Cough Variant Asthma -- No Improvement? Quality of Life Sucks

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Tserisa
New Member


Date Joined Feb 2014
Total Posts : 4
   Posted 2/3/2014 9:31 PM (GMT -6)   
I have what is diagnosed as cough variant asthma, with perhaps some hypersensitivity to Aspergillus flavus. I do not have wheezing, just a very severe, frequent, disabling cough.

Summer of 2012, I developed a cough. I thought it was a cold, and thought nothing of it, though it was sudden and bad. However, it didn't go away, and after a trip to Seattle (I am from Portland, OR), I ended up in the ER because of how bad it was, unable to catch my breath from coughing and wretching. After listening to my lungs and a quick assessment it was called "bronchitis", and I was giving antibiotics and an inhaler.

However, symptoms hadn't improved after the full course. After multiple doctor appointments later, I was told it was "post nasal drip" (I do not have a runny nose) or "allergies" or numerous other things. I told a substitute doctor, "This is really bad, I can't even walk up stairs anymore," and he said, "What do you want me to do about it?"

Finally however, my regular doctor started taking it seriously, and a year later, I was given a diagnosis of asthma.

My new doctor gave me a referral to a pulmonologist. He told me it is cough variant asthma. My lung function tests (spirometry) were "normal". My diagnosis of cough variant asthma came after this test. I looked it up online and apparently you can have a normal spirometry test and still have CVA? Is this true? I have not had a methacholine challenge. I have had a chest x-ray. There is no scarring.

The pulmonologist did a blood test for all allergies but not a scratch test. He also did a hypersensitivity pneumonitis panel for birds and farmer's lung (my mom, who has since passed, had HP -- bird fancier's lung). According to the blood test I have ABSOLUTELY ZERO allergies. I showed up as sensitive to Aspergillus flavus on the Farmer's Lung hypersensitivity pneumonitis panel. He did not seem worried about this and said it was not "dangerous" for me to go to the barn or be around the hay that this mold grows on, just uncomfortable. I don't know how accurate the blood test is. All my life I've been told this or that is the result of allergies when I went to the doctor, and now I'm being told I'm not allergic to anything.

I am on:

  • Qvar (beclomethasone dipropionate) inhaler twice a day
  • Singulair (montelukast) once a day
  • Claritin (loratadine) once a day
  • Proair (albuterol sulfate) as needed


I was on Advair instead of Qvar for a while but I couldn't stand the "texture" and it made me gag, and it didn't seem to be making a difference, so the doctor switched me back to Qvar.

The pulmonologist prescribed these meds, had a one month follow up after, and then said, "See you in one year."

I have Medicaid/Medicare.

However, despite these medications, I still have terribly disabling symptoms. My life has all but stopped. I know there are athletes with asthma. I can hardly even cook my own dinner anymore. It took me two days to put away my clean laundry. If I walk outside and it's cold, I immediately have an attack. I use a scarf over my face (and my sister is even making me special ones with elastic to hold them on) but it only helps a little. Even when it's warm, I can only exert myself a little before I'm coughing.

On Saturday night, my partner's mother had a stroke. We parked in the parking garage at the hospital, and made our way down to the door -- and found that entrance to the hospital was closed. Walking to the other door to the hospital, I was coughing so hard, I threw up in the grass twice, and had to stop and rest several times. My family had to wait for me to stagger after them, coughing and catching my breath. When I finally got in, security was suspicious that I was sick with something like the flu (which I totally understand!) and was hesitant to give me a visitor's pass into the hospital until my partner assured them it was just the cold air setting off my asthma!

I cry when I get some place and they have stairs, and no elevators.

My partner's family gave us a bunch of money to completely remodel the house for asthma. We ripped up all the carpets, and got rid of all the soft furniture and blinds. We put down vinyl flooring. This has made a huge difference with me being able to at least live in the house, wow. But I am still WORTHLESS, I can hardly do chores anymore. I feel horrible. Things that used to be my job (laundry, cat boxes) are too dusty for me now. The littlest amount of dust sets me off. I worry everyone's going to get so tired of me.

