Replies to This Discussion

Permalink Reply by Duane McDade on September 25, 2009 at 10:12am

Have you and your Doctor talked about trying Bi-Level or Bi-PAP? This is common for patients who do not tolerate CPAP.

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Permalink Reply by Christine Myers on September 25, 2009 at 10:19am

No that never come up, thanks for the tip. I get the sense the doctor is insistent that this should work which makes me terrible because it hasn't. What it Bi-PAP.

Duane McDade said:

Have you and your Doctor talked about trying Bi-Level or Bi-PAP? This is common for patients who do not tolerate CPAP.

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Permalink Reply by RockRpsgt on September 25, 2009 at 11:09am

either you are not putting enough water in your humidifier, or your humidity is too high. Are you waking up congested? stuffy?

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Permalink Reply by RichM on September 25, 2009 at 1:38pm

Christine, BiPap is a two level pressures. To keep it in simple terms, one being used when you inhale and a lower one when you are exhaling. This makes it easier to handle, so you do not have to force your air our when you exhale. When you go in for your next test make sure you tell the tech that you have been having problems with using the CPAP, exspecially when you exhale and you would like to try using a BIPAP with this study. That is what I did when I had my last study a year ago and he did just that and it was so much better. I hope you will be able to do that when you do your next test, it will be worth it.
Good Luck
Rich M

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Permalink Reply by Christine Myers on September 25, 2009 at 2:25pm

Yes I still wake up congested and with sometimes a really bad headache. I put more water in there than they suggest. It seems to work a little better but there is very little water in the morning.

Rock Hinkle said:

either you are not putting enough water in your humidifier, or your humidity is too high. Are you waking up congested? stuffy?

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Permalink Reply by Christine Myers on September 25, 2009 at 2:27pm

Thanks for the suggestion. The doctor should have suggested this but he said do another study and we'll see if the pressures are off. My second sleep study they only had 2 hours (not continuous) of sleep pattern to observe.

RichM said:

Christine, BiPap is a two level pressures. To keep it in simple terms, one being used when you inhale and a lower one when you are exhaling. This makes it easier to handle, so you do not have to force your air our when you exhale. When you go in for your next test make sure you tell the tech that you have been having problems with using the CPAP, exspecially when you exhale and you would like to try using a BIPAP with this study. That is what I did when I had my last study a year ago and he did just that and it was so much better. I hope you will be able to do that when you do your next test, it will be worth it.
Good Luck
Rich M

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Permalink Reply by Saz RPSGT on September 25, 2009 at 3:45pm

Possibly a longshot, but are you getting water in your mask and collecting in your tube? If so, this is rainout and could possibly be causing an obstruction in your tube (causing CPAP to be ineffective).

I'm just trying to come at this from another angle. It just is strange that there is that much water to start, then nothing.

Jason

Christine Myers said:

Yes I still wake up congested and with sometimes a really bad headache. I put more water in there than they suggest. It seems to work a little better but there is very little water in the morning.

Rock Hinkle said:

either you are not putting enough water in your humidifier, or your humidity is too high. Are you waking up congested? stuffy?

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Permalink Reply by Dan Lyons on September 25, 2009 at 4:26pm

Christine,
I am so sorry about the issues you are having. Please don’t give up and lets see, using the combine efforts of the folks here, if you can’t work through the issues.

First thing I can see is we need some additional information from you, which would allow a more thorough review of the situation.

Did you request and secure copies, full and complete, of your sleep study(s) and copies of your script. If you didn’t – GET THEM. They contain imperative information that will facilitate your continuing therapy. Besides that, you are entitled to them by law (HIPAA). Do not accept a “no” from the physician or his staff.

I am guessing at this, but I would be willing to wager the DME from whom your *PAP equipment and masks were obtained did a very poor job in explaining the units operation and proper mask fitting methods. You will find that almost all the DME’s care nothing about you, but do worship your insurance card and or wallet, so don’t expect great things from them.

Nothing like having someone talks Greek to you and when you say you don’t speak Greek, they nod and continue speaking in Greek. I am seeing this happen, more and more frequently in this forum by some of the “pros”.

Patients don’t like that and nothing irritates a confused patient worse than having a “pro” talk over their head when they are making an attempt to learning something as important as this therapy. You as a patient have a learning curve and time will educate you as your desire to understand increases.

The brand, type and model of your *PAP machine and mask(s) to which you have tried are important details to share.

Do you know your settings? Please share them. What are the humidifier settings? Are you using distilled water? Basically all the information you can share helps and might contain a clue.

So lets get started and maybe some clear and simple answers can be found that help you. You first step has been a great one.

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Permalink Reply by RockRpsgt on September 25, 2009 at 4:41pm

Nothing like having someone talks Greek to you and when you say you don’t speak Greek, they nod and continue speaking in Greek. I am seeing this happen, more and more frequently in this forum by some of the “pros”.

