exacerbations that last for weeks

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lisaroxy

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Hello all,

I'm in my 30s and have had asthma since I was a toddler, with a handful of hospitalizations. The last few years I am getting more and more discouraged with it, because when I have an attack it keeps me having trouble for weeks on end. It usually starts with a virus and within a day or two it's not just a cold, but bronchitis. The cough and wheezing, though I can get it somewhat under control with my nebulizer, is still very problematic and for weeks at a time I will not be breathing the way I should be. When I get an episode like this where it's not just an isolated, quickly reversible attack, my doctor usually prescribes antibiotics and prednisone, and increases my control dose of Advair (250) to the higher dose (500). It does eventually help or something happens and it goes away, sometimes after 6 -20 weeks of wheezing and being unable to do my normal life activities. I'm about 3 weeks into this round, feeling desperate and hopeless. Wondering if I went into the hospital as soon as I get a cold, maybe we could keep it from getting my lungs inflamed! Anyone have suggestions? What do you do when you aren't ready for the ER because a nebulizer helps (even if you have to use it every 2 hours!) but you can't stand wheezing all day, every day?? Any help would be appreciated.

Oh, of course - no I'm not a smoker and never have been. I avoid triggers as much as possible.
 
I have the same problem with viral/bacterial infections triggering asthma that takes weeks to get under control. I start antibiotics & nebulizer asap & if the cough is bad and gets worse when trying to speak the only thing that stops the cough is Tussionex for several days. I try to avoid starting prednisone because it completely disrupts my sleep which stresses out my body which in turn worsens the asthma - unfortunately longer & higher doses of prednisone is often the only thing that can start to get the asthma under control. My doctor encourages me to go to her office rather than the ER & gives me a heavier dose (or 2) of albuterol. In addition to Syrabicort, doctor adRAB others such as Alvesco, Singular, Spiriva, Pulmicort, etc trying to find something that works but unfortunately nothing seems to work - it eventually starts to get better with time. It's very frustrating.
 
I developed asthma as an adult about 9 years ago, but your story is really similar to what I experience. I usually have something trigger a flare. The flares then usually last 3-4 months. I usually end up at the doctors fairly frequently because it really wears me out and scares me at times. I'm not sure how much help I can offer, but I can commiserate.

I do however really have a good asthma action plan in place. My Pulmonologist that I've been seeing the last few years actually keeps asking me if I'm a nurse because I'm so informed about asthma, know my history well and can articulate it and because I diligently follow my plan. (I'm in education and not a nurse by the way.) I'm on Advair, Singular, Allergy meRAB, reflux meRAB, immunotherapy and Xolair as my maintainence. I have my albuterol inhaler and nebulizer as needed and carry an Epi-pen. I have standing prescriptions for high dose antibiotics, Prednisone, Advair in various strengths. My Pulmonologist did this after developing a comfort level with me as patient. He says I know my own body and symptoms and wants me to begin treatment when I start with symptoms without waiting for an appointment. I really believe following the plan and trying to avoid triggers when possible really does help.

I just get frustrated at times with how bad things are even when it isn't an emergency so I end up checking in with my primary care doc. I have other cough triggers in addition to asthma and feel better when they have had a listen to my lungs. I can't always differentiate between environmentally triggered asthma and acid reflux triggered reflux either (acid irritating my lungs) so I don't always know if I should increase my reflux meRAB as well--they don't help much. I don't want to overmedicate myself. Much of the time though, there isn't much else they can do for me that I'm not already doing. Cough suppressants don't help. Sometimes after a couple months of coughing, they will give me something with codeine or something stronger to help me get some rest though because I get so worn out with the constant cough.

I will say that I'm not crazy about going on Prednisone though. The last time I went on it in Septeraber I had crazy side effects that I hadn't had before. I really don't want to deal with that again unless my breathing gets really really bad.

I think in addition to the physical effects of not being able to get a good breath for so long, and the constant asthma coughing for me as well, after so long in a flare, the mental piece comes into play. Being worn down really beats on you.

What type of doctor are you seeing for your asthma? Do you have a written action plan in place with your doctor? If so, has it been revised recently. My guess is that you have a good relationship with your doctor. I'd ask him/her about where that line is in the balance if just "sucking it up and dealing with it" and figuring out when to see the doc when it isn't a true emergency but you are feeling horrible. It really does sound like you are doing many things right.

Also, are you taking a multivitamin or other supplements? That might help. I just finished a book called Adrenal Fatigue by James Wilson. Adrenal Fatigue isn't an illness recognized by the medical community at large, but the book does talk about how with all the stresses on our bodies from a large variety of things it throws our adrenals off. It offers some holistic options to help us get our bodies back in balance a bit more. If you are interested in adding a holistic approach you might find it interesting.

One of my specialists also highly recommenRAB that I eat an anti-inflammation diet. While I follow pieces of it, I haven't committed to it 100% yet. I've seriously been considering it, and have found a lot of good internet information and books on the subject, but I haven't made that leap yet. Basically the diet is just a change in what you eat so you are avoiding fooRAB that "inflame" the body so that your body can heal itself better. It generally advocates avoiding all processed and refined fooRAB, eating more natural fooRAB and ensuring a proper nutritional balance. That is oversimplifying it a bit though.

Also, my physical therapist, chiropractor and massage therapist all have treatments that can help with the asthma some. I'm not sure how much they really directly help or not, but I do know the muscles in my stomach, chest, back, neck and face get really knotted and out of balance when I'm in a long flare. Probably my PT adjustments and massage therapist help the most. If you go the massage route, find a therapist who you can trust. The respiratory trigger points are under your arm just to the side of your breasts. Careful massage shouldn't be on your breast, but it somes close and could be a bit uncomfortable with some therapists. If you want to try working trigger points on your own, I highly recommend you check out The Trigger Point Therapy Workbook by Clair Davies, NCTrab. It shows how to do trigger point therapy on yourself. It explains where all your trigger points are, what muscles are involved and how to work the trigger points to help loosen them. From my research, it looks like the Serratus Anterior area that is most useful to work for asthma. My PT also works the first rib area a lot as well. I'm not totally sure if that is directly for the asthma or if it is because I throw things off when I have asthma problems.

I may have gotten way off track, but I hope something helps.

I wish you well.
 
Thanks for the support. I'm too exhausted to reply in detail right now but I really appreciate hearing from you.
 
You know, I had no idea about the trigger points, and I'm such a big fan of trigger point work!

I've also been trying some small changes in the direction of a more anti-inflammatory diet. At first it seemed like it was too extreme and I'd lose weight (which would be bad) but then I decided that just a few tweaks could change my fat balance without cutting calories.

You always have so many good ideas.
 
Thanks for the input and ideas. I ended up in the ER last night and got two breathing treatments with DuoNeb and a new breath-activated nebulizer and it made a lot of difference! They told me cough-variant asthma is harder to recognize and treat and that I should discuss it more with my doc, and thankfully they gave me a script for the DuoNeb instead of the plain albuterol I had been using. I also got some new codeine cough syrup to help me rest, and got several hours of continuous sleep! So far I'm breathing much easier today.

I really appreciate the support and think I'll keep lurking around a bit. :)
 
I'm glad to hear you are doing better.

My asthma is the cough-varient type as well and it can be a challenge. I have other conditions that cause some of the same types of symptoms. I'm not always sure how much to increase my asthma treatment.
 
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