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New here - so frustrated
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zzz_hi_decibel
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Post: #1
Angry New here - so frustrated
I’m new here but so happy to have found this forum. Excuse me if this goes long. I have been on my first CPAP machine for six days now. I cannot say the path here has been easy.

First I had my first sleep study two years ago but the lab only had one mask I could try (a full face mask) and with my pressure being pretty high if I bumped the mask during the sleep study the mask lost its seal and blew high pressure into my eyes. It took a while for the results of the study to get back to my doctor and they were never discussed and I left her as a patient shortly after.

So after finding a wonderful lady and getting married in July it wasn’t long before she complained of my terrible snoring. I don’t want to lose her and don’t want to sleep in separate rooms so I again decided to try to do something about the apnea which I have lived with for 15 to 20 years.

After being referred to a sleep specialist I had my first appointment with him and after a very short visit and him listening to my chest he referred me for a night sleep study. I was able to provide him the results of the first study, so this time I just had to do one night. I was in and out of his office in less than 10 minutes and paid a high deductible.

The sleep study felt like a joke to me. First even though I had emailed the results of the first study to them and spoke to the head of the program ahead of time letting her know I had a previous study the she failed to get that information to the tech. So the tech barely knew my name, had another patient and I was made to feel second fiddle since he was on his second night.

Even though the doctor’s order said I was there for the second night, she indicated she had to re-certify me as having sleep apnea. So rather than getting to spend the time trying different masks and pressures I had to waste time “being evaluated.” Finally once she determined that I had sleep apnea (big surprise) I got to try the first mask. I woke with a sore nose so I switched to a second mask and about an hour later woke up with a feeling of drowning in air. At that point I asked the tech for the pressure the system was set at so I could discuss that with the doctor and she told me that she “could not discuss my diagnosis with me.” I pointed out to her I had not asked for a diagnosis but just asked for the pressure setting so I could have an educated discussion with the doctor. She still refused and the fact that she did not have my information when I arrived and then would not tell me the pressure left me very angry and wide awake.

I do have to give the tech credit for one thing she was good about sharing information about different things to ask for with the CPAP machine such as altitude adjust, ramp, C-Flex and portability.

Then I had to wait several weeks for my appointment with my very busy specialist. Once I got in his office again he had the results of the study, clicked around on the computer for several seconds and sat there pretty quiet. Since he wasn’t saying much I brought up some of the things the tech had mentioned which he nodded and wrote down and then handed me a prescription. Again I got to pay my high deductible for less than a ten minute visit and me telling him more than he told me.

One of the other things the tech had mentioned was that there were a lot of agencies that provided the machines and suggested to make sure I found one I liked and if I had a problem it would be easy to switch. But when finished with the doctor his staff handed me ONE vendor name and sent them my information. The next day I called and asked could they send me names of more agencies and she stated that I was welcome to look them up online myself. (nice I bet the company gives them a kick back)

I have to say I was very happy with the gentleman who delivered and set up my machine. He also has sleep apnea and was VERY knowledgeable about the machine.

After the first few hours of being on the machine I felt like the ramp setting was way too low and struggled just to breath with it on. (It was set on 4) I figured out how to change that setting and raised it to 8 since my regular pressure was set on 14.

After being on the machine 5 nights I have woken up every 2 hours and do feel like I am stopping breathing frequently. I wake up feeling tingly and needing air. So I called the specialist’s office and asked could I speak to him on the phone and was told “No. He does not talk to patients on the phone.”

Unfortunately I work an hour’s drive away from home and the doctor’s office. So to see him I have to take off a half day of work. I really do not feel it necessary to have to take a 3rd half day off work just to be in his office less than 10 minutes for him simply to say, “yes you need your pressure setting increased.” (duh, I know that already.) And I really don’t want to pay him another high deductible.

I am very happy my CPAP machine came with a manual and I have read how to do it and bumped up the setting from 14 to 15. From already having read some of the posts here it doesn’t sound like a big deal and if I struggle with the new pressure I can always turn it back down one.

Anyway sorry to ramble on but I have just been SOOOO frustrated.
04-11-2012 09:01 PM
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PaulaO2 Offline
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Posts: 8,065
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm

Sex: Undisclosed
Location: western NC, USA

Post: #2
RE: New here - so frustrated
First, Welcome to ApneaBoard! Welcome

Second, Welcome to the World of Hose Heads!

