I have so many questions I don't know where to begin. Have had my machine for about three weeks and my progress is getting worse instead of better. The only time I have actually slept with the mask on was after taking two sleeping pills. Went 4 hours one night and 7 another but most of the time I just lay there and tolerate it without being able to go to sleep. So around 2 AM or 4 AM I take it off and go to sleep because I have got to get some sleep so I can go to work the next day. Lately I have only been able to tolerate it for an hour, perhaps two at the most and I am awake during that time.
My main problem seems to be claustrophobia and congestion. For the past two weeks I have had a cold with a lot of congestion but I have been trying to use the machine anyway. Have tried taking Sudafed and benedryl to get congestion cleared up but it hasn't done the job. Even during the day when I am feeling congested I am having a hard time coping much less at night putting that mask on my nose. Just thinking about it during the day causes my heart to speed up. I have not had a problem with claustrophobia in the past except a few times at night when I have been badly congested. I just had the initial pressure adjusted from 4 to 9 but haven't tried that yet. I am taking a few days off in hopes the congestion will clear up.
One night after feeling panicked wearing the mask I retreated to the couch and slept sitting upright. I don't believe I snored so I reasoned that perhaps this position eliminated the obstruction and perhaps I could solve my problem by sleeping this way the rest of my life without using a machine. Is there any validity to this thought?. Could sleeping upright solve the problem. Does anyone else have experience or knowledge about this possibility?
I have tried taking Sudafed and Benedryl for the congestion but that doesn't seem to have helped that much. My machine is a RESMED S-8 with a heated humidifier which I use but it doesn't seem to help that much.
I am very discouraged and even told my wife recently that I would rather die young than live this way. The machine is not making me feel better because I can't sleep with it. So I am getting less sleep now than before. I never felt this bad before. I would appreciate any suggestions on how to deal with the congestion problem. Do most users not use the machine when they are congested?
Any guess on how long it might take me to adapt to the machine assuming I can control the congestion? I would appreciate any help you can offer. I sincerely believe they should expose a new user to a support group before starting the machine because it certainly seems to be traumatic and troublesome for a lot of people. I don't know if I can adapt to it or not, but I assume everyone starts off that way. I just need some way to cope until it gets better if it ever will.
Recently diagnosed and having a lot of trouble coping
Welcome aboard Joe,
Your not the first to raise this issue believe me. Good news is you've come to the right place. It will get easier . Just stick with it.
Yes you may get relief by sleeping upright in a chair but wouldn't you rather sleep in your bed ?
It can be very frustrating learning to live with the hose . There are many tricks to beat the initial anxiety. Try watching tv in your chair with the machine connected . Laying there in bed agonizing over it just makes it seem worse than it really is .
You may need to give it a rest until your congestion clears.
Have you tried a nasal spray such as Flonase or Nasonex. Ask your Dr for an Rx. resist the temptation to use Affrin or other OTC sprays. They can only be used for a day or 2 before you rebound.
Read other posts. There are many of us out there willing to help.
Cheers,
:twis ted:
Your not the first to raise this issue believe me. Good news is you've come to the right place. It will get easier . Just stick with it.
Yes you may get relief by sleeping upright in a chair but wouldn't you rather sleep in your bed ?
It can be very frustrating learning to live with the hose . There are many tricks to beat the initial anxiety. Try watching tv in your chair with the machine connected . Laying there in bed agonizing over it just makes it seem worse than it really is .
You may need to give it a rest until your congestion clears.
Have you tried a nasal spray such as Flonase or Nasonex. Ask your Dr for an Rx. resist the temptation to use Affrin or other OTC sprays. They can only be used for a day or 2 before you rebound.
Read other posts. There are many of us out there willing to help.
Cheers,
:twis ted:
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rested gal
- Posts: 12881
- Joined: Thu Sep 09, 2004 10:14 pm
- Location: Tennessee
JoeT, I sure sympathize with you. If your nose is congested to the point you can't really breathe through it, you need to be using a "full face" mask with your cpap.
Despite the name, a full face mask doesn't cover the entire face...just covers the mouth and nose. You can get treatment air either way then; breathing through your nose, or breathing through your mouth. Sure makes everything easier for those nights when you have a cold or congestion.
The ResMed Ultra Mirage FF (full face) mask is the one that works well for me.
