Thru-hiking with Sleep apnea

Thru-hiking with sleep apnea is a challenge. I’ve been under the watchful eye of a sleep physician for several years. She diagnosed me (Steve) with moderate obstructive sleep apnea.  I learned all about this when I had issues with A-FIB for several years.  

At home, I have a Dream Station CPAP machine that sits next to the bed. It’s very, very quiet. I found a strong correlation between my A-FIB and my sleep apnea. (My cardiologist AND sleep doctors had no idea what to do with me. I made graphs plotting my A-FIB versus my sleep apnea!) So, anyway, I take my heart health seriously. If wearing a dang CPAP device will help me have a happy heart, I’ll wear the darn device. So, I have a compliance rate of about 99%.

However, it’s a love-hate relationship between the CPAP and myself. The CPAP is a real intimacy killer. Each night I strap a device on my face when it’s time to sleep. There’s no conversation between Noelle and I once I buckle this baby down. It’s just “good night”!

I purchased a portable, battery powered CPAP several years ago when we began thinking about hiking the PCT. We thought that thru-hiking with sleep apnea may have challenges, so we took this small device backpacking a few times prior to our PCT trek. In addition, I took the portable CPAP machine on quite a few business trips to check it out with hotel travel. It’s a HDM-Z1 Auto Travel CPAP Machine. (I’ve since upgraded to a HDM-Z2)

thru-hiking with sleep apnea

So, how did the HDM-Z1 Auto work for backpacking?  Let’s look at the weight first. 

Weight summary of HDM Z1-Auto

Weight of the CPAP

The combined weight was a bit problematic. If I’m shooting for a base weight of roughly twenty pounds, the CPAP device and attachments themselves are taking up roughly 25% of my total weight. Still, if I need a CPAP I need a CPAP, right? I can just carry a little more weight than I wanted, so that I could carry the CPAP along. So we took the (kind of heavy) HDM Z1-Auto out on the trail as part of a few shake down hikes. I found myself dropping a few curses here and there about the weight of my pre-PCT pack. Five pounds is a LOT of extra weight for a thru-hike….

thru-hiking with sleep apnea
Collapsible travel CPAP hose

Noise levels are subjective. What’s loud to me, may not be so loud to you, and vise versa. What’s not subjective though is the relative silence of the trail at night. There are animal noises to contend with along with wind/water/weather related noises and the odd assorted giggle, fart or conversation from other hikers. Other than these items, there’s not that much noise on trail.

Noise of the CPAP

We took the CPAP out on the trail…and the noise drove us crazy. At home we didn’t even really notice the noise of the CPAP…on the trail…Wow, it was really LOUD.

After two nights of noise, I started looking for options (other than turning it off) of quieting down the whole darn operation.

I swapped out the default tubing for a Travelhose collapsible CPAP tube. I had found a few mentions on other websites of the collapsible travel hose being quieter than the default tubing . It was still rather loud.

I added in the HDM Qtube muffler. I still didn’t notice any discernible improvement, but I did have issues with the muffler becoming dislodged from the tubing in the middle of the night. The noise level would spike and I’d wake up gasping for air. Not pleasant, not one tiny bit. The muffler also added additional components; an hose adapter, and replacable muffler filters.

I tried again and added in the HDM Heat/Moisture Exchanger (HME) Inline Humidification Solution Unit. I did observe that the noise level dropped when I used the muffler and the HME. But again, this is another component that I’d need to carry with me.

What about cleaning supplies for the face mask? How to clean the tubing itself?

I installed an app on my phone and checked the noise level when I was using the CPAP. Roughly 66db on the exhale. Normal conversation is about 70db. So, the was basically like having a full blown conversation in the tent all night long!

So I wasn’t really in love with all the components that I’d need to carry with me on the trail to use this system. It just seemed like a lot of moving parts that would easily become lost or filthy.

How to Power the CPAP while hiking with Sleep Apnea

So how to power the CPAP? The CPAP device itself, including the power supply cord, was one purchase. The battery was an additional purchase. The battery life was rumored to be “two days”. What the heck did that mean? I went to the source/supplier and asked them for clarification. It was their advertisement after all that said a long distance hiker used the HDM system!