Third, slow down. It's okay. Is your machine data capable? Meaning does it have a memory card? If it does, go here:
http://www.apneaboard.com/forums/Forum-Private-Files-and-Links

I don't think your Resironics machine can use ResScan but it most likely can be used with SleepyHead. It is a software program that lets you see how you are doing. But it only works, of course, if your machine is collecting data other than hours used.

15 is a very high pressure to start off with. It will take some getting used to. Not just you mentally but your body as well. 6 nights is not very long.

Don't mess with the pressure yet. Raising it may not be the answer. It can actually make it worse. Sometimes, raising the pressure can cause central apnea events (where the brain decides you don't need to breathe).

Does your lovely lady say your snoring is the same, worse, or better? It could be you are having less events then have a bad one which, finally, wakes you up enough that now you notice. You were waking up before, just not enough to notice. Your body has to adjust to the new normal and it probably is having trouble with it.

Give it some more time. Keep working at it.

Consider sitting at home during the day with the mask and machine on. Get your body and brain used to the pressure and the mask. Maybe wear it while watching television or reading.

You can also call the supplier. If you liked him well enough, he may have advice as well.
04-11-2012 09:17 PM
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zzz_hi_decibel
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Post: #3
RE: New here - so frustrated
(04-11-2012 09:17 PM)PaulaO2 Wrote:  First, Welcome to ApneaBoard! Welcome

Second, Welcome to the World of Hose Heads!

Third, slow down. It's okay. Is your machine data capable? Meaning does it have a memory card? If it does, go here:

I don't think your Resironics machine can use ResScan but it most likely can be used with SleepyHead. It is a software program that lets you see how you are doing. But it only works, of course, if your machine is collecting data other than hours used.

15 is a very high pressure to start off with. It will take some getting used to. Not just you mentally but your body as well. 6 nights is not very long.

Don't mess with the pressure yet. Raising it may not be the answer. It can actually make it worse. Sometimes, raising the pressure can cause central apnea events (where the brain decides you don't need to breathe).

Does your lovely lady say your snoring is the same, worse, or better? It could be you are having less events then have a bad one which, finally, wakes you up enough that now you notice. You were waking up before, just not enough to notice. Your body has to adjust to the new normal and it probably is having trouble with it.

Give it some more time. Keep working at it.

Consider sitting at home during the day with the mask and machine on. Get your body and brain used to the pressure and the mask. Maybe wear it while watching television or reading.

You can also call the supplier. If you liked him well enough, he may have advice as well.

Thank you so much for your reply. I guess the biggest part of my frustration is that the doctor has said less then 200 words about anything and then the refusal to speak on the phone is just rediculous. My machine does have the memory card. I will look into getting that software.

My wife says that I am not snoring at all. I am very happy that I am leaving my mouth closed at night, hence the no snoring.

I feel like I have adjusted pretty well to the mask althrough my nose is SOOO sore after a few hours. In the AM I feel like that other person who posted about hardly feeling the pressure. I've just worried about the waking eppisodes and feeling out of breath. But maybe your right that I need to be more patient. Ironic, if my doctor would have spoken with me for two minutes I probably would have felt better like I do now after reading your post.

Thanks
04-11-2012 09:38 PM
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zonk Offline

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Posts: 7,908
Joined: Feb 2012

Machine: A10 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Activa LT
Humidifier: Integrated /ClimateLineAir
CPAP Pressure: 9/13
CPAP Software: ResScan

Other Comments: CPAP since Nov 2010

Sex: Male
Location: Australia

Post: #4
RE: New here - so frustrated
Hi zzz_hi_decibel
Your machine REMstar Plus C-Flex don,t record any efficacy data, AHI, breakdown of events or leak ...just hours used to met insurance requirement and if wanted see data than you need the PR System One Pro C-Flex/Auto A-Flex
04-11-2012 09:48 PM
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PaulaO2 Offline
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Posts: 8,065
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm

Sex: Undisclosed
Location: western NC, USA

Post: #5
RE: New here - so frustrated
Yeah, I recently saw a spine surgeon. The first visit, the appt was over 2hrs late (after getting the appt 4 mos prior) and I saw him for 3 minutes. He never touched me. I saw him again two weeks later. He couldn't remember the images that he was basing his opinion on and again, he never touched me. Saw him for <5 minutes. The neurologist he referred me to was very kind and well worth the pain of the other "doctor". So it worked out.

