Since you’re reading this post, Im assuming that you’re either living with asthma yourself, or you know someone else who is.
If you’ve been to my site before, then you probably know that I blog extensively about my asthma and the impact it’s had on my life. Ah, but except for a few who have left comments, I know virtually nothing about the vast majority who have visited here and how this disease affects their lives. So I thought it would be interesting to turn the tables and ask my readers about their asthma.
If this applies to you, I’m very curious on how you deal with your asthma symptoms, and how those symptoms manifest themselves. This is not a scientific survey and I assure you your answers are confidential if you send them in email form. Asking these kinds of questions expands my knowledge of the disease and helps me understand just how varied and diverse it can be, so I can be a better teacher and advocate.
My questions are……….
* How long have you had asthma, and were you diagnosed by a Primary care doctor, an Allergist or a Pulmonologist? Have you been hospitalized for it?
* How does your asthma manifest itself in general? Do you cough, do you suddenly or increasingly feel more short of breath? Do you hear yourself wheeze? All of the above?
*Do your symptoms usually come on suddenly without warning, or do they usually ramp up gradually over a period of time? If they come on really fast, are you usually able to pin point a specific trigger? If your symptoms come on gradually, over what time period until you realize that you’re actually flaring?
*In the onset or beginning stages of your flare, is it more difficult to get a breath in (inhaling) or getting a breath out (exhaling), or both?
*Whether your symptoms come on quickly or slow and gradual, are you usually able to obtain relief after using using your inhalers or nebs or do your symptoms often escalate to the point where you need to load up on prednisone and/or eventually need to go to the Emergency room for treatment?
*In between asthma flares, does your breathing usually return to completely normal or does it just improve? ( yes, there’s a difference)
I’m also interested in which of the 3 most common descriptors you use to describe an increase in your symptoms. Do you refer to it as an “asthma flare“, an “asthma exacerbation” or an “asthma attack“? Do you use one in particular, or do you use them all interchangeably?
There’s no set rules of course, but for consistency Ive come up with my own set of definitions for these terms: Do these make sense?
“Flare ups”: To me an “flare up” is a temporary increase in the frequency and intensity of symptoms from one’s baseline. Flare ups usually respond well to inhaled medications and/or steroids bursts and are relatively short lived.
“Exacerbations”: Are prolonged flare ups that are more resistant to initial treatment and tend to get worse before they get better.
“Asthma attack”: To me the term “attack” a sense of suddenness and urgency, so I like to reserve that term to describe sudden flare ups that come on fast and furious, much like a severe allergic reaction.
Those are the big questions for now, but if you feel like sharing more, I’m also interested in your experiences while in the ER or hospital, good or bad. Ill do my best to read all comments and emails.
Thank you, and I hope if you’re dealing with an asthma at this very moment, that you start to feel well soon.
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I have always had trouble with breathing and exercise. Just this year, after a terrible bout of bronchitis. ER run. I was officially called an asthmatic. Month later i was hospitalized for allergic reaction to my albuterol inhaler. 5 days to tell me what i already knew. Allergic to albuterol. Meds and home. I’m usually only wheezing when flares occur. Yes, it’s audible. Don’t need inhaler, goes to normal in about 30 minutes. Lucky to be mild. I have abrupt problems when i encounter certain allergic triggers like perfume, pollen and smoke. My food allergies can cause me to get bronchitis, so I’m diligent in reading labels. I drove the hospital nuts when i was there. Mine is livable and somewhat manageable. I’m blessed. You have helped me to learn that I’ve been in denial about flare ups. I have an emergency inhaler that is a permanent resident in my do i have list for when i leave the house. Flovent every morning and eve. Did you know inhalers can cause thrush? I do now. Bleck! God bless!
Back in 1982 at the age of 18, I had pneumonia and had trouble getting over it. PCP called it asthma and gave me Proventil inhaler and a scrip for Slo-Phyllin. I never kept up with them. I became a runner age 25… occasionally I had trouble breathing during runs but nothing persistent. Age 45, I noticed a whistling sound when I was running that would go away once I stopped. And I was puzzled while I could run 10 miles without a problem some days, but later that day would get out of breath just taking out the garbage. Went to Primary Doc, who ended up sending me to pulmonologist and was diagnosed again with asthma in 2014. Seems to vary between mild and moderate persistent severity.
