Going Commando

[DreamStalker]

As Jeff said, those who have mild OSA are not at a high risk of having a stroke or heart attack should they go without CPAP ... because the difference between normal and having mild OSA is not that great.

True the body does adapt to severe untreated OSA over long periods of time but nonetheless, damage occurs slowly and gradually and the longer severe OSA goes untreated, the higher the probability of a catastrophic/fatal event occurring. Now the person who has had untreated severe OSA for a long time begins treatment and again the body adapts to "normal" breathing while asleep. Go without treatment and the effect of untreated severe OSA is no longer a gradual adaption by the body but instead a severe shock and that is the danger of not using CPAP once a severe OSA patient has begun treatment.

I have severe OSA (diagnosed with AHI of 102, w/ 99 apneas per hour, and O2 desats down to 60%). I went undiagnosed for about 20+ years and my body adapted as best it could. Two days after I started treatment, my body had adapted well to breathing and I felt like superman (still do ... I unloaded a 235 lb elliptical trainer off my pickup Sunday night all by myself and didn't drop it ). But on the 3rd day I went without and I felt like I had been run over by a train .... it was the first and last time I ever went without. I'm pretty certain that my body has adapted quite well to treatment for the past 30+ months and going without would put me at a very high risk for death ... I ain't ready for that yet.

[fortomorrow]

Let's not encourage people to skip cpap.

I'm new to this and wouldn't presume to argue because I just don't know that much. But why not? I mean, i personally haven't skipped at all since starting therapy two months ago. But prior to that, I must have gone at least 10 years with undiagnosed apnea. I certainly have experienced low energy and some health issues (blood pressure, inflammation) -- all of which have gotten lots better since CPAP -- but my understanding is that these developed gradually over the 10 years. Aside from the discomfort and tiredness, is there really all that much damage that's going to be done in five days? Or is the concern that his health might have been at a tipping point and this could have pushed it over the edge? Should I be worried that if I do skip a night or two that I might have a heart attack or something?

Did you miss the rest of rooster's story where the man DIED because he didn't use his CPAP because he thought he could go without it for a night or two?

Not to beat a dead dad or anything, but my father used his CPAP faithfully from the day of his diagnosis at age 45 until the night before he died at age 52.

And then he fell asleep without it and he didn't wake up.

One night without it may well kill you.

[OldLincoln]

I can't say if it's your body depending on CPAP or not, but I find now if I even take an hour nap without it I wake with a headache. My "rational mind" tells me I have become adjusted to a machine pumping air in my sleep so my lungs don't make up the difference without it.

[ziggytosh]

JNK, Dreamstalker, Fortomorrow, and Oldlincoln ...

All very convincing replies. Makes sense to me. And Fortomorrow, I'm really sorry to hear about your dad. The difference between how I feel now and how I felt two months ago is dramatic, and I wouldn't want to skip anyway, but I hadn't really considered that skipping would be dangerous. I can see way ... and I won't do it.

Assuming that apnea has done damage to my cardiovascular system over the last 10 years, does that generally repair itself, or is it the kind of thing where many apnea sufferers have lost heart capacity that just won't ever come back? I know that's a horribly vague question, but in a general sort of way, as long as you use your CPAP, can you be as healthy as anyone else?

[dsm]

I just got back from holiday, which mostly consisted of hiking the Otter Trail. It's a 5 day hike along the coast, and while the distances are quite short, it can be a quite tiring as the terrain is pretty tough.

I had my three daughters with me, ranging in age from 17 to 11, and as this was the first time any of them had hiked overnight, I was carrying a little more first aid (mostly for blisters) than I usually would have. I also carried the 11yo's sleeping bag, as she is just too small to manage it. In addtition, I was carrying about 30kgs more fat than I when I last hiked (about 15 years ago). So I had to make a difficult decision, and that was to not even try to find a lightweight solution for my CPAP, and to go without for the four nights on the trail.

