Hello everyone. I want to say how much I appreciate all the help I’ve gotten from this site. I don’t know what I would have done without you! I started CPAP on May 14, 2007. The first week on a pressure of 7 was like a miracle. I slept better than I have for 20 years. I woke refreshed and was able to go to work on-time. I quit being sleepy all day and had a ton of energy. I had a follow-up sleep study to titrate my pressure and have slept poorly ever since. The appointment with my sleep doctor to get a new prescription for the correct pressure isn’t until June 7th. I’m back to falling asleep at inappropriate times (at the dentist and chiropractor) being sleepy when I drive or at work. I am back to dragging into work late. I have headaches and sore nose and throat. I’ve been waking up trying to claw the mask off my face because I feel like I’m suffocating or thinking that the machine turned off.
I called my sleep doctor to report the problems on Thursday and was brushed off. They told me I have to wait until my appointment to get help. This morning I woke up almost sobbing from vivid nightmares of hopelessness and victimization. Enough is enough. I called my DME provider and talked to the on-call respiratory therapist. She said all my symptoms are normal. My pressure is too low and she will call my doctor on Tuesday morning to get a new pressure for me and gave me pointers how to sleep until that happens. I have to wait until Tuesday but that sure beats waiting until June 7th.
Apparently I have all the symptoms typical of a new CPAP user. The first week of treatment, my body adjusted to being able to breathe better at night but soon demanded more pressure. Feeling worse the second week is normal. I am breathing through my mouth without being aware of it trying to get enough air. She said in the meantime, I can try sleeping propped up with the CPAP on even just for a little nap or go ahead and sleep without it on. A few days off the machine won’t hurt anything.
Going back to gray exhaustion after a taste of vivid color is disappointing to say the least. If only I had called Optioncare on Thursday when the doctor’s office brushed me off, I’d be enjoying my holiday weekend instead of slugging my way through it. Thank you to all the great people here in chat that talked me into not accepting the brush off… I will be feeling better next week!
Sleepless in Bellingham...
Sleepless in Bellingham...
Nothing cures insomnia like the realization that it's time to get up!
Welcome to the forum.
Why wait and be "under-pressured" and sleep deprived all weekend?
It's YOUR therapy.....take control of it.....starting with your machine, doctor and RT/DME.
Also, if you're using a nasal mask, you're either mouth-breathing or mouth-leaking. In anycase, you're not getting the benefit of your therapy air. You'll need to seal your mouth with tape or use Polident adhesive strips to keep your air in. If you do a "Search" (above) on "taping" you should get quite a few suggestions on brands and types of tape. I think one is called "Micropore" (or something like that).
AND, if you want to change your pressure yourself, here's how to do it. Like I said, it's YOUR therapy and YOU need to take charge of it. Those other people aren't the ones who are sleeping with this equipment.
(You're showing a REMstar Pro 2 in your profile)
Den
REMstar Pro 2 Setup
When in the Setup Menu, the humidifier ^ and ramp v buttons operate as up and down keys to change the settings, the left/right user buttons < > allow you to go to the previous/next question or setting, and the pressure start/stop button is used to exit the Setup Menu. Holding the humidifier or ramp buttons down will cause the values to change more quickly.
To enter the Therapy Setup Menu, hold the two top user buttons < > down while plugging in the power cord.
Continue holding the buttons down until the REMstar Pro 2 with C-Flex beeps twice.
Note: The word "setup" will appear on all of the screens indicating that you are in the Therapy Setup Menu.
If you press the Pressure start/stop button, you will exit the Setup Menu.
a. Compliance hours/nights: (recommend leaving alone, but CAN be cleared at this point)
Select next setting with >
b. Therapy mode: (CPAP or CFLE) select with ^ or v
Select next setting with >
c. CPAP or CFLE pressure setting: Select with ^ or v
Select next setting with >
d. C-Flex mode (if you chose CFLE mode): Select setting 1, 2 or 3 with ^
Select next setting with >
e: Ramp time setting: Select with ^ or v
(ramp time will be turned off with a setting of 0)
Select next setting with >
f. Ramp pressure setting: Select with ^ or v
Select next setting with >
g. Patient disconnect setting: 1 = on 0 = off Select with ^ or v
Select next setting with >
h. Buttons lights setting: 1 = on 0 = off Select with ^ or v
(Last setting. Use On/Off button to exit Setup)
Why wait and be "under-pressured" and sleep deprived all weekend?