If your nose is sore, you may have too large a set of nasal pillows. Or the mask is too tight. Or do you mean inside your nose? Ayr (and other companies) make a nasal gel stuff to use inside your nose prior to putting on the mask. It is like a moisturizer. I've had to use it during allergy season and the like when my nose is overly sensitive.

Don't be like me and use lip balm with menthol! Good golly that burned!

By the way, you can enter your reply in the box at the very bottom vs hitting the 'reply with quote' button.

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
04-11-2012 09:48 PM
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zzz_hi_decibel
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Post: #6
RE: New here - so frustrated
Wow so it is exactly as I thought, they reffered me to the company that would give them the kickback, and the cheapest machine that provides the least data, why am I not surprised. I will be on the phone with them tomorrow.
04-11-2012 10:00 PM
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SuperSleeper Offline

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Posts: 9,970
Joined: Feb 2012

Machine: PR System One REMstar Auto (DS560)
Mask Type: Nasal pillows
Mask Make & Model: ResMed Mirage Swift II
Humidifier: none
CPAP Pressure: 12.5 - 18.5 cmH20 (auto range)
CPAP Software: SleepyHead

Other Comments: Have diabetes Type II

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Location: Illinois, USA

Post: #7
RE: New here - so frustrated
(04-11-2012 10:00 PM)zzz_hi_decibel Wrote:  Wow so it is exactly as I thought, they reffered me to the company that would give them the kickback, and the cheapest machine that provides the least data, why am I not surprised. I will be on the phone with them tomorrow.

Durable Medical Equipment (DME) companies usually get a flat fee for distributing a CPAP of around $1500 from Medicare or Insurance (which follow Medicare guidelines and fee structures, usually).

They get paid $1500 no matter what machine they give you, so they have a vested financial interest in giving you the cheapest machine possible, allowing them to pocket the difference in price.

So, if you have a low-end, non-data-capable standard CPAP that costs them $500, they pocket $1000. (1500-500)

If they give you a higher end data-capable APAP that costs them $1000, they pocket $500 (1500-1000).

Many times you must INSIST upon a data-capable machine and tell them that you KNOW what they get paid from insurance or Medicare. They will try to bamboozle you into thinking that this is not the way it works, or they'll try to get you to pay the difference so they can make more profit, but you need to stand your ground firm and tell them you're not paying a cent more and you expect a data-capable machine, or you'll walk out the door and do business with some other DME.

If they think they're going to lose your business, they usually come around and give you what you want.... because some profit is better than no profit. And if they still refuse to give you a data-capable machine, walk out the door and find a DME that is not so greedy.

SuperSleeper
Apnea Board Administrator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.

04-11-2012 10:10 PM
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zonk Offline

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Posts: 7,908
Joined: Feb 2012

Machine: A10 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Activa LT
Humidifier: Integrated /ClimateLineAir
CPAP Pressure: 9/13
CPAP Software: ResScan

Other Comments: CPAP since Nov 2010

Sex: Male
Location: Australia

Post: #8
RE: New here - so frustrated
(04-11-2012 10:00 PM)zzz_hi_decibel Wrote:  Wow so it is exactly as I thought, they reffered me to the company that would give them the kickback, and the cheapest machine that provides the least data, why am I not surprised. I will be on the phone with them tomorrow.
Good luck. You don,t want any Phillips Respironics machine with Plus in the name
http://respironicsremstars.respironics.com/
................................................................................​.........
Also you don,t want any ResMed S9 machine with Escape in the name
S9 Specifications guide and comparison chart
http://www.resmed.com/us/products/s9_ser...nc=dealers
(This post was last modified: 04-11-2012 10:51 PM by zonk.)
04-11-2012 10:17 PM
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Sleepster Offline
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Machine: ResMed AirCurve10 VAuto
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Mask Make & Model: F&P Simplus
Humidifier: HumidAir and SlimLine Hose
CPAP Pressure: MaxI 13.6 | MinE 5.2 | PS 4.4
CPAP Software: ResScan SleepyHead

Other Comments: Diagnosed Nov 2011. Conquered aerophagia.