The first night was a battle - I woke up many times, as soon as I started snoring, and at about 2am I had to go and sit outside, as I was having a serious moment of anxiety. I used to wake up feeling claustrophobic and stressed and generally upset before I started CPAP - I suspect due to partially suffocating all the time. The second night I waited up till I was really tired (about 8:30 pm lol) and slept like a baby. The third night was OK (no anxiety attacks but not great sleep), and the fourth I hardly slept, tossed and turned all night, even though that was by far the toughest day's hiking. Essentially, my sleep was better than I had expected, but not great. I was happy to hose up the night we finished, and had a great night's sleep.

And to conclude - the hike itself was great. The kids enjoyed the challenges (the youngest took a while to get the point of the whole exercise), and we have some great memories stored away for the future. Of course, I will have to lose weight and build fitness if before I do it again - I took some strain lugging my gut up the many climbs, but I did make it, and I am feeling great for having gone out and given it a go. Many family and a few friends thought I was mad - too fat to make it, but they didn't count on my stubborness lol.

I'm considering limiting myself to shorter hikes for the immediate future - weekends perhaps with two nights on the trail, and am off to look on cpap.com to see what battery powered cpaps are out there. I suspect I'll do with for a while though, until the finances are a bit better.

Colin

Very off topic p.s. One of the highlights of the holiday was visiting my aunt and uncle after the hike, and finding a adolescent spotted eagle owl in their lounge - it was sitting in the road with no parents or nest to be found. My uncle is now in the process of rehabilitating it - it is catching insects already and will soon progress to mice before being released.

Colin

A good story & thanks for having the 'guts' to tell it like it was. The fact you did tell it says you know the challenges you could have faced. But, you seem to have the determination needed to take action, and I am sure you know what you need to do.

One good suggestion from JNK included getting a 'lightweight' boil-n-bite & treating that as your last line of defense.

Good luck & work on that weight

DSM

(doing the hard yard myself to drop 5 KG by Christmas - wanting to get from 95kg to 90 - made it to 92.5 as of this morning )

[jnk]

. . .Assuming that apnea has done damage to my cardiovascular system over the last 10 years, does that generally repair itself, or is it the kind of thing where many apnea sufferers have lost heart capacity that just won't ever come back? I know that's a horribly vague question, but in a general sort of way, as long as you use your CPAP, can you be as healthy as anyone else?

I am not qualified to answer those questions, but that's never stopped me before!

I don't think there is a rule of thumb for that kind of thing. Some people have strong hearts; some people have weak ones. Some hearts are very efficient at moving blood around; some not. So you can be as healthy as anyone else, in the same sense that anyone else may or may not be healthy, if that sentence makes any sense.

Present science thinks the brain damage doesn't get repaired. But what does science know? They have no idea. More research is needed. And when it comes to the cardiovascular system, it has trouble as you get older either way. So who's to say what caused what and what didn't? The point is to be nice to your heart, especially as you get older. Denying it oxygen is not nice. Drenching it in panic hormones all night is not nice. Not letting it repair itself during sleep is not nice. But then again, being overweight is not being nice to it either. So I am still not being as nice to my heart as I should be. You never know when a punch is going to put a man down, so don't throw punches at your friends. Your heart is your friend. Be nice to it.

My understanding is that organ damage can often be reversed if you are relatively young and eating healthy and exercising and being a good boy in general--and getting some deep sleep doesn't hurt. So, to me, instead of wondering too much about what damage has been done, which I can't do anything about, I think in terms of how I can do better from now on.

On the other hand, if you are worried about the condition of your heart, it is worth talking to your doctor about that, since he or she would be able to phrase the answer taking into consideration the pertinent factors in your complete medical history, including your family history. But even your doc would likely be doing little more than guessing without running a bunch of tests.

That's my take.

[roster]

.............

One thing the Rangers told the family was that if someone dies on a trip to lay them over a log or at least in a U-Shape so they stiffen in the right shape to carry out.

