What sleep apnea has meant for me

I haven’t run into anything like this anywhere, and thought it would be interesting and potentially helpful to researchers looking into apnea and how it impacts people, or other apnea patients. So here we go. What has having sleep apnea meant for me?

For years, pretty much since high school I remember my mom, and when I got married my wife waking me up telling me I wasn’t breathing when I was sleeping. As I got older, and by older by the time I was in my late 20s, I was still in college, gaining weight, always dead tired, and nobody, not even my doctors would tell me what they thought was wrong…

By the time I was 30, if things got slow at work, and I even paused for a minute or more I would nod off, still no diagnosis.

My love of camping, and the outdoors, and just being active was dying. And I was starting to gain weight, fast…

Finally by my late 30s, I went on a hunting trip with a friend with apnea, who suggested after hearing me snore all the deer away overnight, I talk to my doctor specifically about it, I got a referral to a sleep specialist, and people were just starting to talk about sleep apnea, which at the time I thought was a complete malarkey term. Just another fashionable syndrome of the week. But by this time, my health was plummeting, and I felt like a self powered corpse. I was having constant headaches, couldn’t concentrate and just was downright miserable. I could sleep 24 hours straight and not be rested.

Then the sleep study. And they showed me the results which were eye opening. Then the second to test for tolerance for CPAP, The doc set me up with a CPAP, mask, hose etc… and they walked me through how to use it.

Almost overnight, I felt human again, if I allowed myself enough time to sleep that is, no more constant migraines, no more nodding off at work, no more fighting to NOT nod off behind the wheel of my truck.

It was at this time I found a problem.

I still wanted to go camping, go to the Renaissance festival with family and friends and camp overnight (no services), go on fishing trips (no services) or hunting trips (there is a trend here). I didn’t know then you could run a CPAP off fo a car battery with an adapter… I wish I knew then what I know now…

Well several hurricanes, and one broken CPAP later, and I have learned a good deal more. I was able to afford a dedicated travel CPAP, and at least a basic way of powering it after watching LOTS of youtube videos on the subject.

Now I have activity back in my life, I am still dangerously overweight, but the weight is coming down, and my numbers are getting better all the time. I have been blessed enough to avoid Diabetes so far, and no high blood pressure which is astounding considering my weight,

For me at least, the difference in quality of life between CPAP treatment, and no CPAP treatment has been a two edged sword. Insurance wouldn’t cover the cost of the adapters, and I knew nothing of them at first, so in order to keep feeling like I am alive, I had to be tethered to the grid somehow. Which was in its own way, another kind of dead feeling. Now that I am able to provide power to my CPAP and travel away from a power outlet, my life is coming back.

I just wish I had known what I know now, years ago. The lack of information took a lot of the joy I get in life away.

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Thank you very much for sharing. Your insights will benefit all of us.

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It intrigues me what I see others talking about therapy itself, but I rarely see anyone saying anything about the facts of having apnea before and after therapy…

Everyones story is a little bit different, and I am not sure how useful this will be. But I see folks that are struggling with CPAP therapy, and I am hopeful that seeing stories of positive results might be encouraging. I am not saying CPAP is perfect, far from it, but it sure beats not being on it.

My biggest frustrations that I was trying to make clear are the first fact that I went so long without knowing what the problem was, and was probably damaging my liver with copious amounts of over the counter headache meds, the doctors just never really dug to find the problem. I finally found a doc that was good at what he does, and suspected the whole apnea thing, and pointed me in the right direction.

My second frustration is one of how limiting being on CPAP therapy can be, and how dependent it makes you on reliable and clean power. And how little information there really is on how to come up with an effective off grid solution for those of us in harms way due to geography, or recreational activity. Having apnea and the gradual worsening is a REAL lifestyle change. My pulmonary specialist and insurance provider haven’t been terribly helpful.

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I’m still working on finding my voice to tell my story. I’m not the type to complain about things but I am aware of the benefit of speaking one’s truth. So I work on that. What does stand out about what you had to say is if I only knew back when what I am learning now how different my life could be. I hold on to what I have learned and making things better but it is still daunting to deal with and I keep reminding myself that I just didn’t know and couldn’t have done better without that part. I know now and I work on getting better and I have better days but when I don’t it’s hard to deal with.

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I would be interested in details about powering CPAP off the grid. I have basically changed my lifestyle to accommodate access to electricity, but would love the chance to be able to be self sufficient. We have a travel trailer and like to boondock without electricity when we’re on the road.

As far as my sleep apnea journey goes, I was in the hospital 6 years ago for some major surgery. Every respiratory therapist who walked into my room asked me if anyone had ever told me I had sleep apnea, and said I should look into having a sleep study done. I had no idea I had it. So I asked my primary doctor and got a sleep study done. I have had CPAP for 5.5 years, no huge issues with wearing CPAP, but lots of issues getting my AHI to an acceptable level. Had two more sleep studies in 2018 which confirmed my problem wasn’t only obstructive sleep apnea, I had central apnea as well. New machine, new settings and I’m good to go now. I never had ANY symptoms/complaints before they discovered my sleep apnea, and I DO NOT feel ANY different now than I did before this whole journey started. Why do I wear it? I googled the side effects of untreated sleep apnea…I can do without ALL that! If wearing CPAP will avoid that long list of diseases, I’m in for life!

I’m still confused why I had no symptoms. I felt fine before, feel fine now. Hope to feel fine for a long time to come.

Just like anything else that requires power off grid the idea here is to minimize your power consumption in maximize your power generation and storage. My travel CPAP is not my home unit, But one I selected specifically for the lowest power draw i could find in a unit that i could afford. This means no humidifier. What this unit uses is a type of free circulator that takes your exhaled moisture and reintroduces it to the incoming stream. It’s not as effective as he minification but he keeps me from drying out too badly. I am off grid for 3 days at a time Max and my little jump starter pack will run my CPAP for 2 nights. Longer than that and I need to recharge. If I had the money for an RV even a small truck camper I would get at least a 100 amp hour battery with a 12 V power socket and grab a foldable 100 W solar kit that includes the panel the keep going and the charge controller. What I do instead since I don’t have at is I just have a cheap Harbor freight 900 W generator that will recharge my jumper pak. It works but it’s noisy and stinks

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