Newbie, CrossFit Junkie, Needs Help

[roster]

Here is part of an offline chat with CJ. She is newly diagnosed and wants to take control of his therapy from the beginning and get it optimized right away. Please help her with the questions in blue font and she will keep this thread updated as he goes along. Thanks.

......... Tomorrow I'm going to start learning my terminology etc because I start on a trial BiPAP on Thursday for 2 weeks. Just finishing up the test run on CPAP. When that time frame is up......I'm getting a copy of the results. .......... We only have two places (DMEs I think you said) that read, distribute, work with the various devices. AND get this.....in all of Atlantic Canada -4 provinces, (we have 10 as you know) there are only 2 sleep doctors. TWO. It takes 2 years to get in for an overnight sleep study. In order for me to go to my sleep study, it's like a major vacation or trip. I have to take the bus -off province, since I fall asleep when I drive (no Sleep Specialists on Prince Edward Island where I live), have to stay 2 nights at hotel or B&B to coincide with the bus schedules so, it's a big deal! I mean, it's definitely worth it but I better make sure I have all my questions ready for my last appointment coming up in February 'cause I won't be able to get in to see him again for a couple of years. What specifically should I ask; other than the obvious....details of what both the CPAP and BiPAP tests revealed? which machine should I purchase to benefit me the most? Also having Narcolepsy-how will that medication interact with the PAP device? How much info do I have to tell people at my place of employment (....... with the Federal Government-HRSDC)? ........
.........
Crossfit Junkie

[roster]

.......Also having Narcolepsy-how will that medication interact with the PAP device?
.........
Crossfit Junkie

Junkie,

-Which medication are you taking for narcolepsy? I wonder if you really have narcolepsy or if it is simply exhaustion and sleep deprivation from the sleep apnea? Maybe it goes away when you get a good CPAP therapy going.

-Which mask are you using for the CPAP trial?

[roster]

......... Tomorrow I'm going to start learning my terminology etc because I start on a trial BiPAP on Thursday for 2 weeks. Just finishing up the test run on CPAP. When that time frame is up......I'm getting a copy of the results. .......... We only have two places (DMEs I think you said) that read, distribute, work with the various devices. AND get this.....in all of Atlantic Canada -4 provinces, (we have 10 as you know) there are only 2 sleep doctors. TWO. It takes 2 years to get in for an overnight sleep study. In order for me to go to my sleep study, it's like a major vacation or trip. I have to take the bus -off province, since I fall asleep when I drive (no Sleep Specialists on Prince Edward Island where I live), have to stay 2 nights at hotel or B&B to coincide with the bus schedules so, it's a big deal! I mean, it's definitely worth it but I better make sure I have all my questions ready for my last appointment coming up in February 'cause I won't be able to get in to see him again for a couple of years. What specifically should I ask; other than the obvious....details of what both the CPAP and BiPAP tests revealed? which machine should I purchase to benefit me the most? Also having Narcolepsy-how will that medication interact with the PAP device? How much info do I have to tell people at my place of employment (....... with the Federal Government-HRSDC)? ........
.........
Crossfit Junkie

Demand complete copies of your sleep studies. I don't know about Canada, but in U.S. this is your right by law. You can study them and ask questions here to help with interpretation.

The doctor should explain the details of your sleep studies. At the very least he should mention sleep efficiency; sleep architecture; number, type and duration of apneas; effect of position (side sleeping, back sleeping); and any comorbidities observed such as restless leg syndrome. He should explain the prescription, why the settings chosen and why the type of machine. Insist on a machine that has full data capability including a data card. You may have to buy the software and card reader separately as at least in U.S. insurance will not pay for it. You do not need a prescription for software and card reader and they can be purchased from cpap.com.

Once you get the machine prescription, check back here to discuss the diagnosis and the machine. Be careful because so many people pick up the machine first and then later find out it is not truly data capable. Insurance will not pay for another machine at that point. Be careful also that suppliers will tell you a machine is data capable and then later you find out it only records hours of usage - no damn help.

Maybe someone can post a complete checklist of things to ask the sleep doc.

Search for Xyrem here and you will see many posts. No personal experience but by my recollection many CPAP patients use it and often report good results. It is a powerful drug with high potential for unwanted side effects.

