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Desperation Setting in for a New CPAP User
got this message and wanted to post it for input from the group:
"I started cpap therapy eight weeks ago. The first four nights were great. I slept fine, only getting up to use the bathroom once per night, whereas, before I was getting up 5-6 times. After the fourth night, I started having problems. When I would awaken for my trip to the bathroom, I was finding it difficult to get back to sleep. I was feeling like I had slept enough and the night was over. (My first get-up trip is always after about 90 minutes or so.) I also started having mask problems after the fourth night. My first mask was chaffing the bridge of my nose. (I have had serious leak problems with all 3 masks.) I exchanged it twice and then cpap suppliers started ignoring me and showing obvious signs that they were trying to disassociate from me. With the last mask, I had a problem with the hose suddenly disconnecting 4-5 times during the night. It would make a loud hissing noise, scaring me and making it hard to get back to sleep. The cpap supplier told me to either "tape" the hose to the mask or take back the mask I had before the mask I have now. When I objected, the supplier guy said he would not work with me again personally because I cursed him because I said I was not going to tape up a new product and I was not going to take back a "damned" mask that did not work for me to begin with.Then they made it clear they were tired of me by "delivering" a new hose by UPS. I am so upset now that I have started waking up about four times a night, almost like I was doing before I started using my cpap machine. Tomorrow will mark my eight week on the machine. I don't know what to do. I do not want to give up because I can still feel "some" improvement in my energy level. I might take one nap a day but I do not feel the urge to take 2 and 4 naps a day like before. My doctor said the cpap suppliers are "the people who are going to help (me) adjust to the cpap machine" but they have made this a very, very horrible experience for me. The experience of getting use to the machine and the mask problems is bad enough but now I have no confidence in my suppliers and I don't know if I can get back to the kind of improvement I had at first. Its like I am being overwhelmed by sleep deprivation and I am hurting bad, right now."
"I started cpap therapy eight weeks ago. The first four nights were great. I slept fine, only getting up to use the bathroom once per night, whereas, before I was getting up 5-6 times. After the fourth night, I started having problems. When I would awaken for my trip to the bathroom, I was finding it difficult to get back to sleep. I was feeling like I had slept enough and the night was over. (My first get-up trip is always after about 90 minutes or so.) I also started having mask problems after the fourth night. My first mask was chaffing the bridge of my nose. (I have had serious leak problems with all 3 masks.) I exchanged it twice and then cpap suppliers started ignoring me and showing obvious signs that they were trying to disassociate from me. With the last mask, I had a problem with the hose suddenly disconnecting 4-5 times during the night. It would make a loud hissing noise, scaring me and making it hard to get back to sleep. The cpap supplier told me to either "tape" the hose to the mask or take back the mask I had before the mask I have now. When I objected, the supplier guy said he would not work with me again personally because I cursed him because I said I was not going to tape up a new product and I was not going to take back a "damned" mask that did not work for me to begin with.Then they made it clear they were tired of me by "delivering" a new hose by UPS. I am so upset now that I have started waking up about four times a night, almost like I was doing before I started using my cpap machine. Tomorrow will mark my eight week on the machine. I don't know what to do. I do not want to give up because I can still feel "some" improvement in my energy level. I might take one nap a day but I do not feel the urge to take 2 and 4 naps a day like before. My doctor said the cpap suppliers are "the people who are going to help (me) adjust to the cpap machine" but they have made this a very, very horrible experience for me. The experience of getting use to the machine and the mask problems is bad enough but now I have no confidence in my suppliers and I don't know if I can get back to the kind of improvement I had at first. Its like I am being overwhelmed by sleep deprivation and I am hurting bad, right now."
Views: 182
Replies to This Discussion
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Permalink Reply by Mary Z on
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This is a real shame. I am sorry to hear you are having so many problems with your supplier. There are several things I would try. The first is to talk to a supervisor at the company. I would be ingratiating (just my way about things), explain the trouble I was having and ask if there was someone willing to work with me to resolve the problems. If that didn't work I would change suppliers and explain the problems I was having (without dissing the other company - don't want to sound hard to please- just hard to fit with a suitable mask and hose) and give them a try. Get your doctor involved if you have to. Try to cultivate a relationship with a particular tech and for goodness sake, you can express your frustration, but don't curse at them- alienates the best of folks. Not blaming you for your problems by any means. I just get further by being nice, though honest.
