PCP Doctor Says I have a "Low Drive to Breathe"

[Papman454]

I'm new to the forum but not a stranger to CPAP, as been on it since 2006, but without relief despite low AHI numbers. My first symptoms appeared in 2002 as I would have to take naps on my lunch break at work and was diagnosed in 2006 as my Oxygen level was low when arriving for a knee surgery. For those 4 years, I was sent to psychologists and told that I was just depressed. But SSRI's don't do anything for one's blood Oxygen and I didn't fit the for SA. I'm often too foggy to read the instructions, but have found recent energy and wanted to post up. I'm sure I missed something though. I once offended a moderator on another board by providing incomplete information, and that was the end of that. If my machine doesn't appear in the comments, its an old Respironics M Series Autopap with humidifier.

I've had something of a new revelation and what appears to be a solution, although not such an especially pleasant one.

I had a UPPP and deviated septum surgery in 2010, with little change in my energy levels although AHI dropped from 5 on CPAP to just under 2 and so it was deemed a surgical success. My ongoing AHI remains at a level of 2. Later supplemental oxygen of 3 Liters was added to my CPAP, which is an older Autopap at levels ranging from 11 to 15. The oxygen at night was certainly helpful, and I am reminded of that any time I forget to turn on the concentrator at night. I had long thought that the Jaw Advancement Surgury was my only remaining option, but the costs of orthodontist jaw repositioning for a year ahead of the surgery was always an obstacle.

I"ve had good overnight numbers for years, but still feel lousy all day. Recently I took a Pulse Oximeter to a meeting after being in a modest fender bender accident (for the other car, mine car was more severe) due to slow reflexes and knew there had to still be something else and it wasn't depression or getting the thyroid or blood tests checked repeatedly and hoping something is found. I compared my level to those of the other people at the meeting. My level was 86 to 88 consistently with the monitor, and all the other people were in the mid 90's and it became apparent that I need oxygen during the day. After all these years, it was like a light-switch to my energy level being activated. I took the oximeter to meet with my PCP and he compared it to his, and they were in agreement that my Oxygen levels were too low. He had me breathe harder, and then walk around his office complex with his meter and my meter. My oxygen levels quickly went up above 90.

When I am stationary, I don't breathe fully enough to maintain my levels. So all these years I went to a docs office after the activity of travel, my levels looked okay or at least borderline, but when not walking, moving about they drop back below 88 and my work is stationary and can't jog in place for it -lol.

As I work from home, I can use the same concentrator with a cannula during the day and it makes a large difference. I can run the hose out to the garage for car projects, etc but am only good for so long away from home. A portable concentrator is likely in my future but will have to pay cash as I have to self-pay for medical services now.

I'm somewhat muscular and somewhat porky, at 5-10, 200 lbs and exercise regularly, which also makes me breath harder and I always felt better until after the exercise was over and never put the two plus two together - hard to diagnose a foggy mind with a foggy mind. Since adding oxygen during the day, I'm also less sensitive to light and had to use sunscreen during the day, in the house- somewhat odd. I was a smoker for about a year at age 26, around a divorce, which was a long time ago now.

But I don't know how to re-train myself on how to breathe. If I breathe extra hard, it feels strained and unnatural. Over the years, I never had my oxygen monitored during the day, and everything was focused on the overnight readings. Now I really don't think the Jaw Advancement Surgury was the solution, as it wouldn't have changed my "drive to breathe", as the PCP calls it. I may have had this even longer than the sleep apnea as blood oxygen level testing at docs offices only became routine in the last 10 or so years.

So adding oxygen during the day seems like a simple, yet restrictive solution. Its so much better than where I was at.
So I sent this off to Cpaptalk to see what can come back. I don't know how to change the way I breathe, or even what to google on it. I've had a pulmonary function test before, with no abnormal results. I know a pulmonologist will order a full slate of tests, which has to be paid out of pocket. Thanks for listening.

[raisedfist]

I would have tests conducted to check the function of your heart. Specific blood labs, EKG, ECG, etc,. If your heart and lungs are good, perhaps there is a medication that will boost your respiratory drive...it sounds like maybe your respiratory rate is too slow for your metabolic needs, for whatever reason.

