Hi there,
I am a 29 year old woman from Ontario, Canada who has recently been diagnosed with sleep apnea. I was given to indexes (16 mild) and 47 (severe) with the severe index indicating activity during REM? Does anyone now what this means...is it severe or not?
Anyway, I went for a second overnight study with a CPAP. Despite some initial fear with the mask and some frequent awakenings I woke up feeling more rested that I can remember ever having been in my life. Tonight I have my CPAP at home (pressure and am excited, but slightly scared if it doesn't work?
Any sage words from those that have been there?
About to have my first night at home with the CPAP...
Endure
My only advice is to endure. Plan for disappointments that need time to resolve. There are many issues addressed here so as you have them occur look through postings for a lot of the best information---from users.
I am two weeks (I am not a sage giving advice but am a fellow beginner) into what I am willing to be a 9 month plan to begin feeling better. If you are like a lot of us here---you have been without restorative sleep for years undiagnosed. I have Fibromyalgia and Chronic Fatigue Syndrome from my years of hypoxia and sleep deprivation. I have already had a few good days with less mental confusion and more energy. But then there are days, like today, when I have all the symptoms that I have had for years. I keep repeating "nine months" to my weary little self!
Hang in there. Have a good night's sleep at home!
I am two weeks (I am not a sage giving advice but am a fellow beginner) into what I am willing to be a 9 month plan to begin feeling better. If you are like a lot of us here---you have been without restorative sleep for years undiagnosed. I have Fibromyalgia and Chronic Fatigue Syndrome from my years of hypoxia and sleep deprivation. I have already had a few good days with less mental confusion and more energy. But then there are days, like today, when I have all the symptoms that I have had for years. I keep repeating "nine months" to my weary little self!
Hang in there. Have a good night's sleep at home!
Hi and welcome to the Hosehead world!
What to expect? Well, first don't set your expectations TOO high. There will be problems with mask adjustments or the whole mask itself, getting used to the noise, etc. The thing is Don't Give Up! If you felt refreshed after a night on the CPAP during your sleep study, you will definitely feel better after a night or two at home without all those wires hooked up!
If you have a problem, don't be afraid to contact your DME, Doctor, AND the people at this site!
One problem that I had on the very first night was that I didn't feel I was getting enough air while waiting for the CPAP to ramp up. I went several nights lying there just waiting for it. Finally I decided to turn off the ramp feature and everything was fine. Leaks, especially into the eyes are the worst. I found my first mask had the sides blowing out from the pressure (16) so I switched masks and most of the leaks disappeared.
Good luck and here's to great sleep!
What to expect? Well, first don't set your expectations TOO high. There will be problems with mask adjustments or the whole mask itself, getting used to the noise, etc. The thing is Don't Give Up! If you felt refreshed after a night on the CPAP during your sleep study, you will definitely feel better after a night or two at home without all those wires hooked up!
If you have a problem, don't be afraid to contact your DME, Doctor, AND the people at this site!
One problem that I had on the very first night was that I didn't feel I was getting enough air while waiting for the CPAP to ramp up. I went several nights lying there just waiting for it. Finally I decided to turn off the ramp feature and everything was fine. Leaks, especially into the eyes are the worst. I found my first mask had the sides blowing out from the pressure (16) so I switched masks and most of the leaks disappeared.
Good luck and here's to great sleep!
Gary
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Nenetx2004
- Posts: 144
- Joined: Thu Nov 11, 2004 1:01 pm
- Location: Albany, New York
Hi and welcome to the forum! This has been a great source of information and support for me.
You need to keep in mind that everyone responds to CPAP therapy differently. Some notice an immediate change while others take longer. I have good days and bad days. The important thing to remember is that this therapy does work and also to keep your doctor and/or respiratory therapist in the loop on what's going on.
Good luck!
Jeanne
You need to keep in mind that everyone responds to CPAP therapy differently. Some notice an immediate change while others take longer. I have good days and bad days. The important thing to remember is that this therapy does work and also to keep your doctor and/or respiratory therapist in the loop on what's going on.
Good luck!
Jeanne
_________________
| Mask | |
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the rabbit
CPAP
Hello,
I have been using my CPAP for 5 years now. It has help me to sleep better and not be always sleepy. My own feeling, it's what I need to feel good and be good. I say that it is worth any time I need to spend fiddling with mask and the like to get a good nights sleep. So sleep well and never give up on your CPAP.
Good luck, and many restful nights for you.
I have been using my CPAP for 5 years now. It has help me to sleep better and not be always sleepy. My own feeling, it's what I need to feel good and be good. I say that it is worth any time I need to spend fiddling with mask and the like to get a good nights sleep. So sleep well and never give up on your CPAP.
