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The Recovery phases of a severe asthma exacerbation

Suffice it to say, I wasn’t exactly a happy camper when I wrote that last post about a recent hospitalization… I apologize for that. At the time, I was roided out of my mind and was still very sick. Dr W helped me get through this awful time by reassuring me that what anguish I was experiencing was a normal response after suffering such a severe flare up, and that my complaints were not really unique.

But what a difference a few extra days can make. I think it was Thursday that I finally turned the proverbial corner. As happens so many times when I think I’ll never recover from a severe attack, I just woke up one morning and all of sudden…Wham! I was breathing better and feeling better. It’s as if whatever was causing my lungs to act up in the first place, just burned itself out and left my body.

It’s astonishing how fast the transformation can happen too. One minute you’re feeling crappy, the next you’re feeling fine. This probably sounds strange, but for a while there it actually felt kinda weird to be breathing easy. All day yesterday I caught myself conscientiously trying to analyze my own breathing to see if indeed I was breathing normal…or I was imagining it. No wheeze, no difficulty exhaling, no discomfort…just normal breathing! So weird, but so appreciated. Id give anything to be able to breath like this all the time. Healthy people take their breathing for granted.
So with this most recent revelation, and after having survived literally dozens of these types of exacerbations, I put all my observations together and made a list.

As of this writing, Ive been able to identify 6 distinct phases that I go through during the recovery phase of a severe asthma exacerbation that required a hospital admission.
Just for fun I call it ” The Recovery phases of a severe asthma exacerbation” . The word hospitalization is important here, because the recovery phase from a severe exacerbation that did not require hospitalization, doesn’t seem to follow the same pattern.

Here’s the list in the order of occurrence. Can anyone else relate or add to this?

1)The Honeymoon phase: This is usually the period immediately following discharge from the hospital and usually lasts 24-36 hours. During this period you’re basically in a daze trying to adjust to familiar surroundings again. You’re breathing remarkably well and it seems like you’re getting better.
2)The Rebound phase: This phase usually starts on the 2nd or 3rd day out of the hospital and is characterized by a general worsening of all asthma symptoms. (So much for feeling better..huh). Now all of a sudden you actually feel like you are re-flaring and might need to go back into the hospital ( many do end up going back in). I think this phase is brought on primarily by the body trying to adjust to the lower levels of circulating systemic steroids (steroid withdrawals), and by other drugs and treatments that your body was used to getting while in the hospital.( ie cont or frequent nebs, bipap, oxygen etc.) There’s also the possibility that you were discharged from the hospital too soon.
3)The Zombie phase: Most of us know this phase well. Sleep deprived,unable to breath and body physically and mentally mangled, the steroids make you temporarily insane. Feelings of despair, guilt, blame and depression rear their ugly heads.
You’re riding an emotional roller coaster. You can’t turn your brain off. You’re body is rebelling too; You feel bloated, your muscles are cramping and you want to eat everything in sight. The intensity of these symptoms are usually steroid dose dependent and can last from a couple of days to a couple of weeks.
4)The Turning the corner phase: This phase mercifully begins usually around the 7-10th day out of the hospital, and can occur subtly without your awareness, or if you’re lucky, can happen with an abrupt onset, literally overnight. In either case, this is a welcome phase that signals you are finally getting better.
5)The Fatigue phase: Pretty self explanatory. You’re body is exhausted from working so hard, and now that you’re breathing easier and have less steroids in your system, you feel weak and sleepy. You’re coming down hard from a not so pleasant high.
6)The Amnesia phase: I’m not sure this happens to everyone, but certainly if you’ve been hospitalized multiple times, you’ve experienced this phenomena. This phase usually begins 1-2 weeks after the “Turning the corner”phase, or about 5-6 weeks after the initial exacerbation began. All of a sudden, it’s as if you were never sick, never hospitalized and never went through the living hell of a severe asthma exacerbation or recovery. I think it’s the brains way of blanking out the bad stuff, so that you can cope better with future attacks.

So that’s my asthma recovery theory/ check list. I think every physician and/or RT or Nurse who takes care of severe asthmatic patients should familiarize themselves with this list to get a better insight as to what we actually go through AFTER we get out of the hospital.

