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Triggers Everywhere, Wedding on the Way, and an Asthma Newbie

Hi all, 

I apologize for the length of this; I just want to give a full description of what's been going on.

I was diagnosed with asthma a year ago, after a random episode one night. It resolved very quickly, until mid July this year, then WHAM–asthma hit me like a ton of bricks, with an attack during allergy patch testing. I have had recurrent sinusitis and asthma ever since. 

The main problem I'm having is that I am surrounded by triggers, and some of them I cannot escape. I am renting a house on the edge of the woods, and it is replete with mold. Mold is visible on walls in numerous rooms. My landlord won't do a thing about it.

I am getting married in five weeks, and last night I woke with wheezing and panicked, triggering my first real episode in a month or so. I used my nebulizer and was able to get back to sleep within an hour.

We have lined up a new place to live after our wedding, but I am exposed to so many triggers between now and then (we also have cats and high ceilings that trap dust), and I just want to be feeling better for our big day.

I am stressed to the max, so much so that it's hard to meditate sometimes…I also have generalized anxiety disorder. I don't have an action plan or full understanding of my triggers, because my asthma is so new and my allergies are so aggravated that I cannot be patch tested for environmental triggers. I am looking for comfort and strategies to deal with my situation…has anyone else had to live with triggers? How do you deal with the stress of uncontrolled asthma? Can anyone reassure me that I'll be able to have a great time at my wedding and not be worried about my health?

Thanks very much for any and all support and suggestions.

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  • K8sMom2002

    Hugs, hugs, hugs … you have a lot on your plate! 

    First, could you print off a copy of AAFA's brilliant action plan and ask your doc to guide you through it? You may be able to do it via email or over the phone. Knowing what to do when is a big stress reliever for me!

    Second, that stinks about the mold! Could you try …

    • a dehumidifier? Mold can only thrive in humid conditions — indoor humidity should be at 35%. 
    • other strategies in AAFA's ? 
    • AAFA also has a blog post about — and it has a link to a clean-up guide for homeowners and renters. That may help you.
    • getting in touch with your counselor or therapist and asking for help with coping strategies? Anxiety and stress can make asthma worse, so any self-care that works for you in that department (like reaching out for help here! ) is a GOOD thing.

    My mantra for stressful times in my life is this:

    It's for NOW and maybe not forEVER.

    I think you WILL be able to have a great wedding — especially if you continue to do what you're doing — reaching out for help, work on controlling what you can control, doing the self-care that works for you. Asthma can seem unpredictable, but for many people, once you identify triggers and work to reduce them, that can really improve things. 

    I think of it in a "tipping point" sort of way … even if you can't reduce ALL your triggers, if you reduce as many of them as possible even a small amount, it can make a big difference. 

    Congratulations on your wedding AND on getting a new (hopefully trigger-free) home after the Big Day! 

    Edited to add link for mold clean-up blog post – CRR – 913/2018

  • K8sMom2002

    Oh, one more thing … you said …

    mandyg730 posted:

    I don't have an action plan or full understanding of my triggers, because my asthma is so new and my allergies are so aggravated that I cannot be patch tested for environmental triggers.

    I don't think any of us really understood all our triggers … and sometimes they're not going to show up in a patch test anyway. The way I've found most of my triggers is a symptom diary.

    I keep a log or a chart of when I have a symptom or flare, and everything that surrounded that day … I created this for my DD who has food allergies, but you can scratch the last three columns. 

    A couple of sites will help with the pollen count:

    And you can check air quality through .
  • LK

    Welcome MandyG730!    

    First,  Congratulations on your wedding!!  

    I understand the uncertainty of newly diagnosed asthma.  I was diagnosed six years ago and have severe, uncontrolled, cough-variant, adult onset asthma.  I am also allergic to dust mites, which are in every home not matter how well it is cleaned.  So I understand the feeling of always being surrounded by your triggers.  You are not alone in learning how to deal with this.  I am still learning how to avoid my other triggers.  I gave up riding and showing horses since many of my triggers are in the horse barns.  Since doing that I am doing much better but still have to analyze my surroundings to try to stay away from triggers.

    I found these forums on AAFA last fall and they have helped me immensely in dealing with the stress.  Before that I had never met anyone else who has severe, uncontrolled asthma.  People here understand what it is like living with  severe asthma.

    Even with you asthma being so new, you and your doctor should be able write up an action plan.  Having a plan really helped me feel less scared/worried/stressed about my asthma.

    Since planning a wedding is stressful already, is there any way you can distribute the many decisions and prep for the wedding to close friends or family members so you would have less to deal with?