Each episode seems different, sometimes its a high pitched piercing cough that won’t stop, and often I can hear a wheeze when I try to force air out of my lungs. Other times no cough at all or wheeze but lungs just seem to quietly shut down and I see a drop in FEV… sometimes quickly. A few times, it has seemed like I haven’t been able to move any air at all… thankfully I have been able to pull out of that… but it is frightening.
I too distinguish similarly between flare-ups and attacks… I often call extended run an “episode.” I discovered that I cannot take LABA medications. I need to take a prednisone blast two or three times a year, but of the six months I was on Advair, I ended up taking prednisone for a total of seven weeks… and I had a severe attack every six weeks and ended up in ER a couple of times. As soon as I quit Advair, things improved. Now I take Qvar, Spiriva and Montelukast and seem to have reasonable control. I do better with levalbuterol than albuterol, so I keep Xopenex inhaler handy and use it before running. About once a month, I’ll have a flare up or exacerbation that doesn’t respond very well to my inhaler, but the nebulizer usually takes care of it. If not I add prednisone for a few days. I seem to have successfully reduced by ER visits, and I have not yet needed to be hospitalized. It seems like my breathing returns to normal between episodes if I’m on Spiriva, before that though, it was not as good between episodes.
I really appreciate your blog, Stephen. It has really.helped me not to be afraid of asthma and to continue running in spite of it.
Thank you for taking the time to write, and for that very concise description of your asthma history. I’m sorry that you have to deal with asthma at all, but Im happy hear to you’re still able to run despite it. Ive heard similar stories about adverse effects from Advair. There are people out there who are actually allergic to Albuterol if you can believe that. I cant imagine.
Well hopefully you’ll have fewer “episodes” with your newer treatment regimen.
Take care David Xx
Steve G
I just saw this…
I am just interested about the prednisone… I don’t know how to communicate other than the way I’m doing it right now. I am not on social media but I do email. I am an older lady and I have had prednisone for 40 years and I need to get off of it now and it’s very dangerous I have rheumatoid arthritis and I saw you had asthma and I see that you got off of it and I need to desperately because my skin and my muscles and my body are wasting away. So I need to know who to talk to about this. I am going to talk to my doctor about the new medicine I have to take. But I’m very interested in someone else’s experience. So I don’t know if this is the right person to even write to. But I am trying thank you
Just tell your doctor you dont want to take them anymore. Ask if there are alternative meds with fewer side effects. If youve been on steroids for 40 years it may be difficult to come off them, but it can be done. Best of luck to you.
My PCP diagnosed me in 2012 (or so) and in 2016 my pulmonologist diagnosed me with eosinophilic asthma. And since May 2016 I have been hospitalized 9 times. I am almost always SOB but it will get worse when my asthma flares. I also cough and wheeze. My symptoms usually come on gradually, but because I have a poor perception of my SOB so I’m pretty far gone before I realize (or am willing to admit to myself) that I need to go see my doc. And nebs will buy me some time but that’s about it. I will end up on steroids. Most of the time I end up needing IV steroids.
For the most part, my hospital experiences have been good (if being stuck in the hospital can be good). The only issue I have had is my former pulmonologist never did believe that I have asthma and was very dismissive. When I had mild asthma, it wasn’t an issue but when I started getting sick every 6 to 8 weeks, it became a problem. He tried to pass off my issues as an unknown restrictive airway disease that I didn’t have. My PCP sent me to my current pulmonologist who diagnosed me with eosinophilic asthma and he has been wonderful. Even though we are having a problem with controlling my asthma. I tried Nucala but I didn’t tolerate the side effects. We are going to try Fasenra and he has also talked to me about bronchial thermoplasty.
OH, and I refer to my asthma episodes as exacerbations if they are serious (and last a while) or a flare if they are short lived.
I hope you are doing well. I really appreciate your blog!
Stephen Gaudet
4:37 PM (0 minutes ago)
to Kristi
Thank you very much for taking the time to respond.
