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    • #19679
      Colleen Steele
      Keymaster

      My son became symptomatic at 6 years old. Struggling to catch his breath and occasional chest pains where two of the symptoms but at this early stage it was a dry cough that was the biggest concern. Not only was it the worst of the symptoms but it also contributed to two years of misdiagnosis. He was frequently diagnosed with croup and later, asthma.

      It wasn’t croup and it wasn’t asthma causing the dry cough, it was PH. I’ve read that coughing is actually an uncommon symptom in PH patients, but not unheard of.

      Do you experience a cough that has been diagnosed as a symptom of your PH? Was it first misdiagnosed as something else? Share your experience with us.

    • #19693
      Jen Cueva
      Moderator

      Hi Colleen,
      I do often have a dry cough off and on through the years. I was told by my previous PH doctor that this is common in PH patients more than we think. He traveled the country to educate on PH, so he’s seen thousands of PH patients through his years. He’s also a huge researcher in PH.

      I can see how this dry cough may be misdiagnosed. But when I have this, PH cough”, it’s unlike the cough I get from bronchitis, etc.

      I also deal with a hoarse voice at times, which he also contributed to my PH. Did you son deal with the hoarseness too or just the cough?

      • #19702
        Colleen Steele
        Keymaster

        Jen, it was mostly the cough. Because he was young it was assumed it was croup. I have horrible memories of holding him in the middle of the night on our porch hoping fresh air would help, or steam from the shower. Nothing every helped. Then they started him on inhalers for asthma and the inhalers actually made him feel worse. It was such a nightmare.

        • #19707
          Jen Cueva
          Moderator

          I certainly can understand why at his age they thought it was croup. I hate that he suffered from those dry cough spells as such a young kid. I’ve cracked ribs coughing.

          As you mention, before my PH diagnosis, I was prescribed inhalers to help. I used them a few times and they made things worse for me. For me, the inhalers caused an increase in lightheadedness, palpitations, and tachycardia (rapid heart rate). The inhalers also caused an increase in cough and dry mouth. Of course, they were thinking I had something more like asthma, but they were wrong.

    • #19744
      Brittany Foster
      Keymaster

      I get a cough but I’m not sure if it is related to my PH or not. I feel like a chronic cough can be so difficult for the doctors to diagnose. For me, it is a combination of having to catch my breath because of restrictive lungs, having obstruction going on, and just inflammation from not being able to expel a hard cough and get out the mucus well enough. It always sounds like that “barking cough” but usually the lung sounds are okay and wouldn’t put up any red flags for pneumonia. It is hard to treat coughs though, especially when the underlying cause is unknown. It’s easy to treat the symptom and just mask it with cough meds, steroids, inhalers, etc.

      • #19783
        Colleen Steele
        Keymaster

        So true Brittany. Honestly, we never blamed the doctors for thinking croup. I remember researching it and thinking, yup, sounds like croup to me. However, when it wouldn’t go away and a lot of time passed that’s when we said, “This is NOT croup.” Then of course it switched to asthma. That made some sense to me too because my asthma is a cough. Then things got worse and you know the rest. That barking cough that you have sounds like my son’s cough. I think it’s the body’s way of trying to kick start the lungs. That’s my medical opinion. LOL.

        • #19792
          Brittany Foster
          Keymaster

          LOL I trust your “medical opinion” Colleen. I think that it probably is something to do with the body’s response to just the stress that the lungs are under which is why people cough involuntarily when they overwork themselves or people cough after running for awhile . I know when I played ice hockey so many of the girls would be coughing during the drills and didn’t necessarily have a lung condition or asthma! So you can imagine the stress that our bodies were under at the time. No wonder why we are always coughing

        • #19923
          Jen Cueva
          Moderator

          Lol, @colleensteele, I love it! ”my medical opinion”. I’m with Brittany, your ” medical opinion” makes sense.

    • #19749
      Janet Barry
      Participant

      Jen, I too have horseness especially if I haven’t been talking. Does anyone have a problem with your voice fading
      out while speaking. I read at my church services and this can cause a great deal of trouble.

      • This reply was modified 10 months, 1 week ago by Janet Barry.
      • #19751
        Brittany Foster
        Keymaster

        Janet,
        My voice definitely does crack and fade and is more raspy the more I talk without my oxygen on. before the surgery I had that relieved some compression off the esophagus it was a lot worse with the raspy voice . Sometimes some of my doctors would say that this can also be due to acid reflux. Have you ever been tested for reflux or told that you have GERD?