    You will get through this and have a wonderful wedding!!  One thought is that if you know of somethings that are your triggers already, make sure they are not at your wedding.  For example, strong scents like perfumes, hair sprays, colognes are some of my triggers so I do my best to avoid them.

    Please keep us informed as to how you are doing!

  • Deborah Bartlett

    Please don't panic! It won't help the situation. Try to keep a level head. I live in the woods. My outdoor world is mold. I am in no position to move. I try not to go outside on a moldy type day. Try your best to stay away from triggers such as perfume cleaning products paint dust…things that could cause an asthma attack. I have had problematic asthma for 5 years along with COPD. Your pulmonologist or your allergist or your immunologist can help you by giving you the proper medications. Always have a rescue medication handy!!! Try and look forward to your big wedding day. On your invitations it could say no perfume please. That is perfectly acceptable. I have wetlands here. After they have been dry, then when it rains, alot of sludge is dredged up. That is not a good time to be outside. I hope you will take care and speak with your doctor. Glad you are here!!!! Keep on smiling!

     

  • mandyg730

    Thank you all for all your help and support. I made an appointment with my asthma/allergy specialist and printed out an asthma action plan. My family has really stepped up to the plate; it looks like we're going to make some moves to get me out of our moldy house before the wedding to start me on the road to feeling better.

    We have a dehumidifier, but I have never been able to get it below 70% humidity in this house. It has a real moisture problem, with mold on large portions of the wall in four rooms on the main floor.

    It's time for me to get out of here, I think, so I can see if I start to feel better. It seems like I will be able to find a place to stay within the week, while our new place is made ready to move in.  

  • Melissa G

    Mandy, welcome to AAFA! 

    Everyone has already given you wonderful advice! I am very happy to hear that you are able to get out and into a new place so you can be feeling better for your big day! Congrats on getting married! That is so exciting!

    I hope your dr is able to help you feel better so all you have to worry about is the big day!

  • Shea

    Cats is a huge trigger for my allergic disease– one  that I used to try to down-play and "brush under the table", and it had very negative long-term effects on my health that I am not going to even go into right now, BUT– if you think cat dander might be a trigger maybe you can have a family member watch the cats for a while, especially not have them in your new home for a while until you know and get yoyr symptoms under control. It can be very serious. Dander especially from cats is very sticky and gets everywhere. It takes up to 6 months to clear out of a home but reduction will start once the animals arent there, especially if you get a professional deep cleaning done on the home and steam clean any carpets. 

  • K8sMom2002

    Woohoo, Mandy! So glad you're going to be able to move out of that house! 70% humidity would be a trigger for me, mold or no mold. 

    And I love Deborah's ideas on "no perfume" on the invitations!

    If you think you may be allergic to cats, and you're moving to a kitty-free zone, Shea has a good idea to try it without your furbabies for a bit. Pet dander is really sticky and lasts for a long time, so if there have been cats previously in your new-to-you place, it might not be a completely dander-free zone.

    Could you talk to your doctor about other strategies your doc could suggest?

  • K8sMom2002

    @mandyg730, checking on you to see how things are going … I do hope you're busily packing up!

  • Brenda Silvia-Torma

    Hi @mandyg730, Welcome to AAFA and Congrats on your upcoming wedding! When is your big day? 

    Everyone has given you great ideas and information–the only thing I have to add is that I also lived in an apartment that had a lot of mold on the walls and once I moved out, I felt sooooooo much better. I'm hoping that you will feel the same way too!

  • mandyg730

    Hey all! My wedding is October 20–just over a month!! We are out of our house and in a very comfortable and clean AirBnB, with likely move-in date of October 1 to a new apartment.

    Unfortunately, before we left the moldy house I had to get in to some closets and do a lot of cleaning, and I think that made my sinuses *way* worse. Today I had a ton of sinus pain and very hot, red cheeks–has the hot red cheek thing happened to anyone else? My sinus pain is almost always in my cheeks as well, so it doesn't feel like a coincidence to me. I'm continuing with my sinus washes, flonase, azelastine, and (for one more day) Afrin…I'm hopeful that with more of the same, and my hero of a fiance making sure I don't have to go back into our moldy house, I can start to slowly get better. Any tips and positive words are much appreciated. 

  • Brenda Silvia-Torma

    Aww, you're getting married on Sweetest day!!  My husband and I married on the third Saturday of October too…I thought it was the perfect day to get married because it's all about letting people know how much you care about them. 

    I'm glad that you are in a clean Airbnb and are out of the moldy house. I've never experienced the hot red cheek symptoms but I have had sinus pain and that's awful. 

