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Feeling worse after a month with CPAP
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cheesehead91182 Offline

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Post: #1
Feeling worse after a month with CPAP
For as long as I can remember I've had problems sleeping at night and staying awake in the day. So much so that I got fired from a job in '08 for dozing off and had an accident from falling asleep while driving in '09. After the accident I finally went to the doctor and they had me do a sleep study. The doctor had me lose weight, I was 220, I got down to 185 and that didn't help the issues. The sleep study came back inconclusive and they wanted to do another one but after receiving the bill for the first one I said forget it, because I now had a job where I as long as I did my work they don't care if I doze off.

Well flash forward to this January, I'm at the same job, and its pretty much a dead end job, no chance for a raise or promotion, so started looking for another job. I got offered a job that would be a 20k pay raise, however I was so afraid of getting fired from that job for dozing off I let them know about my issues. They wanted a letter from my doctor stating that these issues would not affect my work. So I went to the doctor and he refused to write the note but said he could treat the sleep apnea and I wouldn't have to do another study, they could just give me the CPAP machine right away. And he says if I use the machine every night for at least 4hrs I should see an improvement.

So I've been using the machine for over a month now and I feel worse, I used to just get really tired and doze off in the afternoon but now its happening in the morning as well. I think the problem is that I have a full mask and sometimes my face itches while sleeping and I have to take the mask off to scratch, also I toss and turn a lot and the mask and hose prevent me from doing that. So I went to see the doctor on Monday and told him that I feel worse. He said the machine is working and the Apnea has "gone away" because I'm only stopping breathing 3 times a night. So first he suggest I take sleeping pills or something to keep me awake, which refuse, because I'm not taking a medication unless they can explain why my body needs it. Then he suggests alternative treatments like a dental device that I'd use at night or some type of hose or straw I would sleep with that would suck in air, however he said these will require another sleep study be done which I cannot afford. So for now I told him I'd continue with the CPAP and hope that eventually my body will get used to sleep with this device.

However I was wondering does anyone have any advice or suggestions for me because I'm 31 years old have zero energy most of the time and I need to get a job where I make more money but I'm so concerned about getting fired for dozing off.
05-07-2014 10:55 AM
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pumpkln Offline

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Machine: S9 Autoset
Mask Type: Nasal pillows
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Post: #2
RE: Feeling worse after a month with CPAP
You may want to try a different style mask, one that is lighter and will allow you to toss and turn. Check out one of the suppliers on the supplier list, they have photos and reviews of most of the masks available.
You can also ask you sleep Dr. or DME about other types of masks.
05-07-2014 11:39 AM
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retired_guy Offline

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Post: #3
RE: Feeling worse after a month with CPAP
We need to know what kind of machine you have and what your experiences with it have been. What pressure is the machine set at? Are you experiencing significant leakage? (My guess is you are, since you talk about your face itching and removing your mask).

Apparently the apnea itself is being controlled to your Doc's expectations, but what is it actually?

To begin, read the label on the machine and tell us what you have.

And yes, pumpkln is probably correct that you would be happier with a nasal or pillows mask. But those will require getting into other dynamics such as do you breath through your mouth for instance.
05-07-2014 11:57 AM
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trish6hundred Offline

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Machine: Resmed S9 AutoSet for Her
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Post: #4
RE: Feeling worse after a month with CPAP
Hi cheesehead91182,
WELCOME! to the forum.!
You might ask to try a different type of mask, such as a nasal mask or a nasal pillows mask. If you are a mouth breather, you might ask for a chinstrap and see if that helps.
What machine do you have, and what is your pressure? This will help others to help you better.
Best of luck to you with your CPAP therapy and don't give up.
Edit: I'm sorry I had your forum name wrong, maybe I was sleep depribed that day, (Ha-Ha-Ha,) At least I'll use that excuse, (Ha-Ha,) End edit.

trish6hundred
(This post was last modified: 05-09-2014 10:35 PM by trish6hundred.)
05-07-2014 12:56 PM
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cheesehead91182 Offline

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Post: #5
RE: Feeling worse after a month with CPAP
(05-07-2014 11:57 AM)retired_guy Wrote:  We need to know what kind of machine you have and what your experiences with it have been. What pressure is the machine set at? Are you experiencing significant leakage? (My guess is you are, since you talk about your face itching and removing your mask).

