Trying again, 2 years later

[BrianR4743]

1st tried CPAP in 2007, after being diagnosed with moderate-severe sleep apnea in two sleep studies. I struggled with several different masks and pillow sets, and became increasingly frustrated and exhausted. I woke more mornings than not with the headgear on the floor, a ripping headache (as was usual) and just beat. After about 2 1/2 months, I called it quits, and decided to accept the fact that I was destined to feel poorly, and was best sleeping away from my sweetheart, as my snoring was causing her too much grief. We read up on UPPP surgery, and decided that it might be a viable option. I had the very brutal surgery in late 2007, along with septoplasty, and hoped for the best after recovery. No such luck, and very disappointing. Wouldn't recommend it to even my worst enemy.

We began discussing the risks associated with sleep apnea again recently, and a plan of what we might do moving forward. Accepting the risks and living life in a fog was no longer a choice, so we started the process again. I found a great physician and sleep clinic in Orange County, and had a sleep study on 10-25. The plan of attack was to get the study, and then get an oral appliance to advance the mandible, which sounded like a great option.

I trotted of to my dentist after receiving my prescription for the appliance, only to find that I had a condition called bruxism, which caused me to grind my teeth during the night. The dentist thought that this was a condition associated with sleep apnea, and found that many of my teeth were badly fractured as a result. He suggested that we put off creating the appliance until the necessary dental repair work was performed, a process that will most likely take over a year due to the cost involved. Another roadblock to getting healthy.........

I decided to give the CPAP treatment another round, as I'd read that the machines had advanced some over the past couple of years, along with the masks. I had a 2nd sleep study done on 11-15, and was fitted with a Swift LT, which was pretty tolerable. After watching about 30 minutes of TV, I killed the lights, and was asleep within 35 minutes. The next thing I knew, the test was complete, and it was time to go home. I experienced my 1st morning in many years with absolutely no headache and no morning fog! It sure seemed like we were on to something good here!

My MD's office contacted a local DME supplier this week, which got me lined up with a Resmed S8 Elite machine, along with a Swift LT mask. Here's my 1st week's experience:

Wednesday: Went to be around 9pm, and watched TV with the mask on for about an hour. Lights out at 10pm, asleep shortly thereafter. Woke at 1:45am with rainout, got everything dried out and back to bed by 2am. Woke up at 7am, feeling pretty good, NO HEADACHE! Machine says it delivered 10 hours.

Thursday: Turned the humidifier from 3 to 2, and hit the hay at 9pm. Woke up at 3am with rainout! Was tired, so said to heck with it and turned off the CPAP. Bad idea… woke at 6:30am in a fog with a headache. Won't do that again!

Friday: Turned the humidifier down to its lowest setting, and went to bed at 10pm. Tossed and turned and was awake most of the night, fighting with uncomfortable straps and the pressure from the nasal mask making my upper lip very sore. Got out of bed at 6am feeling pretty miserable, with a chafing on my upper lip and strap marks all over my face and head. Must have had everything adjusted wrong. Still learning.

Saturday (Yesterday): Spend a good part of the day reading the cpaptalk.com posts regarding the different phases of adjusting to CPAP, rainout, comfort tips, etc… I took the advice of a few, and purchased Ayr Nasal Gel (GREAT stuff!) and moleskin patches. The gel made my upper lip area feel better in a short time, and I cut a small strip of moleskin to find on the area of the nasal pillows that rest on my upper lip. Went to bed at about 9:30pm, lights out by 10. Like magic, I was out, without a bit of discomfort. The moleskin tip really worked out, as I woke a time or two during the night and didn’t even seem to feel it! Up at 6am this morning feeling great, again no headache! 8 really great CPAP hours!

A great help: Ayr Nasal Gel = A great help
Moleskin at contact points = Relief like I couldn’t believe.

Still to try: Pad-A-Cheek strap pads for mask comfort
Fleece hose cover to reduce rainout

I’ve learned a lot from the posts I’ve read here, and am trying to approach CPAP with a “can do” attitude”. The tips and secrets from others who have posted are much appreciated, and I’m sure looking forward to getting and staying healthy.

Thanks!
Brian

[kteague]

Well, better late than never, right?! Sounds like you've earned these successes. Having some successes that allow us to get get a glimpse of how good it can be are motivating. Too bad you didn't have those two years ago, but it's onward and upward now. Thanks for sharing your story. It may influence someone who is yet one night away of finding some small sign of success to not give up.