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124 thoughts on “The Recovery phases of a severe asthma exacerbation

  1. Hi Stephen: though I've only had two hospitalizations, I've had numerous exacerbations and have been on large amounts of prednisone many, many times. One thing you noted was the "amnesia" phase. I have that too after recovering from a flare…in fact I stay in that very optimistic mind frame almost thinking I'll never have another flare-up again…..until the next time my lungs decide to crap out. Of course, I have daily limitations from my lungs, but I am used to those and still forget how downhill my lungs can go.
    Anyhow, glad you are in the recovering phase and continue to be on the mend.
    GayleMyrna

  2. Crikes…..down to 20mg of Pred that quickly-is totally epic! Well Done!

    The amnesia stage is terrible. As a stupid dumb blonde female, I cry buckets during this time. I also experience radical deja-vu's. I just cannot believe that I was ever THAT sick.

    It is a stage where I never fail to terrify myself, truthfully. I have often contemplated therapy to get me through this stage. It helps to talk, and my poor J always has to be the ears.

    Sheesh. What we put these partners of ours through!

    Hugs, great post!
    xx

  3. fatigue i can relate to this cuz the first 3 letters discribe ME FAT and i can believe cuz i see it in the mirror every day ???? it's kind of like disfunctional there's FUN in there too thanks for lettin me vent?????? i hate this asthma???? glad your doing good!!!!!! keep it up love ya marsh

  4. Hi,

    Although I've never actually been hospitalized (plenty of ER visits though), I can relate to all of these phases. Ug. My personal favorites being the zombie phase (I feel nuts and want to eat everything in sight…and when is it going to end anyways?), the turning the corner phase (which usually happens when I've given up on it happening), the fatigue phase (majorly have this one…I love the I'm finally better…why the heck am I so tired???), and the amnesia phase (I look at this as nature's kindness), this phase lets me enjoy the good times while I have them.

    Sorry you have to go through this but it's sure nice to know I'm not the only one!

    Melissa

  5. Thank you so much for the information. I just spent 3 days in hospital with an acute exacerbation asthma attack. I thought all of the “after symptoms” was me being overly paranoid. It’s comforting to know it’s normal and that it will eventually pass. Thank you for sharing your exoeriences for us ” rookies”!

    1. I agree- scouring the net for somwthing, anything about "how long is this going to last this time? Why am I not bouncing back from the hospital very fast this time" " etc. and I found nothing until this blog. Well written and exactly what I ned- I am following this course to the letter , now 8 days out from emergency room and a full day in a hospital bed! WELL DONE! and so glad you're on FB

  6. Very interesting. I'm in stage 4 now. People thing when the asthma attack is gone that you are recovered – I'm glad I found your site. I can relate. Breathe better!

  7. Wow, does this describe me. I have been an asthmatic since childhood, but I have only had a 2 episodes in the last 30 years. We have moved to London last July. This is my first spring here. I have been wheezing more since I’ve been here, but I didn’t take it seriously. Then I had a bad episode that put me in the ICU for 5 days and a total hospitalization of 12 days. I hit phase 1 &2 almost exactly as you described it. I did have to go back to the hospital which is where I am at now (4 days). I am hoping to be discharged tomorrow. I am searching the internet for information and found your site. I need to get a handle on all of this. Thanks

  8. I haven't been in hospital but have been seriously contemplating it for the last few days. I'm having the rebound phase after a nasty chest infection &asthma. I was really worried tonight because it's all gone a bit south again after the initial benefit of the prednisolone. I just want to get back to normal and it's hard to be so compromised. Thank you for writing this up as I feel reassured that it's kind of normal. I'll have to be more patient …
    Maria. Glasgow, Scotland.

