AHI keeps going up, not down.....

[sierragail]

Last night was my 20th night with the cpap. I started out this hose-trip adventure with a big bang~~~felt like I was 10 years younger! Sleeping like a rock at night! Waking up all bright-eyed and bushy-tailed! My AHI at sea level with the machine was 1.5! Things were great!

Now I'm back home, at 8,000 feet, and things seem to be going downhill. The last 3 nights I've gone from AHI of 4.9 to 6.8 to 8.4 (last night). I've had PB of 1% as well.

I talked to my doc 3 days ago. He said things sounded okay to him (?). He recommended I try my Ativan or Ambien again. I don't like those meds. The whole idea of sleeping with a cpap, to me, was to get away from the meds and do some real sleeping for the first time in decades.

I took 1 mg of Ativan last night to see if that would help with the PB bc I read an article online that showed Temazepam as effective against PB at high altitudes, but I actually slept worse than the night before.

My pressure is set to vary from 9 to 11. 90% has been at 10.5. Last night the 90% was 10. I'm kind of baffled by it all and don't know what to think. I don't go back until January for a re-check. In the meantime, my socks are dragging the ground again, in the words of Earl Long. What a drag!

This machine is supposed to adjust for 8,000 feet. Now I"m wondering if maybe the DME doesn't know what he's talking about?

Anyone out there have any thoughts on my situation?

[Woody3]

I have 2 machines and I was reading in one of the manuals that it too could adjust for different altitudes.
But you had to tell it the altitude range in one of the setup menus. I would guess that's the case with yours
that it has to be programed to take the altitude in consideration.

[sierragail]

Wow, I hope that's it. The manual said it would self-adjust, but who knows. I'm going right now to look at the set-up on this thing and see if there's a place where I manually put in the altitude. Good tip, thanks!

[sierragail]

Well, phooey, I just checked my machine, everywhere I could possibly check it: scrolled through, up, and down, in provider mode and in patient mode. There is nothing anywhere that has anything to do with altitude.

8,000 feet is not that high up. It's not like I'm in the Andes Mountains. I'm in a pine oak forest and the weather is wonderful---eternal springtime. I do not like the altitude, but you'd think there'd be a machine that could handle this level since it's not that drastically high.

[Sleeprider]

8000 feet is fine unless you have a respiratory problem. Don't fool yourself, its actually close to the base elevation of the very high ski areas like Brekenridge.

Along with the increased AHI, are you seeing any increase in leaks or snores? What humidifier setting are you using? Exhalation relief setting?

[sierragail]

It doesn't seem so high (8,000 ft) because of the dense forests and lush vegetation, so I forget that it actually is kind of high up I guess.

The first 2 years we were here I was sick all the time, but nothing was found. Started with seasonal flu, progressed to pneumonia, then to fever of 105 for 5 days. I had a low grade fever for 5 months. I lost 20 pounds and half my hair, vomiting and diarrhea almost constantly and started having Reynaud's Phenomena (only the toes turned bright blue). Xrays, ultrasounds, CTs and other tests showed enlarged liver and spleen. Liver biopsy showed nothing. All blood labs were negative for everything from Lupus to HIV to all testable forms of Hep (I'm vaccinated against Hep A & B), Valley Fever, Typhoid Fever, Dengue Fever, Malaria, Cholera, cytomegalovirus, etc.

I can't think of a single blood test that was not run. The usual CBC, CMP, Liver panel, BUN, blood cultures, etc also. I'm a phlebotomist so I started ordering my own labs for things they weren't thinking of. The only lab tests that showed something were the liver enzymes, C-reactive protein and Sed Rate, which were too too high but don't give a specific diagnosis, just indicate a highly inflammatory state. The lung doctor did a CT of the lungs and told me I had pulmonary fibrosis and I'd be dead in 2 years. I went to another clinic and they did a High Resolution CT of the lungs and they said, no you have COPD and bronchiectasis. For 2 years they stuck with that diagnosis of bronchiectasis. Now, at my last pulmonary function test they said there is NOTHING wrong with my lungs, no bronchiectasis, no nothing. Got the gall bladder out 1 year later, that helped a little bit.

