New User/New Member

Hello Everyone, (sorry for the length of this post, I didn't plan for it to be this long, feel free to not read all this )

New registered user on the forum(I have been lurking for a month or so) and figured I'd post a brief intro. I appreciate all the valuable posts I've read here so far and look forward to learning more from everyone. There is no better information than the first hand experience you all have shared. Hopefully I will be able to provide the same type of information at some point.

As many of you know the horrors of living with untreated sleep apnea I too was that guy. It had only been getting worse in the recent months, difficulties keeping my eyes open in quiet times, struggling to stay awake while driving, catching myself snoring before actually falling asleep, needing to nap after work(sometimes during work),waking up in the middle of the night drenched in sweat, never really feeling refreshed. I was a shell of my old self, virtually a walking zombie and just not healthy.

Knowing my condition(while not know what my condition was) was getting worse I knew I needed to find out ASAP. I had a doctors appointment already booked for a completely separate issue but took the opportunity to ask if I could get a sleep study done. He basically asked about my reason for this request so I explained my symptoms and he agreed a sleep study was in order. Within the week I had received a call and a package in the mail from the sleep lab booking my appointment and all the info I needed. This appointment was roughly scheduled for three weeks after my first doctors appointment.

The sleep study day finally came, I had tennis that night ran home showered and off to the sleep clinic. After a brief run down of the process and the million wire hook up and some blinks and other tests confirming all wires were hooked up properly I was left alone to sleep. After tennis I always have difficulty falling asleep, a little too much adrenaline pumping through my system. Eventually I do dose off and after waking numerous times throughout the night I am awaken and told that it was time to get up, I was basically told that it was painful to watch me sleep and that I don't breath more than I do breath and that I would soon hear from the sleep specialist.

A few days later i receive a phone call informing me that the sleep doctor would like me to go in for a second sleep study, this time wearing a cpap machine. This appointment was also scheduled about three weeks away however I was put on a cancellation list and luckily enough 5 days after my first sleep study I was in for a second night. Once again I had tennis on this night so basically the same chain events except my first time ever putting on a cpap mask. A unique experience to say the least. After a few awkward breaths and a totally foreign feeling of pressurized air going through my nose and out my mouth i adjusted. I was wearing a nasal pillow mask with head gear with an unknown pressure. I once again took a while to fall asleep but eventually drifted off. I only woke up once or twice when the tech had to adjust some wires i had knocked off. The next thing I know I'm being woke up and it honestly felt like i had slept for 15 minutes from my last wake up. It felt like I had slept a total of an hour that night, it seemed to fly by. Still quite groggy the lab tech explained the next steps. Basically I was told that I qualified for an auto machine and was given some paperwork that would allow me to trial a machine and I would have a meeting with the sleep specialist.

That day was literally one of the worst days I have ever had in terms of tiredness. Right from the moment I woke up i was tired and throughout the day I had never been so tired in my life and thats something from someone with sleep apnea. I was really doubting the effectiveness of cpap machines. I can not stress how awful I felt that entire day and had a sore nose to boot. I do blame my drowsiness that morning for not really understanding the next step in the process, i thought I had to wait to see the sleep specialist before getting the trail machine, as it turns out I could have went that day and picked up a trail machine. My fault as I just sat around waiting to hear from the doctors office to book an appointment. Finally received a call from the specialist to book an appointment, during that call the process was re-explained to me and made a lot more sense now. With my appointment being a couple days away I decided I'd still do both on the same day.

I went in to see the doctor and the sleep lab. I did have all the numbers from the sleep studies but I really didn't know what they meant and really didn't know the right questions to ask. I really figured I'd just wait to go over everything with my sleep specialist. While I knew my numbers were high I didn't truly appreciate the severity of my condition. I had an AHI of 105.9 and my blood oxygen levels dropped quite low while I slept. I had(have) severe OSA. While visiting the doc my trail machine was being set up, my auto pap would have a minimum of 12 and maximum of 17. I once again went with the nasal pillow mask as I had no leakage issues during my second sleep study. The machine was the PR REMstar Auto A-Flex with a system one heated humidifier. After a brief run down of how the machine works i left with my first cpap(apap if you feel the need to be more precise).

The trail period is usually two weeks however I had a 12 day vacation booked right in the middle of that trail period. I let the sleep store know about my vacation and they allowed me to take the trail machine. The first night I got the machine all set up, humidifier topped up with distilled water, put on my mask and was mentally ready for another quick night and horrible next day. To my surprise I slept pretty good, nose wasn't sore felt pretty good. Woke up went to work felt good all day. Came home from woke and no need to nap at all. Maybe there is something to this cpap thing after-all. Day two more of the same day three went pretty good as well. Maybe this little machine is really doing some good things.

So before I left for my vacation I took my SD card to get read to see how I was really doing. Explaining to the lady at the sleep store my AHI was 105.9 she was thrilled with my results, during my first 6 nights I had an AHI of 2.3. I was sleeping better, feeling more refreshed, and in general I just felt better, I was much more like my old self and not in that apnea induced zombie coma. It was around this point i stumbled upon this great resource and community, as I was looking up sleep mapper in my search came up an old forum post about sleepyhead vs sleep mapper. I began reading numerous posts, learning and absorbing all the information here. This is truly a great supportive community you have here.

I know this is getting extremely long winded, I apologize to anyone thats had to suffer through this, i really hope while reading this you've fallen asleep and are having a great sleep.

