Overwhelmed!!

[Sleepless in the Valley]

Hi Everyone,
I recently completed the 1st night of a sleep study. The tech told me that I should be prepared to come back and sure enough 3 days later I was called to schedule tritration on the 18th. At the time he told me that it appeared as though I was waking up about 20 -25 times per hour. My Dr. has not called to share any reprts yet. I don't know if he waits until after he gets the results from the next night.

I have been reading different entries on this forum, but I must say I am overwhelmed. What is the best equipment? Do you need to just use trial and error? What features should I ask my Dr. to put in the script? Do they use a variety of equipment during triation? What about variable pressures?

The first night of the test I was miserable and I only slept 3 1/2 hours according to the tech. I didn't think I had slept even that long. How can I be more prepared? What should I ask?

This forum has a wealth of info, but I must say it is overwhelming!!!! Thanks for the help

[Pugsy]

http://maskarrayed.wordpress.com/what-y ... me-part-i/

I would suggest that you start with forum member Janknitz blog. See above link. Some very useful and down to earth explanations and suggestions. She has several different areas. Read them all and then come back with questions that were unanswered. She takes care of many of the questions in her blog.

Equipment used during titration probably will not be what is prescribed to use except maybe the mask.

Go to the Wiki at the top of the page and just start reading the basics. Yes, there is a lot of information to assimilate but take it in small steps and you will get the hang of it. Go to the definitions page and look at all the acronyms and that will help a lot. I remember when I first started it took me 3 days to figure out what DME stood for. Durable Medical Equipment.... usually in reference to the supplier of your cpap machine and supplies.

Use this time to educate yourself and soon the overwhelming feeling will be gone.

Welcome to the forum. Great bunch of people and lots of experiences to draw upon.

[sleepless in the valley]

Pugsy,
Thank You so much for the link. It is a real help! At least I now have a starting place. There is so much to learn and consider. This period of "the great unknown" is a little scary. I don't know how I will adapt to OSA and how it will effect my life. This forum is a Godsend!

[Pugsy]

I will share a little secret that helped me a lot when I finally realized that this cpap therapy was what I was going to have to do. I read and read and read and then went back an read again some of the stuff I read at first that was like a foreign language to me. While you will see a lot of "problems" at forums like this one, that is the reason these forums exist. It it was all smooth sailing no one would be needing help or asking questions.

Everyone adjusts to this a little differently than the next person. What bothers me may not bother you and vice versa.
Look for the positives (even if small) and you will find them. If you look for negatives that is what you will find. Is it easy? Well for a lucky few probably but for the most of us it is just plain hard work.

Mask fit and comfort is probably the biggest problem for most. If you can normally breathe through your nose during the day then you may be a good candidate for the least intrusive mask type which is the nasal pillow mask (check my profile to see the one I use). If you normally can breathe through your nose just fine during the day but find that you are mouth breathing at night (dry mouth, sore throat, someone tells you that you snore) it doesn't mean that you can't use the nasal pillow mask.
Just means you may need some help or need to teach your body it is okay to keep mouth shut at night. It is easier to get the nasal pillows to seal simply because there is less surface to have to seal.

Does it feel weird to have air going up your nose? Yep, but you do get used to it and even people with very high pressures have reported using the nasal pillows with great success.

The mask part is so foreign and it does take some adjustment to sleeping with all this "stuff" attached to us. It should not "hurt" though. If any mask hurts that is unacceptable. Can't be expected to sleep with pain from a mask so don't settle for "you will get used to the pain" excuse. Tight is not necessarily better for leak control.

You know your own body better than anyone else. If you happen to need a full face mask there are ways to improve fit and comfort, plus there are a whole lot of them to choose from. When shopping DMEs be sure to clarify mask trial restrictions. Usually it is the DME that places time limits and number of trial restrictions. Most of the mask manufacturers have a 30 day swap out trial, just seems like the DMEs don't want to do the paper work involved.

I actually welcomed the OSA diagnosis because it gave a name and face to something that was causing me to feel just plain awful. Certainly better than anxiety and depression diagnosis that I had been given. Seems like that is common for those of us with fatigue, headaches, and the like. Either that or blame it on menopause..... You now have a real enemy to battle and it is easier to fight something when we know exactly what it is.

Attitude is a huge part of this therapy. Realistic expectations is another. Will you wake up a new person the first night at home with the equipment? Probably not. I was scared to death and probably woke up every hour checking on something. Anything that affects the quality of restorative sleep can be a problem. Cpap therapy addresses just one aspect of sleep disorders. There are any number of other problems. But we start with the one that has a name and a face and go from there.

