Considering a through hike

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Bentley'sDad
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Considering a through hike

Post by Bentley'sDad » Fri Apr 21, 2023 12:44 pm

Ok all, here we go.
I was originally diagnosed with AHI 29.5. had a very hard time fitting a mask. I now have a mask that works well even though it seem to leak more than desirable. I have titrated my treatment using 95% threshold and and the system is working. My AHI is reduced to less than ONE currently! (Yay), the machine seems to average a pressure of 8.2. I am not obese at all but am trending to diabetic.

I have started walking 5 miles per day average and begun working out. I have changed my diet and dropped breads, sugars, and many other items as a rule. I have increased whole grains, oatmeal barley etc. The workouts had to stop for a torn Achilles but have resumed.
hanks for t
My GOAL: To Though Hike the Appalachian Trail when I turn 70 (about 3 years).

The Questions:
1. Has anyone been able to reduce their AHI from the mid-high 20's and manage it to less than 5 when not on APAP?
2. Has anyone used the Fitbit health, PO2, and Glucose monitoring systems in dealing with how apnea affects either?
3. Are there specific exercises that seem to help in maintaining low AHI without APAP?
4. Any advice for me?

MOST IMPORTANTLY: I want to be able to use charts from FITBIT in direct overlay with charts from my APAP machine data: Does anyone know of any such charting system?

Thanks for your attention all!
Autosense 10, 8.5-14cm, humidity 4. Various FF masks so far none acceptable, now on WISP.
Pic is Bentley, tree climbing. He prefers kids playgrounds with slides and tubes, etc.
He is a perpetual 6 year old. 5k to 10k walks a lot!

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zonker
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Re: Considering a through hike

Post by zonker » Fri Apr 21, 2023 1:08 pm

Bentley'sDad wrote:
Fri Apr 21, 2023 12:44 pm

1. Has anyone been able to reduce their AHI from the mid-high 20's and manage it to less than 5 when not on APAP?
the only way to know that is to take a sleep test without your cpap machine.

can't speak to the rest.

good luck on that trail walk!
people say i'm self absorbed.
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robysue1
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Re: Considering a through hike

Post by robysue1 » Fri Apr 21, 2023 2:49 pm

Bentley'sDad wrote:
Fri Apr 21, 2023 12:44 pm
The Questions:
1. Has anyone been able to reduce their AHI from the mid-high 20's and manage it to less than 5 when not on APAP?
APAP prevents the events from happening while you are using the APAP. But APAP therapy does not cure OSA and allow one to sleep without an APAP. It's like wearing glasses or a hearing aid: Glasses help your vision only if you wear them. Hearing aids help your hearing only if you wear them. The only way to see if something like weight loss has made a difference in your untreated sleep apnea is to do a sleep test without using the APAP. And for it to be accurate, you probably need that sleep test to happen after going without the machine for a few days.

2. Has anyone used the Fitbit health, PO2, and Glucose monitoring systems in dealing with how apnea affects either?
I've used my FitBit to measure restlessness during the night. In other words, I've used my FitBit to keep tabs on my on-again, off-again problems with sleep maintenance insomnia. I have my FitBit set to sensitive and the there is a reasonably strong correlation between FitBit arousals/wakes and funky stuff in the flow rate graph that is quite likely respiratory evidence of an arousal of some sort that lasts at least 30 seconds so they're long enough for the FitBit to notice. (Most of them are probably spontaneous arousals in my case.) But because the FitBit needs at least 30 seconds of "stuff" to identify a restless period, and a typical respiratory-related arousal from untreated OSA can last as little as 3-5 seconds, I'm pretty sure that FitBit arousal data is not a good way of attempting to monitor the AHI on nights when you don't use a CPAP.

Others have incorporated oximeter data to see whether they continue to have O2 desats while using PAP therapy. I don't, so I can't give you the particulars about which oximeters are easiest to use with Oscar. And there have been recent posts by Rubicon indicating that things like Wellvue rings for monitoring nighttime O2 levels don't sample frequently enough to really catch individual sleep disordered breathing events that cause an O2 desat.

Glucose monitoring deals with managing diabetes and prediabetes. I'm not sure that night-time apneas are reflected in glucose levels and I'm not sure there's an easy way to continuously monitor glucose while you are asleep to figure out whether it would be of any use.

3. Are there specific exercises that seem to help in maintaining low AHI without APAP?
Not that I know of. There is an indigenous Australian musical instrument called a didgeridoo that requires a special breathing technique. Occasionally you see claims (that are not scientifically backed up) that playing the didgeridoo can "cure" OSA. And for what it's worth, a didgeridoo is significantly less portable on a hike than a modern day PAP is: A typical didgeridoo is about 4 feet long.

