One Month In - Feeling Worse

I am on my first CPAP for a month now and I honestly believe I feel worse. In that month, I have put on over five pounds, I wind up taking Tylenol PM’s several times a week so I can get to sleep (almost never did that in the past) and unfortunately I’ve been rather ‘crabby’ in the last month and I still fall asleep on the couch around 8:30 pm. I do have high blood pressure (take Lisinopril) and I’ve seen the BP numbers get higher in the morning than prior to starting CPAP. Not sure if all of that is related to the CPAP or a coincidence.

My sleep study showed an AHI of 12.2 (~22 on my back and ~1 on my side – and I do not sleep on my back when I’m at home but they made me during my sleep study which I understand is the common practice). They also came in a few times because they thought they had equipment issues which honestly made it hard for me to sleep so they had me take two Tylenol PM’s to get to sleep. I never hit any REM that night. For the titration study the nasal mask was so tight I woke up with a cut on my face so I am very turned off to using a nasal mask.

Was prescribed the DreamStation PRO CPAP with a setting of 9 (ramp starts at 5). I use a humidifier and have a heated tube. I used AirFit pro P10 nasal pillows (for her although I’m a guy because that is all they had) for nearly most of the time and went for ‘refit’ and used the Nuanse Pro for the last two nights. The DME didn’t have any samples to try on so I basically had no choice and I was told by the first DME I just need to figure out for myself what nasal pillows fit me the best (so after two weeks of a raw mostrilsI settled on a size). It was still hurting my nose so they recommended the Nuanse pro nasal pillow.

I used to fall asleep nearly right away, but now with the CPAP I lay there for about an hour before I sleep. Then I still wake up over night once or twice so not seeing any improvement there. I go to bed around 9pm and wake up around 4am which hasn't changed much. My AHI according to Sleepyhead is averaging 0.9 (which was close to my sleep study results when I sleep on my side / stomach). The DreamStation says Mask fit around 99 to 100% each night, but SleepyHead seems to show a larger leak percentage although with the two days I used the new nasal pillows it seems a lot lower.

What is frustrating me is that I’m not that confident that I truly need a machine because I do not feel that my sleep study was representative of how I actually sleep and the supplier seems rather poor in terms of their service. I will talk to the doctor again because he said the only reason I qualified for a machine was due to higher blood pressure which runs in my family with my AHI being lower. My primary care did order a sleep study because of some symptoms that i had around being tired and lacking some concentration because all of my executive physicals including stress tests come back fine (although my T is on the low end of the range). Of course those symptoms could be related to OSA, but it could also be other factors like my stressful job which the CPAP seems to be adding another pain to.

Anyone have any experiences like mine of feeling worse or any suggestions because I’m about ready to just stop and go out of compliance and return the device. Thanks in advance.

CPAP Statistics
28 days of CPAP Data, between Fri Mar 31 2017 and Thu Apr 27 2017
Details Most Recent Last Week Last 30 Days Last 6 Months Last Year
CPAP Usage
Average Hours per Night 06:50 05:53 06:53 06:53 06:53
Compliance 100% 100% 100% 100% 100%
Therapy Efficacy
AHI 0.73 0.65 0.90 0.90 0.90
Obstructive Index 0.15 0.17 0.32 0.32 0.32
Hypopnea Index 0.58 0.49 0.56 0.56 0.56
Clear Airway Index 0.00 0.00 0.02 0.02 0.02
Flow Limitation Index 0.00 0.00 0.00 0.00 0.00
RERA Index 0.44 0.41 0.68 0.68 0.68
Leak Statistics
Average Leak Rate 4.24 9.06 10.15 10.15 10.15
90% Leak Rate 17.00 23.00 28.00 28.00 28.00
% of time above Leak Rate threshold 2.44% 11.56% 15.56% 15.56% 15.56%
Pressure Statistics
Average Pressure 9.00 8.43 8.53 8.53 8.53
Min Pressure 9.00 5.00 5.00 5.00 5.00
Max Pressure 9.00 9.00 9.00 9.00 9.00
90% Pressure 9.00 9.00 9.00 9.00 9.00
Average EPAP 9.00 8.69 8.74 8.74 8.74
Min EPAP 9.00 5.00 5.00 5.00 5.00
Max EPAP 9.00 9.00 9.00 9.00 9.00

My resp tech warned me it's not unusual for some people to feel worse during the first weeks of CPAP use. There are a lot of comfort issues to work out in finding the right mask for your face, accepting the presence of the equipment on your face, getting used to sounds of the machine, developing changes in bedtime routines to accommodate the new regimen, wondering if this therapy is really going to work, etc. You are going through a period of change, so it is normal to feel some anxiety/stress. As you become more acclimatized and take some control, I'm sure things will go more easily.