There is no end to your attacks on those of the medical community is there Dan?

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Permalink Reply by RockRpsgt on September 25, 2009 at 4:43pm

You might want to try lowering your humidity level. In a lab setting I use 1 or 2.

Christine Myers said:

Yes I still wake up congested and with sometimes a really bad headache. I put more water in there than they suggest. It seems to work a little better but there is very little water in the morning.

Rock Hinkle said:

either you are not putting enough water in your humidifier, or your humidity is too high. Are you waking up congested? stuffy?

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Permalink Reply by RichM on September 25, 2009 at 7:18pm

Christine, like Rock said you need to check to see what level you humidifier is set to. It should be set to 1 or 2 at the most. It not use much in the summer unless you live in a dry climate. If you live in a wet climate it is best to not use it. It is weird that the water is used up in one night. That usually means you have the heat set up to high. Also make sure your machine is level or lower then when you lay down. This will help to keep water from going into your hose. Hope that this helps.
Rich M

Christine Myers said:

Thanks for the suggestion. The doctor should have suggested this but he said do another study and we'll see if the pressures are off. My second sleep study they only had 2 hours (not continuous) of sleep pattern to observe.

RichM said:

Christine, BiPap is a two level pressures. To keep it in simple terms, one being used when you inhale and a lower one when you are exhaling. This makes it easier to handle, so you do not have to force your air our when you exhale. When you go in for your next test make sure you tell the tech that you have been having problems with using the CPAP, exspecially when you exhale and you would like to try using a BIPAP with this study. That is what I did when I had my last study a year ago and he did just that and it was so much better. I hope you will be able to do that when you do your next test, it will be worth it.
Good Luck
Rich M

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Permalink Reply by susan mccord on September 25, 2009 at 9:08pm

Christine--I had a hard time adjusting to CPAP for awhile. Had a lot of side effects, i.e., extreme stuffiness alternating with ridiculous runny nose, headache, no sleep, basically felt like crap. I was using my humidification system set at 1 or 2. People on here and my DME told me I needed more humidity. Long story short, I've ended up needing my setting at 5 all the time. I've tried turning it back to 4 a couple of times. Within 2 days, I'm having side effects again. I DON'T have side effects with humidity set on 5. My water container is nearly empty every a.m. I'm finally sleeping 6-7 hours consistently and am a little groggy when I wake up. It takes less and less time to get moving all the time though.

I live in Indiana, which is fairly humid in the summer, but I run my a/c 24/7. I've had NO condensation in hoses or mask. I run my hose under my blankets per someone on SG's advice. It works great.

What seems clear to me after being on CPAP for over two months, is that there's no one-size-fits-all answer to any of these questions. There are too many variables. For instance, I have heart disease and take a lot of Rx meds that are hard on my body and dry me out like an old toad. When I first started on them, 4 years ago, my skin/hair/nails/eyes/ vagina, etc., everything!! dried out to the point of intolerance. My body's gradually adjusted to the dryness plus I use a variety of products, some Rx'd, to manage the dryness. It makes sense to me, NOW, that my nose and sinuses are extremely sensitive to having air pumped into them, and react very badly in terms of side effects. I've been told before that I shouldn't keep humidification on 5. HOWEVER, that's what works for me. I'm finally beginning to feel somewhat better on CPAP and can tell a big difference in the quality of my sleep. I no longer fall asleep unbidden, and have noticed a remarkable improvement in my energy. Still a long way to go, but improving.

So, what you may want to consider is getting as much info as you can (and there's a LOT of info and support on SleepGuide), and then, working with your sleep doc, figure out a system that works for YOU. I'm not convinced at this point that there's any right or wrong to any of this, as long as we find a way to be consistent with CPAP. It's hard for some of us, especially starting out. Others adjust quickly.

Anyone who was on this journey with me over the summer knows what a wreck I was. And how long it's taken for me to get adapted to treatment. But I can honestly say I'm doing better now, and wouldn't even consider lying down without my CPAP on. It's become my savior in my mind. THAT is a miracle, considering how much I struggled at first!!!

So hang in there. Let all of us on SG support you--there are a lot of people, both patients and pros, who have a lot to offer. It can make all the difference in the world. I canNOT imagine what would have happened to me if I hadn't had this website to help me cope.....

Susan McCord :-)

Rock Hinkle said:

You might want to try lowering your humidity level. In a lab setting I use 1 or 2.

Christine Myers said:

Yes I still wake up congested and with sometimes a really bad headache. I put more water in there than they suggest. It seems to work a little better but there is very little water in the morning.

Rock Hinkle said:

either you are not putting enough water in your humidifier, or your humidity is too high. Are you waking up congested? stuffy?

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