Im happy to hear that you finally have some answers about your asthma. Having a knowledgeable Pulmonologist can sure make a difference. Besides benralizumab ,there are several other biologics hitting the market shortly, one of them is bound to help you.
Stay strong,
Steve
I can remember having trouble breathing for most of my life but not really realizing it wasn’t normal. When I was 14 or 15 u got bronchitis and was given steroids and nebs for the first time. I never really fully recovered from it and became the first teenager with a reactive airways disease diagnosis as my primary was hesitant to diagnose asthma. I was eventually sent to an allergist who immediately told me I had asthma. I have been hospitalized but thankfully never intubated.
My main symptom is coughing but I do get wheezing. I also get a lot of air hunger where I’ll take a breath but feel like I’m not able to completely fill my lungs with air and need to try and gasp deeply to get a full breath.
My symptoms usually come on slowly with illness but otherwise come on fast and furious. I have bad allergies and I also have reflux and sleep apnea that contribute to my symptoms. My asthma is aspirin sensitive so I have to be really careful about looking for sneaky places where that is hiding.
I used to have a hard time controlling my symptoms quickly enough at home. I had bronchial thermoplasty a few years ago and that has definitely tamed the degree to which I flare.
I don’t like the term asthma attack. I feel it gives the disease too much power. I’ll usually say that I’m flaring.
Thank you for the info Christine, you brought up some very good points. Many people with asthma also suffer from GERD and sleep apnea,which can trigger and/or make their symptoms worse. Getting those under control can certainly help. I also agree about the term ” asthma attack “, Ive never liked it.
I just got out of hte hospital this am (thank god, I was in the hospital in June for crying out loud) This attack was most likey caused by GERD. My eosinophil count was 0 (pre-steroids). My meds were changed to hopefully prevent this again. I never knew until now that GERD can be a culprit!
I was initially diagnosed at 16 (I’m 18 now) but it was suspected I’ve been suffering for a while but it finally became significant at that time. I’ve been hospitalised 15+ times between this year and last year, 4 ICU admissions last year and 3 this year so far.
I get coughing fits which lead to shortness of breath, I rarely wheeze, it usually skips straight to silent chest.
I have many different triggers which can bring on an exacerbation slowly or suddenly. Usually viruses/infections cause a build up over a few days, then I suddenly crash. Then other triggers such as cold, dry air bring on very sudden attacks.
If I have a slowly developing exacerbation, usually breathing out is more difficult, whereas an acute attack, breathing in general is extremely difficult.
My symptoms in my attacks used to be controlled by nebulised salbutamol and ipratropium bromide but for my last 4/5 hospital-worthy attacks, not even IV steroids have initially helped. I’ve had to have ketamine and adrenaline infusions running at the same time to relax the muscles and take away the swelling. After a day or so nebulisers start to sort of help again.
I don’t think I’ve had “normal” breathing for years now. Inbetween attacks and exacerbations I tend to just improve, till the next attack. I’ve pretty much maxed out on typical therapies (preventers, pred, etc) and I started Nucala but it was stopped because I began catching viruses and infections from its immunosuppressive properties, now back at square one.
It sucks in hospital, because I’m young I can compensate and my blood gases are typically quite good even in a severe attack, I still become very acidic and my potassium plummets but my CO2 isn’t too bad and my O2 is usually great, which causes some nurses to treat me like I’m not struggling. I’m so thankful for the brilliant doctors who know I’m good with compensating and treat the situations accordingly. Usually end up on bipap but it certainly helps. I also end up on fentanyl IV for such intense pleuritic pain so I’m usually out-of-it, unaware and asleep/sedated for a portion of my hospital stays which isn’t a bad thing, it makes time go by quicker.
I first discovered your blogs when I was reading about intubation in asthma. There’s been many times I’ve been on the line of doctors about to intubate me but it hasn’t happened yet, your blog made me feel a lot more comfortable about the idea of it if it was ever needed.
A lot of your symptomology and triggers mirror those of mine…minus the cough.
Blood gasses, especially O2 and O2 sats, rarely reflect how much a person might be struggling during an attack, but it sounds like your medical team understands this. Actually, a rise in Co2 or a decrease in Ph is the best indicator of how severe a flare is.