    Hoping you feel better soon!! 

  • Melissa G

    So very happy to hear you are in a new place!! Yay! I have had severe sinus pain and that hurts! Nasal sprays never worked well for me, I have to take an oral decongestant to get things cleared out or I will get nasty sinus infections quickly. 

    That is awesome that your fiance is making sure you don't have to go make into your old place. 

  • K8sMom2002

    Yay that you are out of the house! I've definitely had a painful sinus infection or two … could you check with your doc to see if antibiotics would be recommended? I'm not a fan of using antibiotics willy-nilly, but sometimes when my sinuses would get blocked, I would almost immediately develop a secondary bacterial infection.  

    Like Melissa, part of my plan for any sort of congestion is a decongestant. I also drink plenty of water and liquids. 

  • mandyg730

    Hi again! Yes, I went to my doctor right away; the heat and redness right over my sinus pain was a concern for me. He did prescribe me some antibiotics. I'm hoping that I'll be feeling better in a few days. We have an overnight trip to New York coming up (we live upstate) and I want to be able to enjoy myself without worry. 

  • K8sMom2002

    Hope that the trip to NYC is a great one and that the sinus issues go away very quickly!

    What things do you have to look out for when you're traveling?

  • mandyg730

    I wonder if I can provide some more informatino, so y'all can help me with some further wrinkles in my situation. I so appreciate all your help and support. As seasoned community members, please let me know if there's a better place to post about these things. 

    The first thing: walking. Up until I had my first asthma attack after a walk a few months ago, I walked 4-5 days a week, 3-4 miles each day. I loved my walking. Since the asthma attack, I've been scared to walk. I know that my asthma attack may have been triggered by a multitude of things: the mold I was living with; the patch test I was in the middle of; the heat and humidity; the sinus symptoms I had already been experiencing…there were tons of reasons I could have had that attack. But I can't shake the fact that it came after a walk. Now the thought of walking far (anywhere more than a few blocks) or fast gets me truly nervous. With my trip to NYC coming up, this is a major concern. Which leads me to the next thing…

    Anxiety. I have generalized anxiety disorder. So bad that sometimes I don't know if what I am experiencing is an asthma attack or an anxiety attack. I do see a therapist weekly, but I started with her recently, and it takes a number of appointments for them to consider anxiety meds. I have been doing some meditations, but life has been crazy and I have been having trouble making the time. 

    Today I really wanted to walk. So I parked my car the half mile away from work that I used to, did two preventative inhaler puffs, and walked, very slowly, in. Now I can't tell if I'm experiencing asthma or anxiety symptoms. I've coughed just a few times, bringing up some mucus (my **** sinuses). My heart is racing and my breathing feels a bit shallow, with my chest slightly tight when I breathe in deeply. I don't know if I should walk back to my car later or not. I know y'all are not doctors, but does anyone have experience with the asthma vs. anxiety tug of war? and that leads me to the last thing…

    My doctors have not been the most helpful. After I woke up wheezing, I went in to the asthma/allergy doc again, and saw a Physician's Assistant I've seen a handful of times. He didn't seem to remember me, even though he saw me at most a month ago…I brought in my asthma action plan to fill out. He told me he had never seen one before! I ended up filling it out mostly myself. I asked him if he could tell me my peak flow, or give me a peak flow meter…didn't get far with that either. He showed me the spirometry and inflammation test…both were completely normal, and the change in my breathing after using the nebulizer was 17%…he told me that under 20 is ok, but I am near 20, and that may soon be a cause for concern. I wrote down the spirometry result on my action plan, but I couldn't get them to give me a peak flow meter or tell me what my peak flow is. Should I buy a peak flow meter myself?

    I'm also wondering…should I look for a different doctor? I *think* what I have is mild intermittent asthma, exacerbated by mold sickness, allergies, and anxiety. I still have asthma symptoms only a couple of times a week, but I feel like I have no control over it or understanding of it. It's been a couple of months, and I keep going in over and over to my asthma doc…the longest between appointments has been two weeks. But I still feel like I don't have a handle on this. Again, any advice or support helps. I don't want to miss out on any more work, and I want to get back to a more active lifestyle, as I know that will also help with my asthma.

    Thanks for listening to the ramble. Sigh.

  • K8sMom2002

    I think it's natural to be anxious when you're faced with a possible trigger. And it can be hard to tease things out … because anxiety and stress can be a trigger. 

    You're very wise to realize that many things could have been part of that first asthma attack. The very first time you can't breathe, and you feel starved for air, it's a dramatic moment. It sticks in your brain. And your brain definitely will be associating asthma and fear with whatever you were doing. 

