Have question regarding data...

[Groovylad]

Good day to all,

After my first Sleep Apnea test I received a call to make arrangements for another test this time using CPAP. I had been doing some research on the net trying to find a forum with good advice for newbies like myself to better educate myself for what may become my new way of sleeping... I received my loaner CPAP machine and mask on April 1 and after a couple of days with the Mirage Quattro FF I couldn't get it to stop the air leaks (broken nose) I made an appointment with my Sleep therapist for other masks. Over the next couple of weeks and 3 masks later I have been having great success with the Swift LT with head gear and chin strap.

Also during my visits with my Sleep therapist I would make a list of questions I would have for her and also mentioned this site advising she should maybe tell her clients about it as I find it would help them to be better educated with Sleep Apnea and using CPAP. I also mentioned to her about using lanolin and how great it works for me and she said she would pass this info onto her other clients as she never heard of this... I then mentioned maybe she should go on the site for herself to get more info, tips and tricks...

Anyways after 2 weeks I had to bring in the CPAP machine for them to download the data and I figured the readings would be all over the map due to the number of different masks I tried and leak issues. Also I know for a fact that one time I had 3 episodes in a row (woke up snorting and gasping for air) because of the mask not seating properly and my wife mentioned I had a couple when she wasn't sleeping because I was having a restless sleep. After the data was uploaded and I was shown the graphs my sleep therapist said everything was excellent and it only showed 1 episode in the 2 weeks???

My question is can the data be showing reliable data? I also know that I had accidently pulled off my mask during the night and there was no indications of this in the data... My Sleep therapist said that most likely my episodes were not too severe and/or I didn't have the mask off long enough to register...

What do you think?

[DreamStalker]

First of all, it would help for us to know what equipment you have. Fill out your profile and you won't need to state this every time someone asks.

Next, most machines onle save 5 to 7 days of detailed nightly data ... beyond that only averaged summary data.

So there may be a misinterpretation of what is meant by "episode" ... was she referring to leaks, apneas, hypopneas?

In any case, it is hard to believe that only one of those occured in a 2 week period. I think the DME may be making stuff up (seems to happen fairly often).

[Groovylad]

Thank you for the reply DreamStalker...I am quite positive that the episode was apnea, she did mention that she usually only gets the first 5 days but can go up to 2 weeks if needed. I am still at work and have the numbers at home but will try to remember to post them tonight when I get home.

[DreamStalker]

It is this statement ...

... My Sleep therapist said that most likely my episodes were not too severe and/or I didn't have the mask off long enough to register...

... that does not make sense with this statement ...

After the data was uploaded and I was shown the graphs my sleep therapist said everything was excellent and it only showed 1 episode in the 2 weeks???

Yes, it would be helpful to post the "numbers" you have at home.

[Groovylad]

Here are the numbers according to my statistics from April 02 to April 15 with my pressure set to 12.0: AHI = 8.8, AI = 0.2, HI = 8.6, Leakage = 0.2 L/s. I was told that these were excellent numbers and that I was showing positive results with CPAP therapy.

Are these numbers as good as I am being told or is it too early to say? I would understand if my numbers weren't that good as I was trying different masks during the time period and my first 2 weeks show unfavorable results. I have now been feeling better since sleeping with the Swift LT for the last 6 days, keeping my leak rates under control and getting used to wearing the mask and chin strap.

On May 4 I have one more visit with my sleep therapist to upload another 2 weeks of data and then I have my first appointment with the sleep doctor on May 8 where I was told that he would revue my statistics and he would make his decision to keep using CPAP therapy.

I am definitely committed to CPAP therapy and understand those that want to give up especially during the phase of finding the right mask or whatever to get that great sleep, for those people I say hang in there and sooner or later you will find the right balance of equipment to help you.

[DreamStalker]

You have the correct attitude and I'm certain you will get your treatment optimized. Your profiles lists the Autoset II but you are saying that it is set to 12 ... CPAP mode?

Is it possible that they set it up in APAP mode with 12 set as the max and the min pressure set lower?

As for the efficacy stats, the numbers are not terrible but I would not say they are excellent. I used the older model Autoset when I was first starting out and maintained an AHI under 3.0 and more often kept it around 1.0 with AI of zero. Everyone is different however, but I think you should still be able to get your AHI always under 5.0 and AI at or below 0.1.

The key to success is to take control of your treatment ... like a diabetic who is serious about his blood sugar treatment. You have very good equipment and the first thing you need to learn is how it works ... this forum is the best place I know of for that.