I'd go back to the DME if I were you. DME = durable medical equipment...we use those initials as message board shorthand to refer to the home health care supplies store that equipped you with your cpap and mask. Tell the DME that you can't clear up the congestion, can't breathe through your nose, and need a full face mask, preferably the ResMed Ultra Mirage full face mask.
If the DME can't or won't help you by giving you a full face mask that very day, you might want to just order yourself one from an online store.
If your congestion problems are chronic rather than just a matter of getting through this bad cold, do a search on this site for posts by snork1. He had to have extensive sinus and nasal surgery before he could breathe well enough through his nose to benefit from cpap treatment.
Despite the name, a full face mask doesn't cover the entire face...just covers the mouth and nose. You can get treatment air either way then; breathing through your nose, or breathing through your mouth. Sure makes everything easier for those nights when you have a cold or congestion.
The ResMed Ultra Mirage FF (full face) mask is the one that works well for me.
I'd go back to the DME if I were you. DME = durable medical equipment...we use those initials as message board shorthand to refer to the home health care supplies store that equipped you with your cpap and mask. Tell the DME that you can't clear up the congestion, can't breathe through your nose, and need a full face mask, preferably the ResMed Ultra Mirage full face mask.
If the DME can't or won't help you by giving you a full face mask that very day, you might want to just order yourself one from an online store.
If your congestion problems are chronic rather than just a matter of getting through this bad cold, do a search on this site for posts by snork1. He had to have extensive sinus and nasal surgery before he could breathe well enough through his nose to benefit from cpap treatment.
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ThereIsHope
Don't give up. Many of us have had the same problems. For the first few months it was a nightly battle for me to use my machine and my days were ruined just thinking about having to try to sleep.
Now, almost three years later, it is just a part of life, and I actually find it comfortable, sleep great, and feel good again.
I use the swift pillow system because it opens up my nose and lets me breath. The regular style mask does not open me up as well. After about a year, I found that not only could I breath well at night, but I breath much better all day as well.
Keep trying, learn as much as you can, and if you wake up during the night breathing freely, you also may decide that it's not too bad.
Try a few masks if you can. I am a big fan of pillows, but find what works for you. Fine tune your setup a bit if you have to.
I know it is hard at first, but keep a positive attitude and perhaps it will work out.
I wish you the very best.
Now, almost three years later, it is just a part of life, and I actually find it comfortable, sleep great, and feel good again.
I use the swift pillow system because it opens up my nose and lets me breath. The regular style mask does not open me up as well. After about a year, I found that not only could I breath well at night, but I breath much better all day as well.
Keep trying, learn as much as you can, and if you wake up during the night breathing freely, you also may decide that it's not too bad.
Try a few masks if you can. I am a big fan of pillows, but find what works for you. Fine tune your setup a bit if you have to.
I know it is hard at first, but keep a positive attitude and perhaps it will work out.
I wish you the very best.
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neversleeps
- Posts: 1141
- Joined: Wed Apr 20, 2005 7:06 pm
- Location: Minnesota
Do not despair! Everything you are describing is very common (not sure if it really helps to know that, but it's true.)
You are so sleep-deprived it is affecting every aspect of your life so it's hard to put things in perspective and it's hard not to be consumed by it, even when you're not laying in bed at night. No wonder you're feeling discouraged! Hang in there and don't give up!
Use the Search function located at the top of this page and for keyword enter: claustrophobia and you'll get 49 matches for posts dealing with this problem.
Use the Search function and for keyword enter: congestion and you'll get 301 matches for posts dealing with this problem.
Read, read, read. I found the more ammunition I had for dealing with the adjustment period, the better I was able to tolerate it. Knowledge is power.
Yes, sleeping upright can help because when you're lying down it's easier for the soft tissue in your throat to collapse. No, it will not solve the problem.
Everyone takes a different length of time to adapt. 3 weeks is not that long. Perhaps you need a different mask. What mask are you using? What is your titrated pressure?
Sleep-deprivation is horrible. What you are feeling is absolutely normal. This is the time when people give up because they are so distressed, so tired, so overwhelmed, and so disgusted with the whole process. DO NOT GIVE UP!!! Think how sleep-deprived you must be to say you'd rather die young than get used to this! (Although I thought the same thing.) Then I researched sleep apnea and discovered I was at increased risk for stroke and cardiovascular disease and diabetes and a host of other problems that might not necessarily kill me, but would make my life a living hell. I would tell myself that wearing the mask all night every night was better than having a stroke and being partially paralyzed and incapacitated the rest of my life. Kind of an awful thought, but it kept me from giving up when I considered the possible alternatives.
