Explaining Nontypical Asthma

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madisun
Regular Member


Date Joined Mar 2012
Total Posts : 151
   Posted 7/27/2012 6:47 AM (GMT -6)   

My asthma is weird, I very rarely wheeze. I skip straight to the over load of mucus, and my main symptom is a very wet cough.

My lung capacity doesn’t tend to drop suddenly; it will just slowly decrease over the day until I start to wonder why I’m feeling faint. (It used to drop to about 25% over the course of a day and a bit, but now it’s better controlled it generally only drops to 75%)

 

Nothing my body does is normal, so I’ve never really thought about it much. But this week at work I found myself having to defend the fact that I do in fact have asthma, and if I say that I’m in the middle of a mild attack, I’m in the middle of a mild attack.

(Nothing that required medical intervention, but my peak flow reading was down to 65%, my cough had made my chest hurt like you wouldn’t believe, and the cold air sets me off more. As such I REALLY didn’t want to supervise children outside in the cold… but a woman at work virtually called me a liar to my face when I said I had asthma and really shouldn’t be outside, because I wasn’t wheezing… Even though my doctor had told me 3 hours earlier that I wasn’t to go outside in the cold.)

 

So, a two of questions…

Other than having a tantrum, and stapling a doctors letter to this woman’s head, how would you explain asthma without a wheeze? 

 

My paediatrician diagnosed me with Secretetry Asthma (Pronounced like secrete-tree)… But I’m starting to think he made it up as there is zero reference to it anywhere. (No offence to the guy, him making the asthma diagnosis when my GP was in the “no wheze, no asthma” camp saved my life.) Has anyone else heard of this term?


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/27/2012 11:05 AM (GMT -6)   
I jump straight to coughing with my asthma. Then I'll wheeze off and on.

Mine is called Cough Varient Asthma.
Joy

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 7/27/2012 10:01 PM (GMT -6)   
"Doctor I can't breathe. My chest is feeling tight, I keep coughing and feel like I suffocate whilst coughing"
"In certain conditions my breathing becomes laboured making it difficult for me to get enough oxygen"


Perhaps you should see a pulmologist to further diagnose you.
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

madisun
Regular Member


Date Joined Mar 2012
Total Posts : 151
   Posted 7/27/2012 10:05 PM (GMT -6)   
Awesome, thank you. I knew there was a name for it, lol.

My boss has actually booked us all in for an Asthma Awareness course, which is going to be hilarious. He’s saying it’s because he wants us all qualified to handle children with Asthma, but it was mysteriously booked after I had a whinge about being called a liar.
 
 
SmurfyShadow, I've been tested and retested for all sorts of things because most doctors think that there must be somthing else making my asthma manifest like this. My symptoms have come and gone, but they have been the same for 25+ years. It's just that my body has issues with being normal, and likes to create interesting challenges for doctors, lol.

Post Edited (madisun) : 7/27/2012 9:10:30 PM (GMT-6)


SmurfyShadow
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Date Joined Dec 2008
Total Posts : 2386
   Posted 7/27/2012 10:29 PM (GMT -6)   
Cold air triggers me hon. And my body doesn't wanna be normal either! I should swap stories with our bodies haha. You may have an underlying auto immune disease, which wouold be doen with a rheumy.

I'd love to see your labs. Just because the doctor says its normal doesn't mean its normal. It could be just a little low or a little high, just enough to trigger the body to react. For example, with me I get "flu like" symptoms when my white cell count is high. I have my doctor well trained.... I will call him and say "white cells high" he quips "how do you know? where'd you get labs?" I quip "dont you dare make me go in and prove you wrong. I've proved you wrong once with labs" and goes "ok antibiotics are going to walgreens"


Leave it to us to figure out whats wrong ****oo and to think I am only respite and not a doctor hehe
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

madisun
Regular Member


Date Joined Mar 2012
Total Posts : 151
   Posted 7/27/2012 11:05 PM (GMT -6)   

It’s funny you should mention auto immune diseases, I’ve got CFS, Fibro, and there’s a bit of speculation flying around that I’m developing Rheumatoid Arthritis. (Newly developed joint pain, morning stiffness, general feeling differently unwell… No swelling yet, but I’m getting redness which I’ve never had before. My mums also always had symptoms of it, but has always tested negative.)

My lab results are always in the range of “normal” but they’re hinky. They’re just that little bit out of balance, they don’t really respond in the expected way.


