"Intermittent Hypoxia" anyone ??

[Bright Choice]

I have been on ASV for almost 3 years now. I started having health problems following surgery 2 years ago. I am being rather unsuccessfully treated for a pretty severe case of Fibromyalgia. It seems that my body just wants to shut down. Among other problems, I have developed "Intermittent Hypoxia". I noticed that my daytime oxygen levels would drop as low as 60 and then pop right back up again. It never showed up in docs office because they never caught a low. At first I thought it was a problem with my CMS 50f oximeter(s). I have two and they both show the same thing.

I contacted Kevin Cooper at http://www.pulseoxstore.com. He was wonderfully helpful. He pointed out that the 50f takes readings more frequently so it makes them more sensitive to change. He also commented that there are a few people here who might be interested in this conversation, so that is why I am logging in again after a long absence.

I then saw a Pulmonologist who confirmed that it is Intermittent Hypoxia. He has 8 other patients with this and despite all sorts of testing they can't figure out what is going on. I live at 6000 feet altitude. He said that of those 8 patients, 6 did better at lower altitudes. Two did not.

I am on O2 at 2-3 liters 24/7 and it helps but does not stop the desats. They never last longer than 1-2 minutes but I feel bad when they are frequent. I am wondering if it is related to the dysautonomia of Fibromyalgia, but I cannot confirm that.

I'd love to get some input here from anyone who is aware of this problem. And BTW, I cannot recommend Kevin Cooper strongly enough. He was very very helpful and was very quick to respond to my email.

Thanks!

[JDS74]

One question: do you always use the same finger for the readings?
Have you tried shifting to the other hand while this is occurring?
If so, did the reading change or remain the same?
Ever tried one on each hand since you have two of them to see if there is a bi-lateral difference?

How did the pulmonologist diagnose the condition? Did he catch one in his office or do a 24 hour oximetry study?

Note: here begins some total speculation.
It might be the case that this is a circulation problem and not a "real hypoxia." Did you have any cardiac studies to confirm that there are no heart problems? A short acting sinus tachycardia event might show up that way with no symptoms that you would notice. The way to find out is a 24-hour Holter monitor to catch all of the heart information for a complete day. While the CMS-50F is great device (I also have two of them), for high heart rates, I don't find it reliable enough to use as a diagnostic tool. I have a separate heart rate monitor that is a poor man's Holter monitor that is much more accurate.
Note: here ends the total speculation.

I have sympathy for your circumstances of living at 6000 feet. The last two times I flew to California, it was all I could do to keep my SpO2 level above 90%, lots of hyperventilation, etc. I mentioned this to my anesthesiologist in preparation for a procedure and his comment was "Don't fly out the coast." I assume that you, like me, are on ASV machines because of central apneas. Prior to my getting an ASV 9 months ago, I would record centrals at night that lasted up to 2 minutes at a time. I would also observe them during the day but I would notice them by about the one minute time and begin forced breathing to get things going. Perhaps something like that is happening.

Before y'all get all antsy about having an apnea while awake that goes on for a minute, remember all the clues that your body has to make you breathe are shut down during the apnea and you don't feel anxiety or anything else - the breathing just stops. It doesn't happen to me very often and always in the evening when I am sitting quietly.

[library lady]

I have fibromyalgia, but I do not have desats lower than 90%... FWIW.

[Julie]

I would make every effort to get off that mountain (after spending some time below - long enough for the effects to really show any potential difference) if possible... it can't be helping! Whether or not they trace or name the problem you have in the near future, we're all getting older and inevitably acquire some kind of problem, many of them respiratory related, whether pulmonary or cardiac, and if I had any choice, I'd do whatever I could afford to move.

[Bright Choice]

One question: do you always use the same finger for the readings? NO
Have you tried shifting to the other hand while this is occurring? YES
If so, did the reading change or remain the same? they remain the same
Ever tried one on each hand since you have two of them to see if there is a bi-lateral difference? yes, they are identical

How did the pulmonologist diagnose the condition? Did he catch one in his office or do a 24 hour oximetry study? I caught it at home, using my CMF 50f oximeters. When I approached my pulmonary doc about this I thought he would think I am crazy. He immediately agreed and said he has seen this in 8 other patients. They did all kinds of testing on these people and never came up with anything. Six of the eight did better at lower altitudes, two did not.