Good luck, and many restful nights for you.
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rested gal
- Posts: 12881
- Joined: Thu Sep 09, 2004 10:14 pm
- Location: Tennessee
Popinka, how did your first night go?
If you get tenderness or a sore anywhere on your face (particularly bridge of nose or on your forehead) or if your mask leaks air into your eyes...or anywhere.. go straight back to the place that gave you your mask and ask for help.
Dealing with the mask is usually the biggest problem people have at first ... or even for a long time! A mask that suits you and is well-fitted should never have to be strapped on tightly.
Don't wait until a tender spot becomes an open sore. Don't let anyone at the supply place tell you, "It just takes time to get used to it" or "Your skin will toughen up". At the first sign of "this hurts!", go to work on getting:
a) the mask fitted better - might need a different size
b) a completely different brand of mask - a mask made by ResMed instead of Respironics, for example.
c) a completely different type of mask - Breeze with nasal pillows instead of the usual "covers-your-nose" nasal mask, for example.
Until you can get the right mask, if the mask you use does cause redness/tenderness on your nose, use a Nexcare spot bandaid, or moleskin, or something to pad the area a bit until you can get a mask that is more comfortable on you.
Also insist on a heated humidifier (not just "a humidifier") if the inside of your nose or mouth or throat feel dried out in the morning.
If mouth or throat continue to feel dry in the mornings, you are probably leaking treatment air out your mouth (or even through loosely closed lips, as "air puffs") while you sleep, whether you're ever aware of it or not. Chin straps rarely solve that kind of problem. If you notice dry mouth each morning, do a search on this message board for key words like: lip puff mouth leak air leak
Good luck. Sometimes it takes awhile to get all the pieces of the puzzle in place. For awhile you may feel like you're simply trading apneas disturbing your sleep for "getting used to this uncomfortable way to sleep" disturbances. It's worth sticking with, though. You've started on a quest now, to find the most comfortable equipment that suits you. That's rarely what "they" (the doctors or the DMEs) give you at first.... so keep reading and keep at it!
If you get tenderness or a sore anywhere on your face (particularly bridge of nose or on your forehead) or if your mask leaks air into your eyes...or anywhere.. go straight back to the place that gave you your mask and ask for help.
Dealing with the mask is usually the biggest problem people have at first ... or even for a long time! A mask that suits you and is well-fitted should never have to be strapped on tightly.
Don't wait until a tender spot becomes an open sore. Don't let anyone at the supply place tell you, "It just takes time to get used to it" or "Your skin will toughen up". At the first sign of "this hurts!", go to work on getting:
a) the mask fitted better - might need a different size
b) a completely different brand of mask - a mask made by ResMed instead of Respironics, for example.
c) a completely different type of mask - Breeze with nasal pillows instead of the usual "covers-your-nose" nasal mask, for example.
Until you can get the right mask, if the mask you use does cause redness/tenderness on your nose, use a Nexcare spot bandaid, or moleskin, or something to pad the area a bit until you can get a mask that is more comfortable on you.
Also insist on a heated humidifier (not just "a humidifier") if the inside of your nose or mouth or throat feel dried out in the morning.
If mouth or throat continue to feel dry in the mornings, you are probably leaking treatment air out your mouth (or even through loosely closed lips, as "air puffs") while you sleep, whether you're ever aware of it or not. Chin straps rarely solve that kind of problem. If you notice dry mouth each morning, do a search on this message board for key words like: lip puff mouth leak air leak
Good luck. Sometimes it takes awhile to get all the pieces of the puzzle in place. For awhile you may feel like you're simply trading apneas disturbing your sleep for "getting used to this uncomfortable way to sleep" disturbances. It's worth sticking with, though. You've started on a quest now, to find the most comfortable equipment that suits you. That's rarely what "they" (the doctors or the DMEs) give you at first.... so keep reading and keep at it!
First night was fine but...
Popinka,
I slept very well on the CPAP the first night, yes---in the hospital---despite all of the wires and first experience with the mask, hose, etc... I slept straight through with a fraction of the apnea episodes, they tell me, that I had without the CPAP. I was not as groggy in the morning and I remember that I did not have anxiety upon waking nor did I have shooting pains in my feet when I stood on them when I got up. I had renewed energy but only until about 11am (they woke me at 6am).
It seems for me that I am gaining a few more minutes of renewed energy, mental clarity, less aches and pains, and less anxiety everyday. It is slow going though and I will say when the confusion, aches and pains and anxiety hit mid-day they are stronger than they were when life was a blur without sleep.
I am hanging on for the haul hoping for complete recovery!
So, how was that first night at home for you?