..............

Whoey, I just love this forum. You can learn the most useful things here.

[ozij]

Present science thinks the brain damage doesn't get repaired.

Present brain science has change its mind about that one.

But what does science know? They have no idea. More research is needed.

And "science" changed its mind [img]because[/img] it was doing research!

O.

[no_time_for_apnea]

It really hits home when forum members (rooster, fortomorrow) have personal experiences with the dangers of suddenly stopping the use of CPAP. Are there any studies that show this effect? I can imagine it would be pretty tough to gather this information, but I'm guessing that if a study showed this much danger, insurance companies would consider prescribing backup CPAPs as part of the standard care. Wonder if that will happen in a few years... (I'm picking up that a lot of forum members already have backup machines)

[ca_hosehead]

Carrying enough battery power to run a CPAP would be problematic. I would suggest looking into a dental appliance. If it works out, you could hike the Appalachian Trail with no problems (other than bears).

Get a dentist that is listed here:
http://www.aadsm.org/

Board certified is best. You don't want some dentist that just does sleep apnea as a sideline, you want someone who takes a serious interest in it. A lot of dentists are selling the appliances now but they don't know much about sleep apnea.

When you get fitted with the appliance, go back for a sleep study to see how well it is handling the condition. Some people do better than others.

Training yourself to stay off your back would probably help as well. There isn't a lot of "gear" required for this either.

If you can get the apnea managed with these measures then you could travel untethered.

If you go at seriously -- get a *real* sleep apnea dentist and get the results verified by a sleep study -- then you could have a solution that is both effective and highly portable. The appliance might not work for you, but I would go for it anyway. If it does work it will fit your needs very well.

[ColinP]

Phew! For a post I thought a few people who knew me might read with mild interest and then move on, I seem to haved created a bit of a (mild?) stir. Thanks for all the views expressed, I appreciate the fact that people care enough to give their input openly and honestly.

For the record, at no point was I ever suggesting that people should go without CPAP, and if I created that impression, then I apologise. I am serious about my treatment - I'd never be on this forum if I wasn't. I took a personal decision to forgo treatment for a few days in order to participate in something I really wanted to do, and I did it with my eyes open to the risks, and did what I could to minimise those risks. The only other times that I have slept without CPAP since starting treatment well over a year ago were when I had no power (I bought a battery to prevent that happening again) and when I was stranded due to exceptionally bad weather grounding my flight home one afternoon – the first time in over twelve years of regular flying for business that it has happened.

As I said, I'll probably limit myself to shorter hikes in future, and carry a small battery with my ResMed. That way I'll only need power for one night, and you carry less kit for an overnight trip as opposed to 5 days, so the weight will be less of an issue.

The suggestion to use a dental appliance is a great idea - it might not work 100%, but it will certainly be better than nothing. I'll have to do some research into where and how I can get one in South Africa, if I decide to do anymore long hikes.

For those that expressed concern that I exposed my family to the risk of having to carry a dead father to the end if the hike, just a couple of points which you wouldn't be aware of:-

• Although we were in the wilderness, in a national park, there is a good highway a few km inland, with 7 escape routes to get to safety if you can't cope.
• There is also cell phone reception along much of the route (signals travel well over the sea).
• A friend who is an experienced hiker accompanied us, and had agreed to stand in for me should I have been unable to continue and needed to bail out (which I would have done if the need arose - it didn't). If I had felt any physical discomfort (other than sore legs and feet) I'd have stopped and called for help.
• My medical insurance includes helicopter evacuation should I need it, and the trail is a three hour helicopter flight from the hospital where the world's first heart transplant was done.
• While I am overweight (let's face it, just about all 45 year olds have some room for improvement) I am not in poor condition. I walk a lot (always have done - ask my dog) and I did a couple of day walks in the mountains near home to assess my fitness level before leaving.