It's YOUR therapy.....take control of it.....starting with your machine, doctor and RT/DME.
Also, if you're using a nasal mask, you're either mouth-breathing or mouth-leaking. In anycase, you're not getting the benefit of your therapy air. You'll need to seal your mouth with tape or use Polident adhesive strips to keep your air in. If you do a "Search" (above) on "taping" you should get quite a few suggestions on brands and types of tape. I think one is called "Micropore" (or something like that).
AND, if you want to change your pressure yourself, here's how to do it. Like I said, it's YOUR therapy and YOU need to take charge of it. Those other people aren't the ones who are sleeping with this equipment.
(You're showing a REMstar Pro 2 in your profile)
Den
REMstar Pro 2 Setup
When in the Setup Menu, the humidifier ^ and ramp v buttons operate as up and down keys to change the settings, the left/right user buttons < > allow you to go to the previous/next question or setting, and the pressure start/stop button is used to exit the Setup Menu. Holding the humidifier or ramp buttons down will cause the values to change more quickly.
To enter the Therapy Setup Menu, hold the two top user buttons < > down while plugging in the power cord.
Continue holding the buttons down until the REMstar Pro 2 with C-Flex beeps twice.
Note: The word "setup" will appear on all of the screens indicating that you are in the Therapy Setup Menu.
If you press the Pressure start/stop button, you will exit the Setup Menu.
a. Compliance hours/nights: (recommend leaving alone, but CAN be cleared at this point)
Select next setting with >
b. Therapy mode: (CPAP or CFLE) select with ^ or v
Select next setting with >
c. CPAP or CFLE pressure setting: Select with ^ or v
Select next setting with >
d. C-Flex mode (if you chose CFLE mode): Select setting 1, 2 or 3 with ^
Select next setting with >
e: Ramp time setting: Select with ^ or v
(ramp time will be turned off with a setting of 0)
Select next setting with >
f. Ramp pressure setting: Select with ^ or v
Select next setting with >
g. Patient disconnect setting: 1 = on 0 = off Select with ^ or v
Select next setting with >
h. Buttons lights setting: 1 = on 0 = off Select with ^ or v
(Last setting. Use On/Off button to exit Setup)
(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
Hi Bellingham! I'm in Lakewood. I love B-Town! I have a good friend up there I don't see often enough.
I too am having the exact same problems you're having. You're lucky your RT is offering you help - mine brushed me off just like the doc. This board is the only thing saving me. That, and I found my doc's private email by accident, emailed her, freaked her OUT and got in to see her the next day. I got a prescription for Provigil, which is keeping my job for me. I don't predict long term use of it, as I'm in week 5, and already beginning to return to "normal" feeling - i.e., I can get through work without passing out, though I'm still very tired in the evenings and go to bed early.
Feel free to whine to me on PM anytime!!!! AND, if you feel like a meet-up, there's a workshop on June 2 in Seattle at Swedish Sleep Center. Sleepy Sandy from this board told me about it, and IBTeri and I from this board are carpooling up there from Tacoma. Sounds like a decent workshop, free lunch, and Sandy swears Swedish is the BEST sleep center with the best RT techs and docs, so I'm kinda hyped about it.
PM me or go to the Seattle Area Folks thread and PM SleepySandy, for more info.
Hugs,
Barbara in Lakewood
I too am having the exact same problems you're having. You're lucky your RT is offering you help - mine brushed me off just like the doc. This board is the only thing saving me. That, and I found my doc's private email by accident, emailed her, freaked her OUT and got in to see her the next day. I got a prescription for Provigil, which is keeping my job for me. I don't predict long term use of it, as I'm in week 5, and already beginning to return to "normal" feeling - i.e., I can get through work without passing out, though I'm still very tired in the evenings and go to bed early.
Feel free to whine to me on PM anytime!!!! AND, if you feel like a meet-up, there's a workshop on June 2 in Seattle at Swedish Sleep Center. Sleepy Sandy from this board told me about it, and IBTeri and I from this board are carpooling up there from Tacoma. Sounds like a decent workshop, free lunch, and Sandy swears Swedish is the BEST sleep center with the best RT techs and docs, so I'm kinda hyped about it.
PM me or go to the Seattle Area Folks thread and PM SleepySandy, for more info.