I remain active (and thin), working like a maniac in the yard and walking at least 2 miles a day. I have always felt like there is still something going on with my lungs but nobody else seems to think so. (I've had pneumonia 5 times.) All my testing is done at sea level, so things are always different when I come back home to 8,000 feet---but there are no hospitals or clinics up here, and if there were, I would not trust them. I bought a small portable pulse ox and sometimes I notice that when we walk in town it drops to 88 and I am gasping for air. When I go to sea level and tell this to doctors, they don't believe me.

That you bring up the lungs as an issue is piquing me very much right now. Yes, yes, it would seem that the lungs must be involved in some way. I have had a hard time getting docs to listen to me since everything changes when I go to sea level for testing. I started to notice that I stop breathing, actually seem to forget to breathe occasionally, about 2-3 years ago, especially when I relax in front of the TV or am about to drop off asleep. When I told this to doctors, they blew me off. I even asked for a sleep test 3 years ago and was told I didn't need one. Finally went on my own and got one done this past summer and my AHI was 40.

I diagnosed myself with Sjogren's Syndrome last year. So far it has remained in the head---attacking the tear glands and saliva glands. Got a lip biopsy to confirm this last month--saliva glands have been invaded. A Schirmer test of the eyes showed tear production to be a 1. The normal is anywhere from 10 to 15, so I don't make tears anymore. There is a systemic version of Sjogren's that can attack other organs, but so far it has not shown up in my antinuclear antibodies, so no doctor will treat me for it unless it shows up in the ANA tests. The treatments can involve things like chemo so they really don't want to go there unless they have to.

I try to go on and live a normal life, pushing myself to total exhaustion in the yard on purpose, thinking that it will make me sleep good. But it doesn't! Hahaha, duh, right? I carry my artificial eye drops with me 24/7 and mouth spray as well for the dry mouth. This is also an issue at night since the dryness wakes me up and I have to put drops in the eyes and spray my mouth. All I can do is keep a sense of humor and laugh about it, but honestly, a good night's sleep now and then would be better than all the best Christmas mornings a child could hope for. I miss the old peppy and zippy me a lot. I used to be a long distance trail hiker! Carried a 50 pound pack on my 125 pound body! I miss those days.

[sierragail]

Sleeprider, I forgot to answer your questions:

No increased snores or leaks (none that I know of and husband has not notice snoring either)

Humidity set to 1. If I go above 1 I get condensation since the room is freezing cold at night (no heaters here). I made a hose cover 2 nights ago. It works good.

The exhalation relief is automatic on this machine.

I am taping my mouth shut since the chin strap thing makes me too hot. Taping seems to work really good.

I think I'm going to knock myself out tonight with Ambien. I hate using that stuff and resort to it only when I feel just about dead from sleep deprivation. I haven't had any in over a month and I never used it on a regular basis.

[Sleeprider]

Kind of a mystery isn't it. You have to go by how you feel, but I keep coming back to the difference that altitude makes, and your symptoms point to hypoxia. I wonder what the result of oximetery monitoring might show? I think you need to get a baseline of your O2 saturation at that altitude when you are sleeping and see if that suggests a possible approach. Apnea alone may be merely a contributor.

Did you doctors examine your cardiopulmonary function with all the other tests?

[sierragail]

I have a finger pulse ox, but it doesn't have memory function, it just shows current O2 saturation. I think I'll put it on tonight, then when I wake up, I'll check it to see what it says. This is sort of a low tech way, but right now it's the only thing I have. Are there cpaps that have a function to record oxygen saturation?

