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New to Asthma Diagnosis and Can’t seem to get stable

Hi,

 I am newly diagnosed with Adult onset (46). I do recall SOB when I would try to kiss my husband like teenagers in love, literally having to stop and catch my breath. And when I get sick I am so short of breath. A few times over the last two  years I recall it would take me an hour to recover after walking to the bathroom when sick with a bug. I never wheeze though except sometimes when I laugh. Get this….I am a nurse. I thought no wheeze meant no asthma. I have allergies galore and the last two March's have seen me on all the OTC meds available plus steroids to get through the hump. This year, despite being on prednisone I had terrible breathing problems and was placed on Symbicort and told to get tested by an allergist. I have 30% improvement on testing and was diagnosed mid April 2016. I am on ProAir PRN, Symbicort, Singulair, Spiriva, Magnesium, Tumeric, Vitamin D, Flonase, Azelastine, Pazeo and Allegra D PRN. I take allergy shots 2 x week.  I am having more frequent acute attacks, Sudden SOB, chest pressure, can't get air out, using abdomen, majorly panicked the first time. I have had three attacks since last Friday – Friday, Saturday and Tuesday. I was given pred shot Saturday and am on a pred pack. Tuesday they started alb nebs. I am doing the nebs  4 x d and it is keeping things at bay. Question, why so severe, sudden and unresponsive to total control? Help!

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  • Melanie Carver

    Hi Gigigibson,

    Sorry to hear about your asthma diagnosis. Welcome to our asthma community – we look forward to getting to know you.

    It sounds like your asthma may be triggered by allergies. Have you looked into ways to reduce your exposure to your triggers? Aside from no laughing   [laughing is my biggest asthma trigger]

    You may want to evaluate your home and your workplace to see if there are ways you're getting exposed to asthma triggers (like allergens).

    You can use our Quick Report Cards:

       

    If you don't mind me asking, what are you allergic to? There may be some small ways you can reduce your exposure. Examples: pollens – learn when they peak and limit your time outside during those peaks. Also, keep your windows closed. Take a shower at night to remove pollen from your head (don't want pollen on your pillow). Remove shoes before entering your house.

    Warm regards~

  • K8sMom2002

    GigiGibson … sorry that you are joining this club, but glad to be of any help I can!

    I'm not a doctor, so please bear that in mind. 

    But I was like you — I was diagnosed with asthma later in life, in my 30s. I, too, thought I didn't wheeze, so I didn't have asthma. 

    The first thing that I've learned to do during bad patches is to call my doctor and let her know that things are going wrong or are not improving. Because what we think of as "just asthma" could be something else. It's hard for me, because I don't like to bug my doctor. 

    But I've learned that I really, really need to follow my plan and to get help if I'm in that yellow zone … so that it doesn't turn into a red zone for me.

    The second thing I've learned — for ME, anyway — is that my lungs take time to get over a really bad asthma flare. I wound up earlier this spring with a bad flare after an upper respiratory infection, and it spiraled into pneumonia. 

    The third thing I've learned (and I'm singing the same song that Mel is above) is to reduce my overall allergy "bucket." By reducing things that trigger my asthma or make my lungs "twitchy," I reduce the frequency of my asthma attacks — which reduces the time I spend getting OVER asthma attacks.

     I do hope you get better soon — and keep us posted on what your doctor says!

  • GigiGibson

    Hi Ladies,

     Thank you so much! I am trying carefully with journals to track triggers. I have exiled my pets I have had long term to the sunroom. We are working on the environment and will install  UV filters on the HVAC and get an air purifier for my bedside. I have used my AC in the car and house since the weather turned, no fresh air. I don't go out to do anything until after 7pm and for the shortest time possible. I am reducing my exposure to any sprays, chemicals, cleansers, etc and have phased into natural detergents. Triggers recently were spicy potato chips, pool chlorine and perfume. I guess I am just trying to see if this sudden persistent asthma is common. The PA also is sending me to a pulmonologist to make sure they have missed nothing.

    Thanks!

