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New to Board and Desperate!
#1
Gross 
New to the board and DESPERATE!

I have had a terrible experience for the last 2 years. My GP sent me to have a sleep study done. Had it done, barely slept at all, due in some part to the uncomfortable wires, probes, sensors, etc., all attached to my head and chest.

The tech told me as I was leaving "oh, you have sleep apnea!" Believe it or not, I was NEVER contacted by the physician. All I got was a call back for a titration study, and after that, a call from the medical equipment salesman to come in for a fitting. Like most people, all he did was explain briefly (like off a sales brochure) what the machine did, and I picked out a nasal mask.

Now, I have only used it off and on for the first few months, and I never saw any increase in my quality of sleeping. I basically wake up every 2-3 hours. Recently I have been having terrible headaches that keep me from working.

After finding several websites, I found out more about my condition and my cpap machine. I have a ResMed S8 Elite II. I found the menu, and iut is set for a CPAP of 8, an EPR of 3, and that's all I could find. I have not been able to find any kind of memory card. Does this machine even have a recording capability?

I have been considering going back and starting all over at another sleep clinic with a new doctor, but part of me feels like this is redundant, since I have a diagnosis and a machine already?

The bottom line is even when I use the machine, I go to sleep quickly, but wake up wide awake after 3-4 hours, and I cannot go back to sleep, even with the mask on.

I feel like my quality of life sucks, and I don't know where to turn...
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#2
Your machine is data-capable and can take a data card. However, you’ll have to jump through some hoops to download the data. I have the S8 Autoset II.

First, the data card slot is on the back, near the top, on a small, plastic, removable panel. Your S8 might have the blank module instead of the data card module, which is just about impossible to find. However, the data card module is a simple piece of plastic that doesn’t contain any electronics (PM me if you want me to send pictures). You may be able to jury-rig something. If you take off the module, you will see a circuit board with some electrical contacts on top. The data card needs to be held firmly against these contacts for ten seconds for a data transfer to occur. It is not necessary or useful to leave the card in the machine between downloads.

Next, you will need a data card and a card reader. These are both becoming difficult to find, but they are available on eBay. The data card is a smart card resembling a miniature credit card. The card reader can cost as much as $100. You may want to check the Apnea Board’s supplier list to see if anyone still has the data card.

Then, you will need the clinician’s manual and the ResScan software (this is the easy part). Click on CPAP Setup Manuals for info about how to get the manual, and from that window, click on Adjust CPAP Pressure for info about the software.

Finally, the S8 series records far less data than the S9 series. You can look through the sample data in ResScan to see what I mean.

I’m not sure how to titrate the proper pressure using the Elite II. An Autoset machine would be beneficial for this purpose, or other board members may have some suggestions.
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#3
Welcome to Apnea Board, sunsethealthman! I am sorry that you are having such a problem with your sleep. I think you have turned to the right place for help. There are a lot of good people here, who will give you some ideas.

You are suffering from more than sleep apnea. You obviously have sleep deprivation if you are only getting about 3 or 4 hours of sleep. No machine will help you fall asleep. Regardless of what your sleep quality or AHI may be for those first 3 or 4 hours, (your machine I believe DOES have data capability), 3 hours of sleep just isn't enough.

If you can't fall back to sleep, is there anything that could possibly be keeping you awake? Are you consuming caffeine during the day in order to stay awake? Are you taking any other medications that may be ruining the quality of your sleep? Do you have any other health or mental issues we should know about? Have you tried taking melatonin or benadryl, which are relatively safe and can work for some people who have awakening issues?
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#4
Your machine S8 Elite is data capable machine shows efficacy data on the screen AHI (AI, HI) and leak. If you don,t how to read the data on the screen this video would helps and let us know AHI and leak data
http://vimeo.com/19565675
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#5
If you've had the machine for 2 yrs, a second study may be necessary, especially if you are experiencing problems.

I'd also go to another sleep doc.
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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#6
(06-20-2012, 05:15 PM)sunsethealthman Wrote: New to the board and DESPERATE!

I have had a terrible experience for the last 2 years.

I thought I would stop right there and do 2 things. First Welcome
Secondly, I want you to know that your experience is definitely NOT unique! Many of us go through the exact same issues and we end up here, trying disparately to make sense of it all and make things better.