It sounds like your DME is not very helpful about getting you settled with a suitable mask. Were they just out of samples on the day you were seen; could you ask to try some different mask models? Would another DME have better service?

Please update your profile to show the equipment you are currently using. When the more experienced folk here come by, they will need this information and having it show regularly in your posts will reduce the number of times you are asked the question.

It looks like you have the Sleepyhead program, judging by the list of data you supplied. There is a preferred format for posting images from SH here, the link to which I have mislaid, so I trust other members will be able to provide that to you.

Getting used to CPAP is do-able. Just take one thing at a time, give yourself credit for each step you take, and know you're not alone.

Welcome aboard!
Jean

Im no sleep doctor but a pressure of 9?? For 12 events per hour? Thats what my study showed and they have me a a pressure of 4. Maybe your pressure is too high?

The severity (# of events/hr) has NOTHING to do with pressure needs. You can have 5 events but need a high pressure to keep YOUR airway open, and someone else with 70 events may only need a low pressure for THEIR airway. Don't mix apples and oranges.

DaisySmith wrote:Im no sleep doctor but a pressure of 9?? For 12 events per hour? Thats what my study showed and they have me a a pressure of 4. Maybe your pressure is too high?

pressure required has nothing to do with frequency of events.

Few thoughts... For starters, you said you did not experience REM during the diagnostic study. For that reason you cannot be certain that even when on your side your sleep apnea isn't worse than they were able to capture in that one night. Having a higher AHI during REM is common. When I first read your story I was prepared to say maybe you could just stay off your back and do fine. But seeing that you don't have evidence to support that action, I wouldn't be comfortable suggesting it. Maybe someone in the know can tell us what percentage of people with OSA are worse during REM. Do consider that if you are side sleeping at home and a variable pressure machine detects the need to increase the pressure during the night, it is detecting issues needing treatment.

I'm sorry to hear you didn't get the type of support that might have made your early experience a bit more comfortable. If you have mask issues from here on out, check in here to see how others have addressed similar issues.

Waking up a couple times a night in and of itself is not a concern. You have not had a comfortable mask so could not be expected to have adjusted while wearing a mask that hurts. If you remember a couple wakeups, there's a good chance there were more that you just don't remember. Stay in tune to this to see if over time other investigation is needed. A few of the other common contributors to fractured sleep are medication side effect, another sleep disorder, and some medical diagnoses. For the moment I'd assume this is an equipment issue unless it continues even after you have acclimated to comfortible equipment. As to how bad you feel, that's not surprising since you are still dealing with issues and not sleeping well. I've read on here that some attribute worsening fatigue when starting CPAP to the decrease in stress hormones in the body once the OSA is treated. Lots of changes in our body that can take time to find our new normal. Good luck going forward.

I am just a newbie ( only 46 days in the process ) but I did pick up that you gained 5 pounds in the past month, that is exactly what happen to me.
My APAP therapy is going well ( under 2 AHI ) but I am still dealing with the weight gain.

I'm a little over 1 month in as well and signed up here just to respond and let you know you aren't at all alone in feeling worse! I had to go back twice to find the right mask that worked for me but I can tell you that it made all the difference in the world as far as comfort goes and really did help with getting acclimated to the machine. I was at 66 events per hour during my sleep study and according to the machine every day I'm getting numbers of 3-4 events per hour now which would have you think I'd feel amazing but I've gained weight, my blood pressure is higher than it was prior to starting this and if anything I feel more tired and agitated every morning. I still wake up with headaches and more often than not I'm dizzy to the point of having to wait a few minutes before I get out of bed. I've of course googled a million things about side effects of the therapy and speculated which doesn't at all help. In the end I just have to think that obviously my OSA didn't get this bad over night, it's foolish to think that after just a few weeks I'm going to feel amazing. I'm going to give it another few months and see how it goes. I think one of the major issues is it doesn't sound as if you have a great support system through your doctor and that may make all the difference in getting adjusted. I'm sorry that you are having such a rough time but you are definitely not alone in this.

Thank you all for your responses. I do hate to see others having very similar challenges as i am. As someone said above, the support system around finding a good fitting mask has been extremely lacking which i am sure contributes to my challenges. I will continue with my CPAP for a little while longer and talk to my doctor about potentially another study to see if i can hit REM sleep during my study to see how my AHI is because i cannot continue to feel much worse than i ever did prior to having a CPAP if it isn't doing much for me.