  • K8sMom2002

    The journal is an AWESOME idea, Gigi! Also, keep in mind that the weather can be a trigger for flares.

    Here in Georgia where I live, it's super muggy and humid, even first thing in the AM. I find that air hard to breathe … and it makes my already twitchy lungs even twitchier. 

    When the humidity goes down, I find I can tolerate triggers that normally would give me a fit.

    Another thing that gets me through the rough patches is I just keep telling myself, "This is for NOW, not forEVER!" Because eventually my lungs do get better, although after every severe flare, it seems to take longer. 

    When do you see the pulmonologist? I know that in my mom's case (asthma complicated by COPD from smoking many, many years), a good pulmonologist was the key. 

  • Kathy P

    One thing on the pets – just banishing them might not make a lot of difference initially. I'm extremely allergic to cats. When we first bought our home, the previous owners had cats and they mainly were in the room that I set up as my office. I could not breathe! One thing that helped was to use a product that can neutralize the dander/allergen on the carpet and even the walls. I don't know if any of would help w/ the pet dander. I can't remember the name of spray I used and a search is coming up with anything I remember (it was nearly 20 yrs ago now). Dander is "sticky" and hangs around for a long time. Here are more ideas on dealing w/ .

  • GigiGibson

    I have two dogs, 7 pound Pom a poo and 10 pound poodle, both 12.5 years old. We did get a kitten last June who is know a big fluffy cat. I wonder…..

     

    i am am waiting for the Pulmon. Appt. 

  • GigiGibson

    I was tested for several things in April 2016 and yes, cats, dogs, trees, grasses and molds were the top, in reverse order. 

    On a general note, thank you to everyone who welcomed me. It was comforting to know that others have a time overcoming a bad episode. When you read general info about asthma attacks whether online or published it always seems like you take your medicine, even a few times if you need to, then you will recover and go on like nothing happened. For me it seems to affect me for days beyond and for the first 24 hours I am really no good at all, just exhausted. This is what concerned me but it seems to be the norm for some folks. My voice seems to be the first indicator I am needing medication, I get raspy but I am not short of breath. Next I start to get a little mucus at the back of my throat. I can ignore it but it never goes away until I medicate. When SOB sets in I am already in for hours of problems. It's crazy to have to police this down to a science but I think I am getting there. 

    Thanks again.

  • K8sMom2002
    GigiGibson posted:

    It was comforting to know that others have a time overcoming a bad episode. When you read general info about asthma attacks whether online or published it always seems like you take your medicine, even a few times if you need to, then you will recover and go on like nothing happened.

    Oh, man, I WISH it were like that! I always have to tie a knot at the end of my rope and hang on 'til things get better.

    But if they DON'T get better, I know now to contact my doctor sooner rather than later. 

  • Jen

    Hi Gigi,

    Welcome to our forums. . I hope that you can get some good information at your pulmonologist appointment (I used to work the front desk at a pulmonology office many moons ago). You may want to ask them to fill out an action plan for meds – that may help with the onset of triggers and k owing exactly what/when/how to treat. 

    Keep us posted on the appointment. 

  • GigiGibson

    Well I planned to try to do without Nebs today but took my phone air three times and got worse so I did one and after about 45 minutes I feel ok now. I found out the pulmonologist they sent my referral to takes 3-6 months. So, I am asking Doctor friends for alternates and I will see my allergist this afternoon for labs and recommendations. Thanks for checking on me.

  • Jen

    I'm glad you feel ok now. Definitely ask the allergist about how to handle things for the time being.  No sense feeling bad.  Keep us posted on the appt.

  • K8sMom2002

    Can you call the pulmonologist's office and ask to be put on the cancellation wait list? It might mean you have very little heads-up on an appointment, but I've had good luck with that strategy.

    Glad the nebs helped … 

  • Kathy P

    How are you doing? Did the neb help? Did your symptoms come back when it wore off?

    So frustrating when you can't get in to see a specialist in a reasonable time! We've had that happen w/ a number of different things. 

