After years of wrestling with sleep apnea and being tired almost constantly, I've ordered my first CPAP (should be here in a day or so). Here's my question to this forum of experienced users:
What do you wish you had known ... when you received your first CPAP and started using it?
What are the tips, tricks, traps, and lessons-learned that you've accumulated along the way, that might be of use to a rookie?
Any insight would be helpful ... as I'm currently clueless and plugging in this gadget for the first time in a day or two.
Rusty
What do you wish you had known?
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sleepycarol
- Posts: 2461
- Joined: Thu Aug 30, 2007 7:25 pm
- Location: Show-Me State
- Contact:
I wish I would have known that not all machines are equal.
When I was given a script and went to the DME I was given an M series Plus cpap with c-flex. I assumed the DME knew what they were doing!! WRONG!!
My script was actually for an apap with a pressure setting of 8 -12. Thankfully I had found this forum and quickly learned the difference so that I could "fire" my first DME and obtain the correct machine.
Without this form I would still be using the Plus series.
When I was given a script and went to the DME I was given an M series Plus cpap with c-flex. I assumed the DME knew what they were doing!! WRONG!!
My script was actually for an apap with a pressure setting of 8 -12. Thankfully I had found this forum and quickly learned the difference so that I could "fire" my first DME and obtain the correct machine.
Without this form I would still be using the Plus series.
Start Date: 8/30/2007 Pressure 9 - 15
I am not a doctor or other health care professional. Comments reflect my own personal experiences and opinions.
I am not a doctor or other health care professional. Comments reflect my own personal experiences and opinions.
Go up to the yellow lightbulb icon "Our Collective Wisdom" and start reading.
Den
Den
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
I just wish I'd known about the importance of data and how to retrieve it, that I'd known how unreliable sleep study titration can be, and that I'd known about APAP. Over a year after my initial diagnoses and being started on ineffective CPAP therapy, I learned these things, resulting in REAL treatment of my OSA. Now I feel great!
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sharon1965
- Posts: 1232
- Joined: Thu Jan 18, 2007 4:59 pm
- Location: Windsor, Ontario, Canada
same here: i wish i had known more about the various machines, since i didn't know a thing about them and just accepted what my RT gave me which was the bare bones minimum; nine months later i finally got a data capable machine and feel better knowing what's going on with my therapy; i also wish i'd known that it can take time--sometimes lots of it--to see the benefits of cpap therapy..i was told it would be almost overnight, and it certainly wasn't
i wish i'd known to get my prescription in my hand so i could be in charge of obtaining a machine
but most of all i wish i'd known about this forum before i started my therapy...i stumbled on to it after about a month, but there have been many folks who have come here once they receive their diagnosis and before purchasing their equipment, and i'm sure they have fared much better
best of luck...stick around...the support and advice you can receive here is invaluable, and can mean the difference between staying with it and giving up
i wish i'd known to get my prescription in my hand so i could be in charge of obtaining a machine
but most of all i wish i'd known about this forum before i started my therapy...i stumbled on to it after about a month, but there have been many folks who have come here once they receive their diagnosis and before purchasing their equipment, and i'm sure they have fared much better
best of luck...stick around...the support and advice you can receive here is invaluable, and can mean the difference between staying with it and giving up
_________________
| Software | ||||
 | ||||
| Additional Comments: decapitated aura, comfortsleeve, padacheeks, papillow, pur-sleep, pressure 9.5, back to using polident strips | ||||
If you always do what you've always done, you'll always get what you've always got...
These are things I'm glad I learned up front from this forum:
(in other words, things that have made the biggest difference)
1. Poligrip strips
2. Heated humidifier and heated hose
3. An AUTO machine with A-FLex (this should have been #1)
4. Advice and support on this forum has been 100 times over more valuable than any DME.
5. Don't give up on finding the right mask and bed pillow.
Fortunately (for me, anyway) I have a relative with apnea, who had to learn the hard way.
Welcome to the forum! Keep the questions coming!
(in other words, things that have made the biggest difference)
1. Poligrip strips
2. Heated humidifier and heated hose
3. An AUTO machine with A-FLex (this should have been #1)
4. Advice and support on this forum has been 100 times over more valuable than any DME.
5. Don't give up on finding the right mask and bed pillow.
Fortunately (for me, anyway) I have a relative with apnea, who had to learn the hard way.