    You are doing everything right — taking your inhaler as directed, following your doctor's instructions, asking all the right questions. Good for you!

    My doc is a big one for "tipping points." She believed that if I began to reduce all the many things that contributed to my asthma, I would have fewer issues. She was right! So I'm hoping that removing some of the triggers will help a lot!

    I'm also wondering if some cognitive behavior therapy strategies might help you regain your love of walking. Could you talk to your therapist about that? 

    Something that helps me when I'm doing something very scary is to break things down into the smallest of parts, so I have easy hoops to jump through at first. 

    After I had my big huge flare (lovely case of pneumonia, lungs were trash for the longest), I found that even the walking I had been doing outside wasn't exactly easy for me. But I knew walking WOULD help (my doc said so). So I started walking in my house … it's a little weird, but I walk up and down my hall. At first I couldn't do very much at all. But then I could do a half a mile. And then a mile. And now I'm up to (usually 6K) steps.

    I walk when I'm on the phone with a friend or a family member. That helps me monitor my breathing, and I have another person there who can check in with me and say, "Hey, you're breathing pretty hard!" That's a rare thing for them to say now, but it wasn't at first. 

    And now I can walk outside. But I still can't run, and I used to run. 

    It's not very reassuring that your medical provider didn't know about an asthma action plan! It seems like you have a lot of questions, and you HAVE been back several times. I don't think it could hurt to circle back to your primary care doc and ask for a second opinion, or even ask your therapist for a referral to someone who works well with patients who have anxiety. 

    I hope your fiance will be very supportive as you go through your trip to New York. Take it slow and easy, keep your inhaler with you and know that you have some of the best hospitals around you if you DO have an asthma attack!

  • Melissa G

    Mandy instead of seeing the PA, could you check in with one of the dr's? When you have appts, do you see the same one? If not, it has really hard to get continuity of care.

  • mandyg730

    I think for future appointments, I'll make sure that I only see the doc in charge, and not one of the PA's. It's a pain because that can sometimes leave me waiting much longer for an appointment, but I really need some consistency and someone who knows *me* better as a whole person. I do end up seeing the same PA, but I get the sense that they are overloaded with appointments in this small practice, so he doesn't know me as well as I'd like. 

    After just a day of antibiotics I was feeling a bit better. I also made it back to my car without incident! I was panting a little bit, but I think my heart was racing from the albuterol…I do think the whole "is this anxiety or is it asthma?" thing is going to be confusing for me for a while. 

    I really, really hope I'm not allergic to my cats. A blood test for that came back negative…but it came back negative for a lot of things, some of which I'm definitely allergic to. I love my cats so much, and I've had cats my entire life. We'll see if when we are reunited in our new apartment if I have any reactions…if so, I'd rather try shots first and hire a million cleaners before I consider getting rid of them. They're my babies.

  • K8sMom2002

    So glad you're feeling better! And I think that's a great idea to see if your main doc can see you from now on.

    I'm not sure about environmental allergy tests, but I know that with food allergy tests, the "negative" answers are 90% accurate. That means for 9 out of every 10 people they say are negative, those 9 truly are not allergic.

    But on the other hand, 1 out of every 10 WILL be allergic to that. 

    Sometimes it's hard to tell what you are allergic to until you settle things down. It's not like you can eliminate everything in your environment but that one thing. But if you start tracking what's going on with you right before you have flares, then that can help you figure out your triggers. 

  • Melissa G

    Mandy, that is the hard part, when you want to see a particular dr the wait time can be longer, but the continuity of care can be so much greater. 

    Yay, that you are feeling better!

  • mandyg730

    The rental is really nice. Sparkling clean and dry as a bone–so much so that I actually had to get a humidifier for our bedroom! My sinus trouble seems to be abating a bit…every day, a little less pain. I'm still clearly having some allergies and asthma…spitting up a lot of phlegm (gross). It's still ragweed season. Even though the pollen counts have been low and getting lower, I still have some issues…does that also happen for any of you?

    My pcp said it would take a few weeks to fully get over the mold sickness, and I imagine the asthma flare will take the longest to recover from. Still, I made it through a gig yesterday without issue, even though my chest was feeling tight. 

    I found out from a friend that the PA we've both been seeing at the asthma/allergy specialist (the one who had never seen an asthma action plan) is a temporary fill-in for another PA. The other PA is better, which is good news. The bad news, though, is that this office doesn't let you see the actual doctor except on your first visit and your follow-up test days! I'm not sure they are going to provide the continuity of care that I need, and they're the only office in the area. I'm considering looking to offices in cities nearby, but that's an hour drive both ways…not a great solution if I need to see someone as soon as possible. I'm not sure what to do there.