4. Any advice for me?
For you goal of hiking the Appalachian Trail as a through hike, you will need to accept the idea of hiking with the PAP machine and some kind of battery to power it. A small travel PAP would be less weight to carry in the pack. CPAP battery kits have gotten smaller through the years: The ones that my husband and I use are the physical size of a large paperback, but they do have some noticeable weight. And then there's the problem of recharging the batteries. With care, it's possible to get 3 nights of use off one charge, but recharging does take time. If/when you're near enough to a regular car-camping campground, you can always use outlets in the public restrooms to recharge the batteries. There are also solar packs that are supposed to be able to recharge CPAP batteries.

MOST IMPORTANTLY: I want to be able to use charts from FITBIT in direct overlay with charts from my APAP machine data: Does anyone know of any such charting system?
I have yet to find a way to get the FitBit charts off of the fitbit site where I look at them. So there's no easy way that I know of to create a direct overlay of the APAP machine data (from Oscar) with the FitBit data (stored on their website).

When I've analyzed both sets of data together, I've done it the old fashioned (and highly inefficient) way: I look at the FitBit data in one window (or on one device) and I look at the Resmed data in another window (or on another device). And I manually scroll through the APAP data looking for the timestamps of important things flagged in the FitBit data. This also requires a manual synchronization of the two devices, which is hard to do perfectly, but easy enough to do at the "good enough" level: I put the mask on my nose, stare at the FitBit clock and turn the machine on as soon as the FitBit changes the minute. I then use the machine for 5 or 10 minutes and download the data into Oscar and adjust the clock offset in Oscar if needed to get the start time in Oscar to agree (close enough) with the start time on the FitBit.

I'll end with this: I've always wanted to do a through hike, but I know I don't have the skills for it. I've hiked many parts of the Appalachian Trail that are in or near the Shenandoah National Park (my family is from the Valley), and talked with many through hikers I've met on my day hikes. I do want to wish you the best in figuring out a way to make your dream come true.
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Bentley'sDad
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Re: Considering a through hike

Post by Bentley'sDad » Sat Apr 22, 2023 7:12 am

robysue1

I found this for downloading Fitbit data. Not sure how well it works though. Hope it helps. It may require an update of your device?

https://help.fitbit.com/articles/en_US/ ... e/1133.htm

When I talked to my doctor about hiking without PAP and ask him how serious that would be his answer was : You stop breathing. How serious is that?
However:
I have read some recent research regarding morbidity from apnea. It seems that actual morbidity from apnea begins somewhere around 40 AHI. Below that it seems to be a quality of life issue more than anything and possible long term affects with organ health (meaning short term is not an issue except for sleep deprivation). Hopefully new research will tell us more very soon. I am beginning to work out, change diet, and begin walking 10K regularly with pack weight being added slowly. I am hoping that increasing body strength and health in general will help reduce AHI without CPAP. Will probably need testing a few times before I decide.

I wish there was a method to retest on a regular basis instead of a one time test for diagnosis. I guess I had better place that in he budget for myself to pay or get on a study.

As to carrying a PAP on a 2200 mile through hike that travels up and down mountains a total of 70 miles vertically: carrying one pound is the same as moving ONE LONG TON (2200 pounds) up a 5 degree slope one mile.

It looks as if a 2 night battery, light weight cpap machine, hoses and masks would total over 3.5-4 pounds, then I would most likely need a solar panel charger and use it while hiking (inefficient at best as much of trail is shaded). So the sum would be about 1/7 of my desired total pack weight ; making just this and the pack itself over 20% of my total desired weight. My goal is maximum 35 pounds including 2 liters of water (5 pounds), 30 pounds would be perfect. SO the total of useful load would then be less than 20 pounds at 35 pound total. Of necessity, food will need to be at least 10 pounds minimum for 5 days at 3500-5500 calories/day. That leaves less than 10 pounds for tent, bag, clothing, cook ware, safety and medical kit and digital devices for online diary and communication.

Looks as if I will be pushing the minimalist ideology if I take CPAP equipment, and I will still have the issue of battery power. My trail schedule will not allow 1/2 zero day to charge every 2 days!

Conundrum.
Autosense 10, 8.5-14cm, humidity 4. Various FF masks so far none acceptable, now on WISP.
Pic is Bentley, tree climbing. He prefers kids playgrounds with slides and tubes, etc.
He is a perpetual 6 year old. 5k to 10k walks a lot!

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ChicagoGranny
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Re: Considering a through hike

Post by ChicagoGranny » Sat Apr 22, 2023 7:18 am

Bentley'sDad wrote:
Fri Apr 21, 2023 12:44 pm
1. Has anyone been able to reduce their AHI from the mid-high 20's and manage it to less than 5 when not on APAP?
I don't see anything in your posts that would indicate your OSA is cured. The cause of OSA is a narrow airway. Is your airway wider now?

