chronic hyperventilation syndrome?

[loree147]

I am a 47 year old female with a 3 year history of progressive shortness of breath. I have had many tests over the years and all have been pretty much normal. The only abnormality has been an elevated pressure on several echocardiograms of 44 to 50. I have had two right heart catheterizations which have been "high normal' (30/8). I have seen a psychiatrist who said I have anxiety but it is related to not having a diagnosis and my symptoms were not consistent with a mental health disorder. I also tried two anti anxiety drugs and an anti depressant with no relief. These were all at my request as I just want to feel better and will try anything. I continue to have exertional shortness of breath. I am not SOB at rest. I also get a very congested feeling as the week goes on as if I am getting a cold. The more I do, the more congested I get. I also have a dry cough when I exert myself.
  I recently saw a pulmonologist as my family doc had done a walking oximetry and my oxygen saturations dropped significantly. He did the oxygen test again and it was normal. He started off the conversation saying he said I likely had hyperventilation syndrome. He then asked if I had tingling or numbness around my mouth or fingertips. I don't have that. He asked if I have sleep disturbances which I also don't have. I have had episodes of dizziness but I relate that to an inner ear problem. I have no neurological or GI problems. I have no pain. He mentioned eventually that maybe my pulmonary pressures are going up when I exercise and is ordering a stress echo. He also said my heart was a "funny shape" which he is going to ask a cardiologist about. My ascending aorta is prominent I guess.
  I can't seem to get the idea out of my head about the hyperventilation syndrome. Does it sound like it is possible?

[Abhijeet Deshmukh, MD]

I can understand what you want to express here. In addition to your breathing problems, you seem to be developing a meta-emotional component, in other words, a disturbance about the disturbance! Accepting that is it ok to be disturbed about something you can't solve right now is healthy. And this acceptance is not equal to 'giving up', but more like acknowledging the situation.

It's ok to not know what to think at times. If you can eliminate this secondary disturbance, you will be able to focus more on the problem at hand.

[Abhijeet Deshmukh, MD]

I suppose you can wait for the cardiologist's opinion and also the results of the stress test that your pulmonologist has ordered.

I won't be able to comment on what your diagnosis could be, but to me, it seems you do need to get a few more investigations. Your symptoms are specific. The shortness of breath is not random and comes on exertion. I'd wait for the stress test results and any more relevant tests the cardiologist orders. You can also talk to your doctor about the suggestions given by Jaquta.

Taking this whole process one step at a time might help you more. Almost always, it's not what happens to us that makes us disturbed, but it's the inferences we tend to draw from what happens to us, that lead to the disturbance. It seems to me that you are getting disturbed about the fact that your symptoms are not getting diagnosed sooner than this. The shortness of breath comes on exertion, but the unrest and the disturbance about the delayed diagnosis is probably with you all the time. Try working on this. It sure is difficult, but if you can see it as a challenge and not a problem, it becomes much more motivating.

I agree it's disturbing when you have done many tests, and some of them may be unnecessary, though retrospectively. A better way to deal with the disturbance is to look at it the other way. Every test tells you at least 'what's not' there. And so in a way, each test was significant in the process. When you say you feel confused and awful most of the time, you are probably inferring from the tests results and the doctors' opinions that your diagnosis is going nowhere. And this inference may not be entirely correct. I can't write more at this stage, but d let me know what you feel about this. Comments from other members are useful. Please also let me know if you want more clarification about anything in particular in my answer.

[loree147]

Thank you for the comments. They were helpful. I struggle much of the time with the not knowing for sure but I also find it difficult not knowing what to think. What I mean is, if it is psychological, thinking it is not won't make me feel better but at the same time, thinking it is is frustrating as no matter how hard I try, I can't make the symptoms go away. I feel like I am in limbo. On the days I feel really bad, it is so hard because I try not to say anything to anyone, in case it turns out to be psychological. I never miss work no matter how I feel. I don't know where to put my feelings and it is hard to ignore when you are having a hard time to breathe.

[Jaquta]

I'm not sure about the heart stuff, etc but have the doctors looked at exercise induced asthma or reflux or iron deficiency?

You could try asking on the undiagnosed symptoms community forum too.

[loree147]

It bothers me in the sense that I have gone through all of these tests and I didn't need to and yes, it makes me feel kind of silly and confused at the same time. I am an RN working closely with many of these specialists. For the longest time, I was convinced this was psychological and that is why I tried therapy and medication. It didn't work and I feel worse than ever. The psychologist said I was fearful of dying in case this was serious and was having a hard time to accept it. So many people would tell me that it is not in my head including my family doc and I kept saying it had to be as nothing was showing up. Now I feel so awful most of the time, I can't imagine it is because of the way I breathe. I have tried relaxation techniques and different ways to breathe but it doesn't help.
  I am confused because I have tried everything but I continue to feel unwell which is frustrating if it is in fact hyperventilation.
  Would it be a better diagnosis that pulmonary hypertension,? Absolutely, but in the last 6 monthes, my quality of life has been affected as I am so symptomatic and I just don't know what else I can do.
  I wanted to know what you think as I don't want to waste anyone's time with more testing but I also want to get to the bottom of it.  

[Abhijeet Deshmukh, MD]

Could you elaborate on your question a bit? I would like to know why you want to get the idea out of your head. Are you suggesting that the particular probable diagnosis of 'hyperventilation syndrome' is bothering you more than anything else?