Sorry about the Nucala, Ive haven’t heard much about any immunosupressive effects of biologics, but these drugs are so new that no one really knows the long term effects. Thankfully, there are several others that will be available in the near future, hopefully you can try one of those. Do you know if you have elevated eosinophils? Are you steroid dependent? Since your airways seem to be so spastic, have you considered bronchial thermoplasty? Normally, Im not big on the idea of frying someone’s airways, but in people with severe bronchspasm, it seems to help, at least in the short term
Thanks for writing. I hope you can get your asthma under control.
I’ve discussed bronchial thermoplasty with my specialist, he has been thinking about it but is apprehensive because of my age. But assuming all other methods don’t help and my overall prognosis continues to look bleak, he would consider it. According to him, I have eosinophilic asthma, and I’m very much dependent on steroids, I’m on a 10mg dose of prednisolone everyday and often on higher doses to control more mild/moderate exacerbations, that’s on top of other corticosteroid puffers I use daily and daily antihistamines to control the allergy side. The Nucala was working, I wasn’t hospitalised for around 4 months (which is a big win for me haha). So it is a let down that my specialist wanted to stop the injections, I’m sure he would have something else in mind, he’s very conscious of weighing up the risk/benefits of things. Thank you so much for writing back! I never thought I’d finally find so much in common with someone with asthma. A lot of your blog posts made me a lot more comfortable with my own situation.
Stephen, so funny to hear you call BT “airway frying.” When I had it my friends and I called it my lung charring. Sounds extreme but not too far off?
Hi Stephen,
Thank you for writing this blog. The reason why I am here is because I am Asthma patient. I am gonna answere your questions listed above.
How long have you had asthma, and were you diagnosed by a Primary care doctor, an Allergist or a Pulmonologist? Have you been hospitalized for it?
I was diagnosed with asthma at age 22 and I didn’t have it before. I was diagnosed by an Allergist but my asthma wasn’t due to allergies. Yes I have been hospitalized for it.
* How does your asthma manifest itself in general? Do you cough, do you suddenly or increasingly feel more short of breath? Do you hear yourself wheeze? All of the above?
Yes, all of the above.
*Do your symptoms usually come on suddenly without warning, or do they usually ramp up gradually over a period of time? If they come on really fast, are you usually able to pin point a specific trigger? If your symptoms come on gradually, over what time period until you realize that you’re actually flaring?
The symptoms come up gradually and I would say it happens in 2 days if I am off my meds.
*In the onset or beginning stages of your flare, is it more difficult to get a breath in (inhaling) or getting a breath out (exhaling), or both?
I would say both and when I exhale, I wheeze a lot.
*Whether your symptoms come on quickly or slow and gradual, are you usually able to obtain relief after using your inhalers or nebs or do your symptoms often escalate to the point where you need to load up on prednisone and/or eventually need to go to the Emergency room for treatment?
If I don’t take my inhalers for few days then I would say that I am in trouble. Then most likely they would give me prednisone and nebulizer
*In between asthma flares, does your breathing usually return to completely normal or does it just improve? ( yes, there’s a difference)
It just improves and it gets worse.
I am taking Q-var and Ventolin but the side effects are bothering me a lot. Is there any other homeopathic medicine that might work for asthma?.
Hi Sayed,
Sorry to hear about your asthma. Thank you for taking the time to write and answering my questions. The responses I receive from others helps me better understand the many variations of this disease.
Regarding homeopathic medications or supplements, I would avoid them unless they’ve been clinically proven to help. At this point I know of no such medications.
Can you tell me what kind of side effects you are having? from your medications? You mentioned Qvar and Albuterol ( Ventolin). What kind of side effects are you experiencing with each drug. Are you on prednisone very often?
Thank you and I hope you’re feeling better.
Steve
I have been struggling with asthma for over 15 years. Mine manifested itself after I had an anaphylactic type reaction to aspirin and came close to death when I was about 50 years old . After that I noticed my immune system had run amok. I never had allergies when I was young but after that I went home to Minnesota and helped started to help my uncle bale hay – I had a terrible reaction to the hay and ran to the air conditioned car never to return to the fields again. I went to an allergist to discuss my problems and I was introduced to albuterol and he said I have mild asthma along with allergies, I moved to Phoenix and they tested me for allergies and I was allergic to most things and many of them were classified as severe. They prescribed advair along with albuterol which I used when the need arises. After 5 years of allergy shots I thought I was “cured” – no more asthma meds and I used allergy meds occasionally. Life was very good for 3 years and then my allergies returned and I had shortness of breath again.
