Pulmonary hypertension

[amandalee]

I was doing some reading today about conditions that sometimes occur with sleep apnea. Basically, I'm trying to figure out why I still feel so tired and crappy despite the fact that my CPAP therapy seems to be going well (according to the numbers, at least).

I read about a condition called pulmonary hypertension. There is some information about it here:

http://www.americanheart.org/presenter. ... fier=11076

High blood pressure in the arteries that supply the lungs is called pulmonary hypertension (PHT). The blood pressure measured by cuff on your arm isn't directly related to the pressure in your lungs. The blood vessels that supply the lungs constrict and their walls thicken, so they can't carry as much blood. As in a kinked garden hose, pressure builds up and backs up. The heart works harder, trying to force the blood through. If the pressure is high enough, eventually the heart can't keep up, and less blood can circulate through the lungs to pick up oxygen. Patients then become tired, dizzy and short of breath.

Do any of you have pulmonary hypertension in addition to OSA? What symptoms did you have, and how did you get a diagnosis?

I'm just curious if it's something I should bring up with my doctor as a possible cause of my tiredness. (If I can get any doctor to actually listen to me that is... )

The symptoms seem to fit. I am always tired no matter how much sleep I get or however well the CPAP seems to be working. I sometimes feel short of breath. I have gotten inhalers for it, but they don't seem to help that much and using them just makes me feel nauseous. I had an abnormal ECG (preventricular contractions) and had to see a cardiologist who did an ultrasound of my heart and didn't see anything wrong.

It would be really nice to have some answers as to why I always feel so crappy.

[socknitster]

Hmmm. I just posted on your other thread. I don't claim to know anything about this disorder but your description of your symtoms sure sounds like you need to ask your doc about it to me!

Jen

[amandalee]

You're right.

I'm just trying to think of what to say so that I don't come across as a total hypochondriac; so that the doc will actually take me seriously.

[socknitster]

Oh dear. I do know how that feels. It is really awful that we have to go thru this as women. Demand a test for this disorder. Don't take anything less.

Jen

[Gerald]

Amandalee..........

Sorry things aren't improving as you would like. Before getting worried about pulminary hypertension, I suggest that you sit back and think about the main points.

The primary issue is whether or not your blood O2 saturation level is 93% all night, every night.

If, after measuring yourself with a Recording Pulse Oximeter, you find that your Oxygen saturation level is sometimes below the 93% minimum, you need to work at getting your level up to where it's supposed to be.

There are (4) obstacles that conspire to prevent your O2 level from being where it should be.

If you snore, that means your airway tissues are collapsing to the point where you aren't getting enough air......and that means not enough O2.
CPAP is used to push those tissues aside....and open up your airway so that you can breathe. Finding the lowest pressures that'll do the job is first on the list.

If you have sinus drainage, it can build up a "gooey sludge" that'll block your airway.....even if your CPAP machine is trying to do its job. This sometimes happens to me. "Sludge" means not enough O2.

If you have a mask that leaks, your CPAP machine can't develop enough pressure to push your airway tissues aside.....and you won't get enough air....because your CPAP machine is being defeated by pressure drop....caused by mask leaks......and that means not enough O2.

Finally, if your mouth is leaking, it's no different than having a mask leak....the pressure drops......your CPAP machine is defeated......and you don't get enough air.....and that means not enough O2.

My honey discovered that....even with a pretty good score of AHI 2.5.....her O2 levels were still below 93% part of the night.......and she felt "below par" the next day.

She has learned that she has to get the AHI "score" down to around 1.0 to be sure she's getting enough O2 throughout the night.

If she wasn't running Encore Pro and Analyzer.....if she didn't have access to a Recording Pulse Oximeter with good reporting software.......she'd be "flying blind"......and wouldn't REALLY know whether she was making progress or not.

So.....What I've outlined here.....are the "dirty little secrets" that the medical profession doesn't disclose to the "patients". Sufficient O2 is the real issue.......and the "fight" to discover the correct pressures needed......prevention of sinus drainage "sludge"......finding a mask that doesn't leak......and conquering mouth leaks....is the real struggle.

One issue....four variables......and tools to watch how those variables are controlled.....is what you need.

Gerald

[amandalee]

Yes, it is so frustrating getting blown off all the time:
"Alot of things can cause fatigue, it's hard to say why you are feeling so bad." Duuhhhh, then run some tests!
"It can take a long time to feel better even once you have started CPAP therapy." Yes, but not this long (especially since I am only 27) and I shouldn't still be feeling this bad.

Sorry, I am so irritated and just need to vent.

ETA: I guess I need to get a pulse oximiter...


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CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP

[kteague]

Amandalee,

Your doc should be able to order an overnight oximetry which, from reading on here, most DME's will supply to you for free to do at home.

Chronic and increasing shortness of breath plagued me for the last few years. Twice I was told I had pneumonia yet it wouldn't clear up with treatment. Finally after breathing studies showed I had reduced lung capacities, the docs did a bronchoscopy and decided there was an inflammatory process going on, maybe autoimmune. I just wonder why it took them so long to figure this out, but from all I've read, it can take a while for it to be obvious.

It may be there are some tests you've already had done that would give different answers if repeated. Who knows?

Be direct with your doctor. Tell him this is jepoardizing your job and your well being and you need to not just keep waiting to feel better. By the way, hopefully it's a pulmonologist you are seeing.

