Making Progress after lots of effort.

[jbankson]

I first discovered this forum in September 2016 after trying and failing numerous times to get my sleeping disorder resolved.

I knew it was critical as I continue to age but was one of those who lives alone and always felt like I was sleeping fine. It was traveling with my best friend on some long trips where I really became aware of what was happening. I hated the sleep study and could never understand how it could be accurate with all those wires and devices taped and connected to you. I was always a stomach sleeper so laying on my back during the study only made it worse. My take away was that it was a money making business and MOST patients willing to go to a Sleep Clinic were subject to being diagnosed with Sleep Apnea by default.

This went on for years (first diagnosed way back in the 1980's but never took the next step with a prescription. At that time I was labeled as "moderate". I took another "home" style sleep test (in 2012) and this time it came back "severe" with an AHI in the 40's. I understood the ramifications but because it was such a struggle trying to use my machine, once again, I put it in the closet and blew it off.

This past September, for whatever reason, I decided to try again. It has not been easy but I decided to really make an effort and "learn" more about things. It began with a visit to these forums and I have to say has led me to this post today. I posted some desperate pleas for help originally in October but kept reading and got some ideas. My clinic admin took me under her wing and was very supportive. My machine was paid for so there were no insurance issues with compliance. The cost of masks and such would never be covered because I have yet to come close to my deductible these days. 15 years ago with deductibles as low as $200 it was different. Today I sit with a $2K deductible so shop for supplies based on sales and specials.

Anyway, again, nothing but struggles with starts and stops. But I kept reading and learning along the way. Some ideas grabbed my interest but others made me nervous. (IE: Taping my mouth shut!) I suffer from the thick neck issue (18.5 inches) and as such have never been able to sleep on my back. I cough and struggle even with a CPAP. When I gained weight, stomach sleeping was uncomfortable so I learned to become a side sleeper. I struggled with leaks and noises and ramps ups hitting the upper limit of 18 on my machine which only made it worse. I was able to get 3-4 hours most nights which my admin was pleased was at least something but I would rip the mask off during the night.

One thing she mentioned which I had forgotten about was a dental appliance. I had gotten one years ago from a dentist friend and left it in a hotel room while traveling. The laws changed and it became hard to find one again. While not pushing a particular brand, she mentioned that when I travel for my quick overnight meetings (3 or 4 times a month) I could try a dental appliance to assist my sleep in lieu of dragging my machine around. She mentioned the SnoreRX so I ordered it and set it up. I then read where someone mentioned a neck collar. I went to CVS and have to admit it was not horribly uncomfortable. Is it better without it?, sure but read on. I then ordered one of the firmer sleep apnea pillows which lifted my head but allowed support while overhanging my face over the edge.

So this may sound completely insane but this week proved to be my winning week. I now have 7 nights in a row where the mask has been on for a full 7.5 to 8 hours each night. It is funny to watch me get ready. Set up my mask, insert my SnoreRX and then wrap the collar around my neck. (Let me also add here that I learned on this site how to adjust the settings on my device. My admin has raised the setting to 18 based on the initial struggles. I lowered it to 13 when the leaks became unbearable.) I lay on my side and all of a sudden it is working with the combinations I have come up with.

I then learned about the software available to read my stats off the storage card. Again all info learned from this site. Despite my success I did notice that I was hitting the maximum of 13 CWP a lot during my better nights. So while really please my latest AHI the last two evenings came out as 3.8 I want to try and get a little better now that I have not woken up once by a leak the past 7 days. So I just raised my maximum to 15 CWP.

I would have loved a doctor/patient relationship that allowed me the freedom to discuss these things and work together towards success but the rushing in and out of clinics did nothing but make my sense of frustration worse.

I have to believe that finding a way to make it through the whole night day after day was the goal and by reading an learning from others stories, posts and understanding the equipment better I am getting there.

I do still have some goals. First I would love to be able to move to a nasal mask as using the SnoreRX does produce more drooling which I hate getting in the mask. But my concern is going backwards so at this point I will stay with my Simplus full face mask. I did try the new F20 mask but it was got a good mix with me. The slightest jaw changes resulted in severe farty sounds which would wake me up instantly.

So the SnoreRX helps jut my chin forward and open the airway even a little. The collar keeps my chin from dropping and having all kinds of leaks. The outcome is now 7 nights and counting with my average AHI down to 5.8 across those 7 nights with with lows of 3.8 on a couple of nights. A FAR cry from the upper 30's when tested.

Folks, it has taken me 4 years to get to this point. If you are reading this then you are in the right place. This forum gave me the confidence to try things and understand the terms and treatments for this condition. I now feel refreshed and am starting today with my walking again. I'm hoping to see this all result in some weight loss which should continue to improve my condition even more.

Thanks again to this wonderful forum.

Jeff

[chunkyfrog]

Jeff, you might find a mask liner, like Pad a Cheek,
will silence the rude noises, so you can use your F20.
Very good post--thank you.

[LSAT]

Regarding the F20...Make sure that you are wearing the correct size. I am between a M and L. The M works very well..no leaking, but feels a little tight. The L feels good, but some "farts". I'm undecided which I will keep. I may just go back to my trusty Quattro./