It probably sounds awfully complicated now but after awhile it will get easier.

I wish you good luck but can tell you are taking control and now waiting on luck.

[crossfit junkie]

Thanks Rooster and all who respond! I read all these posts so carefully and digest every bit of info!
CFJ

[RipVW]

Hello & Welcome, crossfit junkie! Glad you found this forum--SO much useful info and everyone here is so willing to help!

"You are getting sleepy . . ."

[roster]

......... Tomorrow I'm going to start learning my terminology etc because I start on a trial BiPAP on Thursday for 2 weeks. Just finishing up the test run on CPAP. .........
Crossfit Junkie

How are the trials going? What are your pressure settings? Which mask are you using?

Regards,

[crossfit junkie]

Good morning! (Nice to say the word 'good')
Trials are going better than at the beginining. I think I have the BiPAP settings (IPAP MAX and RISE) set to suit my spontaneous breathing pattern. (1.6 and 400) How do I know? Well, although it takes me a really long time to fall asleep, about 1 and 1/2 hours (as opposed to literally 10 seconds before treatment) - I DO wake in up in morning feeling pretty good. When I initially open my eyes the machine and I are 'one'. Our breaths are exactly the same.I wake in night a few times, but not every 10 minutes like I've always done. So, probably getting 4 hours sleep with machine and feel 90% better than I did before treatment. I don't fall asleep during the day now, have plans to do a return to work next month (I've been off 1 and 1/2 years) as I became totally disfunctional in regards to sleep. Impossible to stay awake on conference calls, at the computer at work, in meetings-was put off on disability. Hey folks! I'm back!!
Seriously-this is a god send and I'm so, so grateful.

I will make myself adapt to BiPAP or CPAP (which ever it ends up being) no matter what it takes, because it is giving me back my life.

Pressures on BiPAP- I'm at 15/9 now and have to work up to 18/10. Pretty strong force. Any tips for falling asleep with that pressure? Great mask- Hybrid Mirage Swift leak rate averages .04% (no leaks virtually). I am sticking with it for sure.
Energy levels? Have always been over-the-top (up to distances of 100km (67 miles) nonstop running and triathelite adventure racing up to 24 hour races)
Won't talk about this on this site-but take meds for the Narcopepsy too. Have started stimulant Progivil 300mg/day and am looking at narcotic-Xyrem. It says it has side effect of breathing problems when asleep so I'm leary of that one. http://www.xyrem.com/Summary-each night it gets easier and I feel better. Guess that's the best news anyone could ask for. Look forward to hearing from you all. Sleep well!
CFJ

[carbonman]

Hey folks! I'm back!!
Seriously-this is a god send and I'm so, so grateful.
Summary-each night it gets easier and I feel better. Guess that's the best news anyone could ask for. Look forward to hearing from you all. Sleep well!
CFJ

CFJ, I have really enjoyed following your progress.
I truly believe it is a God send, also.
I give thanks for this blessing everyday.

If you haven't lived the pain and fatigue,
and then experienced the relief and rebirth,
it is very hard to expain to an "outsider".

All the best to you, as your journey continues.

Maybe I'll see you on the road someday.

[roster]

.......Summary-each night it gets easier and I feel better. Guess that's the best news anyone could ask for......
CFJ

Thanks for the update and congratulations on the progress!

There is one thing I always nag people about at this point. When you are ready for your own machine, be sure to get one that has a data card and is what we call "fully-data-capable". IMO, it is a necessity to ensure that you are getting optimal therapy.

Some medical workers will tell you that a machine is data capable and then later you find it only records hours of usage - not good, so be careful.

With the right machine you can buy a card reader and software to monitor key data such as apneas, hypopneas and leak.

Regards,

[roster]

Junkie,

Here are some great links for you courtesy of Wulfman.

Here are three links to get you started:

https://www.cpap.com/cpap-compare-chart/all-CPAP

https://www.cpap.com/cpap-compare-chart ... sting-CPAP

https://www.cpap.com/cpap-compare-chart/all-BiPAP

If you have any questions, please feel free to ask.

Den

Best regards,

[roster]

CFJ,

Another week has passed. How are things proceeding for you?

Regards,