Quick. When you think of someone with asthma what do you picture? What do you hear?
For most people the answer is wheezing. They see someone who always seems to struggle for air a bit or whose breathing is audible a lot of the time. My aunt had that kind of asthma. It was scary stuff. She could go from feeling fine to not feeling fine quickly and listening to her struggle to breathe was painful and when you were familiar with her triggers, you took great pains not to trigger an attack.
But my aunt’s asthma is more complicated for me because, it turns out, that I, too, have asthma, even though I’ve never sounded the way she did. I knew about exercise induced asthma and I knew that wasn’t what I had. Exercise and I have always been on somewhat unfamiliar terms (my current attempt at a 30 day challenge, not withstanding). But I always knew I struggled sometimes to breathe. I would start coughing and I couldn’t stop and I couldn’t seem to catch my breath. It was uncomfortable, but I didn’t think it was life threatening. Life limiting maybe, but not life threatening.
And then, almost ten years ago, it wasn’t so simple anymore. I got sick. Very, very sick. My poor doctor was taxed almost beyond his abilities trying to figure out what was wrong with me. He ran tests; he thought he had an answer. Off to a specialist I would go and they would determine that what he thought wasn’t it. He thought I had polyps in my nose. There’s family history and it seemed logical. Except, upon much closer examination by an ENT, it was determined that I absolutely didn’t. More blood tests and he found RSV. Yeah, that RSV. The one that kills babies and old people. That one.
I was so sick that I ended up taking two weeks leave from teaching — in the middle of a semester. Let me tell you how often that’s done. Yeah, very rarely. But, with his note and sick leave built up, I was able to do it without a loss of income. And still, I was sick afterward. It took another three months of me not getting better and him struggling to figure out the problem before the magic day happened.
I started coughing in the office. The spontaneous, racking cough that would get where I honestly thought I would die before I would stop coughing. The cough where I couldn’t catch my breath, couldn’t speak, couldn’t do anything but cough with tears streaming down my face.
He had been on his way to see another patient when he heard me. He burst into the room, and this was real bursting because I hadn’t even seen the nurse yet, and said, I know what it is.
I’m looking at him like he’s lost his mind and he hands me a rescue inhaler and tells me to breathe squeeze and breathe in. I did. He told me to do it again. I did.
And suddenly, I could breathe. It was like a miracle. It was Albuterol.
He called it non-wheezing asthma and he knew how to treat it. I take two different drugs, carry rescue inhalers on my person at all times, and have a nebulizer in my bedroom (and in my carry on luggage when I go on trips). You’d think it would be a relief to know what it is and how we can manage it, and in many, many ways it is. Now I can explain why some things set me off and make me cough and uncomfortable, and yeah. But, because it doesn’t sound like the asthma my family has known, it’s been hard, at times, for them to accept that it is, in fact, asthma.
At one time, I was advised that I should get full-fledged asthma testing because “it’s not really asthma unless you have those tests.” My doctors have a different point of view. I would not respond so well to the drugs that I take if I didn’t have asthma — in other words, they would have no appreciable affect on my coughing and on my struggles to breathe.
These days non-wheezing asthma has a new name: cough variant asthma. What’s particularly interesting, if you read around on it, is that it is difficult to diagnose because the usual tests for asthma don’t work. In fact, there are really only two ways to diagnose it 1) be lucky enough to have an attack in the doctor’s office, or 2) inhale irritants to trigger an attack in the office. In other words, have an attack to prove that’s what’s going on. So, I guess I got lucky in that I had an attack in the office and my doctor knew what he was hearing.
The really tough part is that because I have it, both of my kids have an increased chance of developing it. The first pediatrician we had didn’t think it was an issue, but our current one asks me every time we bring Ben in if I’ve seen any signs or anything that worries me. Because it’s difficult to diagnose and it does occur in children, the best way to catch it is for parents to be aware that it exists and that it doesn’t behave like typical asthma. So, what do I watch for:
1) Coughing. A dry cough that is completely unproductive. It can sound a bit like barking and a bit ragged. It can also seem uncontrollable, like the kid literally can’t stop coughing. Sometimes the kid may say that their ribs hurt from coughing or talk about a little tickle in the back of his/her throat that seems to be making them cough.
2) Specific things that seem to trigger a cough. My triggers are grass, pollen, cigarette smoke, dust, and perfume. So yeah, I don’t get out much.
Of course, this means when Ben has an unexplained coughing fit, I get a little nervous, but I don’t see the uncontrollable aspect that I associate with my asthma. He seems to be able to get it under control and he doesn’t seem to get breathless. I guess that means so far, so good.
Excuse me, I have to go find an inhaler — the dogs just came in and I’m having a “bad breathing” day.