What sort of cardiopulmonary function tests do you suggest be done when I go back for a checkup? I had a chemical stress test done to the heart this past October and the results were normal.

[Sleeprider]

If you go to your doctor, just explain your symptoms at sea level vs altitude, and see if your physician has a suggestion. Basically, this kind of sensitivity to altitude is not unusual, but it can be a signal of other problems. Remember even though CPAP pressurizes the air, it does not change the "partial pressure" of oxygen. There are fewer molecules of oxygen available, and it may be you have developed an inability to acclimate, or have some underlying cause. Acute Mountain Sicness (AMS) can happen to otherwise normal and even athletic people. Anyone with pulmonary failure or impairment is at significantly greater risk at altitude. The fact you feel so different at high altitude is a clue that you are experiencing some kind of altitude sickness or sensitivity to which you are not acclimating, and you may want to be referred to a pulmonologist with a specialty in dealing with high altitude sickness.

I am a moderator at a large website dedicated to skiing, and we have a very good article concerning altitude sickness that seems to apply here. Here are some excerpts, and you can read the whole thing here: http://www.epicski.com/wiki/altitude-ad ... n-sickness. Please check out the full article.

Many people travel to high altitude each year to trek, climb and ski. The environment is completely different at high altitude compared to that at sea level – the air is thinner and temperatures are usually much colder. In order to survive at high altitude, it is necessary to acclimate. Altitude sickness doesn’t occur below 5000ft, and usually doesn’t develop until you ascent rapidly to more than 7500ft. At high altitude and low barometric pressure, there is less oxygen in the air, so each breath you take results in less oxygen being transferred into the blood by the lungs. .) With lower oxygen levels in the blood, there is less oxygen available to the tissues for metabolic needs.This means that changes occur in the body so that it can cope with the shortage of oxygen. Most people breath faster, and experience a faster heart-rate. In time, they develop more hemoglobin and make other adaptations to carry more oxygen. But some people are unable to acclimate. The resulting symptoms are called "Acute Mountain Sickness (AMS)".

Acute mountain sickness is a constellation of disorders caused by acute exposure to low pressure and low oxygen levels. It appears to be caused by swelling of the brain- a mild form of HACE (see below). Diagnosis (by the Lake Louise Criteria, which were formulated at the Hypoxia Symposium there a number of years ago) requires the presence of headache and one or more of the following:

* GI symptoms (nausea, loss of appetite)
* Fatigue or weakness
* dizziness or lightheadedness
* difficulty sleeping

A large study in Colorado found that 25% of people from low altitude ascending rapidly and sleeping at 8200ft (2500m) will develop AMS. These people may feel lousy for short while, but most of them will get better in a few days and not get sicker. About 1%, however, will develop more severe illness- high altitude cerebral edema (HACE, or brain swelling) or high altitude pulmonary edema (HAPE, or high blood pressure and fluid in the lungs). Both of these are life-threatening emergencies, and require immediate medical attention and descent if at all possible.

If you have had consistent, repeated problems with altitude sickness, you may be a candidate for prophylactic (preventive) therapy. You should discuss this with your doctor. There is one medication proven to help acclimate to altitude and one that is controversial.
The proven one is acetazolamide (Diamox). It works mostly by mimicking and enhancing the body’s respiratory adaptive mechanisms, and should be started a day in advance of ascent. It can also reduce the symptoms of AMS once it develops, but should not be relied upon for treating anything more than mild disease- particularly sleep disturbances. It has several mildly unpleasant potential side effects- it causes tingling in the lips, hands and feet, and makes carbonated beverages taste bad. It is a diuretic, so you need to increase fluid intake. It is about 75% effective at preventing AMS during rapid ascent. It cannot be used by people with true sulfa drug allergies.

[sierragail]

Sleeprider, I think you are onto something. I hope I can get doctors to listen to me next time I go for checkups. When I go for checkukps, I'm at sea level (more or less). When I go home and I step off the plane at the airport, I'm automatically at 7,000 feet. By the time we get home to the house (about an hour later) I'm back at 8,000 ft. So in one day I go from sea level to 8,000 ft.

