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More tired after using CPAP, but no physical discomfort; Experiences
Topic Started: Feb 9 2011, 03:49 AM (8,399 Views)
mrgrifter
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I just joined this list today, because I was so frustrated with my doctor today, I wanted to get some kind of other input. He would not listen to what I was trying to say at all.

I have been tested positive in the past (2004-6) for apnea, but never wanted to use a CPAP. I had some of the minor out patient surgery in an ENT's office, like turbinates and uvula. I've been having really intense terrible sleep problems the last year, so I decided to give this another go. The sleep study said I did have moderate apnea (which is funny, since I used to have severe, the tests said). So in the test center, they woke me up after 2 hours of sleep and put the CPAP machine on me. I slept the rest of the night fine, and the next morning I felt more rested and awake than I had in years.

So I was very excited to get the machine going. I am told this is the same setup as what they used in the lab, but when I wear it at night, I feel more tired the next day. I am NOT having any kind of physical discomfort from the mask - it's not uncomfortable, I can fall asleep with it no problem, I don't wake up with it, no sensations of smothering, etc. It's just that I feel more tired the next day when I use it.

I asked the doctor about raising the pressure and he was extremely dismissive. He kept saying well the test showed you did fine with 8.0 pressure, so it makes no sense to change it. I pointed it out it was one test, my blood pressure is different every time I come into the doctor's office, why wouldn't my sleep also vary? Maybe I gained weight since the test? He was having none of it. In fact, he kept saying "if you don't like wearing the mask" and "well, you DO have sleep apnea, so we have to treat THAT." I kept repeating I was not complaining about wearing the CPAP physically or logistically, and I was certainly not denying I had sleep apnea, but it was if he simply couldn't accept what I was saying. I have tried psychiatric medications that produced side effects in me that a doctor said "it can't do that." As we all know, medications affect people differently, especially when you're already on other meds.

So this was completely frustrating. I'm stuck with him because I have Kaiser and you have to go to their limited number of doctors in the group, and I think he's the only sleep person in their neurology unit.

Has anyone ever had difficulty dealing with their sleep doctor like this?

Has anyone ever gotten worse after starting the CPAP, but NOT from a physical discomfort issue related to the mask?

And has a doctor ever told you that changing the settings simply wouldn't do anything?

John

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SuperSleeper
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mrgrifter
Feb 9 2011, 03:49 AM
Has anyone ever had difficulty dealing with their sleep doctor like this?

Has anyone ever gotten worse after starting the CPAP, but NOT from a physical discomfort issue related to the mask?

And has a doctor ever told you that changing the settings simply wouldn't do anything?

John
Hi John - welcome to Apnea Board!

I suspect the answer for many folks to your three questions are YES, YES, and YES.

It's a shame that some doctors are not more responsive to their patient's sincere questions. Sometimes it's almost like they don't want to be bothered, which is sad for someone who is supposed to help people.

I would recommend that you seriously consider getting an auto-CPAP machine that will automatically adjust to your ongoing pressure needs. This by-passes the need to stick to one constant pressure that may (or may not) be adequate enough to stop the majority of apnea events. These machines almost negate the need for a new sleep study when your physical variables change, such as weight gain or loss.

Read more about the benefits of auto-CPAP machines here:

http://www.apneaboard.com/APAP.htm

The fact is that your pressure needs change as you sleep, and as other variables change, such as what position you're sleeping in, whether you're sick, have a stuffy nose, how much exercise you got the day before, what you eat and drink, any weight changes, etc., etc. There is just no way that a constant pressure CPAP machine can deliver as good of therapy as an auto-CPAP, in most instances.

If you decide to try an auto-CPAP, in order to get the doctor to agree with you, you may need to become a squeaky wheel... be nice and polite, but tell them that you don't think you're going to be satisfied with your therapy without an auto-CPAP. They may poo-poo your insistance at first, but keep at it, and if you sense that the doc is starting to get frustrated with your instance, I bet he/she will eventually give in just to get you out of their hair.

But if not, you can be like me.... I don't have health insurance of any type, and I decided to purchase an auto-CPAP (ResMed S9 AutoSet) out of my own pocket. Not cheap, but it's one of the best decisions I've made for my sleep apnea treatment.