Kathy

[Slinky]

Well, I have COPD and have had for some 10 years. I've had a regular stress test, three different chemically induced stress tests and it took the poor lowly ole doppler ultrasound ECG to find moderat pulmonary hypertension. And it was my sleep pulmo to have the good sense to order that doppler ECG despite the very recent chemically induced stress test ordered and done by a cardiologist.

[dllfo]

Knowing your oxygen levels would be my first suggestion. I usually scored at 90 or above while at the doctor's office, but when I got home I was too tired to do anything and would fall asleep in my chair. My pulse ox was as low as 82 at home.

I apologize for beating a dead horse, but if you take all the tests, PFT, PST, Methachlomine Challenge Test and they say you are normal, it could be a hole or tear inside your heart. That was one of my problems discovered at the National Jewish Hospital. They put an implant in my heart & cured it.

The Cardiologist who did the surgery said they think up to 20% of the population has this problem, some worse than others. An echocardiagram with agitated saline will find it. Watch the screen, if you have bubbles on both sides, get ready for an implant or maybe even surgery to correct it.

Everyone has the flap in their heart. As a baby, the mother breathes for the baby, so the flap is open. After birth ti seals itself so the desat oxygen cannot make a left turn and mix with the oxygen saturated blood. This was a major part of my being so tired all the time.

Good luck, I sure hope you find out what is wrong....

[Slinky]

... Everyone has the flap in their heart. As a baby, the mother breathes for the baby, so the flap is open. After birth ti seals itself so the desat oxygen cannot make a left turn and mix with the oxygen saturated blood. ....

Isn't that a description of PDA? Patent ductus arteriosis? We ran into PDA in dogs from time to time. I tend to sometimes get MVP (mitral valve prolapse) and PDA mixed up because of the valve/flap bit.

It hardly seems fair that both occur more often in women than in med.

[deerslayer]

Well, I have COPD and have had for some 10 years. I've had a regular stress test, three different chemically induced stress tests and it took the poor lowly ole doppler ultrasound ECG to find moderat pulmonary hypertension. And it was my sleep pulmo to have the good sense to order that doppler ECG despite the very recent chemically induced stress test ordered and done by a cardiologist.

........................................................after coming out of the last RA flare up & bronchitis/penumonia and getting off the mexatrexate/prednasone. i crapped out before completing the stress test. the cpap thing has helped in that my sinuses are clear all night, until i take the mask off in the morning and i start bringing up UN- cultured pearls(sorry).my nose can drip just from bending over. last week the doc said my bp was a little high, have never had that before. they also said i had a reguritation of valve and have some face swelling on one side. ...but, i feel good & have more energy,despite ?

[Julie]

PH is a very serious condition, but not one that sits around for ages like your symptoms have, and if you had it, you'd very likely have been made aware of it in very obvious ways, not just by being tired, or other things you highlighted. It's also relatively rare, not something the average person has to deal with on a daily basis, and you'll make yourself crazy trying to diagnose things on your own (there are SOO many conditions that 'fit' your symptoms). Just go to the MD and be direct (bring a little note with priorities set out) about it all, stressing that your AHI is pretty good, but that you still feel lousy and need to be checked for other things, possibly including depression.

[krousseau]

If it is a major concern check it out with a doctor that listens. Your symptoms could be due to a number of conditions including inadequate treatment of your SDB and depression/anxiety, and PH. Benign PVC's are common. You have a baseline echo and EKG so future changes can be easily detected. In spite of the fact that I listed depression/anxiety above DO NOT accept them as the cause until you are convinced there isn't another "medical" problem.

Check PH out on wikipedia (URL below); compare your medical history, look at risk factors and all that. AND make an appointment with your doctor; write down the symptoms you are concerned about. Specify you are concerned about PH (or any other serious conditions). A good history and physical can give direction to any tests you might need. http://en.wikipedia.org/wiki/Pulmonary_hypertension

[amandalee]

Thanks for all the replies, they are very helpful and encouraging.

I am not willing to accept depression/anxiety as the cause unless other medical problems have been ruled out. I wasted 5 years taking various anti-depressants that didn't help me, while the real problem (OSA) went undiagnosed.

I realize that trying to diagnose myself probably isn't the smartest idea in the world, but my experiences with doctors have been, shall we say, less than ideal, and I don't have much confidence in them to find the solution for me.
The fact that I practically had to beg to be sent to a sleep specialist after suffering horrible fatigue and being misdiagnosed with depression doesn't make me feel very trusting of the American medical system.

[sootired2]

Amandalee, I do know something about pulmonary hypertension. The initial screening test for it is a cardiac echo. If that shows elevated pulmonary pressures, then you would need to see a specialist who would then run a number of tests. The only way to diagnose it for certain is a right heart catheterization, but no one will do that based solely on shortness of breath as it has risks and is invasive. So, if your echo didn't show elevated PA pressures, then it is unlikely you have PH.

Primary PH is very rare, but secondary is more common, sometimes secondary to autoimmune diseases like Lupus or Scleroderma. Secondary PH is quite commonly due to left heart problems, which cause a pulmonary venous hypertension, leading to the elevated PA pressures. And, as someone above mentioned, it can be secondary to COPD.

There are many causes for shortness of breath. Maybe your primary doctor could order pulmonary function tests which would be a good start. I hope this helps some!