After a lot of back and forth email I touched bases with “Stuart the hiker”. Stuart has hiked part of the Colorado trail and part of the PCT. Stuart said he set the system on the lowest pressure setting possible, 4 or 5 psi. He would go to sleep, sleep for a few hours, wake up, strap up, and then sleep until dawn before disconnecting. So in essence he was extending the battery life by limiting the psi and daily use time. Hmm…

So how did he handle recharging the batteries? (The HDM won’t recharge a battery while you’re using the system.) Stuart indicated that he carried two batteries and charged up every four days in town at a hotel or motel. The math didn’t add up for me; recharging the battery can take twelve to sixteen hours. How could he recharge the batteries without spending two days at a hotel? Stuart responded that he had forgotten that he actually had a third battery that he carried and had a bounce box with a second re charger.

At this point I considered the HDM to be a bust for a thru-hike attempt. The noise, the weight and the battery charging issues were too much for me to overcome.

What do other hikers do?

I reached out to the friendly Facebook PCT hikers group and asked for their input. Is anyone else thru-hiking with sleep apnea? The response wasn’t particularly helpful. Here’s my summary of the responses;

Lose weight, just say “screw it” and snore, tape my nostrils closed, check into a dental device.

I checked with my primary sleep doc about the dental device and she advised me to buy a cheap one on-line and not to spend much money on it; her input was that it wasn’t going to work, so save my money.

I went to my dentist, who said “oh heck yeah, we create Mandibular Advancement Device’s (MAD) all the time!” I opted to have my dentist create a MAD for me. It took a few weeks from the molding process to the fitting.

The sleep apnea mouth guard

I’ve come to have a love hate relationship with the mouth guard. Does it work? Yes. The device locks down onto the upper and lower molars. The top of the mouthpiece is connected to the bottom of the mouth piece. The device “pulls” the bottom jaw “forward” and that opens up the breathing airway and eliminates the snoring.

The pros and cons of the Mouth Guard

The Pros: It’s small, easy to clean with a toothbrush and requires no recharging.

The Cons: It’s uncomfortable, my dentist really had no idea what she was doing, it’s painful after a few hours and I’m slobbering like a dog with a juicy ham hock when I’m wearing the device.

The initial feedback from my dentist was “wear it and continue to increase the the tension” until the tension (forward thrust of the lower jaw) was maximized.

hiking with sleep apnea
Adjustment with a tiny wrench increased the forward jaw placement

I initially found the device to be uncomfortable and I could only wear it for a few hours per night. I tried to sleep on my side when I wasn’t wearing the device. After a month or two I found that I could wear it for five or six hours, but usually woke up and removed it around 4 AM. I increased the lower jaws “forward tension” once every few weeks until it was maximized.

Somewhere around month four of the hike my jaws really started to bother me. I recognized in the mornings that my jaws were no longer “aligned”. The upper molars no longer fit correctly with the lower molars. I had a difficult time chewing for the first few hours of each day. Chewing meats/hard objects became a tad difficult. I was able to logic through what was happening, but I was kind of stuck without too many options.

I found myself waking up at night after only a few hours and spitting the device out. It hurt my teeth. It felt like there was a little person in my mouth using a tiny little crowbar on my teeth. I was worried that my teeth were moving all around in conjunction with my weight loss. Apparently, thru-hiking with sleep apnea causes issues beyond just poor sleeping.

How about after the hike?

So….Three months after I stopped hiking, and stopped using the mouth guard, I went back to my dentist. I said “hey, this darn thing moved my teeth all around”. The dentist said, “oh no, these devices don’t move teeth. If your teeth moved it was normal movement.” How strange then that I have just about a centimeter (yes, a centimeter!) of movement on my two bottom teeth where the device attached to my teeth? I think the dentist was in a complete ass cover mode, perhaps, just perhaps, the tension was set too high based on her input to keep cranking it “up”.

The centimeter gap is problematic. I have a new hobby called excessive flossing. The gap is big enough that pretty much everything gets caught in my bottom teeth where the MAD connected to the molars. Not a big deal in the scope of life, but it kinda hurts when it happens. The Good Dentist’s advice is to have two crowns replaced to close the gap’s. We’ll see how this plays out over time. Since I JUST had two crowns installed prior to the PCT hike, I’m not so game to just swap them out!

Bottom line: CPAP or MAD? I’d take the MAD option, but I’d really hunt to find a dentist who has experience with the devices. It’d be ideal to find a dentist who has been thru-hiking with sleep apnea. Anyone know one?