So while there was risk, I did what I could to mitigate it, and I stand by my statement that there is risk in all that we do, and if I do what I can to manage that, I will continue to live my life, and will not be consigned to the scrap heap just because I suffer from OSA.

Once more, thanks for all the open and caring views and opinions expressed.

Colin

[jnk]

Present science thinks the brain damage doesn't get repaired.

Present brain science has change its mind about that one.

But what does science know? They have no idea. More research is needed.

And "science" changed its mind [img]because[/img] it was doing research!

O.

Thanks, ozij. I guess there is hope for my brain, then?

http://www.washingtonpost.com/wp-dyn/co ... 39_pf.html

Sleep Apnea Linked to Memory Loss

Wednesday, June 11, 2008; 12:00 AM

WEDNESDAY, June 11 (HealthDay News) -- People with sleep apnea show tissue loss in brain regions that help store memory, a University of California, Los Angeles (UCLA) study shows.

"Our findings demonstrate that impaired breathing during sleep can lead to serious brain injury that disrupts memory and thinking," principal investigator Ronald Harper, a professor of neurobiology at the David Geffen School of Medicine at UCLA, said in a prepared statement.

People with sleep apnea stop breathing and awaken repeatedly during the night, leading to chronic daytime fatigue and memory and concentration problems. Research has linked sleep apnea to an increased risk of stroke, heart disease and diabetes.

In this study, the UCLA team used MRI to scan the brains of sleep apnea patients. The researchers focused on brain structures called mammillary bodies, located on the underside of the brain.

The study found that the mammillary bodies of the 43 sleep apnea patients were almost 20 percent smaller than those in 66 people without sleep apnea. The results will be published in the June 27 issue ofNeuroscience Letters.

Repeated drops in oxygen experienced by sleep apnea patients may lead to brain injury, Harper suggested. He noted that lack of oxygen during an apnea episode can cause brain cell death.

"The reduced size of the mammillary bodies suggests that they've suffered a harmful event resulting in sizable cell loss. The fact that patients' memory problems continue despite treatment for their sleep disorder implies a long-lasting brain injury," Harper said.

"The findings are important, because patients suffering from memory loss from other syndromes, such as alcoholism or Alzheimer's disease, also show shrunken mammillary bodies," lead author Rajesh Kumar, an assistant researcher in neurobiology, said in a prepared statement.

"Physicians treat memory loss in alcoholic patients with massive amounts of thiamine, or vitamin B1. We suspect that the dose helps dying cells to recover, enabling the brain to use them again," Kumar said.

He and Harper plan to study whether taking supplemental vitamin B1 can help restore memory in sleep apnea patients. The vitamin moves glucose into cells, which prevents their death from oxygen starvation.

[OldLincoln]

Colin,

Bless your heart! If I had known "the rest of the story" I would not have pontificated as I did. You did think it all through, understood and mitigated the risk with back up plans, and expressed your independence with a wonderful trip with your daughters. I'm sure it gave all positive memories and I hope we didn't diminish any of that with our concerns!

I would recommend your planning to others and encourage everybody to "do something" within their limits, especially with the kids. For us it may be simply taking them to the Water Gardens at the park or down Christmas Tree Lane with all the lights.

[jnk]

Colin,

I second OldLincoln's sentiment. I did not mean to sound critical or condemning in any way. I am genuinely glad it turned out so well, and I too was inspired by your account. I was merely trying to toss out some ideas and to express concern that you be careful, even though every indication was that you were careful, and that you made an informed choice that is certainly yours to make, and that you made it for all the right reasons.

I wish you many more happy hikes, and I hope you trust us all enough to behave ourselves when you tell us about the next one!

jeff

[roster]

You guys are too nice. I stand by my comments.

The word "commando" came out of WWII. I would suggest an update of the title, "Going Commando", to "Going Suicide Bombing".

Having insurance that pays for a helicopter ambulance is not "being careful".