considering cpap

I had a couple scary incidents of waking in the middle of the night cause it felt like I couldn't breathe. In general, I wake many times a night. Often it's to change my position in bed; I have problems with my shoulders hurting. I sleep on my side mostly. Probably a couple nights a month, I'm up at 2 or 3 or 4 am and can't easily get back to sleep. I don't have extreme fatigue, some afternoons may feel a little "low energy" but that's about it. My dr recommended a sleep study. It was a very, very uncomfortable experience...hardly slept, esp. after they had me put a mask on and had a terrible headache in the morning.

Well, my AHI is 70-something. Hypopneas not apneas, if that makes any difference.

I don't know what to do. I've read a bunch of posts, and feel even more intimidated by all the information. I am rather particular about things and wonder what I might best adjust to. How can I determine what I'm likely to have the most success with?

Hi. About three years ago I was diagnosed with mild sleep apnea. I tried the nasal pillow mask with a cpap for one night and HATED it--took it back and said "thanks but no thanks"......fast forward three years.....I was dead tired all day everyday, depressed, gaining weight, etc etc.....went in for another sleep study.....my sleep apnea is now moderate to severe. I went in for a second night for c-pap titration. The lady that worked with me was WONDERFUL. I discovered that the nasal pillows force WAY too much air in too fast and that a different mask was sooo much better......I decided to "rent to own" and brought "Luke" (yeah I named him haha) home with me. I cannot even BEGIN to tell you how much better I feel........even people I work with noticed that I'm no longer a zombie. I was lucky and took to it pretty easily, but I was very apprehensive about it....personally, the thought of laying there all night struggling to breathe is wayyy more scary than putting on my light-weight life saver!!! Just some food for thought! I know it seems scary, but not breathing when you sleep is even more scary!!! Hope this helps! Good luck to you!!!

Hello and welcome. Most who enter this process have little information, and while that may be less overwhelming, it can lead to regrets later on down the road.

Don't know the details of your sleep study reports, but if you did not sleep well, it may be that they do not fully represent the extent of your sleep issues. Also, on the titration portion, hopefully they captured you in REM while supine. Not always, but generally that is considered the "worst case scenerio". You might want to review your copy of your test results to see if you have any specific questions.

Which machine and mask you might do best with is so open to opinion. I personally have two machine requirements - it must record treatment data, not just usage time (compliance data), and it must have exhalation relief. Exhalation relief doesn't matter to everyone, especially at lower pressures, and those with real high pressure sometimes need a bi-pap. If you are a mouth breather and due to nasal issues have to breathe through your mouth, a full face mask would be your best bet. If you can breathe satisfactorily through your nose and think mouth breathing will not be an issue, the other style masks can be smaller and often less prone to leaks. But that's all so very individual. Find out your provider's policy on mask returns so you know up front. The most carefully selected and highest recommended mask can just plain not work for you. Some get lucky and do well with the first mask given to them with their machine.

Hope you are able to narrow the field so your selection process isn't too overwhelming. Unless you have special needs, just about any machine will get the job done. Just keep in mind that without the ability to follow your treatment data, if you continue to have sleep problems, it will be hard to tell if your treatment needs tweaking or if there's some other cause. Best wishes as you go forward.
Kathy

Thanks, for replies. As I delve further into the wealth of information posted here, I'm starting to get a better sense of what I'm dealing with here

I'm adding additional information in case any of the seasoned people here would like to comment on any of this. I have a copy of sleep study report, so I can look up any details or even post selected portions, if that would be helpful.

1. How do I know that my occasional, mild tiredness and my night-time awakenings aren't from the insomnia or shoulder problems? Shouldn't I address those first?

2. I don't like sleeping on my back--is that the preferred position, and why is that?

3. The overseeing dr called me the next day and said it sounds like there is some type of insomnia in my sleep patterns, and that might make it rather challenging to be able to get used to the machine. After I reading that around 50% stop using their machine soon after getting it is concerning to me.

4. The reviewing dr said the study was inconclusive about what pressure is best for me. I think there was a very short amount of REM sleep towards morning. She talked about a trial machine rental that would gather data for a month or so.

5. The technician said the humidification was at the highest setting that wouldn't feel the tube with water, but I still woke with a very dry and scratchy nose and throat. BTW, several years ago, I had sinus surgery--on two occasions. (I used to wake up with congestion and I can't stand mouth breathing.) Now I have very little night-time congestion, mouth breathing, or snoring. (Speaking of the technician, I think she did a really poor job. After she put the mask on, she didn't increase the pressure - she was waiting for me to fall asleep. That didn't happen for over 2 hours, and the whole time I felt like I couldn't get my breath. I have a *Thing* about being able to breathe clearly and easily and don't like stuff near my face. Anyway, I'm sure that this contributed to the raging headache I had the next morning. Way to make a good experience/impression--NOT.)

I know this is a lot of questions! I numbered 'em to save you typing in answering the ones you want to speak to. I'm trying to work through this situation and I know y'all understand how much gathering some information helps. And not that I distrust drs, but they have a different perspective than "end users", and often are rushed. Thanks in advance for any contributions to help me out!!

enso wrote: 1. How do I know that my occasional, mild tiredness and my night-time awakenings aren't from the insomnia or shoulder problems? Shouldn't I address those first?

You have had the sleep study. The AHI of 70 tells me all I need to know. You HAVE sleep apnea. Period. It can cause insomnia (Your brain makes it harder for you to go to sleep because IT knows that you will be struggling to get oxygen all night). You are not consciously afraid to to go to sleep but subconsciously you are. Sleep apnea can cause insomnia or the inability to sit more than 2 minutes without falling asleep. They are 2 sides of the same coin.