  • Melissa G

    It takes me awhile to get over things when the pollen has been high or I have been exposed to something.

    I am so sorry about the doctors office. We travel for medical care. It stinks but something that just has to be done. 

  • Shea

    Skin prick tests are ststistically more accurate than blood tests— I have had blood tests come back negative to things that I knew I was allergic to, but the skin tests came positive (and I knew from reactions I was having as well). It is good to know either way, and then brainstorm solutions. 

  • K8sMom2002

    Mandy, ugh on the travel time to docs. Our daughter's allergist is about three hours away, and so is her hem/onc. What we've done is worked out a plan with her primary care physician to bridge the gap, and we also have a good "sick plan" that her allergist has given her. 

    Another consideration: when we used a local provider, the wait time was horrendous — we could literally spend an hour waiting in the waiting room, and another half hour waiting in the exam room. It was because most people in the area used that one allergist, regardless of how severe their allergies were. 

    But now that we see the allergist at the Children's Hospital, we rarely have to wait more than 15 minutes — and if we do have to wait that long, we're showered with apologies. 

    I found the same kind of thing when we traveled for our own appointments. So it could be that the time invested wouldn't be that much different, AND you'd get to see a board-certified allergist or pulmonologist every time. 

    Shea, I'm curious about the blood tests versus skin tests for environmental allergies … I'd be interested to read more. Do you have a link to a medical journal? Or were you referring to your own experience?

    I agree that it's good information either way — it makes sense that if you and your doctors can figure out which is more reliable for YOU, that can help you figure out your triggers in the most efficient and accurate way.

  • Shea

    Cynthia, here is a study link thats results show skin tests as more accurate than blood test for indoor allergens:

     

    My doctors are the ones who have said this to me, AND I had personal experience as well with a very positive skin prick test that a blood test came back negative for. 

  • mandyg730

    My doctors all told me the blood test was notoriously innaccurate. Bummer. But I think, through my own due diligence, I’m starting to narrow some things down.

    We moved into our new apartment yesterday, which also meant moving over all of our stuff and our cats from our old moldy house. I did a bunch of cleaning of dusty and moldy things with some harsh products and no mask (why, Mandy, why??), and lo and behold, I woke up in the middle of the night with a big ball of mucus in my throat. Coughed it up and was fine, but woke up with only one working nostril this morning, so we’re going at things differently today…about to walk into Wegmans (anyone else have Wegmans? The absolute best!) and get a bunch of ceritified asthma friendly cleaning products that they carry! Plus a mask to clean with. Somebody also just bought us an air purifier off of our registry, so that should be coming in the next few days and will help to clear some allergens.

    I also got myself a peak flow meter. I wonder how you all feel about their accuracy for measuring severity of asthma symptoms? I’ve been blowing into it morning and evening, and when I have symptoms. Never have I blown below 450, even when I was hunched over not trying. Personal best has been 530. Normal for my age and height is 489. This morning I had some symptoms and consistently blew 500 or over. 

    I have been coughing up some stuff this morning and having a bit of chest tightness, so I did two puffs of albuterol. I feel like they were largely preventative as well, because I know I’ll be doing more moving and cleaning today. How do you all feel about the preventative puff? Is that a good idea if I think I’ll run into triggers?

    Loving fiancé is on the case, too, and is going to be disinfecting things as much as he can before bringing them over, and has told me that if my symptoms continue or get worse, I should stop cleaning. Today is also my first day off of a course of prednisone, so I want to be extra careful about symptoms arising.

    We are very much hoping that once our stuff has been cleaned of the dust from the old place, that this new, cleaner, dryer house will be more of a safe haven for me. Cross your fingers for us. 15 days until our wedding!!!

  • Deborah Bartlett

    My immunologist tells me to go ahead with those 2 preventative puffs of Albuterol. If you are getting into a situation where you know you'll have trouble breathing, or you feel you'll cough or wheeze…it's ok to prevent a bad situation. I do it. 

    I wish you the very best on your wedding day. It should be the happiest day yet!!! 💕👥💍💍

    Debbie

  • K8sMom2002

    Shea, thank you! I'm looking forward to diving in and reading that article! This is something I've been wondering about AND forgetting to bring up to my doc. 

    Mandy, several members have said that their numbers on peak flow meters and pulse ox (O2 meters) trailed behind their symptoms — that by the time their personal numbers dropped, they were in real distress. 

    Others find that their peak flow numbers really reflect where they are on a day-by-day basis.

