Overwhelmed & sidelined

[hueyville]

Hi folks,
I am new to this board. For over 25 years I spent most of my time as a high altitude mountaineer. As a sick one. No matter how hard I trained, how much I climbed, what meds I took, food I ate once my body hit 20,000 ft it felt like someone poured my lungs full of concrete. At high camps from 14,000 to 17,000 ft I never slept, just laid in the tent with eyes closed. Below 14,000 ft could sleep but reputation got around and no other climbers would share a tent as it scared crap out of them when I would quit breathing. My last tent mate said when the times started exceeding three minutes between breaths I had to find another tent to sleep. So then I became the lone ranger having to carry my own tent as other climbers did not like sleeping with a dead body.

I had never heard of sleep apnea. I just thought I was weak. 2.5 years ago I met a doctor that was also a climber who diagnosed me in 30 seconds. I thought with an answer I could now work around my problems above 20,000 ft. WRONG. It keeps getting worse. My initial sleep study results were AHI of 62.4. They did a titration, put me on a machine and after a year of work got me down into the AHI ~30 range at 1,200 ft above sea level (home bedroom). Then we kept working and got me into the low 20's and now it is reversing. Past 30 days my software says average AHI is up to 54 with some nights way high. This past Saturday night it dropped to 12.4, the week before had a night at 14.0 then it blows up on me again.

I am using a Respironics System One BIPAP Auto with BiFlex if that means anything. Techs have tried all settings and all modes. My apnea is getting so bad that I am almost disabled now. Restful sleep is something I just read about. I saw a new neurologist today that specializes in sleep therapy and when he went through my machine logs he had a cow. I have to be checked into the regional hospital by 8:00 pm tonight and don't know if I will get to go home in the morning. I admit I don't understand the numbers he was looking at in my machine and the logs I have been keeping on my laptop since day one but I could see fear in him. I felt lucky that he is at least letting me come home and pack a bag instead of sticking me in an ambulance right on the spot.

When I go to sleep docs and labs they all say it is very odd for someone like me to have such bad and uncontrollable apnea. My numbers bounce all over the place with no rhyme or reason. I am 50 years old, 5' 11", weigh 158 lbs, exercise every day, don't smoke or drink. Mostly vegetarian except for three fish meals per week for protein. I can ride my bicycle 100 miles without breathing hard, run a half marathon without exertion but the minute I lay down and go to sleep my body goes into a fight to survive. I have been lurking on this site and others for a while looking for clues as to my situation. Now starting with my third sleep doctor and he says all he can do is observe, research and see if the other two missed something obvious. With panic creeping in I have decided to throw the basics of my situation out into cyber-land to see if someone out there has any clues. I am now 3 years out of the tall mountains and want to get back. If we can regulate it low, there may be some hope to rig something for high altitude. If not, I had a good career and will be satisfied with what God allowed me to do when I did. But that said, I DO NOT WANT TO SUFFOCATE AT SEA LEVEL. Drowning in my sleep may not actually be so bad but I would like to avoid it. So let fly with flames, tips, cursing or whatever. I am feeling desperate as all the docs I have seen say they are mostly successful even with difficult cases but lil ol me has them stumped.
Thanx folks and kudos to the folks responsible for this resource.

[Julie]

Hi, and wow, what a story! You sound like a poster child for health, but obviously have some issues to deal with now and I hope you get to where it makes more sense. Whatever else, please come back and let us know what happens. It would also be good if you register, then go to Ctl. Panel under the logo and fill in a Profile (text vs icons plse) with the full names + model #'s etc. of your machines, masks, etc, which'll then auto. appear under all your notes so we have more to go on when responding.

Probably a dumb question at this point, but I don't suppose you're a mouth breather when sleeping, losing most of your therapy air that way instead of having it go into your system (and therefore needing a full face mask)? Just a thought...

Good luck to say the least. There are lots of very knowledgable people here and hopefully you'll get help to get better.

[kaiasgram]

hueyville, good luck at the hospital tonight. Your new doc is on it -- and that's good.
Do you know the breakdown of your apnea events? Central apneas vs. obstructive apneas and hypopneas? When I read your story (what a story, BTW) I wondered if your doc was alarmed because you're having centrals that aren't treated by the machine you're on, or perhaps your O2 desaturations are alarming, or both.