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 7/29/2012 8:00 PM (GMT -6)   
Omg that is too funny... I have Fibro and Arthritis and Bursitis LOL


The think about your labs is it may say "normal" range but it could be the higher or lowest normal range. For example, I had "normal" range on my A1C, however, I proved I was a diabetic with a trial run on diabetic medication. My A1C was 6.0 and the "official" range for diabetes was 6.2 (I'm like seriously you idiots lol)

I also have a tumor, and I am in chemotherapy. So I can swap good pain stories like you lolol! *looks down at feet* yep ankles swollen
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

Lu2011
Regular Member


Date Joined Apr 2011
Total Posts : 291
   Posted 7/31/2012 6:52 AM (GMT -6)   
Hi Madisun.
I am the similar as I am fine most of the time and don't have the wheezing.  For me, my asthma is triggered after I get a cold.  Whether it's a mild cold or a full blown head cold, once the cold is gone, i get this tickly cough, and I'll often cough up mucus.  But unless I have a cold, I am fine. (Mind you, having said that, the past week I've had this constant tickle and found I'd get an attack when exercising (i.e. the tickle got worse).
My lab tests always show my airway is less than it should be.
 
Oh, and I also have joint issues (SI joints) and had colitis (surgery to remove colon).  All are apparently related since autoimmune.
 
Do you have an inhaler?  I use advair when I feel the tickle.
Ulcerative Colitis 1988, had colon removed and now jpouch
Now sufer from sacroiliitis and inflammation of piriformis muscle causing sciatica like pain during flare ups. Joints very bad...take celebrex when needed.
Also suffer from asthma (only triggered when I get a cold) and stuffed sinuses.

Post Edited (Lu2011) : 7/31/2012 5:55:42 AM (GMT-6)


MommaKiKi
Regular Member


Date Joined Jul 2012
Total Posts : 137
   Posted 7/31/2012 11:46 AM (GMT -6)   
Your symptoms are the exact same as my 8 year old daughter. We have been back and forth with doctors, 99.9% of them are "no wheeze/no asthma". We had one doctor tell me a few years ago that he didn't want to diagnose her with asthma because it would ruin her medical records. :/ Umm yea, needless to say we walked right out!!

The only one we have found that actually treats her properly is the director of the ER at our local hospital. She doesn't have an office, but welcomes me to bring her in to the ER to see her. :-) In fact.... we were just there this morning, got home 40 minutes ago.

She's on prednisone (15mg liquid) 2 teaspoons twice daily for 9 days, then taper down for another 9 days. Albuterol in the nebulizer every 4 hours.
When she finishes this round of treatment, she will be fine for a few months, then start all over again.
MommaKiKi~Kristie

Loving husband, 2 beautiful kiddos

DX: fms, ra
Meds: I'll just say lots and leave it at that! LOL

madisun
Regular Member


Date Joined Mar 2012
Total Posts : 151
   Posted 8/1/2012 5:49 AM (GMT -6)   
Lu2011 , I’m on Seretide at the moment (triple my normal dose), and 3mg prednisone for the last two days. (I’m a bit grumpy it didn’t make me hyperactive this time.)
MommaKiKi, I once had a doctor prescribe three months’ worth of augmentin duo forte to fix my cough, and refuse to give me a repeat on my bricanyl because he didn’t believe I had asthma without a wheeze… I went on a different preventer (prescribed by another doctor) and the cough had gone in under a week.


The woman at work is still harassing me about my supposed lack of asthma. She saw me cough and go for my puffer today and she said looked at me and said “Oh you’ve got that virus I had, I had a cough for 8 weeks so you’ve only got 5 more weeks to go!” and the laughed at me and walked off.
Then again this afternoon she told me I was wasting my time with my puffer because SHE didn’t need one to get over her cough. I pointed out that’s because she’s not asthmatic, and she rolled her eyes at me and walked off.

I had a bit of a tantrum over it to my boss (the term “*** is her problem,” and a threat to lock her in the cupboard if she did it again may have been used) but other than booking in a professional development there’s not much he can do.

Now I’m not feeling quite so fragile I’m just really angry about it… But there was a point on Monday where I was incredibly close to getting my boss to take me to hospital it was actually quite frightening to know that she not only didn’t believe that I couldn’t breathe, but was openly hostile about it.
What worries me is that I’m the 2IC at work. When my boss is away, I’m in charge and usually I’m working with this woman and one other one that doesn’t speak English very well who takes her lead from the other woman. If it had just been the three of us at work on Monday, and that final round of 4 bricanyl hadn’t have worked… what would have happened? At what point during an attack is she going to decide that I’m not lying and actually get me some help if I’m unable to get it for myself?
Not a happy camper.

