Feeling Depressed and like a failure

[robysue]

I know, its ONLY 5 nights with the machine and someone somewhere on earth will make a comment of "stop whining" but here goes....

I'm four months into this adventure and I still come here to whine ... and rant ... and now occasionally post about the rare good stuff.

It's part of what the forum is for.

I have been so tired since starting this adventure. I was tired before, but feel MORE tired using the cpap. I dread going to bed and stay up as long as I can.

This struck a familiar chord. Here's my post at about the same point in my adventure in CPAP-land: Dreading bedtime on night 4 of CPAP

My particular issues were (and are) different than yours, but the feelings of failure and oppression and worry that it will never get better are things that we have in common. I thing that lots of new CPAPers go through it. There is nothing natural about learning to sleep with a hose attached to your face. There can be a steep learning curve. But with time, it gets better.

So when you need to whine---feel free to whine here: As you can tell, you'll get plenty of people posting friendly replies, some with kind suggestions. Some of those suggestions will be useful to you---try them out and see if they work. Some you'll be able to tell just won't work for you for one reason or another---remember they were offered in kindness.

And don't beat up on yourself about taking the mask off in your sleep. If you wake up without it on, and you're NOT done sleeping for the night (or day), calmly put it back on and try to get back to sleep without worrying about how or why you took it off in your sleep.

And try to keep an eye on the insomnia: Don't let it get out of control, or you'll have another monster in your bedroom to deal with. Reigning in my insomnia monster is proving to be as rich of a source of posts for me---and as frustrating of a two steps forward, one step backwards process---as adjusting xPAP has been itself.

[FoxNewsFan]

Kahfree,

An analogy. The perfect therapy is on the top of Mt Everest. You have started the climb and have gotten about 100' up the mountain. It's a long, hard slog but the goal is worth it. Some people have been on CPAP for years and are still making improvements.

You have gotten a lot of good advice so far. Let me add my $.02 You can't achieve good results until you solve your leak problems. I use the same mask and have had a lot of success with PadACheek's Anti-leak strap.

http://www.padacheek.com/PAC_AntiLeak_Strap.html

The strap is a little bit of a pain in the neck because it's one more thing you have to do when you put on the mask and sometimes the strap works it's way over my ears, etc., etc. but, in the morning, when you wake up after a wonderful night's sleep, IT'S ALL WORTH IT.

Keep at it,

Ed

[Hueffenhardt]

I did not want to leave a loose end. Rooster, I looked into what the ICON Premo is reporting under leak rate, and although I did not find anything definitive, I do think it is reporting straight liters per minute. There is no place in the user menu or clinician menu to tell the machine what kind of mask you have. So leak rate under 24 l/minute is ok, anything over is bad.

[Kahfree]

I did not want to leave a loose end. Rooster, I looked into what the ICON Premo is reporting under leak rate, and although I did not find anything definitive, I do think it is reporting straight liters per minute. There is no place in the user menu or clinician menu to tell the machine what kind of mask you have. So leak rate under 24 l/minute is ok, anything over is bad.

So, that would mean that my leak rate last night of 32 is bad? I had it tightened a lot, not sure I can tighten it more without discomfort. I will look into those cheek pads that another poster mentioned.

[FoxNewsFan]

I did not want to leave a loose end. Rooster, I looked into what the ICON Premo is reporting under leak rate, and although I did not find anything definitive, I do think it is reporting straight liters per minute. There is no place in the user menu or clinician menu to tell the machine what kind of mask you have. So leak rate under 24 l/minute is ok, anything over is bad.

So, that would mean that my leak rate last night of 32 is bad? I had it tightened a lot, not sure I can tighten it more without discomfort. I will look into those cheek pads that another poster mentioned.

Not cheek pads. Anti-leak strap.

[roster]

I did not want to leave a loose end. Rooster, I looked into what the ICON Premo is reporting under leak rate, and although I did not find anything definitive, I do think it is reporting straight liters per minute. There is no place in the user menu or clinician menu to tell the machine what kind of mask you have. So leak rate under 24 l/minute is ok, anything over is bad.