I can't keep up with anyone -- I slow them down; I can't go out, sometimes I just don't feel up to the battle; my body hurts all over from coughing all the time; I feel gross and embarrassed from coughing and throwing up in public and having petechiae around my eyes, people treat me like I have the plague; I'm tired and worn out, physically from the coughing.

I just want to know, is it possible that my doctors are overlooking something? Could this be something else? Or is there a treatment option we're not looking at? Or are there any tips or tricks or quality of life advice you can give me to make my day to day life better?

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 2/4/2014 2:12 PM (GMT -6)   
Do you have or live near a teaching hospital, maybe see if you can get help from a teaching hospital. I have asthma and get good peak flows, I've had pneumonia 4 times in my life with the last time in 2010 each time my lungs sounded completely normal. It took a chest x-ray each time to show I had pneumonia. I was coughing my head off and broke 2 ribs in 2010 because of it. There is a CVA and you might also have acid reflux asthma and you could possibly benefit with a stomach medication added into the mix...
I have acid reflux asthma and literally cannot lye down flat without coughing...they had me lye flat after a spinal tap last year and I completely went into an asthma flair but I had a nebulizer orders which did help...However, because of the asthma flair I also ended up needing two spinal blood patches for spinal headache...so many complications...Try getting into a doctor and or a teaching hospital until they listen to you...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Tserisa
New Member


Date Joined Feb 2014
Total Posts : 4
   Posted 2/4/2014 2:27 PM (GMT -6)   
Chartreux: I am already on Prilosec, thank you so much for that suggestion. I didn't realize until I came to this site that acid reflux could cause asthma or make it worse! One of my triggers IS lying on my back. I actually am on the prilosec from a side effect because of another medication. Maybe I should list my other medications:

Celexa (citalopram) for depression, OCD, agoraphobia (well managed at this point)
Topamax (topiramate) for chronic daily migraine (since I was 6)
Imitrex (sumatriptan) for migraine
Supplements: Magnesium, CoQ10 for migraine
Prilosec (omeprazole) for acid reflux (side effect of the topiramate)

Is there a better medication than Prilosec? Should I bring this up with my pulmonologist?

When the cough first started, I worried it was one of my other medications causing it. I have gone off the topiramate multiple times, worried it was causing it. It has not affected the cough *that I can tell*; however I am so miserable from migraines when I am off it, I don't know if that's just wishful thinking.

I think the nearest teaching hospital is OHSU, I just don't know how one goes about going there or works it out with insurance so I would have to figure that out, and I'm not very good with the red tape stuff. I will see what I can do.

Thank you SO much for your reply! It means a lot to me, I have felt so lost and alone.

I am so sorry to hear what you've gone through with this, breaking ribs is exactly the sort of thing it feels like I am constantly going to do, and that sounds horrific, and I had to have an MRI and I cried constantly going into it because of the thought of lying still on my back! So the thought of your spinal tap I know exactly how hard that must've been but worse because of *spinal tap* which is so nasty. I'm so sorry. :(

kazbern
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Date Joined May 2010
Total Posts : 8384
   Posted 2/4/2014 2:57 PM (GMT -6)   
Tserisa, just wanted to add a suggestion that you consider a different maintenance inhaler. It seems that you are not getting relief from Qvar. I use pulmicort and it works well for me. I also use cetirizine over clarinex - you might try switching antihistamines to see if that makes a difference.