What are your pressure settings?
zonker wrote:
Fri Apr 21, 2023 1:08 pm
the only way to know that is to take a sleep test without your cpap machine.
He could also sleep without CPAP at home for a few nights and see how he feels. I would bet he puts the mask on in the middle of the first night. :wink:
Bentley'sDad wrote:
Sat Apr 22, 2023 7:12 am
It seems that actual morbidity from apnea begins somewhere around 40 AHI.
How many people in that dataset attempted to thru-hike the Appy?

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Re: Considering a through hike

Post by chunkyfrog » Sat Apr 22, 2023 8:36 pm

Google Geraldine Largay.
Is there any rule against having support people check in on you?
Or even meet you along the trail with a fresh battery?

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Bentley'sDad
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Re: Considering a through hike

Post by Bentley'sDad » Sun Apr 23, 2023 7:31 am

Hi Chicago Granny! Long time, and to others thanks for responding,

My Resmed settings are currently 8.2 -13.4. My machine rarely if ever exceeds 10.2, generally that would be when awakening in the morning for some reason (after REM). Some nights when I fall asleep very quickly and forget to put on the mask I will awaken and put it on. Other nights I will remove it in my sleep. I would say removing it is more common but I rarely use it less than 4-5 hours either way. I probably should look at my charts and see if I can re-titrate the settings> I have been on these settings for a long time. I used 95% upper and lower. I have a feeling that the numbers might have changed for the better (just a general feeling) and have not been reviewing charts at all.

BTW, does anyone know how to download the data directly using WIFI?

My stats show less than 1 AHI average (about .7) with a high of 1.2. I am using the nasal pillow and constantly have what the machine deems excessive leaks, rare nights when I have a green indicator for leaks. This has been true of every mask system I have tried. I think I move a lot in my sleep which contributes to leaks, possibly the shape of my face contributes. I have begun tightening the head gear a little which has reduced the leaks some, but I wish to remain comfortable (pressure against my nose).

For the through hike there are several categories, with support and without. It would be very expensive to have someone meet up every two nights to trade batteries and a logistical nightmare to mail them (also the mail does not like batteries). Then again the trail is mainly about logistics and mental attitude.

I have almost three years before I engage the trail, so I have time to resolve many questions and to attempt to become truly fit. Part of that is ending smoking entirely which might help considerably as well.

I guess I will begin my workout regimen and as I become more fit possibly arrange new in home sleep studies to assess my current AHI without CPAP. One thing that I think might have helped is the fact that CPAP has conditioned me to sleep with my mouth closed. That in itself may actually affect AHI. Conditioning my mouth and tongue to remain in proper configuration. As one opens their mouth (as in a snore) the configuration of the throat does change and possibly contribute to events. Just my thoughts.
Autosense 10, 8.5-14cm, humidity 4. Various FF masks so far none acceptable, now on WISP.
Pic is Bentley, tree climbing. He prefers kids playgrounds with slides and tubes, etc.
He is a perpetual 6 year old. 5k to 10k walks a lot!

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Bentley'sDad
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Re: Considering a through hike

Post by Bentley'sDad » Sun Apr 23, 2023 7:45 am

Looked up Geraldine Largay. Terrible that she lost her way so close to the trail. A compass and knowing how to use it can be very important. She did the right thing though hunkering down and waiting if she felt truly lost. The better odds did not pan out.

Luckily I have years of packing and hunting experience and have a good sense of direction. Have even dead headed across mountains off trail and come directly to my own base camp without a compass (but with good maps). More worried about insect born disease than much else. Most hikers leave the trail from accidental injury or insect born disease. Some just have had enough of the trail when they leave. That is another base weight to add to the pack. Mosquito repellant and tick repellant- must haves along with SPF 50. WEIGHT! one pound equals one long ton mile!
Autosense 10, 8.5-14cm, humidity 4. Various FF masks so far none acceptable, now on WISP.
Pic is Bentley, tree climbing. He prefers kids playgrounds with slides and tubes, etc.
He is a perpetual 6 year old. 5k to 10k walks a lot!

Don.dbrw@gmail.com
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Re: Considering a through hike

Post by Don.dbrw@gmail.com » Thu Apr 27, 2023 4:54 pm

Best of luck to you! In my salad years I backpacked and rock climbed. Now with CPAP and being 67 I can't imagine backpacking or even camping. I hope you can make it work!

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sleepy-eye
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Re: Considering a through hike

Post by sleepy-eye » Thu Apr 27, 2023 6:59 pm

Best of luck doing the trail. As a kid, I always heard about the AT. A few years ago we did an East Coast road trip and stopped at Harper's Ferry. Met some wonderful thru-hikers. I admire anyone that attempts the trail. I follow the class of 2023 on FB. Now at 71 with bad knees, hiking is a no-go.