You can succeed with this therapy. You can get used to it. It takes a while so don't expect it to be quick and easy. It is a struggle but once you've turned the corner you'll be glad you hung in there. We've all been there and we lived to tell about it. You will too!!!
DON'T GIVE UP!!!!!
You are so sleep-deprived it is affecting every aspect of your life so it's hard to put things in perspective and it's hard not to be consumed by it, even when you're not laying in bed at night. No wonder you're feeling discouraged! Hang in there and don't give up!
Use the Search function located at the top of this page and for keyword enter: claustrophobia and you'll get 49 matches for posts dealing with this problem.
Use the Search function and for keyword enter: congestion and you'll get 301 matches for posts dealing with this problem.
Read, read, read. I found the more ammunition I had for dealing with the adjustment period, the better I was able to tolerate it. Knowledge is power.
Yes, sleeping upright can help because when you're lying down it's easier for the soft tissue in your throat to collapse. No, it will not solve the problem.
Everyone takes a different length of time to adapt. 3 weeks is not that long. Perhaps you need a different mask. What mask are you using? What is your titrated pressure?
Sleep-deprivation is horrible. What you are feeling is absolutely normal. This is the time when people give up because they are so distressed, so tired, so overwhelmed, and so disgusted with the whole process. DO NOT GIVE UP!!! Think how sleep-deprived you must be to say you'd rather die young than get used to this! (Although I thought the same thing.) Then I researched sleep apnea and discovered I was at increased risk for stroke and cardiovascular disease and diabetes and a host of other problems that might not necessarily kill me, but would make my life a living hell. I would tell myself that wearing the mask all night every night was better than having a stroke and being partially paralyzed and incapacitated the rest of my life. Kind of an awful thought, but it kept me from giving up when I considered the possible alternatives.
You can succeed with this therapy. You can get used to it. It takes a while so don't expect it to be quick and easy. It is a struggle but once you've turned the corner you'll be glad you hung in there. We've all been there and we lived to tell about it. You will too!!!
DON'T GIVE UP!!!!!
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sapphireskye
- Posts: 121
- Joined: Fri Dec 23, 2005 2:22 pm
- Location: Colorado
- Contact:
Welcome Home
I consider this home for sleep apnea hoseheads as everyone calls us.
I am also new to cpap and am having trouble getting used to it as well. I also suffer from clastrophobia and constant sinus problems. As suggested by Rested gal, perhaps a Full face mask is the way to go. Six years ago when I was first diagnosed I refused to get a CPAP because I could not tolerate the nasal mask and freaked out and it scared me so bad that I didn't check into any other options. Another thing, if you have sinus problems you may need to look into that and see if you have any structural problems. There are also dental devices that help will sleep apnea sometimes. There is also the Oracle which only goes in your mouth and something called the OPAP which has something to do with a dental device and cpap combined. Me, I am trying to get used to the CPAP. I rip it off some nights and don't even realize it. I am lucky to get in 4 hours for compliance. I have decided I am going to do this no matter what it takes. I would bring up all these issues with your doc or dme. I am sorry you are suffering, but don't give up. I have only mild apnea and it affects my life. I wish I would have gotten help 6 years ago. I wish you well and the best of luck
God bless
Chelle
I am also new to cpap and am having trouble getting used to it as well. I also suffer from clastrophobia and constant sinus problems. As suggested by Rested gal, perhaps a Full face mask is the way to go. Six years ago when I was first diagnosed I refused to get a CPAP because I could not tolerate the nasal mask and freaked out and it scared me so bad that I didn't check into any other options. Another thing, if you have sinus problems you may need to look into that and see if you have any structural problems. There are also dental devices that help will sleep apnea sometimes. There is also the Oracle which only goes in your mouth and something called the OPAP which has something to do with a dental device and cpap combined. Me, I am trying to get used to the CPAP. I rip it off some nights and don't even realize it. I am lucky to get in 4 hours for compliance. I have decided I am going to do this no matter what it takes. I would bring up all these issues with your doc or dme. I am sorry you are suffering, but don't give up. I have only mild apnea and it affects my life. I wish I would have gotten help 6 years ago. I wish you well and the best of luck
God bless
Chelle
Welcom aboard, Joe!
A cold and congestion when starting xPAP therapy - that's really something to wish on your enemies.