  9. Hi Stephen

    So nice to read it described so well : ) I'm at stage 5 and it SUCKS! Okay so not so much as any of the other stages *lol* but being on the front desk I'm expected to be chipper and happy and I'm just knackered. I didn't get to the hospitalisation stage this time, just the really bad almost there stage ;p I really hate feeling this weak.. can't wait to get back to running but we had a fire alarm yesterday and the climb down 21 flights of stairs has left my already oxygen starved muscles screaming.. everytime I stand up my thighs turn to jelly. So nice to have a site about this! I usually run around happy as larry with no issues but the turn to winter (in NZ) always catches me out..

    So anyhoo great to meet you 🙂

    Nic

  10. Brilliant article! I recently (1 week ago) had my first asthma attack and ended up in A&E, pumped up with steroids and antibiotics, and ended up in A&E again, 3 days later. Its has felt like an excruciatingly slow recovery and worrying me as to why I am not getting better. Finally on day 7 I am feeling so much better, still not 100's but i can breathe easily. Going out is still a bit of a struggle but indoors I'm fine. Hopefully the next couple of days I'll be able to feel like a normal person again.

    Thanks for the article it has definitely made me feel better, and can understand the process. I was under the impression that you get better a lot quicker and this was worrying me.

  11. I thought I was going insane. I spent 6 days in hospital and I’ve now been home for 3…. I thought I had lost the plot. My body feels like its giving up and I feel like I am living in a dream. I keep crying and cant control my emotions. What a God send to read your 6 stage list. I’m not going mad after all….!! Thank you so so much

  12. I can’t believe I have found this. I actually feel normal now! My asthma is normally well controlled until recently I have had an allergic reaction and apparently wind on the beach triggered the recent exacerbation?? However I thought I was going crazy!! I can’t stop crying. I can’t sleep. I feel like I will never get better! I ml now understand that this is all perfectly normal and the steroids aren’t helping towards these feelings.
    It makes such a difference to hear others are experiencing the same things and that it will get better
    I am showing this to my husband it might help home to also understand what is happening.
    Thank you xx

    1. Sounds like you’re experiencing the nasty side effects of prednisone , it really messes with your emotions. You’re definitely not alone. As you wean off the drug you will gradually feel better. The important thing is that you now understand what’s going on in your body. Unfortunately, most physicians don’t educate or warn their patients about the side effects of these powerful drug.

  13. Thank you for this! I’ve not been hospitalised with my asthma, but I’ve just had an intensive course of predisnolone after an exacerbation caused by the flu, and I’m really struggling with my breathing still, so your description of phase 2 hits the nail on the head. It’s reassuring to know it’s not just me that regularly goes downhill on finishing a course of treatment, and I definitely read through the rest of your points thinking, “yep… yep… yep…”
    Think it’s going to have to be another trip to the doctor for me cos I feel like crap 🙁

    1. Hi Penny, Sorry to hear that you’re not breathing well. Please don’t wait too long . If you’re breathing gets worse you should go in for treatment.

      Judging from your use of the word prednisolone, you’re from the UK?

  14. Thank you so much, Stephen. Am home after a few days in the hospital with the worst exacerbation I’ve ever had. Am so totally wiped and it’s making me crazy. This post assures me greatly!

      1. Hi I had a servere acute asthma attack 4 days ago my gp got me nebulised straight away on perdnisolone and doxycycline but I’m still very breathless.. Felt great after having the nebuliser but next day and since I’m still struggling.. I will finish my medication on Sunday if I’m no better I will have to go to Gp again..as I’m still exhursted and I can’t function properly.. When will it get better it’s so not me feeling so down.

        1. Sorry to hear you’re not feeling well. You should gradually start breathing easier, but an uncomplicated asthma exacerbation can easily last a week or two, sometimes longer. You’ll experience shortness of breath in various degrees throughout the recovery period. If your symptoms dont improve or they get worse, you should go to the hospital. Good luck!

  15. Thanks for creating these phases. I was feeling very down and frustrated because I am still feeling absolutely exhausted six days post hospitalization. I’m still taking 50 mg of prednisone daily and feeling the effects. I have another full week to go at this dose before tapering down. The doc at the hospital said I should be good to go back to work in just two days. This after needing to be airlifted to the hospital and spending time in ICU. Your phases let me know that what I’m going through is normal. I no longer feel guilty about needing more recovery time.