Welcome to the forum and please do keep us posted. Lots of support available here.

[robysue]

hueyville,

Welcome to the forum. It sounds like you've been through the wringer. And like Kaiasgram, I hope that tonight goes well at the hospital in the sense of them getting some quality data that indicates what kinds of things are going wrong. And out of curiosity, is tonight's study just a diagnostic study (no mask) or is it a split study (half the night with the mask and half without) or is it a titration study (the whole night with the mask)? I hope that at least part of the night is done with a mask on your nose so that they can see what's happening when you're using your machine.

Like Kaiasgram, I am wondering if your exceptionally high residual AHI you have had while using the BiPAP is at least partially due to pressure-induced central apneas. If so, then your official diagnosis may change from obstructive sleep apnea to complex sleep apnea. And if the new doc is as sharp as he appears to be, you may be in for a machine switch to a machine that is designed to treat both the OAs and the central apneas. (Your current machine primarily treats OAs).

Also, in the effort to get your AHI under control, you write:

They did a titration, put me on a machine and after a year of work got me down into the AHI ~30 range at 1,200 ft above sea level (home bedroom). Then we kept working and got me into the low 20's and now it is reversing.

Out of curiosity, what kinds of things were tried to get your treated AHI under control? Did the previous sleep docs ever re-titrate you? Did they ever run your machine in Auto mode and then look at the efficacy data? Did they ever look at the leak data? Or did the previous docs just suggest pressure increase after pressure increase after pressure increase ....?

Finally, do you know what your current pressure settings are on your BiPAP Auto?


At any rate, once the new study is complete and the data is analyzed, you should ask the new doc to give you the full summary data, including the summary graphs. It may help you understand what is going on in your own body better to see the data from the sleep study.

[SeekSleep]

I understand the frustration, and embarrassment that comes with the sleep apnea snoring, and more importantly the inconsistent breathing that has folks running away. I spent 22 years in the military with sleep apnea, often times in situations where I was supposed to have a roommate/tent mates as the situation dictated. I was the but of jokes, annoyance, and downright concern by the poor individuals subjected to my nighttime struggles. You can have it even when in shape and at a very healthy weight as even when we did an 8 day 1100 mile bicycle ride in Europe, I was in a tent on my own at night as far away from the others as they could get. I guess my normal breathing pattern was 3 to 5 breaths, 15 to 90 seconds of not breathing, and start the cycle over with a loud gasping breath. I also did a lot of backpacking over the years, with peak bagging often being the highlight of the trip, albeit at considerably lower altitudes than you're talking about, almost always under 15,000 feet.

Do you know the makeup of your AHI scores? is it mostly apneas?, if so obstructive, or central. Pressure seems to really affect me for some reason, to the point that a CPAP machine won't even get me into the moderate category, while a Bipap can get me to
moderate, reason being when the treat the obstructive apnea, I shift to central apneas. While the machines are supposed to adjust for altitude, I found while on my system one bipap my central apneas would tend to double when I was camping in my RV above 10,000 feet on the 5 nights we were camped in the higher mountain areas. My home elevation is approximately 4,400 feet. I'm now on an ASV machine which has my AHI never going over 5 yet for the two weeks I've been on it. I also feel great. Hopefully they'll find a solution as simple as that for you too.

Finally, if you do resolve your issues using a CPAP type machine, I think you'll still find the high elevation stuff difficult. At that sort of altitude you'll undoubtedly be spending a fair bit of time camped at acclimatization altitudes. CPAP machines are somewhat heavy and bulky to be used for backpacking, especially when you need to include a battery system, and means of recharging the batteries. Sounds like you've had a good run though, and settling for good health shouldn't be that much of a let down. Good luck, and keep us in the loop on how things work out with the new doctor.

[JDS74]

Hueyville

I think the main clue in your narrative is the mention of stopping breathing for 3 minutes.
That sounds like central apnea turf and you'll need some sort of ventilator product to fix that during sleep.

Obstructive apneas would wake you up long before that amount of time.
Most likely your current machine is dealing quite well with your OSA events but what is left are those pesky CSA's.

Good luck with your sleep study.