I've been on xPAP therapy for about 8 months, and my absolutely worst times were in the beginning - when the masks were wrong and the pressure was wrong and more or less everything felt dreadful - and recently, when I had a cold.
Many of us have a hard time starting, even when we don't have colds.
As Chrisp says - you may need to give it a rest till your congestion clears. And then start out gradually.
Don't give up, read a lot on the forum, ask whatever you want - it's worth it.
O.
A cold and congestion when starting xPAP therapy - that's really something to wish on your enemies.
I've been on xPAP therapy for about 8 months, and my absolutely worst times were in the beginning - when the masks were wrong and the pressure was wrong and more or less everything felt dreadful - and recently, when I had a cold.
Many of us have a hard time starting, even when we don't have colds.
As Chrisp says - you may need to give it a rest till your congestion clears. And then start out gradually.
Don't give up, read a lot on the forum, ask whatever you want - it's worth it.
O.
_________________
| Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
| Additional Comments: Machine: Resmed AirSense10 for Her with Climateline heated hose ; alternating masks. |
Joe,
I really wish I could be as helpful and supportive as the rest of the gang, but if it would make you feel better I am at about week 10 of my CPAP trial and all I can say is, "I KNOW _EXACTLY_ HOW YOU FEEL!!"
I seem to be cycling through several days of problems, followed by several good, problem-free days. My bad days and nights are exactly as you describe: sinus congestion, claustraphobia, inability to sleep without taking a sedative, and tearing the mask off at 3 am (oh, I forgot the nose bleeds!) ... after a few nights of this, you can become so sleep deprived that you feel like calling the doctor in a crazed state and demanding that he fix your problem immediately. Luckily you come to your senses.
And then I've had good days interspersed with the bad, where you begin to speculate that the treatment might be doing some good.
All I know is that it's wicked hard. But do-able. This board and the people here can make all the difference.
Good luck, Man!!!!!
I really wish I could be as helpful and supportive as the rest of the gang, but if it would make you feel better I am at about week 10 of my CPAP trial and all I can say is, "I KNOW _EXACTLY_ HOW YOU FEEL!!"
I seem to be cycling through several days of problems, followed by several good, problem-free days. My bad days and nights are exactly as you describe: sinus congestion, claustraphobia, inability to sleep without taking a sedative, and tearing the mask off at 3 am (oh, I forgot the nose bleeds!) ... after a few nights of this, you can become so sleep deprived that you feel like calling the doctor in a crazed state and demanding that he fix your problem immediately. Luckily you come to your senses.
And then I've had good days interspersed with the bad, where you begin to speculate that the treatment might be doing some good.
All I know is that it's wicked hard. But do-able. This board and the people here can make all the difference.
Good luck, Man!!!!!
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Jan in Colo.
- Posts: 128
- Joined: Tue Sep 13, 2005 11:54 pm
- Location: Colorado
Joe, I'm so glad you found this forum. You can find LOADS of help and information here....just the support group you need.
I've had allergies and congestion lately...but only during the day. At night I put on my Swift mask and use the heated humidifier and I'm fine. Something about the Swift nasal pillow thing blows the air right into your sinuses (oh...that sounds gross, don't read that!) but anyway it clears your congestion up for the duration of the night anyway. What mask are you using now?
Make sure you are not using Sudafed in the evenings...that will keep you awake and probably make your anxiety worse as well. Benedryl is good for the nights....and have you tried Nyquil? Can't take that forever, but while you have a cold, you might find it effective. It helps you clear up and sleep. I kind of look forward to nights with a cold so I can take NYQUIL, lol. It's that good.
To help your claustrophobia and anxiety, try using your CPAP in the evenings after work while you watch TV. Or while you read a book. Away from your bed....this is just to help you get used to the feel of the mask.
I'm glad you raised your pressure from 4 to 9. A lot of people feel like they can't breathe properly at the level of 4-5 or so. That's too low. The higher pressure will take that feeling away.
Try to change your mental attitude. I kept telling myself (and I really believe this!) that it is a great thing that I can use CPAP for this condition! I'd MUCH rather use CPAP than have to be on some heavy-duty medication for the rest of my life! Or have this condition and find out there was nothing you could do about it!
You really need to acclimate to this because NO you do NOT really want to die early. You do NOT want high blood pressure or a stroke or heart damage. You want a full, well-rested, healthy life! And CPAP makes that possible! We are soooo lucky to have this treatment option! Twenty-five years ago there was NO TREATMENT for sleep apnea!