[palerider]

I'm new to the forum but not a stranger to CPAP, as been on it since 2006, but without relief despite low AHI numbers. My first symptoms appeared in 2002 as I would have to take naps on my lunch break at work and was diagnosed in 2006 as my Oxygen level was low when arriving for a knee surgery. For those 4 years, I was sent to psychologists and told that I was just depressed. But SSRI's don't do anything for one's blood Oxygen and I didn't fit the for SA. I'm often too foggy to read the instructions, but have found recent energy and wanted to post up. I'm sure I missed something though. I once offended a moderator on another board by providing incomplete information, and that was the end of that.

Crapniabored? they're very touchy over there.

If my machine doesn't appear in the comments, its an old Respironics M Series Autopap with humidifier.

Your sig says, auto bipap, is it the auto, or auto bipap model?

So I sent this off to Cpaptalk to see what can come back. I don't know how to change the way I breathe, or even what to google on it.

That's outside my scope, but hopefully someone else will have suggestions.

[Miss Emerita]

Papman, it’s good you have some ideas about how to move forward. It sounds as though you will be able to make your life a lot better by following through. Did your doctor actually tell you that the solution is for you to breathe differently? If so, you’d want to go back and ask him how to do that, right? If he didn’t really make any suggestions for your next steps, then I hope you will go back and ask him “So now what do we do?” Meanwhile, I don’t know whether this link will help, but here you go:

https://my.clevelandclinic.org/health/d ... -hypoxemia

Best of luck!

[Muse-Inc]

If I were you, I'd have doc order a full thyroid panel including reverse T3. Low thyroid function decreases the brain's sensitivity to the need to breath. Free T3 and free T4 should be mid-range or higher and reverse T3 low (if high, it will occupy receptors before normal T3 and block thyroid activity). This can contribute/create a situation often called 'air hunger.'

If thyroid is optimal, then there might be what's called the hypoventilation of obesity that makes for shallow breathing which might drop 02 levels. Could be a few sessions with a PT with respiratory exercises experience might have some breathing exercises that might help. Guessing it kinda depends on the cause.

Oh, investigate the possible use of topical progesterone which is normally increased at high altitude to compensate for lower oxygen % in the air -- men normally produce 3-4 milligrams/day, women 22-25 in the second half of their cycle. People who are subject to altitude sickness/climbing expeditions carry Diamox. Might ask your doc about these and see what he/she says.

[Papman454]

I appreciate the warm welcome and info about my situation.

Managed to get an appointment with a Pulmonologist who specializes in sleep medicine, and on a self-pay basis. It was good to read the suggestions there may be an issue that can be addressed with medication or through an inhaler, and that I should get a complete thyroid panel.

I've measured my respiratory rate and its about 18-19 breathes per minute, and in general the normal is about 15 to 20. Sorry to say I never did ask the PCP for his view on the condition, as he jumped on the suggestion about a pulmonologist and his diagnosis ended there, other than my oxygen rate moves over and above 88 when I'm in motion.
When moving, the o2 level increases, and my favorite hobby is restoring old cars which keeps me moving and interested in the evenings. Winters in Colorado can be frosty and I do use a propane heater in the garage and don't know if there is a connection though that is supposed to be safe from what I've googled thus far. I also worked in a coal-fired powerplant for 12 years, in an earlier life, and went back to school exactly because of long-term respiratory concerns.

It may be I've had the breathing problem much longer than the SA, though the SA first brought some things to light. My very first sleep study had readings as low as 72%, though my AHI on my Auto-Bipap is under 2 now, and has been for years. As mentioned, I had the UPPP and deviated septum surgeries. SA is much worse on my back, and I've learned to tape half a dozen regulation softballs to a T-shirt to keep myself sleeping on my sides, but once in a while I'll get onto my back anyway and know I was, when I wake up.

Will see what the pulmon and/or respiratory therapist has to offer, upcoming. Thank you for your insights.