      • #19785
        Colleen Steele
        Keymaster

        Janet, Brittany makes a good point about being tested for reflux. Sometimes the symptoms of reflux are not obvious and you might have it without realizing it. But, supplemental oxygen can dry the passages out and cause the raspy voice as well.

    • #19755
      V.R. Peterson
      Participant

      Before my son had his surgery, he was coughing constantly, but it was more of a wet chest cough that sounded like pneumonia. Now that the surgery has greatly reduced his PH pressures, he still occasionally gets a cough from a cold. I have to admit that every time I hear him cough, I panic a bit.

      • #19760
        Brittany Foster
        Keymaster

        @mamabear007 I know that it must be difficult as a parents to watch your child go through so much. Every time I start with a cold my mom makes sure that I am watching my oxygen levels and blood pressure and making notes of how I feel through the day. Usually I will give it a 2 day rule. If it is not better in 2 day or I start to experience more symptoms, I will go to the doctors to get medicine to help treat it and make the cough better. Sometimes I get the wet coughing sounds, especially if I am having a hard time with trapped mucus and not being able to get it all out.

        • #19773
          V.R. Peterson
          Participant

          @brittany-foster, yes, it is difficult to watch my son go through this. However, it would be much harder if he started trying to “protect” me by keeping me out of the loop. He’s finally figured out that a mother can tell, and it does no good to try and hide how he’s feeling. 🙂

      • #19787
        Colleen Steele
        Keymaster

        @mamabear007 as mom’s we really related to what each other has and is going through, don’t we? When my son coughs I stop what I’m doing and look at him. His response is usually, “OMG relax, it was just a fur ball.” LOL.

        • #19797
          V.R. Peterson
          Participant

          Oh @colleensteele, I love your son’s sense of humor!

          I honestly think if my son were to find out he is 100% cured, I would still worry. It’s part of the mother’s DNA.

    • #19759
      Ally
      Participant

      I have a dry cough my doctor just said it was all apart of it. My voice has changed and my doc said that’s from high pressure on the pulmonary arteries too you can actually permanently lose your voice if the pressure damages the vocal chords.

      • #19763
        Brittany Foster
        Keymaster

        Wow Ally,
        So interesting that your doctor made that connection to PH. That would definitely make sense for the symptoms you are telling us about, especially if you are having damage to your vocal cords from this. Is there any way to treat this or help make the voice better? Do cough drops help at all or something to soothe the feeling of irritation with coughing?

    • #19766
      Ally
      Participant

      Yes I usually will drink something with carbonation and suck on a peppermint. I also get choked a lot just regularly eating food they also said it can damage your esophagus also the pressure. It’s like it doesn’t close like it should and I suck food into my lungs. I never had the problem before.

      • #19769
        Brittany Foster
        Keymaster

        Ally,
        I just recently had a surgery to repair my aorta and part of my pulmonary artery that was compressing my trachea causing my breathing problems and coughing and also causing the aspiration (food going back up and into the lungs). This was a HUGE problem for me. I had reflux chest pain almost constantly until I finally go a surgery for it. Have your doctors checked imaging to make sure that your esophagus and airways aren’t being compressed? Besides basic CT scans and MRI, before my surgery I also had a barium swallow study where they could visualize the area of narrowing in my esophagus that would give me that choking feeling.

      • #19788
        Colleen Steele
        Keymaster

        Ally, that is really interesting information and it makes sense. Just a little advice, the peppermint in moderation is ok but take care not to have too many in a day. Peppermint is my absolute favorite flavor and I am addicted to Starbuck’s Peppermint mocha’s, but I have issues with reflux. According to my doctor peppermint is one of the worse things for reflux, that and chocolate…(Um, peppermint mocha’s). I’m sure you don’t go as crazy as I do with the peppermint but since you have problems to begin with I thought I would mention it.

    • #19767
      Ally
      Participant

      Just keeping lung pressure down helps and apparently mine gets very high at times for no reason. At my last heart cath one of my pressure was 90 mmg. It really concerned my doctor and he said my Aorta was distended

    • #19774
      Ally
      Participant

      Thanks Brittany because it is getting a lot worse I even choke on wAter

      • #19781
        Brittany Foster
        Keymaster

        Ally,
        That’s scary for sure ! I was also unable to swalow soft foods, even ice cream which I missed MORE THAN ANYTHING ! lol! The surgery definitely helped me out though and cleared up the airways and trachea. Be sure to ask your doc !

