Getting Started

[bobcpap]

Hi Everyone:

I'm looking forward to getting to know everyone. I'm going to download the Sleepyhead software everyone talks about tonight. I'm on my 3rd attempt, but going to stay committed.

How do we create signature file with our stats?

1st Attempt
Simply felt terrible during the 2 weeks of use. Oddly, I sleep perfectly thru the night right from day 1 (which is rare and certainly seems to indicate I need the machine) and felt okay in morning, but by 3pm I was an absolutely a zombie - foggy and sleepy and just felt terrible. Since my insurance didn't approve a sleep study initially, we weren't completely certain I had sleep apnea as my take home test only scored a 6 AHI so I decided to stop until we got approval for an overnight study. I thought maybe I didn't have it and was using CPAP needlessly making me feel worse.

2nd Attempt
5 weeks later (after authorization process, study, results), I used the machine for 1 night and got a terrible respiratory infection, which I had never had before. There is debate on here about if you can get an infection and the answer is YES! The DME didn't mention anything about cleaning (and I didn't research proper care myself - and own that mistake) and so I didn't clean the machine before re-using and it lead to a terrible infection. I'll spare you the symptoms, but it was scary and took 6 weeks to clear after antibiotics and steroids.

3rd Attempt
I'm now on Day 3 and experiencing that same 3pm crash, which is so frustrating. If I awoke groggy and slowly improved, I would not be concerned as many experience that and that seems logical to me. This getting worse as day goes on however is odd and would love to hear about others who experienced this as well. And, yes, I now clean it every day, which only takes 3 minutes in the morning.

I've seen two sleep medicine docs and they both said to give it at least a month and then see if I feel better as we all recover from sleep deprivation differently. The hard part is that I have a big corporate job and cannot afford to feel this badly for a month, but I'll take it one day at a time.

Thanks for listening and I would love to hear about others who started slowly and what they did to feel better. It's bizarre that I sleep great, but feel so terrible. I think I like the adjustable, but maybe once I see what my average is (if I still feel bad), I can try a steady air flow. I just found steady air way to intense to start and it scared me (I just wonder if long-term this can have effects on us and have heard some begin to develop central apnea's after years of CPAP use when they didn't have before and so I want to start slow and only give my body the air it seems to want, which APAP should do pretty well).

Bob
----
APAP: ResMed Airsense 10, Setting 5 - 15, Avg 9.4, 2 apneas a night
Sleep results: 20 AHI, no centrals, no RLS

[Julie]

Hi, and welcome. You said you had an 'infection', blamed it on the machine , but what are the chances you had the humidifier on a high setting unnecessary for ambient conditions, giving yourself a cold, congestion, etc? Happens when people either just don't realize the humidifier (and settings) is optional, not 'therapy', and you can play with settings (or turn it right off) whenever you want to, or else have the machine from the DME who input settings without any consideration of need or local conditions.

[bobcpap]

Hey Julie:

Thanks for the reply. I had the humidifier on 4, which I used with non problem for the two weeks I had previously used it and have been using it again. That was not the issue. I don't think we should treat these things as infallible objects. I think they can be great, but there are some risks and I think helping others realize that is well worth it. Had I seen more posts about ensuring to clean thoroughly, I would have done so and my intent with the post is to help others.

Best,
Bob

[SewTired]

Unless you had a totally filthy humidifier or mask, chances are the lung problem you got had nothing to do with the machine.

Are you going to bed EARLY enough? I know too many people who go to bed at 11 then get up at 6 a.m. and wonder why they are tired all the time. 7 hours is not enough sleep for most people. Go to bed by 10 and see if that helps.

[Julie]

Did you never get colds, etc. prior to being on Cpap? What (or who) did you blame for those?

[DWaldman]

Success depends on attitude. You have had some bad first hand experiance with this treatment. You need to rethink this. Many people make this work. Yes, it can be uncomfortable at first, and you may not see instant results. We have to work at this, as all people are different. Mask choices are a big part of this, as is getting your equipment set right. Once done, you WILL feel better. But it still is a matter of attitude.

[HoseCrusher]

Bob, people that eat a lot of carbohydrates and sugar also experience the 3 pm crash. They then try to deal with it by consuming more carbs and sugar. It may not be sleep related.

[bobcpap]

Thanks everyone for the help!

Question: Should I get the SleepyHead software at this point (seems a little complex) or just continue with base data from ResMed SD Card for awhile? It's giving me basics: Avg 9.5 Pressure, Avg 2 AHI per hour, no leak. Seems like device is doing its job and now just wait to see if it helps. I don't want to overanalyze yet and just continue as is for a month before considering changes to equipment, etc.