  • GigiGibson

    I saw my allergist today. He changed my symbicort to breo. He drew labs for ige, Cbc and abpa. He will treat me for gerd if these are negative and has a Pulmon friend he can send me to if these things fail. Fingers crossed….

  • K8sMom2002

    Oh, Gigi! I know how it is to wait for answers! Did he say when the test results would be in? And could your allergist hurry up the wait time for you to see the pulmonologist?

  • GigiGibson

    Well,

     I took the Breo last night instead of the Symbicort and did a neb before leaving the house this morning and I have not had to do anything else and it's been 7 hours! I am starting to get the mucus build up so I will do another soon but Boy was it nice to not have to think about my breathing and take any medicine since I arrived. I hope this is the way it will be. My doc said the long acting albuterol in the Breo may really help.

    I don't know how long before the test results will be in.

  • Kathy P

    Wow! That sounds like a great improvement! Do you think it's the changew/ the Breo? Or does that need time to build up?

  • K8sMom2002

    Oh, wow, Gigi! I'm so glad — I know it's great not to have to "think" about breathing for a whole 7 hours! Maybe the nebs will get you over the hump and your lungs will have a chance to settle down and behave themselves. 

    Keep us posted on those test results!

  • GigiGibson

    Today wasn't as successful. Did neb at 6am, had to do proair at 730 and 8. Again at 11 and 1130.   Needed neb again at noon. Had real relief for 3 hours now I feel the mucus starting. ��. I hear it's super hot out. I will leave soon and do a neb soon as I get home. 

  • K8sMom2002

    Gigi! Just when you thought you had things under control … do you have the ability to do a neb during the day if you need it?

    Jen just started another thread about the — it's bothering other folks, too, I guess. The humidity is the kicker for me!

  • Mandy

    Gigi it is so frustrating to go backwards but rest and avoid triggers as much as you can. Rest is so important in this process.  I hope you find the right combo soon. The waiting is taxing but stay positive. I have an overproduction of mucous too so I can empathize on that front. It rattles around in my lungs on a daily basis. I found cutting out dairy products very helpful. Just an idea if you haven't considered it.

  • Jen

    Gigi – I think this weather can be a big trigger. 

    Here's a recent blog post about   It includes some information about air quality, so it's a worthwhile read.

  • Debby

    Gigi, I was diagnosed about 7 weeks ago at 65!  What a surprise and I, too, am a nurse.  I also thought you had to have a wheeze to be an asthmatic!   My initial symptoms were a hoarse cough, raspy voice, short of breath and a tight feeling in my chest.  I was also confused about what an asthma attack was.  When I worked in the ED, I saw severe attacks and thought that was what to expect.  I found out that coughing without relief is actually a mild attack — that is why my Albuterol inhaler stopped the symptoms!  As a nurse, I have learned a lot.  2 weeks after my diagnosis, I caught a head cold (which is rare for me to get one at all) and it went straight to my chest and my life became a circus of events that were unexpected. That was the first time that I did have a wheeze.  My whirlwind  experience included 2 back to back Prednisone tapers, a Z pack, FloVent inhaler plus learning to stay calm and rest. (around working full time!)  It took about 3 weeks to get over the worst part and gave me an appreciation of how things can be if you get sick.  As a nurse, I know where you are coming from — respiratory ailments and medical patients were not my specialty so I was reading everything I could find.  I hope you continue to do well.  I go to a pulmonologist and am in the process of waiting for a new doc to arrive because my other family doc relocated.  I was told to take an antihistamine daily to keep my seasonal allergies under control.  My triggers so far: the hot humid air here in South Carolina, cigarette smoke, inhaling cold air and the floor stripper they use at the hospital.  Looking forward to hearing more about your "journey".  This site has been very helpful and the people very nice!

     

  • GigiGibson

    Hi Debby, nice to meet you too! Isn't it crazy how you think your asthmatic patient feels and how it really feels? We learn our entire career I guess. I have never been one to get chest colds except every few years if that was the going thing with a certain bug. This past January I had a terrible one. Since all this happened to me I am scared to death if cold and flu season. What joys will that hold?  I have always had year round allergies. If I came off Allegra and surfaced and nasal spray I would get a sinus infection. That seems to be well controlled now. I am still seeking my triggers.