    Many docs use a symptom-based approach … something like the AAFA Know Your Asthma Zones chart:

    What my doc has said about most test results and data is that doctors are more concerned with overall trends. Are things trending in a good direction? Or are things trending down? One data point is just a snapshot on that particular day, and it may be an outlier. And my numbers might be far different than the "average" number. If you don't know what your peak flow numbers were before this flare, it may be hard to see how much you've been impacted.

    Can you talk to your doc about this? And also see if your peak flow meter matches up to what their office says your peak flow is? 

  • mandyg730

    I do hope to talk to my doctor about this, yes. My peak flow definitely matches up with my spirometry results from the doctor’s office…numbers don’t indicate asthma. and every test has indicated no significant inflammation. 

    But nevertheless, symptoms continue. I find that my most common symptom is tightness in the chest and throat, but with very little actual difficulty breathing…the actual difficulty breathing tends to come later, at night or the day after the chest tightness. I’m trying to curb that by using my nebulizer if I experience chest tightness (I am this afternoon, unfortunately)…see if that can actually help clear my airways enough to not go down a whole flare track. I’ve been flaring the last few weeks and I’m really, really tired of it. Bummed that the chest tightness has come back today since being off prednisone. My doctor told me he will always treat my symptoms, regardless of what the numbers say, which is good…I just wish I knew why the symptoms and numbers are so different, and how to get this flare to end. Sigh.

  • LK

    Mandy,  I am in the same boat as you in that my numbers are always good  ( peak flow meter, spirometry, pulse ox, you name it)  even when I can hardly get any air out and I am extremely tight in the chest.  My pulmo is good, too.  I asked him when I was first diagnosed six years ago and he said sometimes the number just don't show how we are really doing.  He goes much more by how I am doing than by the numbers.  Thankfully!!  

    I am almost a week into my current flare and I couldn't agree more that they are no fun.  Sending gentle hugs    to you!  ( Strong hugs just sound awful when one's chest is already so tight.  )  

    Sorry if this rambles!  Pred, you know!  

  • mandyg730

    Updating all for some digital hugs and encouragement. My flare got worse Thursday night, was able to avoid hospitalization with my nebulizer, got through yesterday with nebs every four hours. Today hadn't had to use it until I decided to make dinner and became thoroughly exhausted and chest squeezey. I have a gig tomorrow (singing is one of my part-time jobs) that I am afraid I will have to cancel…for the first time in my life. Very hard for me.

    Also have had some GERD symptoms the past couple of days, so I'm going to try to eat very acid-friendly and take a bunch of time to recuperate. Gonna call the doc in the morning. My wedding is in exactly two weeks; I want to make it through that day, even if I have to have prednisone to do it. Wish me luck.

    My family and friends keep telling me I'm going to get better. My asthma came on very suddenly and has been very difficult to control…before my first attack, I barely ever had a symptom. I would cough occasionally after running. I want to believe I'm going to get better, but I've been sick for a few months now…sometimes it feels like I'll never feel well again. I just want to feel good at my wedding. 

  • Melissa G

    Oh Mandy my heart is just breaking for you! 

    Could the GERD be aggravating your asthma? Are you still taking prednisone? 

  • mandyg730

    I am no longer taking prednisone. I’m wondering if some of my difficulty is i’m off of it…I did a short course of 30mg twice a day for five days , and felt MUCH better than I had…then off, and crash. 

    I do think the GERD is aggravating my asthma. I’ve noticed feeling worse after eating, especially after eating fast, large meals. I get chest tightness, sometimes even a bit of a wheeze. I also get the feeling of a lump or bubble in my throat. I’m highly suspicious that this could be related to my sudden symptoms, and how severe they have been at times. 

    There’s still hope, right? There is no part of me that wants to even consider postponing the wedding. I can rest up as much as possible the next few weeks, see if I can get some more prednisone to get me through, use my nebulizer, and have it there for me on the day if I need a break?

    i really hope the next time I post I am feeling better.

  • Melissa G

    I really hope you start feeling better asap! Is there anyway you can have small more frequent meals? Those really do help. Let us know what the drs say. 