You will do fine. Education is vital and you are already on that road. Will there be bumps? Sure there will be. We all have them. Some more than others. I was so well "educated" that I felt sure that I would be one of those with over night success and a new woman..... Nope. Didn't happen. For a time actually felt worse till I got a handle on my situation.
Was a bit of a disappointment but I knew it wasn't something that I couldn't handle.

Do I "love" my mask and machine? Heck no....but I hated the alternative so I accepted my choice and decided to make the best of it. The mind is a powerful drug, use it wisely and it will help immensely.

Feel free to ask questions. Bet you can't come up with one that hasn't been asked before and probably by a lot of people.

[sleeplessinthevalley]

Thanks for the great info Pugsy,

I just picked up my preliminary report from my sleep study.I have severe OSA with a AHI of 84 events per hour and a minimum SaO2 of 82%. It is a little scary, but at least now I have a reason as to why I feel so lousy much of the time. All I want to do is sleep. Easter we had the family over. After cooking for 13 I was totally exhausted.I was beginning to feel bad about myself and think I was just lazy. Hopefully once I get on treatment I will regain some energy.

I will continue to read everything I can in the next few weeks so that I know what to expect. I appreciate any info anyone can give me so that when the time comes I know the right questions and can get the best treatment possible. I am anticipating success with th CPAP with the help of such wonderful people.

[robysue]

Easter we had the family over. After cooking for 13 I was totally exhausted.I was beginning to feel bad about myself and think I was just lazy. Hopefully once I get on treatment I will regain some energy.

Anybody who has family over and cooks for 13 on a major holiday is entitled feel totally exhausted---even without severe OSA! It's a MAJOR undertaking and requires a great deal of stamina and energy just to get through that kind of a holiday. Why on earth are you being so hard on yourself?

On the bright side, if you have this kind of energy *with* untreated severe OSA and you see improvement in your energy levels, you'll be a real Energizer Bunny!

[dtsm]

A warm welcome.

Couple of follow-up suggestions:

1. insist on an auto adjusting cpap unit [aka apap]
2. insist on an apap unit that has full data capability, the two most popular being ResMed S9 and the Respironics unit [check cpap.com for specs].
3. Get the software, and learn how to download and read the data.

It will take time and a positive attitude but if you persist, you will prevail. We were all newbies at one time or another, AND we're here to help

Good luck!

[DocWeezy]

Patience is the key...I too have heard those stories about people who strapped on a mask and woke up the first morning feeling 200% better and it was smooth sailing from then on. I wasn't one of those! I'm about 7 months out now and am really noticing the difference in hindsight. However, I don't really notice the improvements from day to day--only when I look back--because the improvements have been so small; not to mention sometimes it's been one step forward and two or three steps backward.

But if you remain patient and work through every issue or glitch as it comes up, you will adjust and you will start to feel better. But it takes time! (darn it!) I was like Pugsy and decided that I was going to be one of those legendary people...ha....whatta laugh.... but I wouldn't go backwards for anything now and I won't even think about sleeping without my machine. Heck, I took a trip to the beach last weekend and at bedtime discovered that I had left the power cord to my machine at home. Yikes! So at 10 p.m. I headed home; drove for over two hours, slept that night at home, then got the power cord and headed back to the beach the next day. No point in even thinking about sleeping without it because I knew I couldn't. It was a case of go home that night or go home the next day without any sleep at all. Easy decision! It is now part of my life that is allowing me to to actually HAVE a life.

Hang in there...it DOES become easier!

Weezy

[bprater]

When I had my sleep study done they asked if I wanted anything to help me get to sleep. But you have a cut off time that if you go past you can no longer be given the medicine. Of course they may not give you anything depending on health problems or other meds.

[sleeplessinthevalley]

The Sleep specialist sugested ambien to my PCP. I've never taken a sleeping pill before, so it should be interesting. Also, I'm tossing around the idea of going to the Fitness Center pool before the titration. The water is 91 degrees and might help make me good and sleepy.

I am definately looking forward to moving ahead with all of this now that I have a name and potential treatment for my problems. My titration is on the 18th,and it takes 7 to 10 days to get the report back to my PCP. We go on vacation the week of the 29th so I might have to wait until June to get an appointment with the DME. My cardiologist first recomended a sleep study back in March. Things seem to move very slowly, but at least they are moving in the correct direction.