    1. Sorry to hear that you’re having a rough time with your asthma. Most physicians dont understand just how difficult it is to recover fro a bad flare. Going back to work after only 2 days out of the hospital is ridiculous.

      Take care

      1. Hello again, well I ended up back in hospital for eight days. I have an awesome asthma doc and he admitted me within 15 min of seeing me. Am home now and still sitting between phase 2 and 3 depending on the day however I seem to be finally moving forward. My doc warned me that it would likely be a longer recovery than what I am used to. This time I have been encouraged to take it easy rather than overtaxing myself. My biggest challenge is trying to balance resting and at the same time ensure I am pushing my lungs enough to regain my strength. Do you have any articles or info on this topic? Or maybe you could share how you decide on how much exercise is appropriate?

  16. I find that the fatigue hits almost immediately after the attack, while the depression and despair hit during the attack.
    In the ER today, I could feel the despair/ helplessness/hopelessness hit like a wave, and had to fight mentally to overcome it and stay calm. My attack took place out of town, and I had to walk 15 minutes to the ER, as I couldn’t talk on the phone (in my hand!!) nor would anyone respond to my attempts to flag down help. I truly didn’t think I would make it–inhaler didn’t even make a dent.

    At this ER they did things backwards from at home. Home gives nebulizer first, asks questions and sets up tests while the neb is working. Here they did all the extras and THEN (about 7-8 minutes later) did the nebulizer–over 35 minutes from the start of the attack. (Gee, why would I get depressed?)
    I was breathing so loud people were coming into the hall to look. AND I had typed into my phone that it was an attack, and that the inhaler (also with me still) didn’t help.
    Now I’m home and so drained. I have just done an extra home neb treatment as I was starting to feel twitchy. And the really depressing thing? We still haven’t figured out what sets it off!

    1. Sounds awful. In the future if I were you, I’d carry a mini medical record with you the that briefly describes what I kind of asthma you have, what makes it better and who to contact during flare, I call it the intro letter and I use mine all the time. I use one similar to this one

  17. This is so Apt.

    Not hospitalised but Asthma Exacerbation and Anxiety had made me so ill. It mainly started after eating some Almonds late one night after watching a movie. Not normally allergic but as my cuz mentioned, it may have been a bad batch from the processing and Toxin content.

    Whatever the reason or rhyme (Asthma doesn’t need one normally), I am so glad for your posts. Made me laugh at myself too.

    Prednisolone 8 x 5mg was my recommended dose. I could only do 6 and even that was hard. Felt like all the things you mentioned. Crazy this medication. Now stopped that. But I did make a mistake the day after receiving Meds of taking everything… My body was in a battle.. Steroids then Ceterizine Hydrochloride and Lansoprazole for the Acid and inhalers (I felt like a Lab RAT). Never did that again! Still got this lump like feeling so not eating all the mixtures and everything in sight as the Steroids makes you do. I am on Water, water, water and may have some ginger tea, cucumbers later and grapefruit throughout the day. Bread and biscuits and all sorts are just sending my whole body into a discomboobalated state!!! Resting but wanna Dance, Lying down but can only sit up. I know it will all end with WHAT WAS THAT ALL ABOUT! Only happens once every one or two years but I am grieving the loss of my grandmother recently so maybe the late grief triggered the stress levels. Love my Grandmother and I thank you Stephen for all your Posts. Its funny and also very very helpful. God bless your health. J

    1. Sorry to hear that you’re battling the side effects of prednisone ( or in your country, “prednisolone”). For sure, the drug does strange things to your body and to your emotions, but also helps you breath easier. It’s a love-hate relationship.

      Hope you feel better soon.

  18. Thank you for your explanation of asthma attack recovery. I was hospitalized on 9/8/14 with a severe asthma attack. I am 65 years old and ended up calling 911. I was admitted and given medication and nebulizer treatments. I was discharged 2 days later. Since then, I still use my controller inhaler and have not had any other attacks. However, even now, I don’t feel 100%. I feel tired and short of breath after walking maybe 300 feet. I am not taking any other asthma meds. I feel anxious and somewhat depressed still. I will be glad to feel good again.