Welcome to the forum! Keep the questions coming!
I wish I had known about this cpaptalk.com forum, AT LEAST BEFORE my titration study. Better yet, before my sleep evaluation study!
I wish I had known about the capabilities of the various xPAPs.
I wish I had had a better understanding of my insurance benefits for DME, especially xPAP therapy (Medicare AND secondary insurance).
I wish I had known about the capabilities of the various xPAPs.
I wish I had had a better understanding of my insurance benefits for DME, especially xPAP therapy (Medicare AND secondary insurance).
_________________
| Mask: Quattro™ FX Full Face CPAP Mask with Headgear |
| Additional Comments: PR SystemOne BPAP Auto w/Bi-Flex & Humidifier - EncorePro 2.2 Software - Contec CMS-50D+ Oximeter - Respironics EverFlo Q Concentrator |
Women are Angels. And when someone breaks our wings, we simply continue to fly.....on a broomstick. We are flexible like that.
My computer says I need to upgrade my brain to be compatible with its new software.
My computer says I need to upgrade my brain to be compatible with its new software.
Rusty,
Sorry!! I'm sure you're wondering what the heck poli-grip strips have to do with anything!! (I am referring to a way of taping our mouths shut, to prevent leaking CPAP air while using a nasal mask).
I'm sure after you take Wulfman's advice and after doing searches on this site, it will make a little more sense.
Sorry!! I'm sure you're wondering what the heck poli-grip strips have to do with anything!! (I am referring to a way of taping our mouths shut, to prevent leaking CPAP air while using a nasal mask).
I'm sure after you take Wulfman's advice and after doing searches on this site, it will make a little more sense.
Re: What do you wish you had known?
You (or somebody else) must not be completely "clueless" as your profile is showing that you have an M Series Auto w/C-Flex. If that is correct, you've got a leg up on others that have been handed the low-end non-data-capable machines and sent off on their way to sink or swim on their own.rwalther wrote:After years of wrestling with sleep apnea and being tired almost constantly, I've ordered my first CPAP (should be here in a day or so). Here's my question to this forum of experienced users:
What do you wish you had known ... when you received your first CPAP and started using it?
What are the tips, tricks, traps, and lessons-learned that you've accumulated along the way, that might be of use to a rookie?
Any insight would be helpful ... as I'm currently clueless and plugging in this gadget for the first time in a day or two.
Rusty
At the point my GP suspected that I had OSA, I started researching the ailment and treatment.....including the equipment. I found CPAP.COM (where I purchased my equipment) and this forum......all before I got my prescription. I knew that I wanted a machine with data capabilities so I could monitor my therapy and with the help of Becky at CPAP.COM, I got what I wanted.....and my insurance provider reimbursed me for it. In hindsight, I wouldn't change one thing about how I got from there to here.
Den
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
In no particular order,
1. A humidifier is essential. Also, warm the water in your humidifier before filling it. This will prevent an icy cold blast of air as your start to use your cpap the first time. You will also need to figure out the best setting for your humidifier, one that is high enough to keep you from waking up with a dry barking cough and low enough to keep you from getting "rainout", which is water condensing inside your tube and mask and dripping onto your face or up your nose.
2. Get a heated hose, or at least a hose cover. I made one out of an old cut up terry cloth towel and it works just fine. This will greatly decrease or even eliminate hose condensation problems.
3. Lay down in your bed with your equipment and figure out the best way to string your hose up on your wall or head board. I have a series of "command hooks" on my wall above the bed so that my hose is right above my head. Others have used clips and even hair ties to get it just right. Also, your hose should be above your CPAP so if you do get any excess moisture it will drain back into the humidifier.
4. If possible, take a week or even two off work to make adjustments to the machine and your mask. Some people have no problems, but most report a lot of short or broken nights sleep while adjusting to CPAP. Also, you will need to allow at least a few days for each adjustment you make to see if it improves what you are hoping to improve. If possible, only make one change at a time to be sure you are changing the right thing. For example, if you change your pressure settings and your mask at the same time and your numbers go up, how can you know for sure which change caused it?
5. You will almost certainly have to try at least a couple of different masks, so be prepared. Some are large and bulky enough to cause people to become claustraphobic. Other masks are decent enough, but you might have the wrong size. You will also need to spend some time making what seem like infintesimal adjustments to the straps to get it adjusted just right. "Just right" is defined as tight enough for no leaks and loose enough to prevent sores and marks on your face.