My hemoglobin has always kept up so I had always assumed that I couldn't have this issue, but after reading your post, I do think I'm in that 1% or so that just can't hack it up here. I walk, I exercise, I do heavy yard work, I do stair-master, I drink lots of water, all in an attempt to acclimate to here, but it just doesn't cut it for me.

It does look like AMS. I have the symptoms--fatigue, nausea, insomnia, dizziness. In fact, the dizziness has sent me for MRIs of the brain. I have had confusion and a feeling of being spaced-out (almost like an absence seizure) to the point where I walked in the street one day because I thought I was on the sidewalk. I honestly thought I was on the sidewalk, but I was walking in the middle of a busy street and only "woke up" when a bus went by and brushed me on the shoulder. Luckily the bus did not hit me--they usually don't care too much about hitting people here.

I greatly appreciate the time and effort you have put into responding to these issues of mine. I'm going now to read the info at the link you gave me.

[Sleeprider]

I don't want to alarm you, but your story sounds a great deal like a member of our community who worked in Breckenridge as a fitness trainer, but was racked with these symptoms. After extensive evaluation she was found to have pulmonary hypertension. A mild case, but debilitating in that high altitude environment. She has found health and happiness in Raleigh N.C. Certainly she misses the high country. Lisa Marie wrote this blog entry http://www.livestrong.com/article/15550 ... ertension/

[sierragail]

Hey Sleeprider,
Since we moved here 5 years ago I have imagined so many different answers to my health issues. Every time I would hit upon one, I would bring it up with a doctor, lots of doctors. Doctors hate people who try to diagnose themselves, at least that's been my experience. But over the past 5 years I have diagnosed myself with high blood pressure, diabetes type 2, and Sjogren's Syndrome. Tests later done in the states confirmed all these ailments. Some doctors think that I WANT to have ailments. No, I don't want ailments, but I do want a diagnosis of what's wrong with me.

Now, pulmonary hypertension is one that I have long suspected (I've spent a long time on the internet these past 5 years trying to figure out what's wrong with me), but doctors scoffed at the idea when I brought it up. The sleep doctor initially mentioned it last July, but then blew it off. I do think you are onto something again. You get my vote for the Nobel Peace prize in medicine as far as I'm concerned.

Yes, I have long suspected pulmonary hypertension. No, I don't want to have it. However, I do want a diagnosis of what is ailing me, and if it's pulmonary hypertension, then it's high time to get on with a treatment plan.

[Sleeprider]

I have absolutely no qualifications in medicine other than my acquaintance with with another person who is not so unlike yourself. Pulmonary hypertension is not easily diagnosed, and is rarely suspected in otherwise healthy, younger females. It takes a concerned pulmonary specialist to understand the disease and to work through the diagnostics. Even when found, there is no cure, but you can change some lifestyle and environmental issues that can essentially make the problem go away. I have spent a lot of time at altitude and have some understanding of individuals who are unaffected, and others who become acutely ill as a direct result of altitude. I think your symptoms need to be explored with regard for the environment in which they occur. I wish you all the best, and hope you find some relief, and answers to your valid questions.

Since you have access to Diamox, that makes a great deal of sense for a short term effort to find relief. You should of course talk to your doctor if you contemplate using it more than a week or two. Many people find it to be the miracle that lets them exist at altitude.

tom

[sierragail]

I found this in the Merck Manual:

"The single most important cause of pulmonary hypertension in COPD is the narrowing (constriction) of the pulmonary arteries that occurs as a result of low blood oxygen levels. Having sleep apnea and living in or prolonged visiting in places that are at high altitudes can also cause pulmonary hypertension by lowering levels of oxygen in the blood."

Looks like I got the double whammy effect.

~~gail