You have a decent machine (by my standards, my machine is way older and records nothing! Smile ) so the issue is what is waking you up? Often when I am awakened after more than 2 hours of sleep I am awake until morning. The key is to find out why you are awake in the first place. There can be many factors that can wake you up. A mask leak will do it for me every time! I had a bout recently of my hands falling asleep which wakes me up. A noise can do it. The cat....or there are times they are lucky to be alive!.... can do it. But you need to try to figure out what it is that is waking you. Are you maybe mouth breathing? Dry mouth and throat may indicate mouth breathing. This will nullify any beneficial therapy from the CPAP as the CPAP's whole purpose is to keep your airway charged so that it stays open.

Once you can pinpoint the reason for waking up, you can take steps to correct this. Most of the time this can be fixed through various adjustments, like a chinstrap or a different mask. Occasionally it can require medication. I also have RLS and nothing wakes you up quite like the guilt of knowing you just woke yourself up by planting your foot full force in your wife's back! Sometimes I have to take meds. I am lucky in that I know what to look for and can take my meds when I need them (tonight is gonna be one of those nights!). But whatever it is, you need to identify the culprit so you can attack it and figure out how to deal with it.

Dealing with your machine is a large part of the equation, but there are also many other parts that make up a successful night's sleep. Welcome to the ongoing hunt for the perfect sleep! It is definitely the Holy Grail to most of us and we seek it on a nightly basis.
As always, YMMV! You do not have to agree or disagree, I am not a professional so my mental meanderings are simply recollections of things from my own life.

PRS1 - Auto - A-Flex x2 - 12.50 - 20 - Humid x2 - Swift FX
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#7
Wow - thanks to everyone who replied!

I have even tried Lunesta with the machine, and then I get about 5 hours sleep, but the Lunesta side effects are terrible.

I was given a chin strap and told to use it if I needed it, but the medical supply salesman stated that there was no way a person's mouth could come open, in that the air pressure to your nose would somehow hold your mouth shut! (Yes, he really told me that.)

Does anyone have experience with the full face mask that covers your mouth and nose? Any specific make, model, and where to order them from?

The only other issue I have is GERD from a hiatel hernia. That and a lousy job that I hate going to every morning.

BTW, I am 51 years old, male, and not overweight. I have always been the type to stay up late, even when I was a kid....even now sometimes I stay up til 1 or 2 am on the weekends, because I know I can't sleep anyway...

Like someone said on another post, I am just paranoid now that i am having terrible headaches, and that I am risking my health and maybe my life not treating my apnea properly.

I feel like I need to go to another doctor and do another round of testing, but then again, if you know you need the cpap already, wouldn't you just need another titration study?

Thanks again to everyone who replied!
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#8
(06-20-2012, 08:56 PM)sunsethealthman Wrote: The only other issue I have is GERD from a hiatel hernia. That and a lousy job that I hate going to every morning.

There've been a number of studies done that show links between GERD and OSA - as both a contributing factor and a symptom. I used to suffer from GERD pretty frequently... a few times a year. Haven't since I started CPAP 2 years ago... YMMV.
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#9
Quote:I was given a chin strap and told to use it if I needed it, but the medical supply salesman stated that there was no way a person's mouth could come open, in that the air pressure to your nose would somehow hold your mouth shut! (Yes, he really told me that.)

So....then...why do they sell them?? You know that's a load of horse biscuits, right?

Quote:I feel like I need to go to another doctor and do another round of testing, but then again, if you know you need the cpap already, wouldn't you just need another titration study?

Because your needs change. I've had mine changed 3 times in 9 yrs. Probably ought to be increased again. Just like with any treatment or medication, your CPAP and sleep quality and all that need to be evaluated on a regular basis. I think the rule of thumb is to see the sleep doc every year.
PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.




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#10
Hi sunsethealthman, First of all, welcome! to the forum, you've come to the right place as you have, nodoubt, found out, (Ha-Ha.) I'm sure sorry you are having such a rough time with your therapy. It would probably be a good idea to get another sleep study through another Dr. I know it seems redundant to you but things can change from time to time. The only thing I can say is don't be afraid to ask lots of questions. Best of luck to you on your journey to much better, (of course working toward,) near-perfect sleep.
trish6hundred
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