It's okay and perfectly natural to have adjustment problems at first. But just keep telling yourself...okay, I'll take the mask off for a bit, but the darn thing is going right back ON. Okay. I made it 2 hours...then I'm putting it back on to see if I can last another 3 hours. Just keep at it constantly, don't let yourself give up. And before long you won't even notice it.
I've been on CPAP since August and I can honestly say that this past month is the first time I've been able to put on my mask and sleep the whole night without fussing with it or even noticing it. And I've been 100% compliant since day one....8-10 hours a night, never laying down even to rest my FEET without putting on the mask. It STILL took that long for it to feel completely natural.
You can get to that point also. Just don't despair...CPAP is a GOOD thing. It will make you FEEL BETTER. It will make you LIVE LONGER AND BETTER. It really isn't a hideous awful thing once you let yourself relax and get used to it, really it isn't.
Keep in contact with this group....let us help you through it!
Jan in Colo.
I've had allergies and congestion lately...but only during the day. At night I put on my Swift mask and use the heated humidifier and I'm fine. Something about the Swift nasal pillow thing blows the air right into your sinuses (oh...that sounds gross, don't read that!) but anyway it clears your congestion up for the duration of the night anyway. What mask are you using now?
Make sure you are not using Sudafed in the evenings...that will keep you awake and probably make your anxiety worse as well. Benedryl is good for the nights....and have you tried Nyquil? Can't take that forever, but while you have a cold, you might find it effective. It helps you clear up and sleep. I kind of look forward to nights with a cold so I can take NYQUIL, lol. It's that good.
To help your claustrophobia and anxiety, try using your CPAP in the evenings after work while you watch TV. Or while you read a book. Away from your bed....this is just to help you get used to the feel of the mask.
I'm glad you raised your pressure from 4 to 9. A lot of people feel like they can't breathe properly at the level of 4-5 or so. That's too low. The higher pressure will take that feeling away.
Try to change your mental attitude. I kept telling myself (and I really believe this!) that it is a great thing that I can use CPAP for this condition! I'd MUCH rather use CPAP than have to be on some heavy-duty medication for the rest of my life! Or have this condition and find out there was nothing you could do about it!
You really need to acclimate to this because NO you do NOT really want to die early. You do NOT want high blood pressure or a stroke or heart damage. You want a full, well-rested, healthy life! And CPAP makes that possible! We are soooo lucky to have this treatment option! Twenty-five years ago there was NO TREATMENT for sleep apnea!
It's okay and perfectly natural to have adjustment problems at first. But just keep telling yourself...okay, I'll take the mask off for a bit, but the darn thing is going right back ON. Okay. I made it 2 hours...then I'm putting it back on to see if I can last another 3 hours. Just keep at it constantly, don't let yourself give up. And before long you won't even notice it.
I've been on CPAP since August and I can honestly say that this past month is the first time I've been able to put on my mask and sleep the whole night without fussing with it or even noticing it. And I've been 100% compliant since day one....8-10 hours a night, never laying down even to rest my FEET without putting on the mask. It STILL took that long for it to feel completely natural.
You can get to that point also. Just don't despair...CPAP is a GOOD thing. It will make you FEEL BETTER. It will make you LIVE LONGER AND BETTER. It really isn't a hideous awful thing once you let yourself relax and get used to it, really it isn't.
Keep in contact with this group....let us help you through it!
Jan in Colo.
Joe,
My 0.2c worth
Don't try to persist with the mask/machine if it is causing you to increasingly dislike them. Step back & try to sort out the obvious problems (cold etc:).
(when fighting aligators in a swamp - sometimes we need to drain the swamp 1st).
You may take your self to a point where you develop outright hostility to the machine/mask when in fact you just need a more controlled approach. Try
to avoid that happening.
If claustraphobia is a serious problem then can I suggest you do a short sea diving course (assuming you can get access to such a course). If you can get past the initial training of using a breathing regulator, I promise the use of a cpap mask becomes a 'breeze'.
Whatever path you take, you do need to make some tough decisions.
Always keep in your mind that you want to improve your quality of life. We here want to help you however we can.
Cheers & good luck.
DSM
My 0.2c worth
Don't try to persist with the mask/machine if it is causing you to increasingly dislike them. Step back & try to sort out the obvious problems (cold etc:).
(when fighting aligators in a swamp - sometimes we need to drain the swamp 1st).