    • #19809
      Ally
      Participant

      Thanks Brittany I will for sure and ice cream is s challenge it like gives me a brain freeze after one bite.

    • #19894
      Janet Barry
      Participant

      Thanks Brittany & Colleen.
      I am taking care of gerd, but I think my problem is more than just that. I still need to speak with my pulmonologist. The gerd was dx by my ENT.
      We’ll see.
      God bless all on this site.

      • This reply was modified 10 months, 1 week ago by Janet Barry.
      • #19897
        Brittany Foster
        Keymaster

        Janet,
        Please make sure they work to get to the bottom of what might be CAUSING your GERD. Often reflux is just a symptom of a bigger problem. For me, it was a vascular ring which is an abnormality in the way my aorta was positioned that I had since birth. Over the years it caused so much scarring to the point where my esophagus started completely closing off and I wasn’t able to hold any food down by mouth without vomiting it up. Do you ever regurgitate what you eat? This anomaly of my aorta was also compressing my trachea leading to cough, breathing difficulty, and hoarseness of the voice . What I’m basically saying is make sure they check into the underlying cause and advocate for testing like a barium swallow study or upper GI study so they can take a closer look at the mechanism behind why you are having reflux and maybe they can pinpoint further what is going on.

    • #22798
      Sheriden
      Participant

      This is so helpful for me! I have had the most strange cough, in addition to my productive lung phlegm coughs.

      For two+ months, as soon as I sat up in bed I started coughing for anywhere from 15 minutes to an hour. My nose would start running after about the first 5 minutes. This had gotten better in the mornings, but I still have these episodes that appear to be non- productive coughs up to 4 times a day. I cough so hard, the valve that keeps food in the stomach flops upward. I can feel it and hear it. This has caused me to throw up only 2 or 3 times, but I have swallowed back stuff (non-burning) many, many times.

      I have told my pulmonologist this and all she did was do a referral to an allergist (scheduled for March 2nd).
      It was never suggested that this was a symptom of PH! OMG!

      I will bring this up the next time I see her.

    • #22802
      Jimi Mcintosh
      Participant

      Dry cough, that is somewhat productive, seldom able to produce anything. Especially bad on high humidity days, rooms with multiple perfumes. Very alarming to other people, “getting a t-shirt that says I am not contagious, just have PAH”.
      But with asthma, bronchitis and respiratory distress, it could be caused by anyone or all of them. I am still coughing 6 weeks after an upper respiratory infection and treatment

    • #22810
      Brittany Foster
      Keymaster

      @sheridend like you said, this is a good idea to bring this up to your doctor at the next visit. Sometimes it is the constriction that is happening the makes us cough and is like a reflux reaction. Other times like you mentioned with things coming up your valve and having to vomit, the cough could be caused by GERD like gastric reflux or esophogeal reflux. Sometimes these conditions can be worsened in those with PH and lung conditions too and can contribute to shortness of breath or food getting stuck in the windpipe or bronchial tubes etc. Have you been seen by an ENT doctor or a GI doc for reflux at all or your symptoms of regurgitation?

    • #22830
      Sheriden
      Participant

      Hey, Brittany. My pulmonologist has only referred me to an allergist. I have reported the coughing and flap flipping open and the couple of times it actually made me regurgitate to both my pulmonologist and her PA. Neither of them has mentioned an ENT or GI doc. They only keep asking if I experience heartburn, which I do not. You are giving me great questions to ask. I fired the primary I met locally and am still looking for a new one. She was the one that referred me to a nutritionist.

    • #22860
      Denise K Thompson
      Participant

      Yes, dry cough, especially with chest tightness, but wanted to comment on horseness.
      Steroid inhaler is the main cause of my horseness. I have severe gerd also, but had to go off my steroid inhaler for part of this month because of insurance mix up & my voice, that was sounding frail & so nonexistent that my voice remote couldn’t understand me, came back to near normal. I love to sing & lost it feeling I’d never get it back. I start the inhaler again tomorrow. Good by voice.

    • #22867
      Brittany Foster
      Keymaster

      @dinky1952 I am so sorry to hear that the coughing and the hoarseness is making you lose your voice. My voice gets really raspy and hoarse when my oxygen levels are low. I think this might have to do with the constriction that I feel in my throat and chest when my oxygen levels drop too. Do you notice a difference in your oxygen levels and the change of your voice?