Note: here begins some total speculation.
It might be the case that this is a circulation problem and not a "real hypoxia." Did you have any cardiac studies to confirm that there are no heart problems? A short acting sinus tachycardia event might show up that way with no symptoms that you would notice. The way to find out is a 24-hour Holter monitor to catch all of the heart information for a complete day. While the CMS-50F is great device (I also have two of them), for high heart rates, I don't find it reliable enough to use as a diagnostic tool. I have a separate heart rate monitor that is a poor man's Holter monitor that is much more accurate.
Note: here ends the total speculation. Great observation. Yes, I have noted that my heart rate can go up to 120 and then it goes right down, as the oxygen comes up. I have kind of been ignoring that piece of the puzzle. I think the holster device is a good option. What monitor do you have thar is the "poor man's holter?

I have sympathy for your circumstances of living at 6000 feet. yes, I am fully aware of the problem, but those of us who live in Colorado don't think this is very high at all. The last two times I flew to California, it was all I could do to keep my SpO2 level above 90%, lots of hyperventilation, etc. I mentioned this to my anesthesiologist in preparation for a procedure and his comment was "Don't fly out the coast." I assume that you, like me, are on ASV machines because of central apneas. yes Prior to my getting an ASV 9 months ago, I would record centrals at night that lasted up to 2 minutes at a time. I would also observe them during the day but I would notice them by about the one minute time and begin forced breathing to get things going. Perhaps something like that is happening. yes, that has passed through my mind. It's a tricky thing to observe because if you think about it, it forces you to breathe.

Before y'all get all antsy about having an apnea while awake that goes on for a minute, remember all the clues that your body has to make you breathe are shut down during the apnea and you don't feel anxiety or anything else - the breathing just stops.yes, I do notice that during the daytime, but I never know how long it has been going on. No, no anxiety or other symptoms. It doesn't happen to me very often and always in the evening when I am sitting quietly.

Thanks for your thoughtful comments! I will see if I can get a 24 hour Holter reading from my doc.

[Bright Choice]

I have fibromyalgia, but I do not have desats lower than 90%... FWIW.

That's good that you don't. I never would have noticed it without my CMS 50f. My docs never discovered it.

[Bright Choice]

I would make every effort to get off that mountain (after spending some time below - long enough for the effects to really show any potential difference) if possible... it can't be helping! Whether or not they trace or name the problem you have in the near future, we're all getting older and inevitably acquire some kind of problem, many of them respiratory related, whether pulmonary or cardiac, and if I had any choice, I'd do whatever I could afford to move.

I will be in Miami in August. It will be a good experiment. Moving seems well advised, but does not look that appealing right now.

[JDS74]

Here is a link to their current model.

Poor man's Holter Monitor

The one I have has fewer features. Shop around, there may be a better price at other suppliers.

Sounds as if the trip to Miami will be a good experiment. Take your oximeters.
Will you have access to a computer for downloading the oximetry data?

When I travel, I switch out the SD card daily so I can get all my wave data when I get home.
One SD for each travel day. I carry 10 SD cards when I travel to cover 10 days.

If you don't use Encore, then this is not necessary.
To load multiple days of wave data into Encore, reset the date on the computer for the earliest SD card, load the data. Change the date, load second card. Repeat until all cards are loaded.
The date to start with is the date that the SD card was swapped out. If you do it in any other sequence, you'll lose wave data and Encore will refuse to load.

[avi123]

"Among other problems, I have developed "Intermittent Hypoxia". I noticed that my daytime oxygen levels would drop as low as 60 and then pop right back up again. It never showed up in docs office because they never caught a low. At first I thought it was a problem with my CMS 50f oximeter(s). I have two and they both show the same thing. "

1) For how long a time did the Desats of 60 last?

2) Doesn't a Holter Monitor measure ECG and not blood Desaturation?

http://www.heart.org/HEARTORG/Condition ... rticle.jsp

[JDS74]

Holter monitors are indeed for measuring heart rate.