Lastly, have you used any sinus lavage? Try the NeilMed saline sinus lavage for a few days to see if it helps clear up any irritation from post nasal drip.
*******************
50 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (3g/day)generic Colazal (96 pills/day), Sulfazine (1.5 g/day), Prevacid, folic acid, vit. D (2K iu), flax seed oil (2 tsp/day), psyllium (1/2T daily), mesalamine enema as needed. Gluten free as of 5/30/11. Colonoscopy found no evidence of inflammation on 8/16/1

Tserisa
New Member


Date Joined Feb 2014
Total Posts : 4
   Posted 2/4/2014 3:34 PM (GMT -6)   
kazbern: Thank you very much. This is very helpful. I will try the cetirizine immediately as that is OTC -- I think I've been on the Claritin long enough to know it's not doing anything palpable -- and I can try the sinus lavage as well. I will talk to my doctor about a different maintenance inhaler.

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/4/2014 5:44 PM (GMT -6)   
Your history sounds spot on exactly like mine. My allergy tests are also completely negative, and I have been diagnosed with "non-IGE mediated allergies." Apparently this is relatively common in people with autoimmune problems, which I have. It isn't caused by the classic immune system response most people have, but by the reaction of a different part of the immune system. Since allergy desensitization shots are not useful, the only thing is symptomatic treatment. I react any time there are a lot of particulates in the air - whether dust, smoke, pollen or whatever. I also react to very cold air.

I might never have been diagnosed if my PCP hadn't just happened to hear a slight wheeze one time - it was never heard before or since, but that put her on the track of asthma. I worked with a really good allergist, going through the antihistamines one at a time. The one that finally helped me was Zyrtec, taken in conjunction with Advair twice a day. I do have an albuterol rescue inhaler for emergencies, but use it very rarely.

I'm bad about trying to get by without the Advair when I'm doing well, but after fifteen years I finally learned that the coughing starts to show up within a few days every time, so I don't do that now. I take it every day.

Hope you find the combination that works for you soon.
Thyroid forum moderator

Ulcerative colitis since 2001 in 7th year of remission with Remicade.
Inflammatory osteoarthritis; osteonecrosis from steroids
Grave's disease treated with radioactive iodine and now on Levothyroxine.
Type II diabetes induced by steroids.
Eczema, darn it!

Tserisa
New Member


Date Joined Feb 2014
Total Posts : 4
   Posted 2/4/2014 9:06 PM (GMT -6)   
Thank you Judy2!

Autoimmune disorders do run in my family. My mom died of autoimmune hepatitis and was diagnosed with several other autoimmune disorders, but I'm having a difficult time thinking clearly right now to remember, very brainfuzzy and tired. I completely forgot another medication and diagnosis. Sorry, I'm sure many of you are familiar with this, it's just so much to keep track of, I also have Hypersomnia (suspected Narcolepsy but I can't do a MSLT at this time). So I am also on Provigil (modafinil).

I started with Zyrtec today, the only thing I am worried about is the drowsiness, since I react extremely strongly to sedative effects, but if it helps it will be worth it.

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/5/2014 2:07 AM (GMT -6)   
Hopefully it won't make you sleepy once you take it for a while. It never has made me sleepy.
Thyroid forum moderator

Ulcerative colitis since 2001 in 7th year of remission with Remicade.
Inflammatory osteoarthritis; osteonecrosis from steroids
Grave's disease treated with radioactive iodine and now on Levothyroxine.
Type II diabetes induced by steroids.
Eczema, darn it!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 2/7/2014 11:17 AM (GMT -6)   
I'm on protonics for the acid reflux I did not tolerate the prilosec, Zantac helped me for a few years, so it might be worth a change in medications. I use Xopenex as my rescue inhaler but it's not a cheap one and I use asmanex for my daily medication it's a twist inhaler and easier to use...and when I'm really bad I have Xopenex nebulizer treatments at home...My pcp treats me for my asthma...I tried the Advair and it just did not give me any relief, I hated it. A saline nasal spray might help, I tried the neti pot without much success so I wouldn't recommend them.
I have asthma, allergies, RA, Sjogren's, raynauds, acid reflux, fibro, back problems in upper and lower back spinal stenosis, and disc buldges, ect...I try not to list it all...as my signature line says it all...
Yes, Autoimmune can be a cause factor for you as well, so that would be something to ask your doctors about and maybe get bloodwork done...for me it did not help that my mom was a heavy smoker for most of my life...but whats done is done...smoke and cold air are big trigger's...use protection over your face in the winter scarfes help...I think you can go to a teaching hospital just walk in and ask for help...Do not use the emergency side but look for the front receptionist for help.
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