I slept very well on the CPAP the first night, yes---in the hospital---despite all of the wires and first experience with the mask, hose, etc... I slept straight through with a fraction of the apnea episodes, they tell me, that I had without the CPAP. I was not as groggy in the morning and I remember that I did not have anxiety upon waking nor did I have shooting pains in my feet when I stood on them when I got up. I had renewed energy but only until about 11am (they woke me at 6am).
It seems for me that I am gaining a few more minutes of renewed energy, mental clarity, less aches and pains, and less anxiety everyday. It is slow going though and I will say when the confusion, aches and pains and anxiety hit mid-day they are stronger than they were when life was a blur without sleep.
I am hanging on for the haul hoping for complete recovery!
So, how was that first night at home for you?
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Popinka
My first night
Unfortunately my first night was not what I had dreamed (no pun intended). I didn't have any leaks (that I was aware of) and my small respirotics gell mask was very comfortable. I found the cool air and the rythmic breathing very soothing.
That being said, I woke up groggy. Perhaps not as groggy as usual. If there was a change it was subtle. I am a litigation lawyer & it is a very busy time for me at work. I had pent up my hopes that it would be an overnight cure.
I will certainly persist with the therapy. Even if the changes are subtle & slow it is worth it. I don't understand however how my experience (with relatively less sleep & all the wires at the clinic) could have had such better results than at home in my comfy bed?!
That being said, I woke up groggy. Perhaps not as groggy as usual. If there was a change it was subtle. I am a litigation lawyer & it is a very busy time for me at work. I had pent up my hopes that it would be an overnight cure.
I will certainly persist with the therapy. Even if the changes are subtle & slow it is worth it. I don't understand however how my experience (with relatively less sleep & all the wires at the clinic) could have had such better results than at home in my comfy bed?!
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Waverly
Try hooking up tpo a bunch of wires to simulate the experience at the sleep lab . Did they have a different bed ? A temperpedic perhaps. Put tape on your finger to simulate the pulse ox sensor. Dont forget the little tube under your nose and wires on your head and legs.. Now relax and go to sleep
Waverly
Waverly
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Guest
Expected...Endure
Popinka,
Do not get discouraged. Thank you Waverly for the humor...we all need a dose of that! I am 37, married, with four kids and I lost my dream job of 15 years because of undiagnosed sleep apnea and its toll on my life---my employer told me that my life was "out of balance" and then asked me to resign. I did not know the cause of my deterioration so I resigned.
But, we cannot get discouraged because it is a new beginning with air, oxygen, sleep. Those things are healing but they take time.
WE WILL GET BETTER. It is AWESOME that you did not hate the mask, or pull it off, or wake up with a red blistered nose bridge. Better yet---it is awesome that you did not sleep one more night without oxygen!
Hang in there.
Do not get discouraged. Thank you Waverly for the humor...we all need a dose of that! I am 37, married, with four kids and I lost my dream job of 15 years because of undiagnosed sleep apnea and its toll on my life---my employer told me that my life was "out of balance" and then asked me to resign. I did not know the cause of my deterioration so I resigned.
But, we cannot get discouraged because it is a new beginning with air, oxygen, sleep. Those things are healing but they take time.
WE WILL GET BETTER. It is AWESOME that you did not hate the mask, or pull it off, or wake up with a red blistered nose bridge. Better yet---it is awesome that you did not sleep one more night without oxygen!
Hang in there.
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rested gal
- Posts: 12881
- Joined: Thu Sep 09, 2004 10:14 pm
- Location: Tennessee
Popinka, if you woke up feeling much better after your titration night in the lab than you did after your first night on cpap at home, it might be that the pressure the doctor has decreed to be your "titrated pressure" is not quite sufficient.
Since you're a trial attorney, you undoubtedly have the intelligence and wherewithal to take an active role in your treatment. An autopap with software is a good way to do that, if you're so inclined. See for yourself what range of pressures an autopap shows that you actually need throughout the night - in your own bed, in your own sleep environment. Kinda' like having a mini sleep study at home, night after night.
If you chose, you'd be able to make adjustments to your own treatment with or without consulting a doctor.
Of course, it could also be that the strangeness of changing your sleeping style at home could have been giving you many small arousals. Not really waking you up, but disturbing your sleep under the surface of "wakefullness", even though you seemed to be quite comfortable with it all. Another night or two, another week or two... and you might start getting even more refreshing effects. You have the right attitude - to give it time and be willing to appreciate any small changes for the good that might come along slowly over the next months. And your good sense of humor - that helps a lot!
Popinka, I need you to write up an airtight (no pun intended) disclaimer for me.
My current disclaimer: I'm not a doctor, so don't listen to me or follow any of my suggestions.