In this case, looking for abnormal rhythms that could account for the occurrences of low O2 saturations.
At elevated heart rates, the heart pumps less blood and the extremities get less circulation leading to a low sat.
The OP reports a drop in sat to about 60% that lasts for a very short time. That sounds like a blockage except that the drop is bilateral so a blockage is out. It is also of very short duration and only occasionally occurring so it didn't show up at the doctor's office but was caught at home with a CMS50F oximeter.

If you have an oximeter, you can try the following experiment:
Turn the oximeter on and make sure it is displaying correctly.
Then hold your breath for as long as possible - this will be somewhat less than one minute.
Watch the oximeter all the time. Notice that the SpO2 number hardly moves.
End of experiment.

Bless her as it seems she is very in to managing her own treatment and has concluded that more data is better (just like me).

What you learn from this experiment is that it takes a pretty long apnea to affect the blood oxygen level and two minutes (the duration noted by the OP) won't get you anywhere near 60%.

[palerider]

If you have an oximeter, you can try the following experiment:
Turn the oximeter on and make sure it is displaying correctly.
Then hold your breath for as long as possible - this will be somewhat less than one minute.
Watch the oximeter all the time. Notice that the SpO2 number hardly moves.
End of experiment.

it takes time for the desaturated blood to get to your fingertips, I usually see a dramatic drop in sp02 *after* I start breathing again, then it comes back up. so I'd say "wait a couple minutes, then end of experiment."

[Bright Choice]

Here is a link to their current model.

Poor man's Holter Monitor What kind of heart related activities does it monitor other than rate?

The one I have has fewer features. Shop around, there may be a better price at other suppliers.

Sounds as if the trip to Miami will be a good experiment. Take your oximeters.
Will you have access to a computer for downloading the oximetry data? yes

When I travel, I switch out the SD card daily so I can get all my wave data when I get home.
One SD for each travel day. I carry 10 SD cards when I travel to cover 10 days.

If you don't use Encore, then this is not necessary. i don't use encore, what activities does it monitor? I can download data from CMS 50f. It does not use an SD card.
To load multiple days of wave data into Encore, reset the date on the computer for the earliest SD card, load the data. Change the date, load second card. Repeat until all cards are loaded.
The date to start with is the date that the SD card was swapped out. If you do it in any other sequence, you'll lose wave data and Encore will refuse to load.

[Bright Choice]

"Among other problems, I have developed "Intermittent Hypoxia". I noticed that my daytime oxygen levels would drop as low as 60 and then pop right back up again. It never showed up in docs office because they never caught a low. At first I thought it was a problem with my CMS 50f oximeter(s). I have two and they both show the same thing. "

1) For how long a time did the Desats of 60 last? Not sure, I just caught the end of it. I did not have the alarm on at the time.

2) Doesn't a Holter Monitor measure ECG and not blood Desaturation? yes, that's what I thought

http://www.heart.org/HEARTORG/Condition ... rticle.jsp

[palerider]

i don't use encore, what activities does it monitor?

Encore is the respironics equivilent to resscan.

[Bright Choice]

Holter monitors are indeed for measuring heart rate.

In this case, looking for abnormal rhythms that could account for the occurrences of low O2 saturations. that makes a lot of sense to me.
At elevated heart rates, the heart pumps less blood and the extremities get less circulation leading to a low sat.
The OP reports a drop in sat to about 60% that lasts for a very short time. That sounds like a blockage except that the drop is bilateral so a blockage is out. It is also of very short duration and only occasionally occurring so it didn't show up at the doctor's office but was caught at home with a CMS50F oximeter.

If you have an oximeter, you can try the following experiment:
Turn the oximeter on and make sure it is displaying correctly.
Then hold your breath for as long as possible - this will be somewhat less than one minute.
Watch the oximeter all the time. Notice that the SpO2 number hardly moves.
End of experiment. i couldn't make a full minute, but the SPO2 did not change

Bless her as it seems she is very in to managing her own treatment and has concluded that more data is better (just like me). That's me

What you learn from this experiment is that it takes a pretty long apnea to affect the blood oxygen level and two minutes (the duration noted by the OP) won't get you anywhere near 60%.

Thanks, I appreciate your input.

See my next post about "dysautonomia". I'd like to see if you have any thoughts.