Thanks H.

I did not want to leave a loose end. Rooster, I looked into what the ICON Premo is reporting under leak rate, and although I did not find anything definitive, I do think it is reporting straight liters per minute. There is no place in the user menu or clinician menu to tell the machine what kind of mask you have. So leak rate under 24 l/minute is ok, anything over is bad.

So, that would mean that my leak rate last night of 32 is bad? I had it tightened a lot, not sure I can tighten it more without discomfort. I will look into those cheek pads that another poster mentioned.

A leak of 32 is likely fine. We need to know your pressure. What is your pressure setting?

Remember the mask exhausts through the exhaust ports on the mask and this is measured as part of the leak so you do not want a leak of zero. The leak through the exhaust ports (vents) is called design leak or vent flow rate.

You can look at the pressure flow curve in this PDF and see that the higher the pressure the more air will flow through the vent - http://www.resmed.com/us/assets/documen ... er_eng.pdf

You said your leak was 32 last night. Please tell us your pressure setting and your AHI for last night. We also need to know if you had any central apneas in your sleep study.

[Kahfree]

You said your leak was 32 last night. Please tell us your pressure setting and your AHI for last night. We also need to know if you had any central apneas in your sleep study.

My pressure is set, and it does not change. It is set to 9.0 or whatever that means. I was told at the doctors Monday that 90% of the time it took a pressure of 9 to keep my airway open, so she set the machine to that. The machine that determined that during my week long test at home showed those results.

Oops...The AHI was 5.2 and I showed now central apneas during my sleep study...but then again, I only slept for 117 minutes and that was at the end of the study. Not sure if any would have shown up if I had been sleeping earlier.

[roster]

You said your leak was 32 last night. Please tell us your pressure setting and your AHI for last night. We also need to know if you had any central apneas in your sleep study.

My pressure is set, and it does not change. It is set to 9.0 or whatever that means. I was told at the doctors Monday that 90% of the time it took a pressure of 9 to keep my airway open, so she set the machine to that. The machine that determined that during my week long test at home showed those results.

Oops...The AHI was 5.2 and I showed now central apneas during my sleep study...but then again, I only slept for 117 minutes and that was at the end of the study. Not sure if any would have shown up if I had been sleeping earlier.

CPAP pressure is measured in CM of H2O, so typically we would say your pressure is 9.0 cm straight CPAP (straight means doesn't adjust). In the table I provided the link for it shows at a pressure of 9.0 the leak for the Quattro mask should be just above 30. So your leak last night of 32 is very good and was not too much leak to negatively affect your therapy.

If you AHI was 5.2 last night that means you averaged 5.2 apneas and/or hypopneas per hour. That is good for a newbie as the medical profession considers under 5.0 to be a success. I like to keep my AHI around 2.0 or lower but it may take a little tweaking to get you there.

I recommend you keep a record everyday of these statistics for each night: AHI and leak. I also consider it a big advantage to have the software so you can see what is happening minute by minute. Unfortunately I am not familiar with your machine but you can look at what Hueffenhardt posted above about the software or start a new discussion as I recommended earlier in this thread.

From your description you may have the mask adjusted too tightly for comfort. The Quattro can be adjusted lightly and still achieve a good leak rate. Maybe you can ask for some help in the forum on readjusting it. I am a little hesitant to say that because you have achieved such a good leak rate. However if the mask is so uncomfortable that it is interferring with your sleep it needs to be adjusted.

I believe you said above that you are sleeping on your back with head elevated. What position(s) did you sleep in before you started CPAP?

CPAP may certainly seem like a lot to deal with now, but as your body and brain start to heal it will become easier to cope with.

[Kahfree]

Hi Rooster,

Thank you for so much information. I guess what ever I did last night, I will repeat each night since it worked. The mask is not too tight, I liked where it was last night. I was saying if the number 32 is too high, then I cant imagine tightening it more as that would be uncomfortable.
The machine I am using is new to the market, so I suspect not many people have it yet? I heard from someone that they do not sell the software in the USA? My question is why? I need to be proactive in my health care and feel it is my right to have the software to track accurate records. I plan on talking to the doctor about it. I feel uncomfortable talking to the DME. They are not my doctors, and maybe I am wrong, but they just "sell equipment" and are not in the position to make decisions for me, right?