    I stayed on top of my Nebs today and ended up jittery.   Now my throat and lungs burn. Side effects I guess? I don't wish this attention seeking disorder on anyone but I am glad to have good company of caring folks.  I'm going to crash now and rest. This four day work week has been a long one. I look forward to comparing notes. My doc said no lab results today. ��

  • K8sMom2002

    Debby and Gigi, would you care to share your path to diagnosis? What triggered you going to the doctor and getting that initial news?

    I ask because it was a "cold" or a "bug" that I thought I was having a tough time just getting over that brought me to an exam table to hear THAT news.

    Gigi, feeling jittery and migraines are the reasons I really dread having to use either my inhaler or a nebulizer. I've found that if I can "walk it off," I'll burn up some of that jitteriness. I just try to allow myself a little time for me to do SOME sort of movement to help me.

    And also, my tolerance level must have gone up over the years because I don't find myself as jittery or having as many instant migraines these days. 

    Bummer on having to wait another weekend for lab results! Is there a patient portal you could log into? Sometimes they're posted as soon as they're done, rather than having to wait for the doctor to interpret. Sometimes they have to be "released" by the doctor before they go to your patient portal. 

  • Debby

    K8SMOM2002, It odd but the diagnosis of asthma makes you look to hindsight, realizing that you may have had it and no one knew.  Last December, the day before Christmas Eve, I was diagnosed with sinusitis but it was different because I had a barky cough and my chest was tight, like I could not take a deep breath.  Chest x-ray was normal, EKG ruled out anything cardiac so my doc thought it was also bronchitis. She prescribed the usual things like an antibiotic but she added an Albuterol inhaler. I had never used an inhaler and a prescription for Prednisone. She said, if I still didn't feel well on Christmas to start the Prednisone. I had a follow-up appointment a couple days after Christmas. (Of course the ER is always an option too). Long story short — follow-up appointment, some improvement but the Albuterol worked and it scared me because I knew what it could possibly mean.  After about 3 weeks, I improved.  In April, I saw her for a regular follow-up and told her that I still had the cough intermittently, could not finish a full sentence when talking and walking in the hallways at work and still had some chest tightness, like I could not take a full deep breath. She referred my to a pulmonologist because she suspected asthma but maybe it was chronic bronchitis.  I had all the pulmonary functions done and was diagnoses with mild intermittent asthma. By this time my absolute wonderful family med doc left her office to relocate. Then my last email, "kicks in at this point", within 3 weeks, I got a head cold (in June) that went into my chest and I rapidly learned about rescue inhalers versus maintenance inhalers, flow peak meters, and the the importance of avoiding (and identifying) triggers.  I am looking forward to my new doc's arrival because with a cold hitting me that hard, am I still mild intermittent?  I have been using the FloVent twice a day for the last 4 weeks (I am afraid to stop) and I use the Ventolin (Albuterol) at least once if not 3 times a day, so I definitely need an action plan and someone to guide me.  SO that is my asthma diagnosis story!!  Sorry to be so detailed. Still have lots of questions but I have learned already to chill and don't get all anxious when it start to happen.  I don't get as jumpy with the Albuterol, like I did in the beginning, is that normal?  Being able to read and talk to others here, has been a blessing and reassuring.  

    Debby

  • Kathy P

    I was able look back and realized I had issues all along that nobody ever put a name on. Which meant it was not treated. All those times we had to run the track in gym class and I'd be struggling to breathe and doubled over coughing….yeah probably asthma!The scary part is that untreated asthma can cause lung damage. My bro was recently diagnosed with COPD and my suspicion is that he had undiagnosed and untreated allergic asthma for years.