6 Comments

  1. Michael Brown

    Steve, my wife and I are preliminarily planning to do the PCT through hike in 2025. I also have sleep apnea and have been asking my dentist, physician, and sleep doc for information/advice on how to manage the not-insignificant problem of treating the sleep apnea while on the trail. A few other points in addition to your excellent discussion. 1. Some people have only obstructive sleep apnea, their airway closes off when the throat muscles relax in deep sleep. This can be treated with the simplest cpap machine, including the smaller travel models. Others, like myself, have significant central sleep apnea in which, for some largely unknown reason, the brain periodically stops sending the signal to breathe to the chest and diaphragm. This form of sleep apnea, unless very mild, is treated with a cpap machine that also has a feature called adaptive servo ventilation. When you aren’t trying to breathe, ie having a central apnea, the machine gradually increases the pressure until this pressure succeeds in eliciting respiratory effort. My machine works great but doesn’t backpack very well and uses a lot more electricity than the standard cpap. Additionally, the travel cpap, at least the one from Resmed, does not have the ASV setting available. My evaluation of options started with a question to my internist about light weight cpap options. He suggested hiring a 20 year old to carry my pack (I’m 66) Not a bad option. My sleep doc ordered a home sleep study to get an up to date sense of how bad my apnea is and how much of it is central vs obstructive. If its mostly obstructive, I would be ok without the ASV for a while and might, might that is, be more likely to loose 25 lbs before our trip as weight loss clearly improves obstructive apnea.
    2. I heard of a kayaker with the same issues who brought a foldable solar panel to charge his cpap battery every day. You might be able to rig this on top of a backpack, at least on days with some sunlight, and avoid having to leave the trail every few days to recharge batteries. 3. Diamox, is a diuretic which is often taken to treat or prevent breathing issues at high altitudes. It does this by making your blood slightly more acidic, which stimulates breathing due to increased carbon dioxide in the lungs. I know some researchers have looked into using diamox to reduce the risk of central apneas but I don’t have a real feel for the magnitude of this effect. 4. There is now an increasingly popular surgical treatment for obstructive sleep apnea, called “Inspire” in which the physician places what looks like a pacemaker under the skin of the chest. The wires, rather than going down to the heart are tunneled up into the neck and in contact with the hypoglossal nerve, the one that would let you stick out your tongue for example. After the surgery has healed, they give you a remote control and you turn the device on when going to sleep. It sends just a tiny current to the nerve, enough to tense the tongue slightly, so it won’t flop back into the airway. This can be a great answer for the right candidate but wouldn’t help me. 5. The “oral device” you might have your dentist fabricate can be helpful also, but seems to be best for more mild cases of obstruction, where the patient doesn’t have to maximally crank the lower jaw forward which is often uncomfortable and can cause teeth issues like yours.

    I appreciate the information you shared, have you come up with any other solutions?

    Reply
  2. Heidi Halverson

    “Somewhere around month four of the hike my jaws really started to bother me.“

    “OMG doctor I have this terrible pain in my jaws, oh what could it be? This teeth-wrenching device I keep wearing and tightening, no – how could that be?”

    When all else fails use common sense. Second opinion, perhaps talk with a orthodontist. Between several years of orthodontistry for me and my kids I don’t think moving your teeth is no big deal. Dentists are trained as doctors but run their practices like quacks. I had one who tried to convince me that I was grinding my teeth at night and needed a night guard. I was like but I’m pretty sure I don’t. He said if it was his wife’s mouth he would want me to have the mouth guard. I backed away slowly. I don’t think this thing needs to be that tight. Get it to where it works and then don’t wrench on it anymore. Have you tried nose strips? Those sticky things that open nasal passages. Might help.

    Reply
    • mcgarveysan

      This time out I’ve dialed the “intensity”, or jaw extension, down to the minimum instead of the maximum. It seems to be helping. I’m also waking up about a half hour early and spitting the darn thing out to give my jaws time to realign before I eat my breakfast.

      Reply
  3. Definitely NOT a Sasquatch

    I can’t imagine carrying a CPAP on the trail. MADs suck; I too drool with them. Sleep with a CPAP is much more restful than sleep without. There are no good options.

    Did you need a CPAP at the end of the trail in 2019? Had you lost enough weight not to need one?

    Reply
    • mcgarveysan

      I still needed the CPAP after the weight loss. I just stop breathing. Being back with the MAD is like hanging out with a vengeful, spiteful lover. I want to say no, but I just say yes.

      Reply
      • Mr. Gorbachev, tear down this wall!

        Hopefully there’s no self-loathing in the morning.

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