You may take your self to a point where you develop outright hostility to the machine/mask when in fact you just need a more controlled approach. Try
to avoid that happening.
If claustraphobia is a serious problem then can I suggest you do a short sea diving course (assuming you can get access to such a course). If you can get past the initial training of using a breathing regulator, I promise the use of a cpap mask becomes a 'breeze'.
Whatever path you take, you do need to make some tough decisions.
Always keep in your mind that you want to improve your quality of life. We here want to help you however we can.
Cheers & good luck.
DSM
xPAP and Quattro std mask (plus a pad-a-cheek anti-leak strap)
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Snoredog
It takes the avg person a good 4-6 weeks before they feel anything from treatment and/or get used to wearing the mask to sleep.
Getting to sleep:
Use a Ramp timer: Get out your manual and set up the Ramp feature on the machine, use the longest timer available usually 30-45 minutes. Set the low or bottom pressure to 6cm or so (4cm is too low for most so forget going that low, you'll be starving for air).
Try wearing your mask without the hose attached for 5-10 minutes before bed to help get used to it. Don't over tighten the straps (lab techs are the worst offenders of showing anyone how to wear a mask). Lay down in bed with head on the pillow, turn on the machine and adjust the straps only tight enough to stop the leak, over tighten and you put a crease in the cushion and they leak more. If you develop a leak into the eyes, use the forehead pivot adjustment (if equipped) to stop that.
If you need something like TylenolPM go for it.
For your congestion, try and stay away from the over the counter stuff like Afrin, that stuff can actually cause congestion if used more than 2-3 days, read the warning label. Try a saline-only solution like the yoga folks use, it really works. You have to have a clear nasal passage to use a nasal mask, may have to go to a full face mask.
Getting to sleep:
Use a Ramp timer: Get out your manual and set up the Ramp feature on the machine, use the longest timer available usually 30-45 minutes. Set the low or bottom pressure to 6cm or so (4cm is too low for most so forget going that low, you'll be starving for air).
Try wearing your mask without the hose attached for 5-10 minutes before bed to help get used to it. Don't over tighten the straps (lab techs are the worst offenders of showing anyone how to wear a mask). Lay down in bed with head on the pillow, turn on the machine and adjust the straps only tight enough to stop the leak, over tighten and you put a crease in the cushion and they leak more. If you develop a leak into the eyes, use the forehead pivot adjustment (if equipped) to stop that.
If you need something like TylenolPM go for it.
For your congestion, try and stay away from the over the counter stuff like Afrin, that stuff can actually cause congestion if used more than 2-3 days, read the warning label. Try a saline-only solution like the yoga folks use, it really works. You have to have a clear nasal passage to use a nasal mask, may have to go to a full face mask.
Thanks to all who replied
Thank you very much to all who replied to my post with your suggestions and encouragement. I looked here first thing this morning when I got up. I have slept without the machine the past few nights because of the congestion and I am feeling better and probably am getting prepared mentally to try again once that is cleared up. I have not gotten a prescription for Flonase or a prescription like that but I will be seeing a doctor soon. The Sudafed could have been making it worse. I know a couple of days ago at work I was really feeling anxious and I understand that can be a side effect.
The first week I used the machine, I did have some good experience (but not very much). One night I was laying there feeling kind of mellow. My wife had gone to another bedroom, I was listening to some mellow Roy Orbison music, at low volume, on my MP3 player, and I was just about to fall asleep with the mask. I could feel the discharged air so I told myself, "Here I am in a special place with a breeze blowing just for me so I can go to sleep." If I can ever get that feeling back again, I will be on my way!
I think I will go without the machine a few more days while working on the congestion but I have not given up. I could have benefitted greatly from such support and advice during week one before I got desperate. In fact I don't think anyone should start this type of treatment without some sort of support group in place! Even the respiratory therapist who introduced me to the machine told me that she had heard the complaint before, especially from men that the pressure setting of 4 was too low. So why don't they automatically set it a little higher to start? I had to wait until I was absolutely desperate to call her feeling like I couldn't do it. Of course it was around Christmas time so I didn't want to bother them being a crybaby. She said she wished I hadn't waited so long to call. I think a better process would be for them to call you every two or three days to check on you since they know more about what to expect than you do. Anyway, enough griping.
Although the thought of a full face mask is a little scary, it would be nice to have the option to breathe through the mouth. That's how you get through the day when you can't breathe through your nose very well so it makes sense to get through the night that way too.