  • Shea

    I have to be on maintenence prednisone for my chronic allergic disease/asthma symptoms, any time I go below it my symptoms come back.. And I used to try so hard to get off the prednisone and I would be suffering so bad before I went back in and Id need a steroid shot and a burst with a taper and my doctor would scold me– "Dont let it get so bad, you are suffering for no reason"– she knew I didnt like having to go back on prednisone. But after a certain amt of times I learned, best not to let the inflammation build up to a high point… Better to just bite the bullet, get the prednisone, knock out the inflammation when its outta control, then use both albuterol and an inhaled steroid in nebs/inhalers to keep the inflammation under control (albuterol alone will not deal with the inflammation caused by allergens and will only open airways and let more in, so inhaled steroids are important and they work by taking daily usually 2x daily or the inflammation will get out of control again). Eventually my goal is to wean lower on my maintenence prednisone and then off the inhaled steroids after I am successful on no prednisone for a while. Any time I am lowering prednisone doses–especially between 20mgs andv10mgs — there is a peeiod of time where the body has to get used to making its own cortisol again and so it is so important to treat yourself like you have the flu and dont clean, dont do much at all besides rest because your body is not used to making the cortisol and you need that to deal with physical and/or emotional stress. Alot of time when symptoms kerp coming back after lowering or stopping prednisone, you can talk to your doctor about doing a slower wean over a longer time sto help your body through the adjustment period. When I am on prednisone it gives me all this extra energy but once I am off I have less energy than ever, so I try to remember that when I am going up and down– I do not like bouncing up and down like a yo-yo on prednisone– physically OR emotionally– so once I found a dose that controlled my symptoms but wasnt too high, I used that as my maintenence dose. If you can, try to note what dose you did OK at before symtoms come back and tgat will help you and your doctor know when to slow or pause a taper.. Maybe you can even stay at that dose until after the wedding. 

  • LK

    Mandy    Many hugs for you!!  

    Yes, you will get through this!  A year ago, I had a long asthma exacerbation and I was on two short bursts of prednisone and each time when I was finished about two days later I would be in very rough shape again.  My lungs were still irritated enough that they needed more time to improve.  My pulmo put me on a three week course of pred at a lower dose and changed my maintenance inhalers.  It seemed to take forever, but by it made all the difference for me.

    My GERD definitely aggravates my asthma!  I have had to change my GERD meds a few times over these six years per my doctor.  We have finally figured out which antacid meds work for me. 

    The trick is to keep talking with your doctor when you are not improving or when you do improve and then get worse again or when you just don't know what to do.  That was the hardest thing for me to learn.  

    Absolutely, have your nebulizer near where ever you are all the time during your wedding.  I have found that for me, I am more at ease and therefore breathe better just knowing that my rescue medicines are at hand.

    Please talk with your doctor to see what he/she has to say or wants to do to help you feel and breathe better.  Many times I think that I should be able to handle "life with asthma" on my own, right?  I am middle-aged (yikes! When did I get this old!  ) , fairly intelligent and have a general understanding of how our lungs work and yet still learning almost daily about asthma and how to live with it.

    Please let us know what your doctor says!  

  • Melissa G

    Mandy, I hope when you call the drs today that they can give you a game plan so you can start feeling better!!

  • mandyg730

    Just got back from the doctor. They did the nitric oxide test again for inflammation, and again, totally normal. Peak flow has been steady at 500 or above throughout. I'm trying to take those as good signs. Clearly having a lot of allergy and respiratory trouble, though…so they put me on a 14-day course of pred with a very gradual tapering schedule. The schedule looks good, and my wedding is in 12 days…so I should have some coverage against inflammation at the wedding, which is a big relief to me. 

    The past two days I've tried eating smaller, more regular meals, and the feeling of tummy/throat pressure has been down a bit. I also stayed away from coffee this morning  which has been a challenge. I'm having a super annoying tickle in my throat yesterday and today, but I'm trying my hardest not to freak out about it. Could be the GERD, could be the post nasal drip, could be the allergies. 

    Doc told me to stay away from the cleaning while my asthma is flared. It's driving me nuts because there are a lot of things I want to do. I barely have any energy, though, so it's probably a blessing. I can do all of the necessary wedding update emails from a bed or chair. Sigh. Three months ago I was a super active person. I hope I can get back there someday.

  • Melissa G

    I am very happy to hear that the dr has you back on prednisone. Will the taper take you through your honeymoon too? 

    I really do hope you are able to get back on track and start feeling better soon! 

  • Brenda Silvia-Torma
    mandyg730 posted:

    Just got back from the doctor. They did the nitric oxide test again for inflammation, and again, totally normal. Peak flow has been steady at 500 or above throughout. I'm trying to take those as good signs. Clearly having a lot of allergy and respiratory trouble, though…so they put me on a 14-day course of pred with a very gradual tapering schedule. The schedule looks good, and my wedding is in 12 days…so I should have some coverage against inflammation at the wedding, which is a big relief to me. 