Apparently the apnea itself is being controlled to your Doc's expectations, but what is it actually?

To begin, read the label on the machine and tell us what you have.

And yes, pumpkln is probably correct that you would be happier with a nasal or pillows mask. But those will require getting into other dynamics such as do you breath through your mouth for instance.

I have an auto CPAP machine and the pressure is set at 4.5. I haven't experienced that much leakage and of the couple times I did I just adjusted the mask. As for the mask, I have to use the full mask because I sleep with my mouth open.

As for the doctor I originally thought he was treating me so I wouldn't be tired all the time but it looks like he is satisfied with the sleep Apnea being under control. Now they also have me seeing a sleep therapist and he said working with her should help, however when I saw her previously she thought the CPAP would fix everything.
05-07-2014 12:57 PM
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PaulaO2 Offline
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Post: #6
RE: Feeling worse after a month with CPAP
Retired-guy is right, as usual. Is the doctor looking at the data on the card? And you only have 3 events a night?

What machine do you have? You say you have an auto CPAP but you have the pressure set to just one pressure. With your auto, it would be best to set it to a range so it can react to whatever your needs are throughout the night. For example, if the pressure he has you on now is set to 4.5, then you can set the minimum to that and the max to, say, 8. Give it at least 7 days to collect data then view it to see how you are doing.

My wild guess shot in the dark based on what little you have given us says the set pressure isn't enough. OR there is something else going on. Sleep apnea is just one disorder that causes daytime sleepiness.

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

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05-07-2014 05:29 PM
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cheesehead91182 Offline

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Post: #7
RE: Feeling worse after a month with CPAP
(05-07-2014 05:29 PM)PaulaO2 Wrote:  Retired-guy is right, as usual. Is the doctor looking at the data on the card? And you only have 3 events a night?

What machine do you have? You say you have an auto CPAP but you have the pressure set to just one pressure. With your auto, it would be best to set it to a range so it can react to whatever your needs are throughout the night. For example, if the pressure he has you on now is set to 4.5, then you can set the minimum to that and the max to, say, 8. Give it at least 7 days to collect data then view it to see how you are doing.

My wild guess shot in the dark based on what little you have given us says the set pressure isn't enough. OR there is something else going on. Sleep apnea is just one disorder that causes daytime sleepiness.

The System I have is the One REMstar Auto CPAP and Humidifier. I have no control over the pressure setting, the system has a modem in it and the doctor controls the setting. Since he says its working, doesn't want to change the pressure. You could be right about something else going on, it just seems like the doctor doesn't want to investigate it any further, just give me some drugs to keep me wake or make me sleep, and personally I'm not gonna just take drugs without an explanation as to why I need them.
05-08-2014 09:01 AM
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CHanlon Offline

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Post: #8
RE: Feeling worse after a month with CPAP
(05-08-2014 09:01 AM)cheesehead91182 Wrote:  
(05-07-2014 05:29 PM)PaulaO2 Wrote:  Retired-guy is right, as usual. Is the doctor looking at the data on the card? And you only have 3 events a night?

What machine do you have? You say you have an auto CPAP but you have the pressure set to just one pressure. With your auto, it would be best to set it to a range so it can react to whatever your needs are throughout the night. For example, if the pressure he has you on now is set to 4.5, then you can set the minimum to that and the max to, say, 8. Give it at least 7 days to collect data then view it to see how you are doing.

My wild guess shot in the dark based on what little you have given us says the set pressure isn't enough. OR there is something else going on. Sleep apnea is just one disorder that causes daytime sleepiness.

The System I have is the One REMstar Auto CPAP and Humidifier. I have no control over the pressure setting, the system has a modem in it and the doctor controls the setting. Since he says its working, doesn't want to change the pressure. You could be right about something else going on, it just seems like the doctor doesn't want to investigate it any further, just give me some drugs to keep me wake or make me sleep, and personally I'm not gonna just take drugs without an explanation as to why I need them.
Oh of course you have control over the settings. You just don't know it yet.