I was retested for allergies and started taking allergy shots again which I will probably take for the rest of my life which is a small price to pay if they work. Asthma returned as well along with periodic bronchitis. During the flu season in Jan 2018 I caught the flu. When I started coughing up blood it was time to see the doctor. He suspected pneumonia and prescribed an antibiotic. The next day things were getting worse. Coughing was so bad I was certain I broke a rib. When I breathed I heard sounds coming from my lungs I had never heard before so I went to the ER. A week later I walked out of the hospital a lucky man so to speak. I had contracted necrotizing pneaumonia along with sepsis. But I, along with you, have always worked out with an emphasis upon my cardio. Mountain climbing, hiking, bike riding, elliptical, etc. My doctors were surprised I was able to recover as quickly as I did and I credit it to my exercise regimen.
Asthma has continued to get worse and I take brio today with albuterol close at hand. I came across your blog as I was looking for insight into where my asthma may end up.
Thank-you for sharing your life’s experiences and your innermost thoughts which most people keep well hidden.
Hi stephen! Love your blog. Thanks for writing and sharing.
I’ve had excercise induced asthma diagnosed in my pre-teens by PC doctor, but can remember constantly beeing out of breath and coughing from a very young age. Wasn’t using my inhaler as much as i should because my PÉ teacher told me I was just ‘out of shape’ and hyperventilating. My mum thought that I wasn’t having asthma due to not wheezing(the whole familie does…)
In my 18-23 years got an epi pen for anafylactoid reactions. But they forgot to think about checking extra on the ‘asthma’ eventhough I told them to. At 23 finally got seen by my pulmonologist after admission for ‘respiratory infection’ but one that almost killed me. who told me I actually have severe asthma instead of very mild… so: hard to control, lots of triggers, bad response to steroid and had been forever undertreated. Have to pay for that Now.
I am usually in hospital for at least 2-3 times a year. Usually for 1-2 weeks.. that is without the epi-pen allergy and breathing adventures or other 1-2 days admissions. I mostly avoid going in for as long as I can…. am aloud to do most at home. Prednisolone (30, but can vary as I please), azytromycine (3x), foster, spiriva, alvesco, salbutamol, and or nebs, anti allergy and nasalspray. I always try to get rid of the oral steroids, because of the long term side effects. My doctor isn’t all that happy with that. I have non Ige allergy, but my body does react very bad. Due to the lack of IgE I am not eligable for the biological she wanted to try.
Immediate or gradual response.. With anafylactoid reactions it is immediatly and I will need adrenaline to make it through quickly.. Other triggers (dustmites, food, perfume, smoke etc) are usually rapid. Only humid weather can change things both Quick and gruadually. After a virus it gets ‘gradually’ worse (if I manage to get rid of the virus without severe shortness of breath). The coughing is very tiring, but a good sign.. i have enough air to cough still. Sometimes I can hear my wheeze, but not always. Shortness of breath is a big issue. And after that simply silent chest. I sometimes find it hard that in Emergency assistants ‘can’t hear anything’ and then relax, but then a pulmonologist comes running in quickly. During admission I have had a lot of problems with nurses and doctors From assuming I can easily take a shower on my own because I am young and the assumption that iT Will ‘make your cough go away’ to weekend doctors who after putting you back on ventilation machines admitted that they simply didn’t really check me anymore since my o2 was good and wanted to release me and I suddenly got worse.
The gradual phase I find hard. Usually I have other people warning me I look pale with dark circles around my eyes and that I look extremely tired. It’s hard to notice(and admit) it’s getting worse. Also my o2 is mostly good, and a lot of the ‘general’ doctors or assistents get iT wrong since I have silent chest often when I go in eventually.