It’s like we were separated at birth! Ok, not exactly but I do have asthma and have had it all my life. I hate it in movies when the skinny bespectacled kid has to use an inhaler and it’s supposed to be funny. Since I became overweight after having my daughter my asthma has gotten worse. I wheeze, I cough, and just the act of walking a couple of city blocks leaves me so out of breath that people want to take me to the hospital or something! But I HATE Advair and don’t take it. So I just use my Albuterol when I’m wheezy and wait for science to come up with a better alternative… and I also obsess about my daughter having asthma because it is a family affair dating back to my paternal granma, my dad, all 6 of his sisters and all 17 of my cousins and siblings. Yay. Poop. I know asthma is a huge part of the reason I have always shunned sports and physical activity in general even though I like spots and I enjoy things like riding my bike, it’s really difficult and sometimes painful. So I’m sorry you have to suffer through not breathing and such. Need a hug? 🙂
Oh, I’m sorry that you hate Advair. It’s one of my miracle drugs. I don’t think I’d still be here if it weren’t for it. My aunt is, as far as we know, the only member of the family aside from me with it. My weight is not helping either, which is why I’m embarking on this exercise odyssey to solve it. Must say though that the running in the EASports Active may kill me :).
I hadn’t heard of this before, but it seems a very good thing to know about.
I’m not big on the outdoors as I have loads of allergies.
I have the Active, but haven’t mustered the courage for a 30 challenge. I really should consider it. The rollerblading part is quite fun.
Okay, what’s the trick on the running? No matter how quickly I run, it still says I’m going to slow. I’m not keen on doing wind sprints, for obvious reasons, and that’s where I’m going to end up if I’m not careful.
I think it’s really important to be aware of cough-variant asthma. My doctor says I’ve likely had it my whole life and am just extremely lucky that I never had a severe enough attack to cause hospitalization. It’s subtle and tricky, and so different that it’s hard to get a handle on.
I just (this minute) found your blog through a comment you left on Alisa Bow’s Happily Ever After blog. So far, I have only read this post, but I had to comment. I have cough variant asthma, too. I was diagnosed in a similar fashion: my doctor couldn’t seem to help me get through my nth case of bronchitis, and I was coughing in his office, and he handed me an inhaler. Miraculous. Luckily for me, this happened years ago. I’m well controlled at the moment, but during the winter, my life gets complicated as my daily preventative medications (Singulair and Advair) don’t always work as well. Just wanted you to know that you’re not alone. Now, I’m off to read more of your blog.
I’m very well controlled until August thru November and when there are hurricanes. I had my son in August and my daughter in November. Both times my “asthma guy” was freaking out about the timing because, historically, I have my worst attacks and most dependency on nebulizers and inhalers during this time period.
My dailies are Advair and Singulair too. I really appreciate how much better I breathe on them. I’ve forgotten to take Advair a few times and let me tell you the difference is astounding. I can always tell.
I’m glad I’m not alone. It was so tough when I was a kid because no one believed I really had a problem and it was like utter vindication when I was finally diagnosed. But even with that, some family members still felt I should go through regular asthma testing and do peak-flow and all that fun stuff. My guy says that peak flow is utterly useless with this kind of asthma and can only serve to make the insurance companies question whether I have the disease. Just lovely.
The barking cough? I’ve had that since I was a kid. I don’t even remember when it started, but it always came on hard in the winter [especially if I’d been out running around in the cold]. My lungs have never been in great shape, so no one thought anything of it. It was only after I noticed myself wheezing when I was walking to and from work in all types of weather that I realized that I should see a doctor. Diagnosis? Temperature induced asthma. If it gets too hot or cold and I’m out for too long, my lungs rebel. I also get a tightness of chest if I dust [allergic to dust mites], if the pollen count is too high, and if I get really stressed out. I’m lucky enough that I don’t need my rescue inhaler most of the time, and while I’ve tried medication, I haven’t noticed any major change between taking it and not taking it. And, basically, if I can feel it coming on, I can slow down and deal with it.
Interestingly, the cough has gone away considerably since I went gluten-free four years ago. I still get a distant cousin of it every winter, but it’s never the bone-shaking heave it used to be. I think it’s because dropping the gluten has let my system get back to rights for the first time in my life. Rather than my body fighting against things that are supposed to be good for me, it’s actually fighting things that aren’t, and that means I have the resources left over to deal with my asthma more efficiently.
My 5-year-old son was diagnosed with asthma last winter when he actually had that kind of dry, unproductive cough, up to a point that he was short on oxygen. What a scary thing it was! We ended up going to ER (big and costly mistake, as it turned out) but we have learned our lesson. Whenever he gets into coughing spells, we reach for Albuterol. I just hope beyond reason that somehow my kid will outgrow this asthmatic condition…
I developed non-wheezing asthma while at camp as a teenager, but the camp doc said my lungs were clear and that I was probably experiencing a bit of allergic reaction to the great outdoors. For the next forty years, I barked, sighed, and had occasional bronchitis, Not until a bout of life-threatening pneumonia was I finally diagnosed with non-wheezing asthma and copd. I am mostly controlled now, using Albuterol, Singulair, and Symbicort, but a cold almost always becomes pneumonia. How I wish I’d been diagnosed years earlier.
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