"please keep me updated about oximeters "
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If you had two pieces of advice to give a newbie....
...what would those two pieces be?
A lot of us would really benefit from the been-there, endured-that experience you veterans have to offer us.
AND....
Happy New Year!
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Replies to This Discussion
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Permalink Reply by ZolliStar on
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If it's any help, I felt worse for the first two weeks. Little by little (and I used my machine for the first time on June 12, 2011) I've begun to feel better AND no longer feel wrung out with fatigue and exhaustion.
I've learned here, on Sleep Guide, that I've sustained a lot of health damage. I'm no longer "assaulting" my body through "hiccup" oxygen lacks throughout the night, thank God. (I have a severe case of SA, btw.) On the other hand, it also takes time to heal (especially if one's case is serious, as mine is).
I don't know how long I've had sleep apnea, but I think it's easily 20 years and could be longer. CPAP is not an instant cure even if one gets everything right (mask and fit; pressure; humidity) the first day, right "out of the box" (so to speak).
Everyone says: Keep at it.
This newbie agrees. Keep at it, Susan!
Susan Jane Lau said:Reply from Susan
I have had my bipap machine for 10 days. The technician led me to believe I would feel better the next day. My days have not been good but today I got up feeling much better. I have no problems with my mask or sleeping, just feeling bad when I awake in the morning. After reading these comments I feel much better knowing it does take time. Hope it will lead to getting rid of my Paxil in the future. Thank you so much for your helpful comments.
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Great tips, Patricia. Thank you!
Patricia A Davis said:I've been a CPAP user now for 1 year. I wear the full-face mask. When I first started using it, it left horrible marks. I went online to see if there was something I could get. Just 6 months ago it was not covered by Medicare of United Healthcare but it is now; cloth liners. Here is where I first order them: http://www.remzzzs.com/default.asp but I contact Medicare and they now pay for them as well. The next thing I am going to see if Medicare can change is how often one can get the head gear. I feel one a month would be good because mine seems to stretch out so much that I'm pulling it tighter and tigher by the time I can get a new one.
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Permalink Reply by Jeffrey Donaldson on
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Positive mental attitude. Cpap will help you. You have to give yourself time to adjust to it. It will work it's magic slowly, not all at once. The alternative to not using it could be very sad.
If you feel that something is wrong, let your doctor know. Try another mask, get a chin strap, use the ramp function and most of all, get on Sleep Guide and ask for help. We're all here for you.
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Permalink Reply by Louise on
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My # 1 would be come back here often & any time you have a problem as this group is wonderful & supportive.
#2 It's here that I learned of mask liners. They are wonderful. I had skin problems & lots of leaking to begin with. The liners aren't perfect but they certainly make the mask much more comfortable. I have only used the Quietus liner.
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I'm going to look into an auto-pap RIGHT AWAY. I want to have an extra machine around anyway (in case of "anything") so this purchase has been on my list. BTW, I've noticed that SecondWindCPAP.com has good prices. They recommend a DeVilbiss Intelipap Auto machine. Once I add in the smart card, etc., etc., the final price is $570, shipping included.
You're right about nasal pillows. I shunned them -- and now I find that I like them much better than the nasal mask I started with.
I may try the DreamWeaver. Anyone have comments on it? It looks very strange -- but so did the nasal pillows at first ;-) -- so I'm open to suggestions/advice.
sally p said:1. Spend the extra money if you can, and get an auto-cpap. My assigned pressure for a CPAP is 7.5, but with my auto-cpap (since it can sense what pressure I need) it's at an average of 4.5 all night and it's much easier to sleep. It's also great to have the printouts of my AHIs etc every day, to track improvement. Also, as I'm hoping to lose weight, if I do I won't have to go back in for another awful overnight titration study as my machine will automatically adjust regardless of how much weight I gain or lose.
2. Give the nasal pillow mask a try--I thought I would HATE it, but it's turned out to be the only kind I can tolerate. And if you can buy from a site that allows you to get mask insurance and try out different masks, it is absolutely worth it. I was convinced I was going to feel uncomfortable and suffocated for the rest of my life until I finally tried my 4th or 5th mask, and now I barely notice it (I ended up with a nasal pillow, with the tube going out the side--great for side sleepers or people who move around a lot).