I have a 3 day rule, that after 3 days Of severe cough without improvement I need to be Checked out by my pulmonologist. If I find that my nebs aren’f working and am Severely out of breath I need to call (funny… I make other people do that;))
Breathing out is more difficult in general. Acute episodes are both way difficult. In combination with adrenaline and combivent etc. I can make iT through most short episodes with allergy related things (but them need to be observed). The virus and bacteria caused ones are usually a one way ticket to long admission due to fatigue and resp failure and at least oxygen and high steroid doses.
Improving… and getting worse. Have to consider that as (the new)normal right?
Further: I have the same terminology as you. I also discussed this with my nurse, that helps me when in trouble communicating in emergency rooms.
I wish you the best!
Kindly
Anneroos (sorry for the English. I am dutch)
Hi Stephen,
Firstly, may I say you are truly an inspiration, my experiences with asthma are a mere drop in the ocean in compared to yours….
I developed Asthma at the age of 4…. I had just started school. I’d never really been exposed to colds as there were no playgroups back then so when I caught a nasty chest infection within the first couple of weeks it started a chain of events that still continues 63 years later.
Not sure what drugs I was on to start with but asthma ran through the years every time I contracted a severe cold. I remember sitting on the side of the bed rocking to help me breathe, yellow tablets under the tongue and then ephedrine tablets.
I also seem to be allergic to dust mites, feathers and mould, always breaking into wheezing whenever we stayed at my Grandmother’s and then frantic journeys on the bus to the hospital, where I was injected by something that left me shaking all the way home. However like you the breathing difficulties ended once the flareup ran its course, in those days. This continued til around 1969 when I was given my first Venolin inhaler, which was a real game changer at the time. Unfortunately throughout my 20’s/ 30’s my usual peak flow dropped and I progressed onto Serevent and Becloforte. with oral steroids during flare ups.
It wasn’t until last year that I was told I also had Emphysema…. after tests I was diagnosed with 55% FEV.
This kinda hit me hard, I felt the Asthma was enough to contend with, I knew my triggers and when to act on things. No I have never been “hospitalised” but “Hey!” this was the UK , as a child I would go blue and my doctor was still insisting I had nervous asthma caused by my loving parents – all this was said as he puffed through his 3rd cigarette of the appointment.
I’ m now on Spiriva and Relvar Ellipta (indicated for the regular treatment of asthma in adults and adolescents whose Asthma is not adequately controlled) …. I have a very understanding team supporting me at the doctors surgery these days, but feeling a bit apprehensive as I have just had a flare up like I haven’t seen since the COPD diagnosis. (Hoping now that I’ve not become allergic to my dogs – having a RAST test next week… not much point really as I could never rehome them).
Reading your blogs has made me realise that there are far worse situations out there and if you can do it with such good grace then I certainly should.
Bless you….
Dorothy
Hi Dorothy,
So kind of you to share your story and experiences, Im sorry to hear that you have emphysema AND asthma. Do you require supplemental oxygen?
I can totally relate to the “yellow” pills and whatever injection they gave you in the ER. When I was a young teenager here in the US, we had a horrible medication called “Tedral? It was actually a combination of theophylline and phenobarbital. Basically, supercharged caffeine mixed with A popular sedative at the time. Yuk, I used to dread taking that stuff, but as you say, that’s all we had available back then. Thanks goodness for the newer inhaled medications, though I know a lot of my UK friends are still prescribed theophylline and/or terbutaline.
Please don’t let a diagnosis of emphysema discourage you too much or make you change your life’s plans. An FEV 1 of 55 is still very good. Find what works for you to quell the breathlessness part, and try to stay as physical active as you can. It’s not only good for the lungs, but also the mind.
I know everyone’s priorities are different, but I would never get rid of my beloved pets because of my disease. Even if it turns out that you have an allergy to your dogs, think of all the joy they bring you. Chances are, removing them from your environment would only have a marginal impact on your breathing.
Thank you again for responding to that post. Here’s to good breathing my friend. Never give up!
Xx Steve
Thank you for informing me that a flare-up is a short term increase in asthma symptoms. I was talking to my brother yesterday, and he was saying that his son was wheezing pretty hard after running in a soccer game. We want to make sure that my nephew is taken care of so that this doesn’t happen as badly again. I guess we should look for local doctors who could help my nephew.