6. Go to your local drugstore and get the following items so that you have them on hand in the middle of the night if you need them. Paper tape and moleskin for any sore spots that your mask causes on your face, Macks silicone ear plugs to use for additional sealer for your mask (this was a Godsend for me, it finally moved me from the "intolerable" to "tolerable" stage of Cpap) some hydrocortisone cream for sensitive skin and sore spots you may/will develop, a few gallons of distilled water, hand and dish soap without antibacterial or moisterizer added (Dawn or Ivory dish soap works, and I use Neutrogena to wash my face every night). Remember, absolutely NO petroleum products should touch your mask or be breathed into your lungs. I had no trouble at all with mouth breathing, but a LOT of people do. You can read about this in other posts and have what you need on hand. You should also clear out a drawer or two in your bathroom, kitchen and/or bedroom to store all this new stuff.
7. Many of the pros here have listed the need for a data capable machine, which I heartily second. You should at least be able to get a LCD readout of your nights pressure, leaks, AHI, AI and HI numbers. I have a diary that I enter this data into along with comments about how long I slept, how I slept, any problems I had, how I felt when I got up, if my sleep was broken , etc. This is very helpful, and very encouraging as you prgress with your therapy. Almost every night I have somethng to feel good about, whether it is low leaks, low AI, or just feeling good when I get up (still my favorite!). You also need to know how to make adjustments to the machine, but be sure to write down all of your original settings so that you can switch it back if the changes make things worse.
8. Finally, and probably most important, bookmark this site and look it over every single day. I am six weeks into this and still learning. There is a great deal of knowledge, insight, support and even good humor to be had here. Attitude is very important. Become determined to take control of your therapy and stick with it no matter what and you cannot help but get better.
This is by no means a comprehensive list, but it represents some of things I have dealt with in the last month and a half. I hope it helps. Sleep well!
1. A humidifier is essential. Also, warm the water in your humidifier before filling it. This will prevent an icy cold blast of air as your start to use your cpap the first time. You will also need to figure out the best setting for your humidifier, one that is high enough to keep you from waking up with a dry barking cough and low enough to keep you from getting "rainout", which is water condensing inside your tube and mask and dripping onto your face or up your nose.
2. Get a heated hose, or at least a hose cover. I made one out of an old cut up terry cloth towel and it works just fine. This will greatly decrease or even eliminate hose condensation problems.
3. Lay down in your bed with your equipment and figure out the best way to string your hose up on your wall or head board. I have a series of "command hooks" on my wall above the bed so that my hose is right above my head. Others have used clips and even hair ties to get it just right. Also, your hose should be above your CPAP so if you do get any excess moisture it will drain back into the humidifier.
4. If possible, take a week or even two off work to make adjustments to the machine and your mask. Some people have no problems, but most report a lot of short or broken nights sleep while adjusting to CPAP. Also, you will need to allow at least a few days for each adjustment you make to see if it improves what you are hoping to improve. If possible, only make one change at a time to be sure you are changing the right thing. For example, if you change your pressure settings and your mask at the same time and your numbers go up, how can you know for sure which change caused it?
5. You will almost certainly have to try at least a couple of different masks, so be prepared. Some are large and bulky enough to cause people to become claustraphobic. Other masks are decent enough, but you might have the wrong size. You will also need to spend some time making what seem like infintesimal adjustments to the straps to get it adjusted just right. "Just right" is defined as tight enough for no leaks and loose enough to prevent sores and marks on your face.
6. Go to your local drugstore and get the following items so that you have them on hand in the middle of the night if you need them. Paper tape and moleskin for any sore spots that your mask causes on your face, Macks silicone ear plugs to use for additional sealer for your mask (this was a Godsend for me, it finally moved me from the "intolerable" to "tolerable" stage of Cpap) some hydrocortisone cream for sensitive skin and sore spots you may/will develop, a few gallons of distilled water, hand and dish soap without antibacterial or moisterizer added (Dawn or Ivory dish soap works, and I use Neutrogena to wash my face every night). Remember, absolutely NO petroleum products should touch your mask or be breathed into your lungs. I had no trouble at all with mouth breathing, but a LOT of people do. You can read about this in other posts and have what you need on hand. You should also clear out a drawer or two in your bathroom, kitchen and/or bedroom to store all this new stuff.