[Sigrid]

Dear Hueyville,
You have come to the right place for guidance, the regulars here are very informed and wise!
I am not a climber but like to participate in archaeological digs in Israel. In May this year I spent a month sharing a small room with 3 roommates on a kibbutz and used my CPAP machine every night. I explained to them what it was, and they thanked me for bringing it and sparing them the unpleasantness of having a snoring, gasping roommate.
With the drive and persistence you must have shown in your climbing, I suspect you have what it takes to assess this challenge, learn how to work with (rather than against) your physiology and with whatever tools and supports are needed, and continue to test your limits. Whether that will be high-altitude mountaineering or some other (perhaps yet undiscovered) passion, making restful sleep a top priority for its own sake (rather than a necessary nuisance) may enhance your life in many positive ways.
Best wishes to you and please keep us posted!
Sigrid

I

[Guest]

Appreciate the responses and support. Got some initial information from the Friday night sleep study. Luckily my primary is one of my climbing partners thus snagged all the data before the sleep doctor reviews it. He says it seems obvious that i have both obstructive and central apnea. At least I now know more of what is happening and why the poor response to cpap therapy. I have an appointment with the sleep doctor Tuesday and another sleep study Tuesday night. When they woke me up Saturday morning the techs would not say much except that I was one of the few victims that they were never able to even stop snoring for even one minute.

The tech that took care of me was super nice and very apologetic that she could not share her opinions. She did comment that in 30+ years of working with sleep apnea had a patient like me. The lab was nice and state of the art. Patient rooms nicef than a 4 star European hotel. Heated restroom floor & towel racks. Warmed dressing robes. Breakfast tray was delivered after tech vot me unwired. Then I was left to liesurely eat, shower and dress before final paperwork. The facility is only a few months old thus all technology is top notch. Each patient had personal tech, there was a supervisor backing up the techs and a nurse assistant just to keep techs from distracting mundane tasks.

The lab I had been to previous was a three patient to technician ratio. At that lab i experienced two times where two patients were having problems and the tech could only deal with one patient at a time leaving the others unattended except by cameras and computers. Just a mask leak with one patient left two out in the cold. Of course this new lab was not cheap but with my insurance my portion was only another 100 bucks.

The really cool thing is that as my problems have filtered around the climbing community God saw my dillema mentioned in a vroup that can only be devine intervention. Seems like there is a research doctor doing a study on central apnea using medications with good success. The kicker is he is running experiments with climbers in a real high altitude environment. He is collecting real world data with climbing a mandatory part of the program.

I do feel real lucky finding the new specialist and lab. Now if we can get me in the high altitude experiment I may just get my desire to return to mountaineering. Even if it doesnt work out the hope of a

[oak]

glad to see you are getting such good care. keep us posted--your situation is very interesting!

[JDS74]

When they woke me up Saturday morning the techs would not say much except that I was one of the few victims that they were never able to even stop snoring for even one minute.

hueyville:

This may be a little early but it might be that an oral mask is what you need for treatment as well as for stopping snoring.
FFM's, and various nasal masks use the CPAP pressure to keep the airway open in the path via the nasal cavity.
Oral masks do the same thing via the mouth. The pathway is different and maybe keeping the pathway open from below will be more effective with the snoring.

(edit) It may be possible that your tonsils and / or uvula are too large and will need surgical reduction. What's it look like when you look down your throat?

James

[mgaggie]

The lab was nice and state of the art. Patient rooms nicef than a 4 star European hotel. Heated restroom floor & towel racks. Warmed dressing robes. Breakfast tray was delivered after tech vot me unwired. Then I was left to liesurely eat, shower and dress before final paperwork. The facility is only a few months old thus all technology is top notch. Each patient had personal tech, there was a supervisor backing up the techs and a nurse assistant just to keep techs from distracting mundane tasks.

Okay I am extremely jealous! My sleep studies were performed in a hospital wing that was clearly built in the 1970's, shared bathroom with the other patients. You get woken up at 6am, unhooked told to dress and then go home. If you are lucky and fast you can have a shower to wash the goo out of your hair. No breakfast provided.

Explains why sleep studies cost so much in the US!

[oak]

mgaggie, I live in the US, mine was like yours and it STILL cost WAY too much!!

[mgaggie]

mgaggie, I live in the US, mine was like yours and it STILL cost WAY too much!!

