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Nighttime wheezing and SOB

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  • Nighttime wheezing and SOB

    My appt with Dr. Lever is not until July, so I'm just curious to see if anyone has had experience with this problem. I freq had shortness of breath and wheezing at night only, then, my beta blockers were stopped and I gradually got rid of this troublesome problem. Ever since, I had general anesthesia, 2 weeks ago (for lead extraction) the night wheezing and SOB are back - big time. Years ago, I went to the ER and they got all excited because my lungs sounded so awful, but when they did the chest X-ray, it was negative. Recently, I decided to avoid the ER. My doctor is puzzled. She says "all that wheezes is not asthma" and that you can wheeze with heart failure. My last ECHO showed some mild pulmonary hypertension. Meanwhile, I'm back on Advair, nighttime inhallation treatments with Zopenex (albuterol really elevates my heart rate & I don't want my defib to fire) and I carry a rescue inhaller. I think I just might be allergic to molds, and the damp air at night triggers the symptoms. Any others out there with asthma or allergies? It's really difficult to sort through these symptoms when the diagnosis of HCM is there. BTW, I saw a pulmonologist and he saw the HCM diagnosis and just about threw me out of his office, saying, this is your heart, not your lungs"...

  • #2
    Re: Nighttime wheezing and SOB

    I don't have exactly what you have but I have had some undiagnosed breathing issues since I was a teenager. I've been tested for asthma twice with negative results. My HCM dr recommends that I get tested again so I will. If I pass that test I'll go to an allergist. My echos never show that the problem is being caused by my heart issue.
    My breathing issue is that sometimes it feels like my airways are narrow and I have the urge to take a deep breath so I try but I cannot fill up my lungs so I get a little sob. This has happened while my oxygen is being monitored and during asthma tests yet they say I'm still receiving 100% oxygen. I never wheeze. It can last from a few minutes to hours.
    I have seen a pulmonologist and he said maybe it's anxiety and my muscles tighten up. My issue is worse when I'm anxious or after eating heavy but there is no real pattern to when I feel the problem. I'm hoping an allergist will shed some light on it.
    Let me know if you find out what causes your breathing issue.
    Diagnosed during pregnancy age 30, July 2007
    2 mutated genes found in Feb 2009
    ICD Nov 12, 2009
    2 daughters born in '07 & '09. Normal EKGs.
    No known family history of HCM
    In 1995, at age 18, an echo for a misdiagnosed mvp showed HCM but it went unnoticed.
    Still jog and feel no symptoms on most days.

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    • #3
      Re: Nighttime wheezing and SOB

      I would call Dr. Lever's office and at least get a phone consult with him. He might want to move your appt up a bit. I can't diagnose from the internet, but it's possible that a bit of heart failure is what is causing your breathing problems. Only a specialist can tell you. Did the pulmonologist do much testing or did he just decide it was your heart right away?
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

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      • #4
        Re: Nighttime wheezing and SOB

        Hi, don't have an answer for you, and I definitely agree that trying to get help sooner rather than later sounds very wise as your symptoms could well be CHF. But I can tell you that this set of diagnoses can be puzzling. I have a relatively rare lung condition - bronchiectasis - as well as a long history of asthma and allergies along with CHF and mild pulmonary hypertension. I only had one doctor - a European (Netherlands) doc in Beijing China - who seemed to actually be able to distinguish the chest sounds. He told me that asthma wheezing sounds like music or whistling and can best be heard in the sides and top of the lungs. CHF sounds most like water bubbling, since that is what it is, and, as long as you are upright, can be heard along a definite line at the bottom of the lungs. Pneumonia sounds like rasping one piece of sandpaper against another and is heard wherever the infection is located. While I was in China, I often had all three sounds simultaneously and he would move the stethoscope from one place to another showing me what he meant.

        I really should name him here because he is a hero to me! He is Dr. Han Jansen and is headed for Afghanistan in a few days to work for the WHO for several months inoculating children there. If a doctor disagrees with these sounds, please do not blame Dr. Jansen, blame my low oxygen sats at the time when he was treating me. I have forgotten a lot about that time as a result, but without his treatment, I doubt I would have even found out that my oxygen sats were low.

        That leads me to my last point. No one has definitely diagnosed why my oxygen sats are often low (although they have improved somewhat over the past two years). In fact, the . pulmonologist says it is my heart and the cardiologist says it is my lungs. Every time I have mentioned this to a doctor, they have laughed and said that that is always the way it is - pulmonologists always blame the heart and cardiologists always blame the lungs. So don't take the pulmonologist's word too seriously, but keep looking for a definitive answer.

        Rhoda

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        • #5
          Re: Nighttime wheezing and SOB

          Tomorrow I see my primary MD (she is an Internist) and I'll ask her to have her office staff call and try to move the appt with Dr. Lever. (Many times, a doctor's office has more luck with these things than an individual). Last night I tried Xopenex inhallation and did not like what it did to my heart (lots of skipped beats). In answer to your question, Reenie, the pulmonologist was a real idiot. First, he told me that I could not be my stated age, then he kept pressing me about plastic surgery which he was sure I must have had (you know, those of us with HCM, who are big anesthesia risks at best, just jump right on the OR table for plastic surgery whenever we need something tightened - GRRRR! He then told me my problems were definitely my heart because he was from NYC and he knew ??????? No testing was done and I refused to go back.

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          • #6
            Re: Nighttime wheezing and SOB

            Well he does sounds like a true idiot! Hopefully you'll be able to get in with Dr. Lever soon. In the meantime, please tell your PCP how this guy treated you. That's absolutely ridiculous.
            Reenie

            ****************
            Husband has HCM.
            3 kids - ages 23, 21, & 19. All presently clear of HCM.

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