Unfortunately I need reading glasses to read and I can't get them on with my current nasal mask because of the forehead mechanism. I may be able to take off one of the earpieces so I can slide them through from the side so I will try that.
I have picked up some helpful hints just reading some of the posts here one day. I have found that the hose needs to be supported on the bed so it doesn't create pressure by hanging down. The hints about using a hair "scruncy" to anchor it to the headboard or side of the bed sounds reasonable. Another suggestion which makes sense is to have two different masks so in case you do have congestion you can use one of them temporarily until cleared up then go back to the other.
I will let you know how my congestion battle goes. Thanks again for the encouragement. Hopefully some day I can be in a position to pass on my experience to other newbie hose heads. Apparently there are a lot of us because in the past few weeks I have met two of them at work, heard from a past co-worker who had surgery, received a phone call from a brother of a friend who directed me to this website, and everyone I talk to seems to know someone with the problem!
So thanks to all of you. Now I must go out and be productive today! Usually get a lot of errands done on Saturday and it's time to get started. By the way, I am going to print up all your replies so my wife can read them. This is not easy for her either so knowing the experience of others may help to encourage her as well.
Joe T.
slef so dety coctoroon o
The first week I used the machine, I did have some good experience (but not very much). One night I was laying there feeling kind of mellow. My wife had gone to another bedroom, I was listening to some mellow Roy Orbison music, at low volume, on my MP3 player, and I was just about to fall asleep with the mask. I could feel the discharged air so I told myself, "Here I am in a special place with a breeze blowing just for me so I can go to sleep." If I can ever get that feeling back again, I will be on my way!
I think I will go without the machine a few more days while working on the congestion but I have not given up. I could have benefitted greatly from such support and advice during week one before I got desperate. In fact I don't think anyone should start this type of treatment without some sort of support group in place! Even the respiratory therapist who introduced me to the machine told me that she had heard the complaint before, especially from men that the pressure setting of 4 was too low. So why don't they automatically set it a little higher to start? I had to wait until I was absolutely desperate to call her feeling like I couldn't do it. Of course it was around Christmas time so I didn't want to bother them being a crybaby. She said she wished I hadn't waited so long to call. I think a better process would be for them to call you every two or three days to check on you since they know more about what to expect than you do. Anyway, enough griping.
Although the thought of a full face mask is a little scary, it would be nice to have the option to breathe through the mouth. That's how you get through the day when you can't breathe through your nose very well so it makes sense to get through the night that way too.
Unfortunately I need reading glasses to read and I can't get them on with my current nasal mask because of the forehead mechanism. I may be able to take off one of the earpieces so I can slide them through from the side so I will try that.
I have picked up some helpful hints just reading some of the posts here one day. I have found that the hose needs to be supported on the bed so it doesn't create pressure by hanging down. The hints about using a hair "scruncy" to anchor it to the headboard or side of the bed sounds reasonable. Another suggestion which makes sense is to have two different masks so in case you do have congestion you can use one of them temporarily until cleared up then go back to the other.
I will let you know how my congestion battle goes. Thanks again for the encouragement. Hopefully some day I can be in a position to pass on my experience to other newbie hose heads. Apparently there are a lot of us because in the past few weeks I have met two of them at work, heard from a past co-worker who had surgery, received a phone call from a brother of a friend who directed me to this website, and everyone I talk to seems to know someone with the problem!
So thanks to all of you. Now I must go out and be productive today! Usually get a lot of errands done on Saturday and it's time to get started. By the way, I am going to print up all your replies so my wife can read them. This is not easy for her either so knowing the experience of others may help to encourage her as well.
Joe T.
slef so dety coctoroon o
I also suffer from congestion. Mine has been heavy alergy related and been pretty much a constant my entire life.
You might want to consider starting a nasal/sinus rinse routine. If you search the topic you'll find lots of info here.
I started doing this last month and already have noticable, long term relief. I'm almost entirely off of decongestants and use nasal spray maybe once a week now.
It was a gross pain in the tuckus to start but I've gotten so used to doing it that I feel "uugly" if I skip a day. Not uugly as in stuffed up so much as in uugly as if I skipped brushing my teeth or taking a shower lol.
If you do start doing this, the water you use is pretty important. Most advise distilled water but I'm getting by just fine with filtered tap water. It's the chlorine in the tap water that'll getcha. That stuff will light you up but good.
