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Permalink Reply by sleepycarol on September 25, 2009 at 10:19pm

What is your pressure setting? If your pressure is too low, you will have trouble breathing. If it is too high you will have problems. Without knowing what your pressure settings are it is difficult to tell if a bipap is appropriate for you. In my opinion it would be ridiculous to prescribe a bipap if you are on a pressure say of 7 or 8.

Which machine are you using? If it is an apap do you know your pressure range? If your pressure range is 4 to 20 cm then you are going to experience problems.

Does your machine have flex or exhale relief mode? This is where the pressure is reduced to help with exhaling.

Many of us had to try many mask before finding one that works best for us. Your having to try 5 masks is not that unusual, and you may still have to keep trying different masks to find the perfect one for your facial features and comfort.

If you could look at the top of your machine the full name of it should be written somewhere. Give us the brand and model. If you have your pressure settings give those to us as well. If your machine is data capable has anyone checked your reports?

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Permalink Reply by Duane McDade on September 28, 2009 at 11:48pm

Holy Smokes People before she does all that could she just give Bi-Level a try? What do you think? Wow!

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Permalink Reply by Lin on September 29, 2009 at 12:13am

Christine,
Yes,I have been fighting this same problem. I can't sleep very well with the mask on.
I fall asleep with it on sometimes, but I walke up in the middle of the night and take it off in my sleep.
I don't feel any more energy from using it either.
Lin

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Permalink Reply by Christine Myers on September 29, 2009 at 7:27am

Good morning,

It is a Respironics RemStar M Series CPAP machine and the pressure is 11 which I thought was high given a friend of mine is at 6 and he is an adult male.... perhaps this doesn't make a difference. I think it has an exhale relief mode.

My doctor insisted everything was done correctly and the technician taught how to change the pressure which I did for a week down to 9.5 no help. I am going for another sleep study tonight. I'm convinced they didn't have enough information and now the doctor thinks I may have reflexive condition with my legs which may be waking me up.

I wrote because I was tired of hearing the doctor and technician tell me that patients (tech said this) damn near drop to their knees with gratitude for the sleep and it usually happens after day one, doc said give it a week and then increased time to two weeks....

One of the issues was the tech didn't take time to fit me and gave me a much too large mask.

Thank you for your help.
Christine.
sleepycarol said:

What is your pressure setting? If your pressure is too low, you will have trouble breathing. If it is too high you will have problems. Without knowing what your pressure settings are it is difficult to tell if a bipap is appropriate for you. In my opinion it would be ridiculous to prescribe a bipap if you are on a pressure say of 7 or 8.

Which machine are you using? If it is an apap do you know your pressure range? If your pressure range is 4 to 20 cm then you are going to experience problems.

Does your machine have flex or exhale relief mode? This is where the pressure is reduced to help with exhaling.

Many of us had to try many mask before finding one that works best for us. Your having to try 5 masks is not that unusual, and you may still have to keep trying different masks to find the perfect one for your facial features and comfort.

If you could look at the top of your machine the full name of it should be written somewhere. Give us the brand and model. If you have your pressure settings give those to us as well. If your machine is data capable has anyone checked your reports?

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Permalink Reply by Christine Myers on September 29, 2009 at 7:31am

Thank you so much Lin, I'm grateful to know I'm not alone. Doctor told me 10% of the folks give up and I know of two such cases but I am determined to beat this thing especially having read an entry on this site from a woman sharing that she actually had a bounce in her step. Regardless of what my day will like I dread getting up in the morning. The headaches can almost be unbearable and to maintain a cheery disposition is really work but unless you are sleep deprived you can't understand this. One friend told me you don't die from lack of sleep, I gently corrected her but she didn't hear me.

Thank you all.
Have a good Tuesday,
Christine.

Lin said:

Christine,
Yes,I have been fighting this same problem. I can't sleep very well with the mask on.
I fall asleep with it on sometimes, but I walke up in the middle of the night and take it off in my sleep.
I don't feel any more energy from using it either.
Lin

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Permalink Reply by Christine Myers on September 29, 2009 at 7:37am

Good morning Susan, thanks for the tip. What I've been told is that I need to purchase a humidifier. There's no more humid place than NYC in the summer. However I haven't had my AC on for a while and I still wake up congested. My setting is at 1. I wonder why the tech nor the doctor mentioned this. Thank you and you are correct I've gleaned so much already from this site. I at least have some more knowledgeable questions to ask.

Have a great day!
Christine.

susan mccord said:

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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Permalink Reply by Christine Myers on September 29, 2009 at 7:40am

Hi Rich, the machine should be no more than 31 inches lower than my bed correct? The tech originally told me it should be level or slightly higher than the bed and just recently I did some research that said lower and it has been now for about 2 weeks. There always seems to be a little water left in the morning.

RichM said:

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 Judy on September 29, 2009 at 10:28am

I'm surprised no one has suggested that perhaps the reason your humidifier is almost dry in the morning is because of massive Leaks, either thru your mouth or from your mask.

There are SEVERAL models of the Respironics REMStar M Series xPAP devices. You've narrowed the field for us to the brand (Respironics) and series (M series) but NOT the specific model. Look at the top of your xPAP again. Does it say Plus? Or Pro? IF it is a Plus there is no useful data to be gained from it. IF it is a Pro we can tell you how to access some of the nightly data which may well provide clues to some of your problem.

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