switzerland, you are getting your device from the Lungen Liga - while they are still in possession of several ResMed S9 devices, and want to get rid of them (they DO have to buy them from ResMed at extortionate prices), since you are on a rental system, go back and tell them to not give you outdated stock and provide you with either a ReMed A10 For Her or a System One from Philips Respironics. Both are new stock and they are being very cheap and cheeky by giving you are old machine. The S9 is an excellent machine, in fact I just used one for two weeks while on a teaching trip, but they have a lot of cheek foisting it on you when they have had newer devices for nearly a year now.

Your body needs time to adjust to the treatment, and it can take months - your brain has to unlearn all the bad patterns of sleep that it has had over the last years. Once that is done, you will no longer feel so wrecked in the morning.

Do not buy a machine in the US, even if they are cheaper - you are on a rental system right now that is paid for by your insurance, and anything that goes wrong with the machine will be immediately dealt with by the LL, and you get half yearly check ups, mask and hose replacements, etc under this scheme. Should you buy your machine in the US, you will be stuck if anything goes wrong, and you entire insurance policy in Switzerland will be voided for any further help in that way, raising your costs considerably for replacement parts and for your check-ups. Further, there is nothing a sleep doc in the US can do for you that you cannot get from the docs at the sleep labs in the Unispital (if you are in Zurich) or the various hospitals throughout Switzerland if you are not in Zurich. All problems with mask fits etc should be brought to the Lungen Liga. It is their job in this to guide you. You have paid them to do so.

Both your machine and any software you may use (Sleepyhead is good, ResMed provides their own software, it should have been in the box with your machine, unless you are on a hospital loaner) will show you if you have large leaks, and that should solve that, but probably it is lack of humidification - you would need to adjust your humidity levels for that. If they gave you a machine without a humidifier, which is unlikely, unless, again, it is a test machine from the sleep lab, then get them to give you one.

[PaytonA]

The dry mouth is probably from breathing or leaking air through your mouth. If it is not too bad increasing the humidity will help but the solution is to quit breathing/leaking through your mouth. A chin strap might help. I would try adjusting the humidification upwards first, as DocWils says. If that does not solve the problem, I would try a chin strap - probably available from Lungen Liga. If that does not solve it, you may want to consider a full face mask. Work with Lungen Liga on the problem as much as possible.

Best Regards,

PaytonA

[VeeBeeMee]

If you are in Switzerland, you are getting your device from the Lungen Liga - while they are still in possession of several ResMed S9 devices, and want to get rid of them (they DO have to buy them from ResMed at extortionate prices), since you are on a rental system, go back and tell them to not give you outdated stock and provide you with either a ReMed A10 For Her or a System One from Philips Respironics. Both are new stock and they are being very cheap and cheeky by giving you are old machine. The S9 is an excellent machine, in fact I just used one for two weeks while on a teaching trip, but they have a lot of cheek foisting it on you when they have had newer devices for nearly a year now.

Your body needs time to adjust to the treatment, and it can take months - your brain has to unlearn all the bad patterns of sleep that it has had over the last years. Once that is done, you will no longer feel so wrecked in the morning.

Do not buy a machine in the US, even if they are cheaper - you are on a rental system right now that is paid for by your insurance, and anything that goes wrong with the machine will be immediately dealt with by the LL, and you get half yearly check ups, mask and hose replacements, etc under this scheme. Should you buy your machine in the US, you will be stuck if anything goes wrong, and you entire insurance policy in Switzerland will be voided for any further help in that way, raising your costs considerably for replacement parts and for your check-ups. Further, there is nothing a sleep doc in the US can do for you that you cannot get from the docs at the sleep labs in the Unispital (if you are in Zurich) or the various hospitals throughout Switzerland if you are not in Zurich. All problems with mask fits etc should be brought to the Lungen Liga. It is their job in this to guide you. You have paid them to do so.

Both your machine and any software you may use (Sleepyhead is good, ResMed provides their own software, it should have been in the box with your machine, unless you are on a hospital loaner) will show you if you have large leaks, and that should solve that, but probably it is lack of humidification - you would need to adjust your humidity levels for that. If they gave you a machine without a humidifier, which is unlikely, unless, again, it is a test machine from the sleep lab, then get them to give you one.

[VeeBeeMee]

Thanks so much. This is incredibly helpful. I live in Geneva and going to CENAS. There is not an available doctor. Very odd. I have to goto my pulmonary doc, who treats me for asthma. The technician could not give me an S10 (the next model) but assured me she would try to get it for me next week for my next appointment. I was not given a humidifier last week. so, needless to say my nasal passage way are totally inflamed. I have been sneazing, dealing with runny nose and congestion. I will try the S9 humidifier tonight.

fascintating about the brain. Do you know where i can get any literature on CPAP, breathing and brain?

about software, the tech feels patients should not be permitted to read the results from their data. She feels it is the job of the tech to know and interpret. She said if there were a leak, i would know and come in for a check. I insisted on wanting to be empowered with that informaation. Alas, she said shewouldnt even know how to give me the software. Will ResMed share software with me? How did you get the software?

Again, i cant thank you enogh for your helpful hints!

Best,
veronica

[VeeBeeMee]

Thanks a lot. What isLungen Liga?There did not seem to be such an intermediary. I hadnt thought of a chin strap, but got a nose-mouth mask which i hope will help. i will see the tech again in a week and ask for a chin strap.

Thanks again!
Vee

[justMongo]

about software, the tech feels patients should not be permitted to read the results from their data. She feels it is the job of the tech to know and interpret.
Best,
veronica

Welcome to apneaboard.
The tech is protecting what they perceive to be their territory.
I do not know how well trained they are in Switzerland; in the US some are as dumb as a rock.

[trish6hundred]

Hi VeeBeeMee,
WELCOME! to the forum.!
You might try a chinstrap and see if that helps you and also you might turn your humidifier up a notch. Good luck to you and hang in there for more responses to your post.

[PaytonA]

The nose-mouth mask ( what we call a Full Face Mask or what we may call a FFM) will help with the CPAP machine's operation but if you are still mouth breathing/leaking you may still suffer from dry mouth.

I tried to use a nasal mask but could not eliminate the mouth leaking and dry mouth even with a chin strap and plenty of humidity. I finally went to a FFM and controlled the leakage out of the system so the CPAP was happy but I was still getting dry mouth. I increased the humidity and trained myself to close my mouth off from my airway using my tongue. I do not get a perfect block with my tongue but between that and humidification, I have controlled the dry mouth. One other thing that I do relative to dry mouth is to use an oral rinse that is supposed to help avoid dry mouth. What I use is called Biotene for Dry Mouth. There are others. I just do not know the names.

Sorry about the Lungen Liga. I just thought, based on what DocWils said, that was the organization supplying your CPAP machine and supplies. If CENAS is your supplier, then just substitute CENAS anywhere I have written Lungen Liga.

Best Regards,

PaytonA

[VeeBeeMee]

Yes, It is very annoying about the software issue. How many studies do they need to show that patients are far more compliant and enjoy better health outcomes if they are empowered with knowledge and control their own health care needs. She was also a bit patronizing as she felt that i would get too anxious looking at my data and should leave it up to her. Anyway, i cant afford to alienate her. She is good in other ways. but i want to get my hands on that software. Any ideas?

will try my humidier tonight... I wonder why she didnt anticipate that i would have problems without one. sigh.

At least i have this board!!