Alternatively, you can change your own CPAP pressure to a slightly higher level and see if it helps. You can get a copy of the Clinician Setup Manual for your machine (which will show you how to change the pressure) by following the directions on this page:

http://www.apneaboard.com/CPAP%20Adjustment.htm

Also, be careful about adjusting your pressure to quickly too much. Although the page isn't finished, here's some basic advice about adjusting pressures on a constant-pressure CPAP machine:

http://www.apneaboard.com/methods.htm

Hope this helps, feel free to ask more questions, if you need answers.

:)

SuperSleeper
Apnea Board Administrator
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jeffy1958
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mrgrifter;

Fortunately I've had no issues with my sleep doctor / nurse pract. Both are very, very good. However; I remeber when I started Cpap therapy last October. How crappy I felt for the first few weeks. Wondering what the heck was the point. I stayed with it, dove head first into my treatment, and I can say I've become a "CPAP JUNKY". In fact, about a week ago I fell asleep on the couch, did not use my machine, suffered all day for it. Not sure if it is physical or psychological. Don't matter. What matters how I felt and how I feel. Stick with it, get a good attitude about your treatment / therapy, keeping in mind this is not a cure. This is Cpap therapy to treat a condition, not cure a disease!!!

As for your Doctor; I can relate as I've had a cardiologist who didn't give a ... I went to a different one and haven't looked back. Maybe you can do the same with your sleep Dr.??? Is finding a different one an option? Yes it's a pain starting over, but it may be a necessary evil for the betterment of your life and lifestyle.
http://s7.zetaboards.com/Apnea_Board/topic/8469114/
How To Get The Perfect Mask Fit

http://s7.zetaboards.com/Apnea_Board/topic/8436280/
How important is Quality Sleep to your heart

What The Mind Can Conceive and Believe - The Body Will Achieve
Positive Attitude = Positive Results / Negative Attitude = Negative Results
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cobra4x4
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It is normal to feel crappy (almost worse than before you started cpap therapy) most often close to the 1 month mark as your body adjusts to the positive effects of the therapy. It usually lasts a few weeks, the trick is just keep using it regardless of how it seems and you'll start seeing very subtle improvements. This therapy does take time to really get all the positives to show up.

Although I have not had any issues with my doctors either, both were all for any help to treat my sleep apnea including writing a specific prescription for an auto cpap.
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Charles
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This is my first post on the forum. I found it researching why I feel like crap after using my CPAP. I have probable had SA since about 1970, but have finally been threatened by my wife enough to seek medical assistance. I started using the SA machine on May 23rd averaging about 5 hours a night of use. Hopefully as I adjust to the treatment I will sleep longer with it. Every day I have noticed I am more tired than before starting the use of it. Also now am hit with the nods in the mid afternoon and seem to have a different feeling in my chest.
After reading your posts here I see I need to give it a few more weeks to let my body adjust to the treatment.
Now to convince the VA it's because of agent orange and rock mountain spotted fever :)
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JudgeMental
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Welcome Charles. Sometimes, sadly, it takes a threat (as you say) from a spouse to give us a wake-up call. If (you) think that you probably have had sleep apnea since 1970, then I suspect thats true, AND that is a long long time for the apnea events to wreck havack on your heart and other body functions. Your sleep debt is huge.

As you have observed from other posts, adjustment to the therapy of CPAP is not an overnight occurance. I think the "different feeling in the chest" is from the involuntary expansion of your lungs during the night. That feeling will deminish as time rolls on and you become more comfortable during the therapy. 5hours of useage or therapy is actually pretty good for a start.