Believe me, no one wants this to work more than I do. I was so excited when I learned CPAP be able to help me, then so disappointed when it didn't work right off the bat, and now I'm in the middle ground of staying committed to try and make it work. I just think we need to be open that CPAP won't work for everyone and there are risks. Let's not hide this - I, like everyone, are hoping rewards far outweigh the risks (and compared to other options CPAP risks are far less, which is great and why I'm going this route). I love the fact that so many people on here do benefit from it, but many do seem to really struggle as well. I also travel a lot for work and am not thrilled about having to carry this all over the place with me, but I'll do so for good sleep of course.

Let's be open and honest on this board, which is better than always blaming the individual or denying CPAP just may not work for some people (I see so much absolute defense of these things on here I almost wonder if some people work for the industry and benefit from promoting CPAP no matter what). I'm not going to continue debating about the infection, but two doctors said it was most likely from the CPAP and said they see infections quite often from these things when not cleaned, so not sure why folks on here automatically deny it could possibly have been from the CPAP and must have been something else. Again, believe me, I truly wish I didn't have to clean these things so carefully now and there was no chance of infection. Bottom line - just take 2 minutes in the morning and rinse with mild dish soap and air dry. That's all it takes to ensure no infections. And, my 3pm crash is not from diet, I've been eating the same before and during CPAP and this is definitely not a sugar crash. Hopefully, it's just my body getting used to better sleep and for whatever reason, it's really groggy in the afternoons and that it will change over time.

Other treatments like dental devices may work for others or even getting a better diagnosis. I saw great posts about the best doctor to see and I'm going to see an ENT and Pulmonologist and Dental Apnea specialist just to get 2nd opinions after I try CPAP for a month if I'm not feeling better. I saw two Sleep Medicine MD's, but all they have to offer is CPAP. Again, I'm not against CPAP, but it's not for everyone and we should remind people to seek all options to help themselves.

Thanks again!

[SewTired]

Since your intent is to help others, you should note that the largest study (done in Taiwan) that showed increased risk of pneumonia had more details. This study included 6,000 people newly diagnosed with sleep apnea. The control group were those who were not given a machine, because their condition wasn't serious enough to warrant one. The study group were those given a machine, and thus, having more serious apnea.

What the study shows is that having apnea alone increases your risk of pneumonia 15%. Having a cpap increased it to 32%. The cause appears to be mostly speculation, but in both cases, the majority who developed pneumonia had another serious condition such as diabetes or heart disease that ALSO increases the risk of pneumonia. Furthermore, the 32% increase may simply be due to the fact that the patients had more serious apnea, and that the increase has nothing to do with the machine.

Unfortunately, since I can't access the actual study, there is no way to find out what percentage of folks had pneumonia as a result of inadequate cleaning of equipment. What is inadequate? I agree with you and the doctors that not cleaning the tubing, mask and humidifier could result in pneumonia. I won't speculate on your specific situation. That ship has sailed.

[DWaldman]

Since your intent is to help others, you should note that the largest study (done in Taiwan) that showed increased risk of pneumonia had more details. This study included 6,000 people newly diagnosed with sleep apnea. The control group were those who were not given a machine, because their condition wasn't serious enough to warrant one. The study group were those given a machine, and thus, having more serious apnea.

What the study shows is that having apnea alone increases your risk of pneumonia 15%. Having a cpap increased it to 32%. The cause appears to be mostly speculation, but in both cases, the majority who developed pneumonia had another serious condition such as diabetes or heart disease that ALSO increases the risk of pneumonia. Furthermore, the 32% increase may simply be due to the fact that the patients had more serious apnea, and that the increase has nothing to do with the machine.

Unfortunately, since I can't access the actual study, there is no way to find out what percentage of folks had pneumonia as a result of inadequate cleaning of equipment. What is inadequate? I agree with you and the doctors that not cleaning the tubing, mask and humidifier could result in pneumonia. I won't speculate on your specific situation. That ship has sailed.

Not sure I would trust a study done in Taiwan to be the best info. That said, using a machine or mask that has been used by someone else could create issues. Not so much the machine, but if hose and mask are not clean, or preferably new, I could see a risk of infection. That is why hospitals have protocals in place to properly clean masks and hoses. A DME that provides you with a used machine... Not so much. Once you have your own machine and mask, the only "bugs" you will be exposed to are your own. So a moderate cleaning program should be more than sufficient.Of course if you are immune compromised, you should take greater care.