7. Many of the pros here have listed the need for a data capable machine, which I heartily second. You should at least be able to get a LCD readout of your nights pressure, leaks, AHI, AI and HI numbers. I have a diary that I enter this data into along with comments about how long I slept, how I slept, any problems I had, how I felt when I got up, if my sleep was broken , etc. This is very helpful, and very encouraging as you prgress with your therapy. Almost every night I have somethng to feel good about, whether it is low leaks, low AI, or just feeling good when I get up (still my favorite!). You also need to know how to make adjustments to the machine, but be sure to write down all of your original settings so that you can switch it back if the changes make things worse.
8. Finally, and probably most important, bookmark this site and look it over every single day. I am six weeks into this and still learning. There is a great deal of knowledge, insight, support and even good humor to be had here. Attitude is very important. Become determined to take control of your therapy and stick with it no matter what and you cannot help but get better.
This is by no means a comprehensive list, but it represents some of things I have dealt with in the last month and a half. I hope it helps. Sleep well!
_________________
| Mask: Ultra Mirage™ II Nasal CPAP Mask with Headgear |
| Additional Comments: Pressure is 11 |
Great advice ... from all directions.
I appreciate the advice. I'm plowing through the "Collective Wisdom" now. I have much to learn, but it's a start. I get all my "stuff" tomorrow. Should be an interesting day (and night).
Lots of great advice here ... I started reading previous threads before I had my titration study and that gave me the biggest benefit. Also keeping up with the postings on a daily basis gave me lots of additional info.
One item I didn't see in the posts on this thread (please excuse me if I missed it): if you live in a cold climate get a netipot or NeilMed sinus rinse system .... I get congested in the winter and woke up in a panic when I couldn't breathe one night. Luckily I had a netipot in house ready to go so I used that and wnet happily back to sleep
Mindy
One item I didn't see in the posts on this thread (please excuse me if I missed it): if you live in a cold climate get a netipot or NeilMed sinus rinse system .... I get congested in the winter and woke up in a panic when I couldn't breathe one night. Luckily I had a netipot in house ready to go so I used that and wnet happily back to sleep
Mindy
_________________
| Mask: Swift™ FX Bella Nasal Pillow CPAP Mask with Headgears |
| Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
| Additional Comments: Pressure 7-11. Padacheek |
"Life isn't about waiting for the storm to pass, it's about learning how to dance in the rain."
--- Author unknown
--- Author unknown
When I started CPAP about 9 years ago, the doc I saw was a student doing his ENT rotation thru the teaching hospital. All this stuff was real new to Oklahoma back then, and I could tell by talking to the guy I knew more about SA than he did...and I didn't know much.
A friend gave me an old Sullivan V that he couldn't get use to and a Sullivan bubble mask. Talk about a crappy mask. Anyway, when they did my study they used an Adams nasal pillow system, and I liked it, so went to a DME and bought one. Think I paid $175 for in in the late 90's.
No humidifier, no follow up at all, in fact, I took the machine with me when I bought the mask with the Rx for my pressure and she set it up.
Went along about eight years with what I thought were no problems. Never gave the machine or mask a second thought, just used them.
Started having problems about a year and a half ago and long story short, solved them with:
1. The help on this forum.
2. CPAP.com offering good equipment at reasonable prices (read no insurance)
3. Rested Gal. (thanks again)
4. Getting my mouth to seal, first with tape and now polident strips.
5. Learning to read and get my data every day so I can see what is happening.
6. After about 6 months trying to make APAP work, I went back to CPAP and haven't looked back since. I don't handle the various pressures well and do much better on a constant pressure. Still glad I have an APAP, and if things get weird again, I know I can run it in APAP for a while and see what my sweet spot is.
7. James Skinner's great Analyzer program.
8. Getting a humidifier with my new machine and then learning about the joys of rainout! Spending more money on an Aussie Heated Hose...LOL.
9. Snoredog for his wisdom and willingness to say what he thinks...even if it hair lips the Pope.
10. Sleepguy's Pur-sleep product.
11. Babette for keeping me in stitches...
JeffH
A friend gave me an old Sullivan V that he couldn't get use to and a Sullivan bubble mask. Talk about a crappy mask. Anyway, when they did my study they used an Adams nasal pillow system, and I liked it, so went to a DME and bought one. Think I paid $175 for in in the late 90's.