Hugs,
Barbara in Lakewood
_________________
| Machine: PR System One REMStar 60 Series Auto CPAP Machine |
| Additional Comments: Started XPAP 04/20/07. APAP currently wide open 10-20. Consistent AHI 2.1. No flex. HH 3. Deluxe Chinstrap. |
I currently have a stash of Nasal Aire II cannulas in Small or Extra Small. Please PM me if you would like them. I'm interested in bartering for something strange and wonderful that I don't currently own. Or a Large size NAII cannula. 
Thanks for your help Babette
I have 2 other engagements on June 2nd so am not able to attend the sleep seminar. Sure wish I could though. I've only been on my CPAP for 12 days and still am feeling somewhat overwhelmed with information. When it gets settled in and I feel better, I would love to meet up with some local "pappers".
I can't get ahold of my sleep doc at all but my resp therapist will advocate on my behalf. I realized today that everytime I ask anyone in the sleep clinic a question, it gets turned around on me and there is never an answer. I end up feeling like I'm arguing and trying to fight my way out of a wet paper bag. What an awful way to work with patients.
I can't get ahold of my sleep doc at all but my resp therapist will advocate on my behalf. I realized today that everytime I ask anyone in the sleep clinic a question, it gets turned around on me and there is never an answer. I end up feeling like I'm arguing and trying to fight my way out of a wet paper bag. What an awful way to work with patients.
Nothing cures insomnia like the realization that it's time to get up!
To Wulfman...
I apologize. Until I read your post, I didn't realize I had selected the wrong machine for my profile. I have the REMstar Pro M series with cflex. I appreciate your suggestions and help. The resp therapist told me I'm mouth breathing because I'm not getting enough air through my nose. I don't want to change the pressure on my machine myself, I don't know enough to do it safely. I also think mouth taping is premature at this point. Breathing through my mouth is awful but it keeps me alive!
Nothing cures insomnia like the realization that it's time to get up!
do you think you can get enough air via your nose if you cut off the mouth? if so I would suggest makeshifting a chin strap from an ace bandage however if you can't then don't try it and get some kind of full face mask when you can
what kind of leaks are you having? for the optilife at 7 I would expect the leaks to be in the lower to mid 20's
what kind of leaks are you having? for the optilife at 7 I would expect the leaks to be in the lower to mid 20's
Re: To Wulfman...
[quote="robbieh"]I apologize. Until I read your post, I didn't realize I had selected the wrong machine for my profile. I have the REMstar Pro M series with cflex. I appreciate your suggestions and help. The resp therapist told me I'm mouth breathing because I'm not getting enough air through my nose. I don't want to change the pressure on my machine myself, I don't know enough to do it safely. I also think mouth taping is premature at this point. Breathing through my mouth is awful but it keeps me alive!
_________________
| Mask | ||||
 | ||||
| Additional Comments: Equipment isn't correct, S9 ASV w/H5i | ||||
Mouth breathing is saving my life...
until I can get enough air in through my nose. My CPAP pressure is set too low. Just breathing through my nose causes me to feel like i'm smothering. If my mouth was taped shut I'm afraid it would cause severe damage. When my pressure is adjusted up enough, I will go back to nose breathing again.
The RT asked about my humidifier and how much water was left in it this morning. There was hardly any and I don't feel like the air is warm or moist at a setting of 3-4. She said that means the air is running through it too fast due to mouth breathing. She said to sleep sitting up until she can get my new prescription. She said this problem is very common in new xpap users and it will go away or lessen when my pressure is adjusted properly. It is at 7 right now and is like trying to breathe through a single straw. I wake up to see if the machine is still on.
The RT asked about my humidifier and how much water was left in it this morning. There was hardly any and I don't feel like the air is warm or moist at a setting of 3-4. She said that means the air is running through it too fast due to mouth breathing. She said to sleep sitting up until she can get my new prescription. She said this problem is very common in new xpap users and it will go away or lessen when my pressure is adjusted properly. It is at 7 right now and is like trying to breathe through a single straw. I wake up to see if the machine is still on.
Nothing cures insomnia like the realization that it's time to get up!
Re: Mouth breathing is saving my life...
[quote="robbieh"]until I can get enough air in through my nose. My CPAP pressure is set too low. Just breathing through my nose causes me to feel like i'm smothering. If my mouth was taped shut I'm afraid it would cause severe damage. When my pressure is adjusted up enough, I will go back to nose breathing again.