shadethecat
New Member


Date Joined Nov 2010
Total Posts : 4
   Posted 2/16/2014 1:02 AM (GMT -6)   
I have actually had a similar experience. I was placed on prednisone by my asthma Dr 9 yrs ago, still on it. But because of the following I am on the lowest does ever (12.5 mg/day) and I have been able to be more active. The meds that made a huge difference for me were 1) Spriva and 2) tesalon pearls. Spriva is actually more of a COPD med, but it actually helped me from missing work For at least a month every January ( and multiple trips to the ER) to have one attack that sent me to the ER in 1.5 yrs. Tesalon Pearls (which has a generic) is a cough pill that works for my asthma cough.

Now I won't say it will go away but I'm actually hopeful that I can eventually get to a very small dose of prednisone. In case you are wondering here is a list of asthma meds I am on:

Pulmacort Neb 2/day
Spriva 1/day
Dulera 1/day
Prednisone 12.5 mg/daily
during the winter I use Cromolyn Soduim every morning it works well for cold air issues

Other meds because prednisone causes some wicked side effects (weight gain, joint pain, muscle pain, adrenal glad issues, etc):
Diovan (high blood pressure)
Synthroid (low thyroid)
Cymbalta (pain for withdrawal from pred)
Dymista (nasal drip)
Dexilant (GERD)

I hope some of this helps....

Channon
New Member


Date Joined Feb 2014
Total Posts : 5
   Posted 2/16/2014 6:46 PM (GMT -6)   
I completely understand your pain and suffering, isolation and your fears. I too have cough-variant asthma. Though I just learned the "cough-variant asthma" from you, I have a note from my pulmonologist that I carry with me explaining that just because I am not wheezing doesn't mean I am not having a dangerous asthma attack. I have had ER nurses, ER doctors, and emergency response people all argue with me about my condition when I have sought emergency medical care. And, s I am sure you know, it is nearly impossible to talk when you are in the middle of one of these episodes. I also take a lot of similar meds as you, for migraines, depression, anxiety, acid stomach from years of Prozac, and of course, lots for my lung condition. My asthma is occupational, so at least I know why this happened to my body. I had to leave that career and at this point, just can't work at all.

I have to disagree with your doctor about not worrying about that mold. I have been told to avoid anything that exacerbates my condition, which for me is most all chemicals, cleaners and fragrances, plus hand sanitizers, car exhaust, air pollution (I monitor it every day so I know if I can go outside, or even open the windows - perhaps you can try that too?), disinfectants, air fresheners, dust and mold. If it exacerbates your condition at all, it is not really a good idea to be around it. So please be careful with that.

I don't know if you've tried it, but I have had the best success with Symbicort. Advair barely helped and made be blow up like a balloon.

For the last few months, we have been having long bouts of Santa Ana winds blowing all kinds of dust and pollution out to the coasts. Even though we live only a few dozens yards from the sea and are shielded by tall hills, they have made me completely worthless. Like you, I can hardly prepare a meal, scoop a litter box (never could fill it, but could at least scoop), put away laundry. For the last few days I haven't even been able to bend over or reach up. I can't sleep on my side because it closes my chest and causes too much pain. I can't sleep on my back because that a trigger just like you. the pain just won't go away. Have you had pain in your chest not associated with coughing? I used to only get it after serious bouts, but now it is just ever-present (in the same place as always). It woke me up in the early morning hours almost a week ago and won't stop. ugh.

I hope some of this will help you. I am so sorry you have to go through this. I have never met anyone who has symptoms like mine and it is very isolating. Most doctors don't even know what to make of me. You must get similar reactions from people. the worst is being treated like a leper in public. but at least I can part a crowd and move easily ;-)

I am new here and am so grateful that I found you Tserisa. It's like it was time for us to find each other!