It was then I got to experience travelling with a cpap machine. I had previously called my airlines to ensure that I could travel with my machine as a medical device and that it wouldn't count against my carry on limit. I was assured that I wouldn't have any issues and I didn't. Everyone from the airline and TSSA was very helpful and familiar with cpap travellers. I was actually given priority boarding because of my medical device carry on. This is something that likely wasn't needed but was a nice little perk. I'd say travelling with cpap is very easy, and at least with my first experience no extra hassle. I did pack an extension cord for my hotel, and believe this is good practice while travelling as you never know where the nearest outlet might be in your hotel room. While I didn't need it this time it is something I will continue to do.

After returning from my vacation it was time to return my trail machine and get the latest data off the SD card. My AHI while on vacation was now 1.2 while using an average pressure of 13.9. It was time to take the plunge and buy my own machine. I decided since my numbers were so good on the trail machine I would purchase the same machine with the same set up and the same mask because I'm new to all this it made sense to me to stick with whats working.

This now brings us to today, today I took my SD card in for a 3 week read to see how I'm doing with my own machine. Today my three week AHI was 0.7 with an average pressure of 13.2. I still feel a little groggy when I first wake up, but who doesn't when waking up at 5:30am. I feel a million times better now than I did a couple months ago, this machine has been working miracles while I get a good night sleep in each and every night. I know I'll be a cpap user for life and don't mind one bit as it has really given me my life back. I'm a changed person and in such a short period of time.

From reading numerous posts on here and around the internet I do realize how lucky I am to be doing so well. I really haven't had to do much other than get the ball rolling everything else has just worked out much better than i could ever have imagined. All this being said I am still new to this cpap world and I'm sure there will be rough patches I'll need to work through and its nice to know I can come here to find the help I am going to need.

Kevin

A few quick questions,

I currently do not use sleep mapper or sleepyhead. I just check my machine each morning for any major leaks and my 1,7,30 day AHI numbers, while my numbers have always been good(touch wood), should I download sleepyhead and learn the software and how to interpret the data or just keep reading the machine until i notice a trend of undesirable numbers and then dig for answers?(really just hoping my numbers remain good)

Can anyone comment on the pros/cons of the equipment I am using?

While my numbers have been good should I be experimenting with different masks or just stick with what is working?

Any other general advice would greatly be appreciated. Again thanks for having such a great community and being such an excellent resource for all things associated with sleep apnea.

Sleep well!

the advantge of software is that you can see what is really happening. The summary AH looks great, and congradulations on adjusting to this so quickly.

With the detailed reports you will aslo see things like leaks, and patterns in the events. You may be able to fine tune the machine and get either even better results or you may be able to adjust the machine so it is smoother, leading to better sleep.

As to the machine, I ave not used it so no comments.

Ont other item you may consider is a recording 02 meter. Sometimes there are 02 drops related to a change in breathing, but the events are not long enough to be recorded as an actual "event". (I think they need to be either 8 or 10 seconds long to be officially treated as an event)

Sleepy head will let you integrate the o2 readings and data from the machine and help figure out what is going on.

Welcome to the forum.. Sounds like you are one of those lucky people who take to this therapy like duck to water.

When you have time could you please look on the bottom of the blower unit of your machine and check the model number for your machine. It should be a 3 digit number with DS or REF in front or behind it.
Your equipment choice for right now points to the 550 model (50 series because of the "50" second 2 digits) and that humidifier and while it wouldn't be impossible for a supplier to have sold you that machine..the 560 model is the latest machine.
Note if you live outside the US the last digit might be a 1 or some other number instead of a 0. Means nothing except that the machines was sold outside the US.
The 560 model has a few different options to it over the 550...so just want to make sure you are showing the correct equipment in case later you need help and maybe one of the features available on the 560 might help you but we wouldn't know to suggest it because we would look at your equipment and think..."oh, that machine doesn't have so and so".

If your machine is a 560 or 561 or something similar in that 3rd digit this would be the correct machine choice
PR System One 60 Series Auto CPAP
and the humidifier would be
PR System One 60 Series Heated tube humidifier with heated tube (even if you don't have the optional heat hose at this time)

If you have the 550 (50 series) never mind what all I just said. Don't change anything in your equipment.

Regarding the software...you can do that when you feel up to it. Your AHI is good...you aren't seeing large leak times being reported and most importantly you are feeling darn good and that's really important.
I suspect that your software reports are going to be really boring which is good. There's no rush to run right out and get the software up and running...take your time if you wish. There's no urgent need from what you are reporting here.
It's your choice. Many people do well and don't want to bother with the software or don't even know about it.
Others like the validation they get with good "numbers" even if they are feeling good.

As this therapy gets old and boring you may want to look out of curiosity or you may simply not care. That's up to you.

I don't look at my data daily any more...long ago quit that but I will look at it if I make a little change or start using a different mask or something like that. Sometimes I download to the software just to make sure nothing gets lost and don't even look at it.
Up to you...are you the type of person who wants that validation or not? Some are and some aren't.

Thanks for the feedback Wilson and Pugsy.

My 02 levels were much better in my 2nd sleep study so it was something I never even considered monitoring myself, will definitely be something I look into and may add to gain extra data for the possibility of better treatment. Great advice!

Of course Pugsy was right about my equipment, I have made the appropriate changes to my equipment. RES 561 right there on the bottom. Think I will gradually start using the software just to gather the data, just hope I continue down the path I seem to be headed.

Appreciate the comments