When do improvements start?

burc2006 · Post by **burc2006** » Sat Mar 24, 2012 2:28 am

Hello all
I am 36 male, after diagnosed as severe apnea with AHI=43, I started using CPAP in 8cm H20 pressure. It was a shock for me to live with a mask and CPAP machine during my sleeps, maybe all my life, but I am still struggling. Today I passed my 3rd night. 1st night was terrible, I could only sleep 4-5 hours. Yesterday slept well could sleep around 6.5 hours before going to bed. Today I could sleep around 9 hours. I think getting used to this CPAP.
Physical condition, yesterday it was better than before, I felt more energetic and less sleepy. But at evening I was so sleepy, about to sleep in front of TV. Today even I slept 9 hours, I feel still sleepy.
My problem before diagnosed to apnea is so sleepy during daytime, no wish to do anything, no concentration and dizziness(with some feeling like walking in a boat, unsteady condition) because of being sleepy. I think I am better than before, but I am not as good as explained, do you think it will improve as time passes? When did you have complete benefits after start using CPAP?
Thanks in advance for your answers.

Riorican · Post by **Riorican** » Sat Mar 24, 2012 5:14 am

Welcome!

It does get better, so have faith and keep the patience. It is a lot of work to get the therapy right and to adjust to it. It's a new world. You actually have already had some long hours with the machine.

I'm over a year in and had only one night at 8 hours. I finally average 5.5 hours a night. You've been sleep deprived for awhile so your body will need some time to adjust, feel even more comfortable with the equipment and accept it, and to catch up on the deep sleep your body craves. I never had the daytime sleepiness that many report but was a zombie after about 5 PM. One of the first symptoms to go away for me was the brain fog and waking at night for the restroom. The concentration issue and lack of motivation to do anything took a little longer.

Best thing you can do now is enjoy the hours of sleep you have with the mask and treat yourself to lots of it. When you need to sleep, mask up and get a good nights sleep or a good nap (with the mask...don't nap without it). It'll even out with time.

cflame1 · Post by **cflame1** » Sat Mar 24, 2012 6:25 am

burc2006,
You do know that you got a dataless brick right? Your machine will not show you if you're leaking, or what your AHI is. You'd need to upgrade it to at least an Elite or an Autoset... stay away from an Escape or anything with the word Escape in it.

Pugsy · Post by **Pugsy** » Sat Mar 24, 2012 7:53 am

Ditto to what CFlame has said.

While it does take some time (sometimes a lot of time) to expect feel some marked improvement..what do you do if 2 months from now you aren't improving? Without data you have no idea if the therapy is optimal and you just need more time or if you need to improve something that you are doing.
The only data available on your current machine is how many hours you use it. Hours of use is for satisfying insurance compliance requirements. Useless data to you.

Take a look at what one of our members has written about what to do when you have been given a "brick"....a machine that doesn't offer data...scroll down below the information on full data machines which you probably should read anyway.http://maskarrayed.wordpress.com/

burc2006 · Post by **burc2006** » Sat Mar 24, 2012 8:22 am

Thanks for replies.actually doctor ordered this machine for me, he thinks that I don't need machine that keeps data. I will ask him and machine seller. Although I am sure no leaking occurs at least from mask, I checked in the morning. And in cpap titration 8 cmH2O is the optimal pressure in which my breath is stable. If there is still some concern after sometime, doctor will check and correct.
I understand some time is needed for seeing real improvement. I will try to wait with patience...

Pugsy · Post by **Pugsy** » Sat Mar 24, 2012 8:30 am

burc2006 wrote:If there is still some concern after sometime, doctor will check and correct.

All well and good but what is he going to check? There is nothing there to check.
If you aren't doing well..he can guess or say "well, I guess we need another sleep study". He has zero data to evaluate. Leaks? Just because you don't think you are leaking when you wake up doesn't mean leaks didn't happen during the night.

Did your DME tell you that this was the exact model the doctor requested? Did you see the actual RX where it stated ResMed S9 Escape?

burc2006 · Post by **burc2006** » Sat Mar 24, 2012 8:44 am

I did not see any written thing. Anyways I will consult to doctor next week.

MJKelleher · Post by **MJKelleher** » Sat Mar 24, 2012 9:19 am

Burc, I've been on the machine just 22 days. My study had my AHI at 81, started with pressure at 12. Like you, I was sleepy much of the time, no energy, no ambition to do anything.

The improvements have been slow and incremental. I'm still tired, but I don't fall asleep at my desk during the day. Yay me! I can get interested in more of the stuff I need to be doing. I'm only waking up 1-2 times during the night instead of 2-4 times.

I just downloaded the software to read my data card, and it's helped me also. (I always feel better knowing about something, having a name for it, even if there's nothing else that I can do.) I know that last night my AHI was 3.71, yay! That I had some leakage at the end of the night, but most of the time it was minimal.

Even if the doctor doesn't think he needs data, knowledge of how you're responding to the therapy can help you, either in confirming that yes, it's working, or no, maybe I should tweak something. Peace of mind can be a real plus in living with the CPAP. Good luck in dealing with your doctor!

BlackSpinner · Post by **BlackSpinner** » Sat Mar 24, 2012 9:33 am

burc2006 wrote:Thanks for replies.actually doctor ordered this machine for me, he thinks that I don't need machine that keeps data. I will ask him and machine seller. Although I am sure no leaking occurs at least from mask, I checked in the morning. And in cpap titration 8 cmH2O is the optimal pressure in which my breath is stable. If there is still some concern after sometime, doctor will check and correct.
I understand some time is needed for seeing real improvement. I will try to wait with patience...