Take care and I hope to hear more from you.

Channon

Channon
New Member


Date Joined Feb 2014
Total Posts : 5
   Posted 2/16/2014 6:49 PM (GMT -6)   
Oh, I am also using my nebulizer with Ipratropium Bromide & Albuterol Sulfate inhalation solution 2 -4 times a day, per doctors advice. If you don't yet have one, I recommend asking for one. It helps far more than rescue inhalers and last longer.

Channon
New Member


Date Joined Feb 2014
Total Posts : 5
   Posted 2/16/2014 6:59 PM (GMT -6)   
I see that a lot of people are talking about taking allergy meds to help with the asthma. Tserisa since you tested negative for allergies, as did I, I was told to take the medication at night. I take Singulair. They now even recommend taking it at night, just before you get in bed, to control asthma.

I have insomia, so I take some meds for that. I invested in an adjustable bed, so that I can sleep more upright, which helps with the coughing spells. before that, I just used a sturdy husband pillow with a few more pillows propped against it.

Just more ideas for you....

I too started with a cough, back in 2007, so I have been experimenting for a long time. I even had to move to SoCal near the ocean for the salt air and the moderate temperatures. Have you tried a Himilayan Salt Inhaler? I used that until I could get to the ocean.

Hope I am not overwhelming you with all this!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 2/17/2014 12:12 PM (GMT -6)   
Channon, I have an adjustable bed as well and it's wonderful, I can sleep so much better, but tserisa might not be able to afford that. However, Tserisa you could find some blocks to put under the head of you bed to elevate it at night to help with sleeping...Walmart has bed block if you can afford those...they can help along with many pillows...keep elevated at night...
Only draw back is my hubby cannot sleep with me at the height I need to have my bedside...Legget and Platt makes these and your doctor should be able to write a script to get it tax free for medical...I had scripts from 2 doctors...all you need is one...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Joan M
Veteran Member


Date Joined Jan 2006
Total Posts : 2052
   Posted 3/1/2014 5:48 PM (GMT -6)   
After the use of any inhaler, you should rinse your mouth out...I know this is very inconvenient. At the very least, you should drink water, ice tea or something to get the stuff out of your throat.

I know this might sound heartless, but can you keep the cat out of your bedroom?

Sometimes I feel very discouraged with asthma, allergies, arthritis and bad feet. Am allergic to drugs too which is very bad.

It is best to post on healing well sometimes rather than talk about your problems to others. As far as being slow, that should not concern anybody. We are allowed to be slow in our activities especially since doctors can not seem to help us.

My best wishes, heaven bless us all.

comealongway
New Member


Date Joined Oct 2013
Total Posts : 12
   Posted 3/1/2014 10:38 PM (GMT -6)   
Yup, you're not alone. I don't have cough-variant asthma, but I do know what it is like to feel totally useless, to sit indoors all winter...I've lived by the minute before (literally), all because the meds I was on weren't doing me any good. I've had pneumonia more times than I care to count, and it is almost a guarantee for a hospital stay.
Do see if the Pulmicort will work for you. It is what I take twice a day, and it does fairly well. Also, I switched to Levalbuterol (Xopenex) instead of the albuterol and that made a hugh difference for me. The albuterol would make my heart race, and leave me feeling exhausted after an attack, instead of just providing plain relief.
I'm interested in hearing how the teaching hospital goes....never heard of it before.
Hang in! ;) There are answers...we just have to find them!

Post Edited (comealongway) : 3/1/2014 8:44:46 PM (GMT-7)


mrsmunger
New Member


Date Joined Mar 2014
Total Posts : 1
   Posted 3/24/2014 8:28 PM (GMT -6)   
I had the exact same problems as you describe. I found out that canola oil was the cause of all my problem. I have eliminated canola oil from my diet (which is not easy- it is everywhere) and as a result I have regained the quality of life I had lost. Good luck
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