As for sleeping, you asked what my position was. I always fall asleep in a semi reclining position in bed, and eventually find my way to my left side. I also turn left and right a lot during the night. I think its the hose I am getting caught up in since I start on my left side and the cpap is on the night stand to my right. So, when I flip, I think it catches and wakes me. I saw a photo of a person who had it hanging over the back of the bed. I may try this tonight. Also, if I can secure the hose to the bridge piece it would aim up and not cross in front of me on my chest, this way I don't get tangled.

One quick question. You said I averaged 5.2 per hour. So the AHI that is shown is not per the AMOUNT of hours I slept? That would mean that I averaged 35.2 per hour the night before? Yikes, that's not good. So, the CPAP does not eliminate the Apneas totally, they just reduce them to a healthy number?

Thank you Rooster...you have been very helpful.
Kelly

[rested gal]

Kelly's better night - hopefully one of many to come.

So Excited with last night! - topic started by Kahfree - Jan 23, 2011
viewtopic.php?p=559262#p559262

[roster]

One quick question. You said I averaged 5.2 per hour. So the AHI that is shown is not per the AMOUNT of hours I slept? That would mean that I averaged 35.2 per hour the night before? Yikes, that's not good. So, the CPAP does not eliminate the Apneas totally, they just reduce them to a healthy number?

Thank you Rooster...you have been very helpful.
Kelly

Yes, if you slept seven hours and had, for instance an AHI of 30, it would mean you had a combination of 210 apneas and hypopneas. That is about what I was doing when I first started with CPAP - the lab and doctor did not prescribe optimal pressure settings and like you say it was Yikes! for me. That is why I am insistent on the software. Until you get the software it is also why you need to keep the records to see if you are achieving a low AHI every night or having some bad nights.

I prefer side or tummy sleeping positions as compared to backsleeping. On the back gravity is acting directly on the tongue and soft palate to pull them into the airway and cause obstructions.

Read here for awhile and you will find plenty of horror stories about DMEs - that industry does not generally do a good job for patients. Actually one sleep doctor who is also a CPAPer has stated the whole sleep industry is a wreck.

Kahfree: I need to be proactive in my health care and feel it is my right to have the software to track accurate records. I plan on talking to the doctor about it.

By all means ask your doctor about it and hope for the best. Some doctors like for their patients to take control and use the software, but many want the patient to do exactly as told, shut up, pay the bill, and get out of the office in ten minutes. If this happens to you, remember it is not final and you can still take control of your therapy.

So taking charge of your therapy is very important. That is the way to drive your respiratory events (apneas, hypopneas, snores, respiratory arousals) down to a very low level.

Ciao.

[roster]

Here is a blurb from the F&P website but I do not know how a patient can obtain the software.

You can easily track your therapy effectiveness with InfoSmart and the SmartStick. InfoSmart software offers detailed reporting including data on compliance, AHI, leak and CPAP pressure. Your SmartStick can be connected directly to a USB drive on your computer to easily transfer data from your CPAP to Fisher and Paykel InfoSmart Software.

[Kahfree]

Here is a blurb from the F&P website but I do not know how a patient can obtain the software.

You can easily track your therapy effectiveness with InfoSmart and the SmartStick. InfoSmart software offers detailed reporting including data on compliance, AHI, leak and CPAP pressure. Your SmartStick can be connected directly to a USB drive on your computer to easily transfer data from your CPAP to Fisher and Paykel InfoSmart Software.

Yes, I saw that on the site. I wrote to the company but have not heard from them in regards to purchasing it. On their website, if you watch the video of the man unpacking his icon, they show him taking a cd from the package and stating it is the software. I suspect my DME took the cd before giving me the entire machine and to me, this is not right. I am paying for it, so give me what I paid for. I am going to insist on it, and in the meantime, have my son create a program using an excel chart to help me input information.

Going to dinner now. Thank you.

Kelly