  • GigiGibson

    Hey guys. Every night I would have to lie on the bed to brush my teeth bc I would be so wore out by the time I finished my shower I couldn't breathe good while brushing and I had to recline. Whenever I would get sick I would be so very short of breath. Worst symptom. I had good work outs and really bad ones where I'd feel like I was gonna pass out. A lot. Every night I would wake with my throat completely dry and closing off. Big dry hacking cough every night for like two years. Always 3 bottles of water there. Chug chug every night. Finally was doing sore throat spray to try to numb the reflex, lol. I thought all this was normal. Don't laugh. I was the frog in the pot. Like I said before I have allergies. March 2015 and 2016 were horrendous. This year I had just barely gotten over the worst bug (chest bug) that went through the office in January. Early March I was on allegra24 sudafed 120, dymista, allergy eye drops, Benadryl at night and singular. My allergies were still horrible. I was placed on prednisone and a week later sent her a portal message that I could not breathe well and was up coughing all night. She put me on symbicort and ordered an allergist consult. That was done late April. Biggest allergies are molds, grasses,Trees and animals. Started shots twice a week. Used albuterol now prn. Loved the relief at bath and bed time now that I knew what a true deep breath was. Had my first "attack early June. Several attacks and med changes later here I am. Shots are on hold. 

  • K8sMom2002

    Debby and Kathy P, your stories sound a lot like mine!

    Debby, I'm not sure if it's "normal" not to get as jumpy with the albuterol, but I'll take it. 

    And your question about whether it's still mild intermittent … maybe that's a good general question for AAFA's : Just what IS the criteria for the different types of asthma? 

    Gigi, love your "frog in the pot" comparison … it's so true. You just don't realize how bad you've been feeling until you feel better!

    Are you able to brush your teeth at the sink now??

  • GigiGibson

    No! Lol. I have had a two great days. Perhaps the breo and resting did the trick. Yay! Fingers crossed

  • Jen

    Debby  - what have you been using for your daily antihistamine?

  • Debby

    Zyrtec(generic) but I have to be careful because it makes me drowsy. Used Clariton for years but must have built up a tolerance because it is no longer effective. 

  • Jen

    I also used claritin for years, but then it stopped being effective.  I've probably used zyrtec (also generic  - 3 of us take it, so we get it in bulk at Sam's Club) for 10 yrs now.  I take it at night bc of the drowsiness, as does dh.  My daughter takes it in the morning, but it doesn't seem to bother her.  A few years back (6 maybe?), I also started singulair (after a bad bout of bronchitis).  I have stayed on that bc it seems to work well in conjunction w the zyrtec.  Are you ok if you take the zyrtec at night?

  • K8sMom2002

    DD takes Zyrtec at night … it never seems to make her drowsy anymore, but when she first started, it did. I kind of liked that, because she was a toddler and she'd been going through some rough patches of sleep at night.  

    I really should start on a daily antihistamine. I know it would help. But I keep telling myself, "You're making it fine just the way you are." Which is true enough — until suddenly, I'm NOT making it fine. 

  • K8sMom2002

    BTW, I've started a new topic post — nothing about asthma, just some plain silly fun to help us get to know one another better.

    Just follow the link to  and answer the question, then come up with a question of your own!

  • Debby

    Yes, I have to take it then because the drowsiness usually occurs withinthe first few hours and I am asleep or soon to be asleep. Then during theday, I am OK.On Tue, Jul 12, 2016 at 10:11 AM, Asthma and Allergy Foundation of America <support@aafa.org> wrote:

  • GigiGibson

    Funny u should ask. I started with an episode at church, inhaler not effective x2, took a neb at 1230 now I'm waiting for 30 more minutes to pass so I can have another. I'm wiped out. Why does this leave you feeling depleted? I feel like I've been exercising for hours. I literally can't hold my head up. I felt better and went and put together a big kale salad for dinner, made dressing and now I'm exhausted again.  Hopefully if I am a good girl and just rest I will be back to normal tomorrow. 

    We have been in air quality alert for ozone for three days now. It's unbearable outside. I wonder if just being outside-house to car to church did it. Friday windex did it. 

    How are nemo and Becky?

  • Kathy P

    Oh no! And boo on the bad air quality days! Hope you can get thingscalmed down again.