Good luck,
Mary Zimlich
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Permalink Reply by gordon on
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I am very sorry to hear this. Please try to stay calm. It's easy to get angry without sleep. I had that. I hated the world. Put the CPAP down for a few days, and try to sleep, it's better you sleep without it, (not being your doctor) than not sleep at all. You CAN tape the hose. Many just snap in. You may be restless at night, pulling on it. Tape it , duct tape, whatever,until you can get a new clinic or therapist to help you.
You need to rest first, before you can be diplomatic. They have fittings, clamps and couplings to help with the hose connection. If you use a nasal -pillows mask with chinstrap, you won't have the type of mask that rests on the bridge of the nose. Please get some rest any way you can, then let us know your mask type and we can go from there and help you.
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I think Gordon made a better point than I did. Do what you have to do without letting desperation get the better of you. You're trying so hard and spinning your wheels, it must be really hard to be calm and objective.
Good luck, you'll get better advice here than I gave!
Mary Zimlich
gordon nelson said:I am very sorry to hear this. Please try to stay calm. It's easy to get angry without sleep. I had that. I hated the world. Put the CPAP down for a few days, and try to sleep, it's better you sleep without it, (not being your doctor) than not sleep at all. You CAN tape the hose. Many just snap in. You may be restless at night, pulling on it. Tape it , duct tape, whatever,until you can get a new clinic or therapist to help you.
You need to rest first, before you can be diplomatic. They have fittings, clamps and couplings to help with the hose connection. If you use a nasal -pillows mask with chinstrap, you won't have the type of mask that rests on the bridge of the nose. Please get some rest any way you can, then let us know your mask type and we can go from there and help you.
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Permalink Reply by Melinda Hertel on
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Hi. I have a couple of questions....Do you drink any caffeine? If so, once you start CPAP, it could be overload and causing you to wake up and not go back to sleep. What changed with your first mask? I'm surprised that it worked the first 4 nights if you were having serious leaks. Which masks have you tried, and where are the leaks coming from? My hunch is that the leaks are what are waking you up--if you have a big enough leak it's like you're not even getting therapy. I have seen some new products on the market that might help with chafing and/or leaks: http://www.remzzzs.com/ and http://www.sleepcomfortcaresystem.com/contactus.html. I haven't had anyone find the Remzzzs liners helpful, and the other thing I have never tried. If you tell me which masks you are using, I might have some free samples of Remzzzs you can try....I would be happy to mail them to you.
It sounds like your tubing was stretched out at the cuff if it was coming off in the middle of sleep. Or, perhaps you move a lot when you sleep. When you had your study, did your doctor note any abnormal movement during sleep? Is the new tubing better?
Don't give up--it can take some time to find the right mask. Did someone actually fit you each time you changed masks? If I know which masks you are using and what is happening with each of them, I may be able to give you some fitting tips and/or recommend something else. I'm sorry you have had so much trouble with your supplier. Unfortunately, that is something I hear from a lot of people. If you happen to live in Arizona, you can always come in and try on every mask we have....
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I am a newbie myself so don't have any concrete suggestions here-- other than perhaps to suggest you give your doctor a call or set up an appointment with him. I really just wanted to lend a supportive ear and to encourage you to continue to use this forum for suggestions and support.
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Permalink Reply by susan mccord on
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I'd encourage you to call your doctor and see if he/she knows another DME co. who provides better service. DME is critical for most of us in adjusting to masks and equipment. You can fire 'em!! Just have another one you like in place before you do it. I agree with Mary re: playing the positive communication game with them. I certainly understand your wanting to tell them off--if I were in your situation, I'd feel the same way. But dealing with some people in the medical field requires some finesse to get you what you need. Kiss their asses if necessary, but not at the expense of your common sense and comfort level.