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 8/2/2012 2:48 AM (GMT -6)   
Have you tried saying "Ma'm I appreciate your advice on my health, however I'd like to leave it to my doctors. I also do not appreciate how you keep being derogatory towards me, as well as my health. I hate to inform you this is your last chance to treat me with the respect of which I deserve before I file harrassment charges"

If she doesn't stop after that, then do take legal action. I remember one time, some punk kids heard me give my cell number out to someone I haven't seen in a few years. Anyhow, they kept calling me and harrassing me by private number. I finally had it after three hours with it, and told them "Stop this right now, or I am filing harrassment charges on you." They did it again, and I called the cops, who actually was able to see the number by calling my cell company and gave them a friendly call saying I told them to stop and this was their final warning. It only took a police officer to give them an official warning, you may have to do the same - I dont know
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 8/2/2012 2:48 AM (GMT -6)   
Have you tried saying "Ma'm I appreciate your advice on my health, however I'd like to leave it to my doctors. I also do not appreciate how you keep being derogatory towards me, as well as my health. I hate to inform you this is your last chance to treat me with the respect of which I deserve before I file harrassment charges"

If she doesn't stop after that, then do take legal action. I remember one time, some punk kids heard me give my cell number out to someone I haven't seen in a few years. Anyhow, they kept calling me and harrassing me by private number. I finally had it after three hours with it, and told them "Stop this right now, or I am filing harrassment charges on you." They did it again, and I called the cops, who actually was able to see the number by calling my cell company and gave them a friendly call saying I told them to stop and this was their final warning. It only took a police officer to give them an official warning, you may have to do the same - I dont know
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

Lu2011
Regular Member


Date Joined Apr 2011
Total Posts : 291
   Posted 8/2/2012 7:13 AM (GMT -6)   
madisun, I sympathize with you. It's one thing to be suffering with this non stop cough, but another to have to explain and "proove" youfself to colleagues. That's quite rude and insensitive of that lady, and it's really none of her business what you've been diagnosed with. I'm assuming that you don't work in a respitory clinic, nor is this woman your doctor, and so how would she know what your health issue is.
As mentioned, I never have "the wheeze" and i've been diagnosed with asthma, which is triggered with colds or when my sinuses act up. This woman is awful and I'm sorry you have to work daily with someone like this.
Ulcerative Colitis 1988, had colon removed and now jpouch
Now sufer from sacroiliitis and inflammation of piriformis muscle causing sciatica like pain during flare ups. Joints very bad...take celebrex when needed.
Also suffer from asthma (only triggered when I get a cold) and stuffed sinuses.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 5029
   Posted 8/2/2012 11:13 AM (GMT -6)   
Madisun,
Did the doc maybe say non-secretory asthma? There is information on that.

madisun
Regular Member


Date Joined Mar 2012
Total Posts : 151
   Posted 8/2/2012 7:50 PM (GMT -6)   

Did the doc maybe say non-secretory asthma? There is information on that.”

 

It’s defiantly secretory asthma… My appalling spelling may have played a part in not finding much.

I DID find something on hyper-secretory asthma… But it’s Friday, and my Friday brain can’t cope with information, lol. “Hyper Secretory Cough Variant Asthma” is looking like a good label.

 

I’ve had another chat with my GP about it, with a focus on me being able to understand and explain what’s happening, and he was quite helpful. He’d never heard the term, but he mentioned he’s had a few patients with asthma like mine.

He’s way of explaining it was that in a “normal” asthma attack, you get inflammation, wheeze, mucus. With mine I go mucus/inflammation at the same time, or sometimes mucus first. He seems to think it’s the mucus masking the sound of the wheeze, but he said that was just a guess.

He also pointed out that’s why I need to get on top of my asthma BEFORE it kicks off, because the mucus stops the inhalers fully working, which is why I always wind up having to take the bricanyl elixir.

He offered to put it all in a letter, which also enquired about this woman’s medical training… I like this doctor.

 

The woman went on leave yesterday to go skiing, and won’t come back until next week, so hopefully she’ll have forgotten about it when she gets back. (My boss is hoping for her to break a leg, but I’m not that mean, lol.)

I made a formal complaint to my boss about her, and when he talked to her about it she said she was just trying to be supportive, because I’m always so negative about my health.

It’s nice of her to be SO concerned rolleyes


Bailes
New Member


Date Joined Oct 2012
Total Posts : 6
   Posted 10/12/2012 2:28 AM (GMT -6)   
I think I love this forum! I'm now on permanent disability at 38 and have ended my marriage of 10 years because my hubby said he thought I was exaggerating my health status for sympathy. I took him to my doctor who set him straight but that didn't help.

Good luck with the woman but do protect your own health and safety. She doesn't need to support you but she does need to not stand in the way of your safety. Don't let it go until she realizes you have a serious condition. I'll back you up! :)

(oh, and I'm a severe / uncontrollable non-wheezing asthmatic among other things - I wheezed as a kid but my wheezes are often too hard to hear or it just goes too bad too fast past the wheezing) Best of luck.
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