In the mean time there is more reading to do.
The equipment I think I would want is an apap with full data capacity, and a heated humidifier. I will need to experiment with masks to see what works best for me. I appreciate and welcome any advice and comments.

[robysue]

My titration is on the 18th,and it takes 7 to 10 days to get the report back to my PCP. We go on vacation the week of the 29th so I might have to wait until June to get an appointment with the DME. My cardiologist first recomended a sleep study back in March. Things seem to move very slowly, but at least they are moving in the correct direction.

In the mean time there is more reading to do.
The equipment I think I would want is an apap with full data capacity, and a heated humidifier. I will need to experiment with masks to see what works best for me. I appreciate and welcome any advice and comments.

My advice: Use the time between NOW and the beginning of that vacation to not only continue your reading, but also to start SHOPPING AROUND for a DME of your choice instead of the default one your sleep lab/sleep doctor tends to use.

Start by calling your insurance company and find out ALL the details about how much they'll cover for the CPAP, how they'll pay for it, how often (and how much) they'll pay for the "consumable" replacement parts, and which local DMEs are considered "in network."

Then start making phone calls to the DMEs. Presume (at this point) that your prescription is likely to read nothing more than "CPAP with mask of users choice and heated humidifier." Ask each DME what machine they would likely set you up with and whether they'd set you up with the APAP of your choice running in CPAP mode. The insurance code for APAPs and CPAPs is the same so the insurance company won't care. But the DME sure will.

And if you haven't already read it, you should definitely go to Mask Arrayed, a blog by a user here named Janknitz who has some really important information in an entry called What you need to know before you meet your DME.

Best of luck! And enjoy the vacation.

[gasp]

. . . Then start making phone calls to the DMEs. Presume (at this point) that your prescription is likely to read nothing more than "CPAP with mask of users choice and heated humidifier." Ask each DME what machine they would likely set you up with and whether they'd set you up with the APAP of your choice running in CPAP mode. The insurance code for APAPs and CPAPs is the same so the insurance company won't care. But the DME sure will.

I disagree a bit here - DMEs are famous for thinking they know what their customer needs and may have the philosophy to spend as little time as possible on each customer. So, you ask, "If I should choose to your your company as my DME will you be able to provide a Respironics APAP (or whichever machine you decide upon). This puts them in the frame of mind of wanting your business instead of putting them in the frame of mind that they're picking out your machine for you.

Definition: CPAP = continuous positive airway pressure APAP = automatic (titration) positive airway pressure

Know what your insurance pays and what you can afford. I advise you to spend all you can afford to get a full data automatic (APAP) machine also mentioned earlier. I have the Respironics M Series CPAP with A-Flex. It may be confusing that there is the term CPAP and A-Flex in the product name. A-Flex is a Respironics term, essentially it is an APAP. This machine can be both a CPAP and an APAP. Unless the machine says it has A-Flex or is an APAP and if it is a regular CPAP then it cannot be an APAP. Most people really like the A-Flex technology and don't set the machine to continuous flow (CPAP).

Learn about what A-Flex does here: http://aflex.respironics.com/

You'll probably want a machine with a humidifier.

[robysue]

Gasp,

I admit, your version of The Question to Ask the DMEs is MUCH better than mine!

I'll try to keep it in mind the next time I write one of these posts to newbies still in the process of finding the DME and the equipment.

[gasp]

Gasp,

I admit, your version of The Question to Ask the DMEs is MUCH better than mine!

I'll try to keep it in mind the next time I write one of these posts to newbies still in the process of finding the DME and the equipment.

I learned it the hard way

[sleeplessinthevalley]

Thanks again to everyone. I spent the day on the phone with United Health care to make sure I understand my coverage. After the $250 deductable, which I have already satisfied, it covers 90%. I talked to some DME Reps and I think I eithert want Respironics System1 Auto with Cflex or Resmed s9 auto. I will have to wait until after titration in order to talk to my PCP to get correct wording on script. I talked to PRAXair who is on my list of prefered providers and they seemed very helpful. Does anyone have feedback on them?

My next questions have to do with masks. I am assuming that this can be a very individual thing based on the shape of your face and measurements. Fortunately they let you exchange masks within 30 days if it doesn't work out. Any advice?

What about accessaries? The list of options is huge. Anything that people feel are "have to haves"? I agree that since this is now going to be part of my everyday life I should get the things that will make it more comfortable. The statistics of those who need the therapy and yet are noncomplient is scary. I want to be one of the success stories! With my test results I need to be using this.

Again any and all advice is very appreciated. The more I know the more likely I will be successful!