I've been on CPAP for nearly 4 months and am on my 4th mask. Have had varying problems. My first mask, which I liked, suddenly began leaking after a short time on it. The second one was nasal pillows--didn't like them at all and took it right back. The third one I LOVED (another nasal mask, different brand with more cushioning)--it worked great but turned out I was mouth breathing and blowing away about 65% of my therapy. (Felt like crap again after initially beginning to feel better). By now I was thinking I was NEVER gonna find a mask that worked). THEN I got a full face mask, which I never thought I could tolerate but I like it. It doesn't leak, has good cushioning, and pretty much stops the mouth breathing.
If IT flames for some reason, I'll be back to get another one, believe me. Masks are a very common issue that people seem to have, so don't feel badly that you haven't found the correct one for you yet. The DME situation is unacceptable. I'd get right after changing, or talking to a supervisor, as soon as you can.
I guess the other thing I'd like to share with you is that in my experience, to date, this CPAP adjustment is NOT a smooth, straight-ahead road for a lot of us. Some folks adjust fast and feel better quickly. A lot of us don't. I have up and down days, and up and down sleep on a regular basis. No pattern to it, it just seems to happen. It used to upset me in some of the same ways you report. By now, I just know that's the way it's gonna be, for as long as it takes.
I think most people kinda expect, with ANY kind of medical treatment, that if you take the meds, or complete the treatment as ordered, etc., that whatever condition they have will get better exponentially. NOT necessarily the case with CPAP treatment. My opinion only, but I hear the same thing on SG all the time from others. (That's why I stopped getting upset about it). I just try to take it as it comes. I NEVER make plans for a.m. anymore 'cause I never know how I'll sleep or how I'll feel when I wake up.
I don't like living with limitations AT ALL, and that's what I'm having to learn to accept. Sometimes I'm gracious about it, sometimes I'm upset, and sometimes I'm just a bitch-on-wheels. (on those days I stay home and don't inflict myself on others 'cause I know it'll pass).
Guess what I'm trying to say, in my usual long-winded way, is that you're not alone with feeling frustrated and angry about this. You're still in pretty early stages of treatment, and I'd encourage you to be as patient with yourself as you can. (at the same time you're firing your DME!!).
The best thing about SleepGuide is coming to understand that people on here really get it and really care--many of us have the same kinds of experiences--you've just joined the C-Crap Club!!! And we're happy to have you with us!!! Just keep bringing your issues and frustrations to SG--someone will have something to say that will help you cope.....
Susan McCord :-)
I'm lucky in that my DME is excellent and provides great service. He fits me EVERY time I go in, has changed out parts on my machine more than once, etc. He also lets me try on all kinds of masks anytime I want to
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I read somewhere that good CPAP education and support is the key component to successful treatment and compliance. Patients with sleep disorders are raw and vulnerable; I have been there. You will need to search for a new rep at your current place or a new supplier.
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I encourage lots of reading of this forum, some study and patience.
When I first got my cpap, with the full face mask, I hated it. HATED IT. I had air leaks left and right, especially as I tried to get into a more comfortable sleeping position. I couldn't get through the night, and more than once, I hurled the mask across the room.
A couple of things helped me immensely.
The biggest, was somewhere on this forum - and I can't find it - one of our sleep tech provided very basic instructions on how to properly fit the mask for the night. Those instructions were an absolute God-send! I wish I could find them so I could link them...maybe someone else can.
Basically:
*I put the mask on sitting up, and with the the CPAP machine ON.
*I tighten the bottom straps as tight as I COMFORTABLY can.
*I then lightly tighten the top straps - my understanding is they are more guides.
*I adjust the nose doohickey to be comfortable.
*I then lay down, and tighted a little more as I settle in, as needed.
I can attest that after reading them and applying those instructions, I don't have the leakage problems I used to. Sure, I get an occasional leak, but it is usually from a strap coming loose in the night for some reason.
The other thing is it simply took time to get used to wearing the mask. Now, the only time I really notice it is if I accidentally roll over on it, or go to scratch my nose in the middle of the night.
For the record, my father uses the nasal pillows and loves it.
Also, I was originally set up with a 30 minute ramp up time (my setting is 17). As I got used to it, I lowered the ramp, to where now, I have no ramp up time at all.