This link http://www.cpap-supply.com/Articles.asp?ID=130 explains how to access the clinician menu for the S8 Autoset, the older model I used but I think you can use the same instructions to access your own machine. Perhaps someone will PM you and offer up a digital copy of the clinician menu so you can learn all the details of how to set up you machine.

Read the stuff under the yellow light bulb up at the top of the page to get a head start about what this treatment is all about then you can do a forum search for topics that interest you and of course you can just ask by posting specific questions.

Finally be patient, there may be a few initial nights of frustration but in time it will become a normal way of life for you and you will wonder what the big deal was. Your life will change as you discover your youth and good health again.

[Groovylad]

Yes they set up the loaner on CPAP mode until I see my sleep doctor in May. I totally agree about taking control of my treatment, because of this forum I had many questions regarding my sleep apnea and CPAP therapy that I wouldn't have thought of initially. I also mentioned to the sleep therapist that I wanted the same machine so that if I want I can run it in APAP mode in the event of failed sleeps and the such. She mentioned that patients rarely get an APAP machine as it needs a special prescription from the Sleep doctor and not all plans cover this. I phoned my health plan and they said it doesn't matter to them if its APAP or CPAP as long as I have the proper paper work filled out. When I mentioned this to her she was a bit surprised and said that I would have to take it up with my Sleep doctor.

I am hoping to get APAP as I do want some form of control with my therapy...

[JoyD.]

by DreamStalker on Mon Apr 20, 2009 12:09 pm

First of all, it would help for us to know what equipment you have. Fill out your profile and you won't need to state this every time someone asks.

Dreamstalker . . . I'm wondering why you don't list your equipment, etc?

[hose head]

I would try to keep the AutoSet II. Have your doctor write script for auto. DME's just don't like to get them out because they make less money. Check to see how many hours are on yours. If it is used with a lot of hours, try to get new AutoSet II. There are a lot of reasons to have auto. If you start to feel bad after months on xpap, you can set auto to see if your pressure needs to changed. It is a lot cheaper for your insurance company to let your doctor read your numbers from the machine you have, than send you to another sleep study.
Search on reasons to ask for Auto.
Your numbers are good for someone starting therapy, but I bet you can bring them down lower. Less than 5 on AHI is considered "normal".

[Hawthorne]

I am also in Ontario Canada. I suspect you are going to go through the Assistive Devices Program to get your machine.

According to that program (a Provincial Government Program as you probably know) special requirements need to be met to get an auto. You also have to have your doctor write the prescription for an "Auto". It will be up to the doctor to decide whether or not you meet the criteria. There are some doctors in Ontario who will write you a prescription for an auto if you want it and, kind of, look the other way at the crtieria set by the Government. Mine is not one of those doctors --yours may be or you may well meet the crtieria. With your data, you may not get a prescription for an auto.

If you don't meet the criteria and the doctor won't look the other way, you will get a prescription for a cpap. If you don't do well on a straight cpap, you MIGHT get the doctor to change the prescription and make it for an auto.

Failing that, you will have a prescription for straight cpap. To me, it is all ridiculous because an auto can also be set in cpap mode. Alas, it doesn't work the other way around!

In Ontario the Provider is, by law, obligated to give you the machine prescribed, even if you are willing to pay the extra yourself. It looks like you will probably get a prescription for a straight cpap. If that happens, try to get a "data capable" one. I don't know what is "data capable" in Resmeds (the brand you have) but others here can tell you.

I use the Remstar by Respironics and a data capable cpap machine in that brand would be a Remstar PRO. That would be the straight cpap you would get in the Reprionics brand that is data capable.

Data capable is better since you may want to get software and a reader down the road to monitor your own therapy.

If you get a prescription for a straight cpap and use the Assitive Devices Program, that's okay.

Get it but also make sure you get a least a copy of your prescription. That way, later on, if you want to buy an Auto online (and they are very reasonably priced online from US online suppliers) you can get one with your straight cpap prescription, no matter how old the prescription is, and keep the one you got in Ontario as a backup.

If you feel that you are not getting optimal therapy, with any kind of machine (straight cpap or auto) there are people on this forum who can help you get it.

My experience with any followup or help from the sleep doctors and providers in Ontario is that it is virtually non- existent. You may do better with your doctor and provider there in Ottawa but it doesn't happen in London. That's why I shared all this with you.

Good luck and keep coming back to the forum - best help with sleep apnea there is!