Also, standard table salt is not a good idea. The iodine in it also adds to the burn. (tried it, dont like it). Uniodized salt costs the same as regular table salt and should be available at the local grocery.
With filtered tap water (warm) uniodized salt, off brand (cheepest I could find) baking soda and I dont feel any burn or discomfort from the rinse.
What ever you do, dont give up. Think of it as your life depending on it, cause it just might. Untreated apnea greatly increases the risks of stroke and heart failure. So, stick with it.
You might want to consider starting a nasal/sinus rinse routine. If you search the topic you'll find lots of info here.
I started doing this last month and already have noticable, long term relief. I'm almost entirely off of decongestants and use nasal spray maybe once a week now.
It was a gross pain in the tuckus to start but I've gotten so used to doing it that I feel "uugly" if I skip a day. Not uugly as in stuffed up so much as in uugly as if I skipped brushing my teeth or taking a shower lol.
If you do start doing this, the water you use is pretty important. Most advise distilled water but I'm getting by just fine with filtered tap water. It's the chlorine in the tap water that'll getcha. That stuff will light you up but good.
Also, standard table salt is not a good idea. The iodine in it also adds to the burn. (tried it, dont like it). Uniodized salt costs the same as regular table salt and should be available at the local grocery.
With filtered tap water (warm) uniodized salt, off brand (cheepest I could find) baking soda and I dont feel any burn or discomfort from the rinse.
What ever you do, dont give up. Think of it as your life depending on it, cause it just might. Untreated apnea greatly increases the risks of stroke and heart failure. So, stick with it.
Your problem is one many experience. The first week of using my machine I sat in a recliner hooked up, had all the lights on, TV on and a book. (I use the Swift which makes it easy for using reading glasses.) I would "mantra" my self while trying to cope, saying, "this is the breath of life" With the wooshing sound of the mask I pretended it was an ocean tide coming in and out (this thanks to suggestion from Lori on another post), I would fall asleep for an hour, wake up, fall asleep, sometimes waking up with the mask in my hand. I also had a cold and congestion, did Afrin which helped tremendously but didn't read the problems in using it more than two days, I used it for 2 weeks. Had an appointment with the sleep doc and he about had a fit that I was using it so long. Prescribed Flonase and it worked great, too. I also used Nyquil which was a Godsend. And as Jan pointed out, the Swift does seem to blow the snot out of you... ....gross but effective. I knew I was on track when one night I felt comfortable enough with everything to finally sleep in my bed. As it was pointed out in all these excellent posts, there will be problems in the beginning to adjust to this new and sometimes scary lifestyle, but it sure beats the alternative. Hang in there, and welcome to the place that will answer questions, offer tips and tricks and support you in your new adventure.
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| Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
| Additional Comments: Sleepyhead, Aussie heated hose, Pad A Cheek Products |
Bonnie
"People who say they slept like a baby apparently never had one"
"People who say they slept like a baby apparently never had one"
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CPAPLady56
- Posts: 15
- Joined: Sat Jul 30, 2005 3:36 pm
Joe,
Try NOT using the heated humidifier. When I first when on CPAP, I used the heated humidifier and got pneumonia after three days. I got well after a few weeks. I turned the humidity down and kept using the humidifier, but never did like the warm air blowing in my nose. After I got some water in the humidifer base, I had to use the CPAP without it for a few nights. I could not believe HOW MUCH BETTER I slept WITHOUT the humidifier. My doctor said that during the winter with the dry air, if people didn't use the humidifier, they tended to get nosebleeds. But, I have had absolutely no problem with this. I also think not having the warm air blowing in your nose will really help with the claustrophia. I had trouble for the first month or so with claustrophobia and I think it would really have helped to not have warm air.
Please try it and let me know how it works.
Michelle
Try NOT using the heated humidifier. When I first when on CPAP, I used the heated humidifier and got pneumonia after three days. I got well after a few weeks. I turned the humidity down and kept using the humidifier, but never did like the warm air blowing in my nose. After I got some water in the humidifer base, I had to use the CPAP without it for a few nights. I could not believe HOW MUCH BETTER I slept WITHOUT the humidifier. My doctor said that during the winter with the dry air, if people didn't use the humidifier, they tended to get nosebleeds. But, I have had absolutely no problem with this. I also think not having the warm air blowing in your nose will really help with the claustrophia. I had trouble for the first month or so with claustrophobia and I think it would really have helped to not have warm air.
Please try it and let me know how it works.
Michelle