    • #22875
      Colleen Steele
      Keymaster

      @dinky1952 my son’s cough was also worsened by chest tightness and the horseness he experienced was often connected to his oxygen levels. I’m guessing you have experienced the same and adding the steroid inhaler enhances the problem. Have you discussed with your doctor a more gentler option, if there is any? I’m sorry you are dealing with this.

    • #22879
      Brittany Foster
      Keymaster

      @colleensteele something that I noticed with this too is that when I put my oxygen up, the voice and the hoarseness and barky part of the cough seems to get better!

    • #22880
      Jennifer Foster
      Participant

      @colleensteele Britt was always diagnosed with the croup cough for the first few years of her life. She was just given antibiotics and usually hospitalized in a crib with a tent looking thing over it that brought in humid air. Not sure what the tent was called. Was your son put in that too?

    • #22887
      Colleen Steele
      Keymaster

      @jenniferfoster my son was never placed in the tent but I do know what you are talking about. Cullen was healthy until he became symptomatic at age 6. Every time I took him to the doctor I was told he had croup. Nothing ever helped of course because it turned out it wasn’t croup but PH. He would have horrible attacks in the middle of the night and having this nagging feeling that his doctor’s were missing something.

      Do you think it really was croup that Britt had or a symptom of PH or another condition?

    • #22889
      Nancy McSweeney
      Participant

      I have occasional coughing spells, but am also plagued with hoarseness – that was one of the reasons I retired. I was an executive secretary and used the phone a lot.

    • #22890
      Denise K Thompson
      Participant

      Brittany Foster, I haven’t connected my o2 sats with loss of voice, although I will compare now.
      Colleen Steele, I asked my doc if I could go off the steroid inhaler, due to voice & he won’t let me. Having been off it these past 2 weeks because of ins interruption, I’m lulled into thinking I’m better because I sound better. A trick of the brain, but it’s worked to keep me motivated to spend time with my sisters during this visit. I guess the inhaler helps slow down interstitial development, for those with connective tissue disease, that may have caused their ph.

    • #22893
      Denise K Thompson
      Participant

      Yey, my link is now working to connect me to forum discussions through email comment notifications. Whoever fixed this, thanks a bunch.

    • #22894
      Nancy McSweeney
      Participant

      Colleen – I do find that when I am short of breath that it is difficult to talk. That was one of the first signs of PH, although it was diagnosed as asthma initially. That medication, of course, did not work. I really find this forum helpful. To discover that so many others have hoarseness and acid reflux problems. I thought it was only me.

    • #22895
      Aunt Lizzie
      Participant

      Hi Everyone – I have been having trouble with a ‘tickly’ dry cough for ages. A sip of water would stop it, then, I developed oral thrush and had Fungilin (amphotericin) prescribed for the thrush. Guess what? The cough’s gone. The thrush was probably caused by a steroid inhaler which I hate and do not believe does anything for me. I always rinsed well after using it, but still succumbed. Just thought I’d mention this as a possibility. As to remedies for coughing fits that just won’t stop – don’t know if you have these in North America, but has anyone tried “Fishermen’s Friend” lozenges – vile things but they really work. Stay well – kof kof

    • #22899
      Brittany Foster
      Keymaster

      @nancy-mcsweeney that’s definitely one of the great things about the forums is that you can find so many others with similar symptoms and side effects. Even if the doctors don’t necessarily always have an explanation for what may be going on, at least there is some comfort in knowing that others are going through the same things too (as much as we don’t want to see others hurting too). But it has definitely opened my eyes up to how similar we all are even if our reason for diagnosis or underlying conditions are different.

    • #22898
      Carol alexander
      Participant

      Yes yes yes I cough sometimes it’s dry and most of the time it’s because of mucus.i drink a lot of water sometimes it helps also mints will help.

    • #22901
      Brittany Foster
      Keymaster

      @carol-alexander I find that the mints help too. Especially if there is a lot of congestion and mucus like you said ! The stronger the mint the more it clears out those sinuses. That and hot sauce too or something spicy!

    • #22904
      Jennifer Foster
      Participant

      The croup did clear up with some medication and treatments. Seemed like as she hit a certain age it went away . But for the last 8 years or so she had more of symptoms. But when she was coughing as a baby it was prior to her heart surgery to repair VSD

    • #22907
      Aunt Lizzie
      Participant

      Colleen, I just checked my packet of Fisherman’s Friend cough lozenges and find they’re made in England. I buy them at Pharmacies in Australia. Their website is http://www.fishermansfriend.com. The main ingredients are liquorice, menthol and eucalyptus. Could be helpful if you are able to get them somewhere or on-line. Cheers.

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