[plr66]

You GO, Brian!! Your story makes me smile. Not the frustrations and wake-ups, but your persistence, your commitment now, and your steps of success. Great that you're back and reading the wealth of suggestions here to help you on your way. I went through a similar contributing-dental thing with TMJ and teeth grinding, which was addressed over a period of about 5-6 years, and has just been completed to a very slight improvement, now that I'm 14 months into CPAP therapy. (I had no idea I had OSA at the beginning of all that--but just to say that there is no reason whatever to place your hopes on dental work or appliances to the delay or avoidance of cpap treatment! So keep at it, Brian. Also definitely get padacheeks and keep your hose under the covers rather than over your head!!

[pmcall57]

I just love your persistence, Brian. Thanks for the inspiring example! And I'm going to give that gel another try.

Btw, I use the same mask as you ("for her" version) and tried various things to end the rainout, which was waking me up in the middle of the night. Hose cover didn't do the trick -- I keep my bedroom very cool -- so I splurged on the Sleepzone heated hose. Bliss. (Also tried going without the humidifier, but ended up with a stuffy nose that way.)

Ah, teeth grinding ... I've worn a night guard for 15+ years. It's quite an ensemble now with my mask. I'm hoping treating the OSA may help the grinding; we'll see!

Best of luck!

Pam

[Gerryk]

Congrats Brian,
Two years later you went back on your own. I was diagnosed in 04 and had just about everything go wrong and didn't get back at it until about 13 months ago and my doctors urging.
How are you doing with the grinding if your teeth? Are you using a chinstrap? Have you tried sleeping with a standard athletic mouth guard. You don't need one of those that costs 50 bucks, your only using it to protect your teeth when you sleep. My wife uses one when she sleeps and it saves her teeth.

Gerry

[KatieW]

Welcome back Brian! Thanks for sharing your story. Your struggles and how you are overcoming them is inspirational. I hope to keep hearing about your progress.

[Muse-Inc]

Welcome Brian! Thanks for sharing your re-start and 1st week of CPAP therapy, I'm sure it'll help those facing similar challenges and when we're in that place we need all the inspiring stories and suggestions we can get . Post your numbers; they'll back up how good you feel!

[BrianR4743]

Thanks for all the kind words! What a supportive group!

I'm not aware of how to get my numbers. I've got a Smartcard to send info to the DME dealer to send to the MD, but no reader or software. Is that something I should budget for down the road as well?

The only info I can retrieve is the number of hours the machine is running.

Brian

[plr66]

I'm not aware of how to get my numbers. I've got a Smartcard to send info to the DME dealer to send to the MD, but no reader or software. Is that something I should budget for down the road as well?
The only info I can retrieve is the number of hours the machine is running.
Brian

No, Brian, that's something you should budget for ASAP, not "down the road"! Being able to track your own data is what will make the difference for you between just "compliance" of using a machine every night, and actually understanding and managing your treatment. Software and reader are as important as your cpap machine. I'm not as familiar with your machine, so others will guide you in using what your read-outs can display.

[Muse-Inc]

Check your User's Manual. If you press the right and left buttons next to the up and down arrow buttons for 3 seconds, you should be able to see the data for your previous night's sleep, like leak, AHI, AI, and HI, maybe other data not sure. The data will be displayed up until noon, so note it when you get up. I keep a log and track all the data to review for leaks (while I remember what might have occurred during that sleep session) and for trends.

If the Elite has the mask fit feature, use it to determine what an 'excellent' mask fit feels like (if it does, it comes on after you press the start button for 3 seconds, press again for 3 seconds to set for sleep or press quickly to turn off).

[Gerryk]

Brian having a reader and software is what helped me nail things down. The DME is basically concerned with compliance. Some of them will forward the data to your doc. I was documenting things and my DME finally said to my doc that I am going way beyond trying and I am in compliance as far as use and wearing the mask but that they needed to do something else to help me. I finally had surgery tonsilectomy and UPPP. I am now doing great. But none of this would have happened if I hadn't been monitoring things myself and going over the data with my DME.
Oh as far as compliance goes, I just downloaded my data and sent it to them via email attachment. They don't want my card or machine in there as long as I email the data.

Gerry

[BrianR4743]

Excellent info Muse-Inc! Thank you!!! Wish my DME dealer had explained this simple step to me. Another benefit of joining cpaptalk.com forums.

Another good night last night (no headache), with the following results:

Hours: 9.29
Leak: 0.28/s
AHI: 3.5
AI: 0.4
HI: 3.1

Any help in learning what this translates to? This is great!

Have a great day,
Brian

[BrianR4743]

I've referenced the forums, and got the answers I was looking for. Looks like I've got a bit of work to do on leaks. Found my mouth open a couple of times last night , which might cause the reading?

[Muse-Inc]

Losing therapy air is why I hadda trade my beloved OptiLife pillows mask for the RespCare Hybrid. My jaw did not drop, it was a loose lips phenomena so a chinstrap would not have helped me.

[DoriC]

Good luck, Brian, looks like you're on your way!