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You're so right, Louise. This forum has been an enormous source of help and support. I am very grateful to Michael for launching it and to everyone who cotributes advice, suggestions and ideas.
Louise said:My # 1 would be come back here often & any time you have a problem as this group is wonderful & supportive.
#2 It's here that I learned of mask liners. They are wonderful. I had skin problems & lots of leaking to begin with. The liners aren't perfect but they certainly make the mask much more comfortable. I have only used the Quietus liner.
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Excellent advice, Jan. And also a good idea to do this during the day. Last night I was weary and it took me some 10 minutes -- maybe longer -- to get everything adjusted properly.
The small increments idea is on-the-money. I wish I had thought about it myself.
JanSaysHello said:Adjust the straps by small increments.
I do this in the day time so I am not too tired and frustrated.
Then I lie down with the mask on and the CPAP attached to check for leaks.
If it is too loose you, will hear and feel air escaping from the sides of the mask.
If it is too tight, it might be uncomfortable. So loosen the strap (s) ever so slightly.
Also, the straps may need to be adjusted again after washing and drying the straps and over time the straps may stretch out.
Good Luck and Don't Give Up. If you don't success the first time, try again the next day.
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I suppose not everyone will be able to get an auto-titration machine but that is what I got. I like it because it's set to start at 5 and it goes up according to what I need. In the beginning, it would be up to as high as 22; then over the months now a high for me will be 16. Most nights or mronings when I actually see it, it's less than 10. If you are old enough to be on Medicare, they paid for it and after 12 months it becomes "mine."
A friend of mine recently told me he puts an open jar of Vick's Vapor rub next to the air intake so i tried it and it seems to help with the "stuffiness" I was having before doing that. At times I also use a nasal spray before going to bed; that seems to help as well. You probably should speak to your doctor about the nasal spray though; some should only be used for a few days and others can create heart problems.
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Thanks for the "lift and seal" advice. I kinda stumbled on this (I sometimes switch to my nasal mask) and now I'm make it a regular practice when I use that mask.
Donna Medin said:The seal is the most important thing. Lift up your mask so it can seal properly. If it doesn't you probably need to adjust your straps.
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The woman is to be praised to making your needs the needs that counted. Too bad the company had no idea what a valuable person was in their employ.
My Sleep APnea said:After talking to the person who helped me, she went against her employers orders and sent me out the door with a brand new up to date machine that worked, It cost her her job.
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I absolutely agree, Jeffrey.
I decided when I learned I had sleep apnea and would spend the rest of my nights for the rest of my life attached to a machine by hose, that I would LOVE that machine and get used to it all right away.
It's not an automatic thing, of course, but it has gotten easier week-by-week. I learned here that most people take about six months to get everything "battened down" about right. That has been my experience, too. It does take a while. That's fine, so long as the progress, albeit slow, is steady -- and it is.
Jeffrey Donaldson said:Positive mental attitude. Cpap will help you. You have to give yourself time to adjust to it. It will work it's magic slowly, not all at once. The alternative to not using it could be very sad.
If you feel that something is wrong, let your doctor know. Try another mask, get a chin strap, use the ramp function and most of all, get on Sleep Guide and ask for help. We're all here for you.
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Permalink Reply by Lynn on
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I so know what you are talking about. I went 3 weeks with a mask I'd never get along with. I nearly gave up then but fortunately went back to my dme and the respiratory therapist asked me why I'd waited so long. I didn't know any better. I figured all masks were nasal mask. I certainly didn't understand I had options. The don't give up is definitely good advice. I nearly did and now am so glad I didn't.
John Camacho said:1) Don't give up.
2) Don't give up.
I waited 8 long years to try again. It is so unnatural to sleep with an aparatus strapped to your face, but the benefits far outweigh the uncomfortable feelings that many of us struggle with in the beginning. Trust that it will get easier and know that you are not alone in what you are going through. If only I had been connected to a community 9 years ago, or that the science had progressed as much and the care workers understood it all back then as they do now I would not had struggled for so long.
I have been using the cpap for 1.5 years now, and its as natural as breathing!
God Bless and Good Luck
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