At an AHI of 70, your apnea is severe and it is causing daily damage to your body. It will eventually lead to your death if not treated. Please, do not "consider" CPAP, GET IT!

enso wrote:
2. I don't like sleeping on my back--is that the preferred position, and why is that?

With Apnea, the WORST way to sleep is on your back. Your AHI tends to be much higher on your back than on your side. I literally CAN't sleep on my back and haven't been able to for many years. It was my brains way of protecting me as much as possible from apneas. If you don't sleep on your back currently, that is good.

enso wrote: 3. The overseeing dr called me the next day and said it sounds like there is some type of insomnia in my sleep patterns, and that might make it rather challenging to be able to get used to the machine. After I reading that around 50% stop using their machine soon after getting it is concerning to me.

People often have a hard time going to sleep at first on CPAP. They do things like take off their mask during the night. Since you have a hard time getting to sleep to begin with, the mask will probably make it that much harder. But it is truly imperative that you do get used to it and do use it. It is a life saver. It can take time to get used to. The first month or so, it felt very strange to sleep with the pressure and the mask. Now I don't feel the pressure and it would seem strange to sleep without it.

enso wrote: 4. The reviewing dr said the study was inconclusive about what pressure is best for me. I think there was a very short amount of REM sleep towards morning. She talked about a trial machine rental that would gather data for a month or so.

Your doctor is talking about using an APAP machine on you. You WANT an APAP forever! All APAP's are data capable which you desperately need and they are the most flexible of machines. They can be used as an APAP or as a CPAP. (When we say CPAP here, we use the term interchangebly for both APAP and CPAP). Having an APAP gives you the most flexibility to both get used to the machine and make it comfortable and workable for you. A DME will try to give you the cheapest machine possible. They get the same amount from your insurance if you have a cheap machine or the nicest APAP. Guess which one they will want to give you?

Some doctors are also resistant to prescribing APAP. Again, it is in your best interest to get the best machine you can. Do your research here and give them solid, valid reasons for getting one. If they still refuse, you can use any prescription for a CPAP machine to get an APAP online. It is also much cheaper online which might save you money over what you would have to pay through insurance.

enso wrote: 5. The technician said the humidification was at the highest setting that wouldn't feel the tube with water, but I still woke with a very dry and scratchy nose and throat. BTW, several years ago, I had sinus surgery--on two occasions. (I used to wake up with congestion and I can't stand mouth breathing.) Now I have very little night-time congestion, mouth breathing, or snoring. (Speaking of the technician, I think she did a really poor job. After she put the mask on, she didn't increase the pressure - she was waiting for me to fall asleep. That didn't happen for over 2 hours, and the whole time I felt like I couldn't get my breath. I have a *Thing* about being able to breathe clearly and easily and don't like stuff near my face. Anyway, I'm sure that this contributed to the raging headache I had the next morning. Way to make a good experience/impression--NOT.)

The tech probably had the machine at the lowest setting, 4cm of pressure. Most people feel like they are suffocating at that level. You should have the machine set at a minimum of 5. Even that was a little too low for me. I changed mine to 5.5 the first night.

Once you get your machine, you can experiment with humdification settings. You can get a heated hose or add a heating cord to your hose to prevent getting water in the hose while allowing you to have more humidification. Search "rain out" here for more information about it.

I know this is a lot to take in but you are in the right place to help you acheive success! Anytime you have questions, people are here to answer them.

I am rather particular about things and wonder what I might best adjust to. How can I determine what I'm likely to have the most success with?

I'm afraid you can't. Many of us are rather particular about things - and we rarely agree that what fits one of us will fit the other. You will only find the right mask (for you in particular) and the right machine (for you in particular) by trial and error.

The doctor was probably thinking of giving you a self adjusting machine (aka auto or APAP), to see what pressures it suggests once you get used to this new way of sleeping. That's a very good way of going about it.

Once you get started, and can point out to what is bothering you - we'll be glad to give you tips about making things more comfortable.

With your breathing jolting you out of sleep to the tune of 70 times a minute (that's what an AHI of 70 means), its no wonder you have insomnia - and there's no hope of curing that -whatever it's reason - if your breathing keeps jolting you awake.

O.

Your sleep study does indicate that you have sleep apnea, given the AHI.

If it were me, I would do the trial on an auto machine to get a better idea of what pressure would work best for you.

If you get the auto and it is set at a minimum pressure of 4 (quite likely will be), raise that minimum to 6 cm right away. You will have a better change at beginning to use the machine if you do that. If you don't know how to change the minimum pressure to 6 cm, come here and we can help. The maximum may well be set at 20 cm. Don't worry about that. That's a good maximum to start with.

You need to get going on this therapy and an auto trial will give much more information, about pressure setting, than a sleep study. It is hard for many people to sleep properly or an adeqaute amount of time to gather sufficient data at a sleep study. The auto in home study will be in your own surroundings and sleeping in you own bed - no wires, etc . They may also give you an oximeter to use during the auto trial. That's a good thing!

After the auto trial, push hard for a data capable machine!

Good luck!

.
enso,

WELCOME to an awesome forum where you will learn a lot and get lots and lots of help. You are not alone . . . we are here to help. We all started at the same place as you.

I have a copy of sleep study report, so I can look up any details or even post selected portions, if that would be helpful.

Yes, it would be very helpful for us to help you the most if you would please copy the data on the report, even if it is long.

Thanks,

Joy