No humidifier, no follow up at all, in fact, I took the machine with me when I bought the mask with the Rx for my pressure and she set it up.
Went along about eight years with what I thought were no problems. Never gave the machine or mask a second thought, just used them.
Started having problems about a year and a half ago and long story short, solved them with:
1. The help on this forum.
2. CPAP.com offering good equipment at reasonable prices (read no insurance)
3. Rested Gal. (thanks again)
4. Getting my mouth to seal, first with tape and now polident strips.
5. Learning to read and get my data every day so I can see what is happening.
6. After about 6 months trying to make APAP work, I went back to CPAP and haven't looked back since. I don't handle the various pressures well and do much better on a constant pressure. Still glad I have an APAP, and if things get weird again, I know I can run it in APAP for a while and see what my sweet spot is.
7. James Skinner's great Analyzer program.
8. Getting a humidifier with my new machine and then learning about the joys of rainout! Spending more money on an Aussie Heated Hose...LOL.
9. Snoredog for his wisdom and willingness to say what he thinks...even if it hair lips the Pope.
10. Sleepguy's Pur-sleep product.
11. Babette for keeping me in stitches...
JeffH
_________________
| Mask | Humidifier | |||
 |  | |||
| Additional Comments: Equipment isn't correct, S9 ASV w/H5i | ||||
If I knew then...
Before several months of unsuccessful treatment, I wish I'd have known more about the ramp feature, that my feeling of suffocating was because a pressure of 4 is too low for many people. I was so exhausted I fell asleep immediately upon hitting the pillow, but yanked the mask back off within a very few minutes, then hit the ramp to start over. By repeating this all night long, I kept trying to sleep at a non-therapeutic pressure. All the while I blamed myself for not adjusting. That one factor could have made a difference in the success of my initial treatment.
Other than that, I wish I'd known how to recognize my doctor was clueless and moved on. Although I was telling him I kept snatching the mask off feeling like I was suffocating almost as soon as I put it on, it didn't occur to him that my ramp pressure could be an issue. In retrospect, that is so very elementary and I'm just appalled that something so basic was overlooked.
_________________
CPAPopedia Keywords Contained In This Post (Click For Definition): Ramp
Other than that, I wish I'd known how to recognize my doctor was clueless and moved on. Although I was telling him I kept snatching the mask off feeling like I was suffocating almost as soon as I put it on, it didn't occur to him that my ramp pressure could be an issue. In retrospect, that is so very elementary and I'm just appalled that something so basic was overlooked.
_________________
CPAPopedia Keywords Contained In This Post (Click For Definition): Ramp
_________________
| Mask: TAP PAP Nasal Pillow CPAP Mask with Improved Stability Mouthpiece |
| Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
| Additional Comments: Bleep/DreamPort for full nights, Tap Pap for shorter sessions |
Last edited by kteague on Fri Dec 28, 2007 3:25 pm, edited 1 time in total.
My SleepDancing Video link https://www.youtube.com/watch?v=jE7WA_5c73c
Re: If I knew then...
[quote="kteague"]Before several months of unsuccessful treatment, I wish I'd have known more about the ramp feature, that my feeling of suffocating was because a pressure of 4 is too low for many people. I was so exhausted I fell asleep immediately upon hitting the pillow, but yanked the mask back off within a very few minutes, then hit the ramp to start over. By repeating this all night long, I kept trying to sleep at a non-therapeutic pressure. All the while I blamed myself for not adjusting. That one factor could have made a diffrence in the success of my initial treatment.
Other than that, I wish I'd known not how to know my doctor was clueless and moved on. Although I was telling him I kept snatching the mask off feeling like I was suffocating almost as soon as I put it on, it didn't occur to him that my ramp pressure could be an issue. In retrospect, that is so very elementary and I'm just appalled that something so basic was overlooked.
Other than that, I wish I'd known not how to know my doctor was clueless and moved on. Although I was telling him I kept snatching the mask off feeling like I was suffocating almost as soon as I put it on, it didn't occur to him that my ramp pressure could be an issue. In retrospect, that is so very elementary and I'm just appalled that something so basic was overlooked.
_________________
| Mask | Humidifier | |||
| | |||
| Additional Comments: Equipment isn't correct, S9 ASV w/H5i | ||||