I really have no right to complain as I didn't have to pay anything for the study being on a Health Care Card. I only had to pay $35 for overnight parking and that was cheaper than the study would of been if I had to pay for it.

[hueyville]

Did not realize there was a place left in cyberland where you can post without registering. I just took care of that. As to tbe comments on my luxury lab. I live in whats considered an affluent community where there is competition for patients. I have four labs within 20 minutes of home and hundreds between home and Atlanta. The real kicker is that 27 years ago wben I started my business I told my insurance agent I wanted the best health insurance for me and my employees. All of us get BC/BS and each individual choses between a low deductible PPO or a higher deductible HMO. The better plan picks up 100% acter a 1,000 deductible. That said, my personal current monthly premium is $2,100 per month. Saddest part is after nearly 3 decades of paying in the feds are trying to void it as an unfair caddilac plan. I chose insurance over a sports car. So now affer beating the crap out of myself at work and play i get good docs. When i wrecked my motorcycle they drug a top orthopod in from out of town who rebuilt my left leg out oc titanium, left no scars and put me back in the game. A quarter million dollars of non tax payer money and the limp was gone in less tban a year. My decision was small house, used truck, no expensive restaurants, boats or other expensive fluff. A roof over my head, work hard, play hard and pay to play. My wifes premium is $1,700 per month now. So for what a studio apartment in a big city rents for the wife and I live in rural north GA and dont have to worry about medical bills as long as I keep my work priorities straight. Back in my 30's I almost cut the insurance to buy a bigger house but then common sense took hold again. It is nice to walk into any medical center in the country, throw down my Blue Choice and AmEx Black card knowing that from then on all i have to do is wait for the specialists and heal.

The sad part was not recognizing the apnea for what it is until recent. I have stayed in such good physical shape the idea never really rang a bell till a couple years ago. I jumped into a program which turned out to be more hype than meat. Finally fivured it out and having to start from scratch. The 1st group did a study, titration, set up a machine & said all was good. 2 hears later & I finally figured out they were not working for me but to meet quota. I have spent the past 2 weeks talking to good doctors and am supposidly with the best group in the nortb metro area. My bad for not taking this serious when first diagnosed. I called this office Friday morning, by lunch all paperwork was complete and approved, Friday night on a holiday weekend tbey worked me in with their "a" tech. Saturday my primary had all the test data and I see their sleep neurologist Fuesday morning. Even left my suitcase in the room as tbey said I will be back in Tuesday night.

I have been looking at this as an inconvienence and not as serious as it has been explainded to me. I was scheduled for a f back surgery in December and during an overnight stay for some diagnostic stuff i had one of my bad apnea nights. The neurosurgeon freaked, called a friend and now says he isnt cutting till i start breathing. I just turned on my machine every night and thought all was good. Ignorance is a big slap in the face. Turns out there have been several deaths in my family from apnea. Think someone would have mentioned that. I thought my Dad died of cancer but it was an apnea event while being treated for cancer. So now i have to slow my roll, rethink my entire medical condition and plan then make some serious changes. I called a friend with apnea on Saturday to ask some questions and his wife informed me be died from his apnea issues 2 weeks ago. So now I find my minor lil breathing disorder is a freaking killer. Just what i needed. So i am spending the holiday weekend reading all I can on apnea and Tuesday coming out of the gates like a race horse on fire. Still joyous that ag age 23 I had the foresight to buy and keep the best health insurance on the market. Looks like the $4,000 per month on the family health is the best money I have ever invested. Glad i found this group also. Nice to have people of compassion and experience to lean on. Thanx folk.

[archangle]

Welcome. Sorry you joined our little group.

Sounds like you may be lucky with your doctor. Most sleep doctors practice assembly line medicine and don't really look at the patient's individual needs.

If you end up with a ResMed S9 or Philips Respironics PRS1 CPAP machine, you can probably get some free software that will allow you to read your own data from the SD card. Even if your sleep doctor doesn't have his head up his mask, it's to your benefit to monitor your own treatment.

Some form of central apnea may well explain your problems. Central apnea is often hard to eliminate, but can be managed, especially if you learn how to monitor your own therapy and have a good doctor who will look at the data the machine collects every night and make adjustments.

Stay in touch and good luck.