Since you're a trial attorney, you undoubtedly have the intelligence and wherewithal to take an active role in your treatment. An autopap with software is a good way to do that, if you're so inclined. See for yourself what range of pressures an autopap shows that you actually need throughout the night - in your own bed, in your own sleep environment. Kinda' like having a mini sleep study at home, night after night.
If you chose, you'd be able to make adjustments to your own treatment with or without consulting a doctor.
Of course, it could also be that the strangeness of changing your sleeping style at home could have been giving you many small arousals. Not really waking you up, but disturbing your sleep under the surface of "wakefullness", even though you seemed to be quite comfortable with it all. Another night or two, another week or two... and you might start getting even more refreshing effects. You have the right attitude - to give it time and be willing to appreciate any small changes for the good that might come along slowly over the next months. And your good sense of humor - that helps a lot!
Popinka, I need you to write up an airtight (no pun intended) disclaimer for me.
My current disclaimer: I'm not a doctor, so don't listen to me or follow any of my suggestions.
Wow, this is scary stuff. I'm expecting that whenever I start treatment, life will change slowly. After years of stress on all the endocrine, immune, etc etc systems in my body, I'm expecting that improvement will not come overnight. What is most upsetting, is that my symptoms have been blamed on so many other things. My hubby is just not very sympathetic. I was never a morning person, and while I am relieved that I am not truly a psychotic, menopausal bitch, I wish he would at least remember what his life was like when he had chronic headaches and poor sleep. He takes for granted waking every morning with a clear head.
Anyway, I won't be expecting instant relief.
Anyway, I won't be expecting instant relief.
"Toto, I don't think we're in Kansas anymore."
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Popinka
helen_b...I understand what you mean. My husband wakes up in the morning singing. I have tried to explain to him what sleep apnea is and how profound its effects can be (something I am just learning about myself) but he still seems to have limited patience when I loose my keys, am absent minded or tired.
Thank you for the comments rested gal & others. Last night was good, difference was subtle again. Basically I was not dying to go back to sleep when I woke up. However I am not abounding with energy.
How does one separate sleep apnea from other energy problems. I am very overweight --- when my sleep apnea abates will I not be left with the fatigue of obesity? I guess the trick is that my energy might reach a level where I can deal with it.
So many emotions about this & so much to say. Perpetually fear losing my job for lack of focus & energy (although I know I have the potential to be a very good lawyer)...Wondering what my youth would have been like if my sleep apnea had been treated (I suspect I have had this since my teens). Still can't get over the feeling its "in my head" -- can anyone explain to me my diagnosis at the top?
I wonder whether the pressure may be an issue. Prescribed 8-9 and it was set to 8 initially? Is pressure an all or nothing --- i.e. it either is sufficient to open the airway or no or is it a little helps a little and a lot a lot more? Final question...what exactly is autopap?
Thanks for all your comments guys. It is so wonderful to have found a community such as this one. For so long I thought I was just depressed, and could not understand why I had this overpowering urge to sleep (which I attributed to laziness). At least now I gave a glimmer of hope.
Thank you for the comments rested gal & others. Last night was good, difference was subtle again. Basically I was not dying to go back to sleep when I woke up. However I am not abounding with energy.
How does one separate sleep apnea from other energy problems. I am very overweight --- when my sleep apnea abates will I not be left with the fatigue of obesity? I guess the trick is that my energy might reach a level where I can deal with it.
So many emotions about this & so much to say. Perpetually fear losing my job for lack of focus & energy (although I know I have the potential to be a very good lawyer)...Wondering what my youth would have been like if my sleep apnea had been treated (I suspect I have had this since my teens). Still can't get over the feeling its "in my head" -- can anyone explain to me my diagnosis at the top?
I wonder whether the pressure may be an issue. Prescribed 8-9 and it was set to 8 initially? Is pressure an all or nothing --- i.e. it either is sufficient to open the airway or no or is it a little helps a little and a lot a lot more? Final question...what exactly is autopap?
Thanks for all your comments guys. It is so wonderful to have found a community such as this one. For so long I thought I was just depressed, and could not understand why I had this overpowering urge to sleep (which I attributed to laziness). At least now I gave a glimmer of hope.
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Popinka
I just called the LPN (he is not a respitory therapist) at the supply company. He did not really know what an autopap was, which was a little concerning to me (not that I know, but I am not the expert).
I told him that my throught is sore, and that my experience was not as good. He said he has authority from my prescription to raise the pressure from 8 to 9 (and may be able to get approval for 10). Hopefully that works.
I told him that my throught is sore, and that my experience was not as good. He said he has authority from my prescription to raise the pressure from 8 to 9 (and may be able to get approval for 10). Hopefully that works.