Remember, this is *your* health, not his, you pay him for his services, he's not doing you a favour. If you'er not happy with the results so far, then he's going to need to adjust to you needs, not the other way around. Suggest, politely, that you'd like to actually use the APAP in the manner it was intended - automatic adjusting. Tell him it's not working for you, you feel worse, and if that's all you're getting, the whole thing is an exercise in futility.
05-08-2014 09:54 AM
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cheesehead91182 Offline

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Post: #9
RE: Feeling worse after a month with CPAP
(05-08-2014 09:54 AM)CHanlon Wrote:  
(05-08-2014 09:01 AM)cheesehead91182 Wrote:  
(05-07-2014 05:29 PM)PaulaO2 Wrote:  Retired-guy is right, as usual. Is the doctor looking at the data on the card? And you only have 3 events a night?

What machine do you have? You say you have an auto CPAP but you have the pressure set to just one pressure. With your auto, it would be best to set it to a range so it can react to whatever your needs are throughout the night. For example, if the pressure he has you on now is set to 4.5, then you can set the minimum to that and the max to, say, 8. Give it at least 7 days to collect data then view it to see how you are doing.

My wild guess shot in the dark based on what little you have given us says the set pressure isn't enough. OR there is something else going on. Sleep apnea is just one disorder that causes daytime sleepiness.

The System I have is the One REMstar Auto CPAP and Humidifier. I have no control over the pressure setting, the system has a modem in it and the doctor controls the setting. Since he says its working, doesn't want to change the pressure. You could be right about something else going on, it just seems like the doctor doesn't want to investigate it any further, just give me some drugs to keep me wake or make me sleep, and personally I'm not gonna just take drugs without an explanation as to why I need them.
Oh of course you have control over the settings. You just don't know it yet.

Remember, this is *your* health, not his, you pay him for his services, he's not doing you a favour. If you'er not happy with the results so far, then he's going to need to adjust to you needs, not the other way around. Suggest, politely, that you'd like to actually use the APAP in the manner it was intended - automatic adjusting. Tell him it's not working for you, you feel worse, and if that's all you're getting, the whole thing is an exercise in futility.


I told him I feel worse and that I'm waking up more times at night. He said from the data he got form the machine the Apnea is under control so there is no to adjust the setting.
05-08-2014 10:06 AM
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CHanlon Offline

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Machine: ResMed S9 Autoset
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CPAP Pressure: 12 -20
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Other Comments: Mirage Activa LT nasal mask

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Post: #10
RE: Feeling worse after a month with CPAP
(05-08-2014 10:06 AM)cheesehead91182 Wrote:  
(05-08-2014 09:54 AM)CHanlon Wrote:  
(05-08-2014 09:01 AM)cheesehead91182 Wrote:  The System I have is the One REMstar Auto CPAP and Humidifier. I have no control over the pressure setting, the system has a modem in it and the doctor controls the setting. Since he says its working, doesn't want to change the pressure. You could be right about something else going on, it just seems like the doctor doesn't want to investigate it any further, just give me some drugs to keep me wake or make me sleep, and personally I'm not gonna just take drugs without an explanation as to why I need them.
Oh of course you have control over the settings. You just don't know it yet.

Remember, this is *your* health, not his, you pay him for his services, he's not doing you a favour. If you'er not happy with the results so far, then he's going to need to adjust to you needs, not the other way around. Suggest, politely, that you'd like to actually use the APAP in the manner it was intended - automatic adjusting. Tell him it's not working for you, you feel worse, and if that's all you're getting, the whole thing is an exercise in futility.


I told him I feel worse and that I'm waking up more times at night. He said from the data he got form the machine the Apnea is under control so there is no to adjust the setting.

Personally, and for myself... I'd change it myself. In fact, I have... often. Of course, I can't advise you to do the same, but I did, and then I printed out my results and took them to my sleep MD... and showed him I was right.
05-08-2014 10:13 AM
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