Would he think a diabetic doesn't need data?
Get a copy of your rx and your sleep study. Then call your insurance to find out which DME's (sellers of cpap equipment ) are covered.
read Janknitz bloghttp://tinyurl.com/2arffqx to find out all about machines and get a decent machine which will tell you what is happening to your therapy. You are going to be on this for the rest of your life. Take control of it.

burc2006 · Post by **burc2006** » Sat Mar 24, 2012 9:51 am

Dear friends, I am living outside of the US, here the machines are too expensive ( mine is about 700 euro). Dr chose this model to be economic solution, but I agree with you it would be good to see some data if everything is going well at night. On the other side, I am too stressed guy I would worry too much if I see some bad data. Stress is so much affecting sleep quality as well.
Anyways I think best is to ask doctor on Monday. I am still on trial period of cpap machine so that I can request to upgrade easily. I think there is about 200 euro difference but since I will live it forever I can give this price difference or after some years upgrade if something goes wrong in the future

BlackSpinner · Post by **BlackSpinner** » Sat Mar 24, 2012 10:11 am

burc2006 wrote:Dear friends, I am living outside of the US, here the machines are too expensive ( mine is about 700 euro). Dr chose this model to be economic solution, but I agree with you it would be good to see some data if everything is going well at night. On the other side, I am too stressed guy I would worry too much if I see some bad data. Stress is so much affecting sleep quality as well.
Anyways I think best is to ask doctor on Monday. I am still on trial period of cpap machine so that I can request to upgrade easily. I think there is about 200 euro difference but since I will live it forever I can give this price difference or after some years upgrade if something goes wrong in the future

Ok but still read her blog on the machines. It gives a lot of information. So does the light bulb at the top of the page.

Personally, not knowing the data would cause more stress for me. Seeing the data would allow you to know if your mask is leaking, if the pressure is right for you that day, if you need more or less due to allergies or weight change, if you are mouth breathing with a nasal mask. It is now that you want to see what is happening, as your body and mind get used to this new way of sleeping. You are not feeling better faster, don't you want to know why in detail if it is working for you? The data capable machines can show you breath by breath how you are doing. The first few months usually make or break this therapy.

This machine will last you at least 5 years divide the costs by 5 to see a yearly average cost.

burc2006 · Post by **burc2006** » Sat Mar 24, 2012 11:35 am

Ok thanks. I will ask next week and evaluate the cost efficiency by taking doctor and sellers recommendations...

Pugsy · Post by **Pugsy** » Sat Mar 24, 2012 12:05 pm

I understand about the money. Didn't realize where you lived..we had no way to know and assumed you used a supplier like we do here in the US. I realize that different countries do approach this differently.
Here in the US follow up sleep studies when people are doing so well cost big bucks and even with our insurance (if we are lucky enough to have it) we still have to pay several hundred dollars to have another study if the initial pressure settings don't work out. So we try to avoid that.
And yes, some people do obsess over the numbers to the point that they are making mountains out of mole hills but let me share my story with you.

I too was told that 8 cm was my ideal pressure. I saw minimal to zero improvement. My machine that I started with I purchased on my own because I had already decided I wanted to be able to monitor my own results. It isn't difficult. It took me about a week to get the software and necessary equipment to get the full data off my machine. When I got my first reports it was easily seen why I didn't feel any better. My AHI was still in double digits. Improved from my initial pre cpap studies but still high enough to be classified as "moderate" sleep apnea if the same numbers had come from not using a machine. My therapy was not optimal. I also was having some leaking that I didn't realize I was having. Some mouth breathing issues.
Once I saw the reports it was easily seen that I needed a bit more pressure and I needed to curtail the mouth breathing. Ended up needing pressure of 10 and that along with curtailing the mouth breathing got my AHI down to around 3...and I started feeling better.

Now you might be lucky and things are optimal and nothing needs to be worked on and you just need some time for the body to heal itself. Lots of people get along just fine never knowing their data.
They don't need to. A person doesn't have to look at the data every day but it sure is handy to have available just in case you aren't seeing any improvement. Better to have it and not need it than need it and not have it.

But if you can't afford the extra money for the full data machine it isn't the end of the world. It just makes things a little more difficult to figure out if you don't get the improvement you wish. Not impossible..just a little more difficult and likely to take a little more time.

burc2006 · Post by **burc2006** » Sat Mar 24, 2012 1:14 pm

Pugsy,
Problem here is machine expensive, also insurances do not cover the machine cost. But sleep test is expensive too, almost same price with the machine. So your opinion is correct, it would be better to see the results in the machine rather than having the sleep test again if some problem exists.
However, I dont play with the settings by myself, but even in that case result recording can be useful to discuss with the doctor and make him decide better settings for me.
I will surely discuss about buying S9 Elite instead of Escape with the doctor and ask the price to seller.
Thank you for your help.
By the way, as much as I know S9 series including Escape have automatic leak compensation, if so leaking may not be so important, am I wrong?
And 2nd question, when I open my mouth, there is disturbing air flow, so if there is leakage from mouth in your sleep, didnt you wake up??

BlackSpinner · Post by **BlackSpinner** » Sat Mar 24, 2012 1:29 pm

burc2006 wrote:Pugsy,

By the way, as much as I know S9 series including Escape have automatic leak compensation, if so leaking may not be so important, am I wrong?
And 2nd question, when I open my mouth, there is disturbing air flow, so if there is leakage from mouth in your sleep, didnt you wake up??

Yes it has some data but not detailed data. It is better then nothing.

If you open your mouth you are losing all the therapy air that is trying to keep your throat open and it collapses. Many people are deeply asleep at this time and don't wake up. For many people this happens during REM (dream) time when you are very deeply asleep and partially paralysed to keep you from acting out your dream.

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