The RT asked about my humidifier and how much water was left in it this morning. There was hardly any and I don't feel like the air is warm or moist at a setting of 3-4. She said that means the air is running through it too fast due to mouth breathing. She said to sleep sitting up until she can get my new prescription. She said this problem is very common in new xpap users and it will go away or lessen when my pressure is adjusted properly. It is at 7 right now and is like trying to breathe through a single straw. I wake up to see if the machine is still on.
The RT asked about my humidifier and how much water was left in it this morning. There was hardly any and I don't feel like the air is warm or moist at a setting of 3-4. She said that means the air is running through it too fast due to mouth breathing. She said to sleep sitting up until she can get my new prescription. She said this problem is very common in new xpap users and it will go away or lessen when my pressure is adjusted properly. It is at 7 right now and is like trying to breathe through a single straw. I wake up to see if the machine is still on.
_________________
| Mask | ||||
| ||||
| Additional Comments: Equipment isn't correct, S9 ASV w/H5i | ||||
I think there is another issue here and that is
Why were you sent home with a nasal pillow mask if you are a mouth breather? This should have been detected by the sleep study (and if they didn't during the first one, it sure should have been seen when you went in for titration).
What mask was used during titration? Was a chin strap used?
Perhaps this is in part why the sleep doc's office is giving you a run around - perhaps someone blew it big time.
Again I would have the question what are your leak rates? I just downloaded my own data and with the optilife these last 4 nights at a pressure range 8 to 10 - average 8.9 - my leak rate averages 25.5.
Why were you sent home with a nasal pillow mask if you are a mouth breather? This should have been detected by the sleep study (and if they didn't during the first one, it sure should have been seen when you went in for titration).
What mask was used during titration? Was a chin strap used?
Perhaps this is in part why the sleep doc's office is giving you a run around - perhaps someone blew it big time.
Again I would have the question what are your leak rates? I just downloaded my own data and with the optilife these last 4 nights at a pressure range 8 to 10 - average 8.9 - my leak rate averages 25.5.
My leak rates are low
They started high but are down to 3.7 from 28. I'm sure I was breathing through my nose when I started. I don't have a dry mouth in the morning but I do have a sore throat.
My sleep clinic has told me nothing about anything. I don't know how severe my OSA is. I have no idea what my AHI was in the first sleep study nor did anyone tell me a thing about mouth breathing. I will be asking a lot of questions about mouth breathing when I go in to see my RT on Tuesday now that I know what to ask. I also will ask for copies of my sleep studies when I go see the sleep doc on 6/7.
I slept much better last night sitting up. My AHI was 8.8 instead of 9.8. I feel more rested this morning. If I do have a problem with mouth breathing, I want to try to train myself not to rather than use tape if at all possible. I want to work on one problem at a time so things don't get too confusing
My sleep clinic has told me nothing about anything. I don't know how severe my OSA is. I have no idea what my AHI was in the first sleep study nor did anyone tell me a thing about mouth breathing. I will be asking a lot of questions about mouth breathing when I go in to see my RT on Tuesday now that I know what to ask. I also will ask for copies of my sleep studies when I go see the sleep doc on 6/7.
I slept much better last night sitting up. My AHI was 8.8 instead of 9.8. I feel more rested this morning. If I do have a problem with mouth breathing, I want to try to train myself not to rather than use tape if at all possible. I want to work on one problem at a time so things don't get too confusing
Nothing cures insomnia like the realization that it's time to get up!
Robbieh, you've got to request a copy of your sleep results, in order to make decent decisions about your treatment. If the sleep lab or doc won't talk to you, demand a copy of it from your DME/RT, or ask your primary doc to request a copy for you. My primary gave me the first set of results, not problem, and the RT gave me the copy of my titration results, again, no problem.
Those results can probably be interpreted for you by someone here on the forum, to help you figure out what's going on with you.
I do agree with others that you need to STOP MOUTH BREATHING until you can get a full face or hybrid mask that is designed to work with mouth breathing. Now, don't freak out - I know just what you're thinking. I'm a 42 year old lifetime mouth breather. And I've managed to stop mouth breathing and use my nasal masks. Even on nights when one of my nostrils shuts down.
If you were not given a chinstrap, then use an ace bandage to create one. Try laying down BEFORE BEDTIME, and teaching yourself to breath through your nose. I was surprised how easy it really was for me. Now, I'm in week 5, and I'm still not 100% compliant. I took the mask off at 4 am today because my left nostril has gotten raw and wanted a break. But I only slept a few more hours, and I had gotten a good night's sleep before that, so I felt okay with that decision.