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anneliza
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I'm reassured to read this. I yawned all day long for a couple or three weeks after I started my cpap and felt more exhausted than ever. I figured it was my body so excited about real sleep that it wanted more! Now, in my fourth week, I am starting to get some benefits. My diabetes is easier to control, and I don't nod off at work or behind the wheel anymore. And I endorse getting an auto pap, I love mine. The dr said something about once my pressure is figured out we could set it, and I said no. I think the auto feature is brilliant, since it changes all the time -- I don't think a fixed pressure would be as comfortable or effective, from what I have been reading. My AHI is still going down, so I'm happy with my therapy.
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Charles
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JudgeMental
Jun 1 2011, 05:52 PM
Welcome Charles. Sometimes, sadly, it takes a threat (as you say) from a spouse to give us a wake-up call. If (you) think that you probably have had sleep apnea since 1970, then I suspect thats true, AND that is a long long time for the apnea events to wreck havack on your heart and other body functions. Your sleep debt is huge.

As you have observed from other posts, adjustment to the therapy of CPAP is not an overnight occurance. I think the "different feeling in the chest" is from the involuntary expansion of your lungs during the night. That feeling will deminish as time rolls on and you become more comfortable during the therapy. 5hours of useage or therapy is actually pretty good for a start.



Thanks,
I had a sleep apnea study scheduled about 8 years ago but due to it being a rather distant drive and with work I ended up not going. My doctor informed a few months ago that they had one here locally now which left me no out. I am looking forward to the benefits of the cpap and hope the energy will come back. I normally work out 3 to 4 times a week including elliptical and or jogging, but the past two weeks I have not had the energy.
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JudgeMental
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Anneliza.. You spoke the magical words.. ""My AHI is still going down and I am happy with my therapy"" :congrats:
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Charles
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I have had/used the CPAP 15 nights in a row now. I noticed a few times when I change positions during the night that it forces air down my throat into my stomach and I end up belching a few times to clear it. I have woken up a couple of mornings with a bloated feeling, assuming this has happened again while I am asleep. Has anyone experienced this problem ?
tks
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JudgeMental
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Yes Charles, this is a common malady from the intrusion of forced air into your intestines. Most of it is supposed to go down the windpipe but a lot will go into the intestines. Nothing serious about this problem unless it gets overly painful. I expect that you will get used to this very quickly. Passing of gas in the am is also guite normal.

Has the "different feeling in your chest" subsided?

With no other complaints, it sounds like you are adjusting nicely. Good Luck
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Charles
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thanks,
yes I am averaging about 5 hours use a night so far, I expect that to increase as I get accustom to it. The unusual feeling in the chest is gone and am not as tired in the afternoon every day now as before. Now to find something to remove the forced air early in the day and I should be doing great.
again thanks for your help.
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zonk
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Charles
Jun 6 2011, 10:30 AM
thanks,
yes I am averaging about 5 hours use a night so far, I expect that to increase as I get accustom to it. The unusual feeling in the chest is gone and am not as tired in the afternoon every day now as before. Now to find something to remove the forced air early in the day and I should be doing great.
again thanks for your help.

It seem that your perseverance with the therapy is paying off :congrats:
Good advice from JudgeMental as always , check out this thread about Aerophagia :
http://s7.zetaboards.com/Apnea_Board/topic/8347310/1/

Just a thought perhaps your doctor could lower cpap pressure a little to see if it take care of the bloating feeling or move you to auto pap .
Best of Luck :sleep-well:
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Charles
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The bloating isn't a constant thing seems it only happens when I sleep a certain way, so am watching how am positioned as much as possible. Got up to 6.1 hours last night before taking it off, getting better. Still don't seem to have the energy I had before starting with the CPAP. But I will hang in there and see what happens.
Thanks all for the advice.
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ameriken
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I'm glad I found this thread. I was kindasorta 'specting things to change overnite once I started on the machine. I just started last Thursday night. I thought I might wake up with the claustrophobic feeling I had when I did the sleep study at the VA, but fortunately I've been able to sleep with the machine every night from sleep to wake up, which is about 8 to 9 hours. However while I do think I am slowly starting to feel better, it's not as amazing as I originally thought it would be. I still wake up with a run-down run-over feeling, and still drag a little during the day.

But I'm glad to hear that the instant results I was expecting are not necessarily realistic. I have no intention of quitting the machine, and have already fallen in love with it, but at least now I have hope that the results will eventually follow and this will give me the fortitude to wade through the nights of dry mouth and the morning expulsion of intestinal air. :P
Edited by ameriken, Jun 14 2011, 10:31 AM.
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