    The past two days I've tried eating smaller, more regular meals, and the feeling of tummy/throat pressure has been down a bit. I also stayed away from coffee this morning  which has been a challenge. I'm having a super annoying tickle in my throat yesterday and today, but I'm trying my hardest not to freak out about it. Could be the GERD, could be the post nasal drip, could be the allergies. 

    Doc told me to stay away from the cleaning while my asthma is flared. It's driving me nuts because there are a lot of things I want to do. I barely have any energy, though, so it's probably a blessing. I can do all of the necessary wedding update emails from a bed or chair. Sigh. Three months ago I was a super active person. I hope I can get back there someday.

    Hi Mandy, I'm so sorry that you're still not feeling well!  I understand about how frustrating it can be when your activity level significantly changes for the worse. Hopefully, the move, your new plan of eating smaller meals, and being on the steroids will help get you moving in the right direction. 

  • mandyg730

    Hi everyone,

    I have a nagging question to ask, related to my current flare:

    When is a wheeze not a wheeze?

    I have been hearing/feeling this sound of tight, forced air in my chest a lot lately. At first, I thought it was a wheeze. But now I'm not so sure. I actually googled "What does a wheeze sound like?" and the sounds I heard were much more pronounced than the sound I'm making. Every time the doctor has listened to my chest, even on days when I felt this sound was most pronounced, he says my lungs sound good and he cannot hear the sound I'm talking about.

    I guess I am wondering if my anxiety over the sounds of my breathing is impacting me. Perhaps my chest is tighter because of it? Maybe I'm forcing air because I am feeling so anxious? Often, when I tell myself to take a more relaxed breath, the sound goes away.

    Thanks, all, for your ears and support. I am still very much figuring out my way in this asthma world. The doctors don't always know how to answer my questions, so it's nice to know if other people have had similar experiences.

  • K8sMom2002

    Hmmm … what I have been told is that sometimes without a stethoscope we can't hear that signature wheeze that people associate with asthma. I am wondering about that lump in your throat … so glad the smaller meals seem to help it! 

    I've also been told by my daughter's pediatrician that what I thought was a wheeze was actually croup — an inflammation of the voice box and windpipe and airways. So I guess if your throat is tight, that can definitely affect the sound of your exhale.

    Have you seen an ENT? Could this be related to something going on with your vocal cords since you are a singer?

    Here's what AAFA's resource on says:

    Feeling and Expressing Strong Emotions

    • anger
    • fear
    • excitement
    • laughter
    • yelling
    • crying

    When you feel strong emotions, your breathing changes – even if you don’t have asthma. It may cause wheezing or other  in someone with asthma.

    So I guess your stress could impact your breathing and make it sound different. That could trigger your asthma, which could make your stress worse … which could trigger more asthma.

    I hate that your asthma has sidelined you like this. I am hoping that your big day will go off without a hitch!

  • Shea

    Mandy, I have had that happen where I exhale and hear a wheeze but the doctors dont hear it "in my lungs" and so it is "throaty"– I have been tested for vocal chord dysfunction ( which can be caused by use of inhaled steroids and nebs where the vocal chords are swelling and causing the wheeze), but mine is not from that and sometimes doctors can hear my wheeze in my lungs when they listen so I am a little at a loss to know if it is related to my allergies or triggers or sonething ekse BUT I do know it does cause difficulty pushing air out and thus getting air back in, and my nebulizers and inhalers do help it go away, so those things make me at least know that it is a problem, it affects my energy level and breathing, and I know some things to relieve it. I also have frequent heartburn– I always keep chewabke fruit flavored calcium carbonate chews and I really do try to eat less acidic things but it is tough for me!!! Coffee actually helps my asthma, and Ive read about how it can reduce inflammation and do other things that help asthma — there are low-acidic coffees out there too.

  • mandyg730

    Every time the doctor has listened to me, it’s been with a stethoscope. Only during my most severe attack did the doctor seem to say my lungs “sounded better” after treatment. He never said if he heard a wheeze, but ever since when I’ve come in he’s told me my “lungs sound pretty good.”

    I do see an ENT, and had a laryngoscopy last year to check on some vocal fatigue issues I’d been having. The doctor saw thermal damage (I used to smoke, but have since quit), but no vocal chord dysfunction. I wonder if i should get scoped again? I have been feeling the lump in my throat more often lately, and my last attack was after—gulp—singing a bit more than I should have at a rehearsal. It would be a tough blow, for sure. Singing is my part-time job. I’ve done it all my life. I am trained, but the kind of singing I do—in original and cover bands, at bars, weddings, parties—is very high impact. 

    Wish me luck. Less chest tightness today. Less coughing up of things. Still minor throat lumpage. Third day of my 14-day pred course.