I sleep much better - about 8 hours a night of solid sleep now. Like you though, I have noticed that if I do wake up in the middle of the night for some reason (usually related to cats), I have a hard time getting back to sleep. I attribute this to the simple fact that my sleep is MUCH better than it was previous to CPAP, and that even 3-4 hours of cpap is more restful that a full night without.
I hope this helps some.
For the record, my sleep doctor was not helpful at all when it comes to the machine, and the supplier only gave cursory instructions at best.
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Pay attention clay. The fitting is: http://www.sleepguide.com/forum/topics/how-to-properly-fit-a-mask
Clay Morgan said:I encourage lots of reading of this forum, some study and patience.
When I first got my cpap, with the full face mask, I hated it. HATED IT. I had air leaks left and right, especially as I tried to get into a more comfortable sleeping position. I couldn't get through the night, and more than once, I hurled the mask across the room.
A couple of things helped me immensely.
The biggest, was somewhere on this forum - and I can't find it - one of our sleep tech provided very basic instructions on how to properly fit the mask for the night. Those instructions were an absolute God-send! I wish I could find them so I could link them...maybe someone else can.
Basically:
*I put the mask on sitting up, and with the the CPAP machine ON.
*I tighten the bottom straps as tight as I COMFORTABLY can.
*I then lightly tighten the top straps - my understanding is they are more guides.
*I adjust the nose doohickey to be comfortable.
*I then lay down, and tighted a little more as I settle in, as needed.
I can attest that after reading them and applying those instructions, I don't have the leakage problems I used to. Sure, I get an occasional leak, but it is usually from a strap coming loose in the night for some reason.
The other thing is it simply took time to get used to wearing the mask. Now, the only time I really notice it is if I accidentally roll over on it, or go to scratch my nose in the middle of the night.
For the record, my father uses the nasal pillows and loves it.
Also, I was originally set up with a 30 minute ramp up time (my setting is 17). As I got used to it, I lowered the ramp, to where now, I have no ramp up time at all.
I sleep much better - about 8 hours a night of solid sleep now. Like you though, I have noticed that if I do wake up in the middle of the night for some reason (usually related to cats), I have a hard time getting back to sleep. I attribute this to the simple fact that my sleep is MUCH better than it was previous to CPAP, and that even 3-4 hours of cpap is more restful that a full night without.
I hope this helps some.
For the record, my sleep doctor was not helpful at all when it comes to the machine, and the supplier only gave cursory instructions at best.
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Permalink Reply by 99 on
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stick with it even it you got to take a step backwards to go forwards stick with it you will benefit by sticking with your cpap
look at the advice given and where possible apply or adapt the information to your adventage
should you adapt the information we would like to know so that we all may benefit
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I feel for you! I had many of the same problems as you have--but not all in the first few weeks. I have been using CPAP for the past three years and only in the last few months have we all (Sleep DR, CPAP supplier and me) got my needs figured out. I've tried several masks and have settled on the nasal pillow. We have had to adjust the pressure on my machine downward to stop the hose from popping off, we have changed to more powerful humidifer to stop the dry mouth and throat that would cause me to wake up gasping as though I couldnn't breathe. First of all--don't give up trying to find the right combination of mask, pressure and humidity for you. Your DR should recommend several suppliers for you--and you should be able to find a sympathetic sales rep. I get more help and information from my rep than I do my DR. My sales rep has come to my home several times and I've met him at my DR's office where we all could discuss my issues and resolve them. And I can say that after three years of trying I've finally got the right combination of equipment, pressure and humidty that allows me to sleep 8 straight hours every night. No more do I have 10-12 awakenings per night, those 5-6 trips to the bathroom, or the need to nap 3-4 hours each day, Keep working to get that sales rep or tech on your side! It makes all the difference in the world. And remember--you are not alone in this struggle.
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It is truly a terrible situation when a supplier will not work with you with cpap equipment. If you are a military veteran and have a VA clinic nearby, I have a solution for you. Contact for Sleep Center at the VA clinic and ask for help. The VA is very helpful and either will help you directly or put you in direct contact with suppliers who will work with you to get everything right for you. I know - it has worked for me. Thankfully I live in the Philly suburbs and a VA office is close by.
Good luck to you. Cpap equipment if properly fitted with work well for you. Don't give up!
Larry
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