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Location: Houston, Texas

Post: #9
RE: New here - so frustrated
(04-11-2012 09:01 PM)zzz_hi_decibel Wrote:  But when finished with the doctor his staff handed me ONE vendor name and sent them my information.

So, let's focus on the positive. This DME is the one recommended by the doctor so presumably they have an established working relationship. You can state your concerns to this DME who can in turn relay them to your doctor. That's the arrangement I have so perhaps that's the one you have, too.

The DME can then get back with you, saving you a doctor's visit.

You've got the Remstar Plus. The Remstar Pro is only a few dollars more and it's data capapble so tell your DME that if he won't switch it out for a small fee, you want to return your machine to him and get your money back. Meanwhile, you can find a DME who will give you the machine you want and who will work with your insurance company. You should have a 30-day return policy, so don't let that expire.

For the nose irritated by the nasal pillows you can get HPA Lanolin at any drug store. (It's marketed as a product for nursing mothers to soothe sore nipples). Using a q-tip just smear a small dab inside each nostril.

Congratulations. You're well on your way to getting acclimated to CPAP therapy. It will get better as time goes by. Right now the machine is new to you, it keeps waking you up. You used to wake up with apneas, so your body is used to that. It has to now get used to you having far fewer apneas, so you don't have to keep waking up to breathe. But you've a pressurized hose blowing air into your face, so your has to adjust to that, too.

That's a lot of stuff for your body to adjust to, so it's no wonder you keep waking up. It'll get better as time goes by. Just be patient. And remember you have reduced the stress on your cardiovascular system caused by sleep apnea, lowering your risk for a heart attack or a stroke somewhere in your future, and drastically improved the quality of that future life.

And your spouse is happy because you don't snore! That's a lot of good stuff!!

Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
04-12-2012 06:56 AM
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CHanlon Offline

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Joined: Mar 2012

Machine: ResMed S9 Autoset
Mask Type: Nasal mask
Mask Make & Model: ResMed Activa LT
Humidifier: ResMed Hi5
CPAP Pressure: 12 -20
CPAP Software: ResScan SleepyHead

Other Comments: Mirage Activa LT nasal mask

Sex: Male
Location: Ontario, Canada

Post: #10
RE: New here - so frustrated
(04-12-2012 06:56 AM)Sleepster Wrote:  
(04-11-2012 09:01 PM)zzz_hi_decibel Wrote:  But when finished with the doctor his staff handed me ONE vendor name and sent them my information.

So, let's focus on the positive. This DME is the one recommended by the doctor so presumably they have an established working relationship. You can state your concerns to this DME who can in turn relay them to your doctor. That's the arrangement I have so perhaps that's the one you have, too.

The DME can then get back with you, saving you a doctor's visit.

You've got the Remstar Plus. The Remstar Pro is only a few dollars more and it's data capapble so tell your DME that if he won't switch it out for a small fee, you want to return your machine to him and get your money back. Meanwhile, you can find a DME who will give you the machine you want and who will work with your insurance company. You should have a 30-day return policy, so don't let that expire.

For the nose irritated by the nasal pillows you can get HPA Lanolin at any drug store. (It's marketed as a product for nursing mothers to soothe sore nipples). Using a q-tip just smear a small dab inside each nostril.

Congratulations. You're well on your way to getting acclimated to CPAP therapy. It will get better as time goes by. Right now the machine is new to you, it keeps waking you up. You used to wake up with apneas, so your body is used to that. It has to now get used to you having far fewer apneas, so you don't have to keep waking up to breathe. But you've a pressurized hose blowing air into your face, so your has to adjust to that, too.

That's a lot of stuff for your body to adjust to, so it's no wonder you keep waking up. It'll get better as time goes by. Just be patient. And remember you have reduced the stress on your cardiovascular system caused by sleep apnea, lowering your risk for a heart attack or a stroke somewhere in your future, and drastically improved the quality of that future life.

And your spouse is happy because you don't snore! That's a lot of good stuff!!

You might also want to work with your DME on different mask solutions - if pillows make your nose sore, you might want to try a nasal mask, etc. They're a little bulkier, but I found with the higher pressure (mine averages 16.5 at 95th percentile) that the nasal mask worked better then pillows, and was a lot more comfortable - the seal is on your face around your nose, rather then on your nostrils.
04-12-2012 09:44 AM
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