Keep plugging away. It's horrible, I know it is. It's like a diet - if you just CAN'T put the mask on tonight, then try try try like h*ll to do it tomorrow night. Do everything you can to keep plugging away at it. Borrow/trade/buy other masks. I'm really sorry we won't see you June 2, as I'm hoping to have a little mask try-on party, but maybe we can help you via the mail. Check Ebay, Craigslist, Yahoo Auctions, etc. for used masks, as well.
Best of luck,
Barbara in Lakewood
Those results can probably be interpreted for you by someone here on the forum, to help you figure out what's going on with you.
I do agree with others that you need to STOP MOUTH BREATHING until you can get a full face or hybrid mask that is designed to work with mouth breathing. Now, don't freak out - I know just what you're thinking. I'm a 42 year old lifetime mouth breather. And I've managed to stop mouth breathing and use my nasal masks. Even on nights when one of my nostrils shuts down.
If you were not given a chinstrap, then use an ace bandage to create one. Try laying down BEFORE BEDTIME, and teaching yourself to breath through your nose. I was surprised how easy it really was for me. Now, I'm in week 5, and I'm still not 100% compliant. I took the mask off at 4 am today because my left nostril has gotten raw and wanted a break. But I only slept a few more hours, and I had gotten a good night's sleep before that, so I felt okay with that decision.
Keep plugging away. It's horrible, I know it is. It's like a diet - if you just CAN'T put the mask on tonight, then try try try like h*ll to do it tomorrow night. Do everything you can to keep plugging away at it. Borrow/trade/buy other masks. I'm really sorry we won't see you June 2, as I'm hoping to have a little mask try-on party, but maybe we can help you via the mail. Check Ebay, Craigslist, Yahoo Auctions, etc. for used masks, as well.
Best of luck,
Barbara in Lakewood
_________________
| Machine: PR System One REMStar 60 Series Auto CPAP Machine |
| Additional Comments: Started XPAP 04/20/07. APAP currently wide open 10-20. Consistent AHI 2.1. No flex. HH 3. Deluxe Chinstrap. |
I currently have a stash of Nasal Aire II cannulas in Small or Extra Small. Please PM me if you would like them. I'm interested in bartering for something strange and wonderful that I don't currently own. Or a Large size NAII cannula.
Thanks Babette!
I think I will ask for a full face mask on Tuesday, at least to try. I wear my mask every night faithfully and am committed to working out all the problems. I want my life back! That short week of getting enough sleep was awesome and I think my life will change drastically once the problems are all worked out.
I am sorry too that I can't make it to Seattle on June 2nd. My daughter's bridal shower is that day and my niece is having a fair at Bastyr University later on. I am so grateful to have found this site and all the support!
Thanks for the tips on getting copies of my sleep studies, I will try your suggestions. I am also thinking of getting the software and card reader so I can get information on how I am doing on treatment.
I am sorry too that I can't make it to Seattle on June 2nd. My daughter's bridal shower is that day and my niece is having a fair at Bastyr University later on. I am so grateful to have found this site and all the support!
Thanks for the tips on getting copies of my sleep studies, I will try your suggestions. I am also thinking of getting the software and card reader so I can get information on how I am doing on treatment.
Nothing cures insomnia like the realization that it's time to get up!
Hey Robbie, if you're going to Bastyr in the PM, maybe you could hook up with us in the evening? Bastyr's just in Bothell. Just a thought. If you think you might be able to do three things in one day, PM me.
Good luck!
Barbara
Good luck!
Barbara
_________________
| Machine: PR System One REMStar 60 Series Auto CPAP Machine |
| Additional Comments: Started XPAP 04/20/07. APAP currently wide open 10-20. Consistent AHI 2.1. No flex. HH 3. Deluxe Chinstrap. |
I currently have a stash of Nasal Aire II cannulas in Small or Extra Small. Please PM me if you would like them. I'm interested in bartering for something strange and wonderful that I don't currently own. Or a Large size NAII cannula.
I think that would be fun!
I have to see how this all pans out first. I might be driving my other daughter to the Bastyr fair. She lives in Mt. Vernon (30 mi south of Bellingham) in which case, I would have to drive her back home. My neice lives in Everett. Plus it depends on how well my treatment goes next week. I've spent far too many evenings driving home half asleep. I won't do that anymore. I've just been very lucky (or stupid) that I haven't fallen completely asleep at the wheel in the past.
Nothing cures insomnia like the realization that it's time to get up!