  19. thank you so much for explaining your phases of the asthma exacerbation I know exactly what you’re talking about. you have basically explained me for the past few weeks after my hospitalization to the exact. now if I can only figure out the best time for me to go back to work on graveyard shift as a nurse and be able to maintain.

    1. Sorry to hear that you were hospitalized for asthma. I hope your gradually feeling better. Sometimes getting back into the swing of things can actually speed your recovery, just dont over do it :]

  20. Hello Stephen reading your account was the first reassuring thing I have seen in weeks..
    In June of this year I was in a asthma study and had a flare up but was told for several it was not my asthma. I have gone to cardiologist, an allergist and a puminologist and I thought I was crazy because they all could not believe I was not feeling 100% after a 10 day taper on prednisone. I went on a second course of prednisone two weeks ago but have never felt recovered. I am off now and get a pretty significant attack twice a day. I not sure what to do? I feel a hospital stay might help but docs don’t feel it is severe enough? I feeling fairly depressed and not sure what to do. This is worse my asthma has ever been. Right now my chest is tight and I have already done combivent and 6 puffs of abutorol.

    1. Hi David,

      Sorry to hear that you’re not feeling well and that you seem to be getting the run around from your doctors. You mentioned an asthma study, may I ask what the name of it is and where you did it?

      Im not sure why they would tell you it’s not an asthma flare, if you indeed have asthma and they are giving you steroids to treat it. Could it be that you have VCD or something other than asthma? They’re are a lot of mimic diseases. Have you had a PFT done recently?

      Im not sure where you live, but if you can get to Pittsburgh PA , I can refer you to a wonderful asthma specialist. You probably saw her name on my blog, Sally Wenzel.

      In the meantime, if your breathing gets really bad ..screw the doctors….GO TO THE ER! They have to treat to you.

      Wish I could be of more help, but it’s difficult assessing someones situation via email

      Good luck

      Steve

      1. Hi i jus got out ov hospital yesterday after 6days i still strugglin wen i move or walk i ad iv antibiotics an steriods an am now on steriods an antibiotics at hme i ad infection on my lung an ad a very serious exacerbation but ive always bin able 2 breathe easy after such an attack im nt convinced ill eva b normal again an i dnt wanna live life bein able 2 nothin

        1. Iam a severe asthmatic sorry 4got to mention that im 38 an have also now on day 8 of no smokin an feel so much worse this recovery sucks will i ever breathe normal again or is my days as a manager over??

          1. Hello, Im Sorry to hear that your asthma is making you feel miserable. A bad attack can take several weeks to clear up. The first week after coming home is always the worse, partly because of all the steroids, but you will eventually begin to feel better. , Hang in there.

  21. This has been so helpful and informative and so spot on!!!
    On Sunday I was taken in to A&E as couldn’t breath well. Had a terrible cold and chesty cough but then my asthma was so bad they put me in a nebuliser and send me home at 4pm (I went in 11.30am). At 6pm at home I lost it just couldn’t breath so returned to A&E and was taken straight away to the rests part of the department. I was given salbutamol,hydrocortisone and antibiotics. I then had a doc do my arterial gases twice ouch that hurt!!! At this point I thought I’d go home as my sats read 95-97 one under was 16-24 and heart one kept going 110-126 I know nothing about med stuff just looked a lot at it. I was told I had a heart murmur so was scanned and x rayed then Echo (?) scanned again don’t know results of this.

    I was the sent to the most hellish ward on earth where no one would try and communicate with me (I’m deaf) I was given oxygen, prenisipole steroids,anti biotics, co amoxilav and lots of nebuliser treatments,all through Monday and Monday night. Everything I got up for toilet I nearly passed out as breathless. But ok and better in bed. On Tuesday morning doc came round and said as my oxygen levels now good I can go. (Hello I’m on oxygen that’s why they are good???). Anyway I’ve been slung out on my notes its says was a pneumonia related acute asthma excarbation (sorry can’t spell it). I feel like pants. My chest feels like it’s got a rock on it and I’m so knackered walkin just round the bed. I have GP this morning and my husband I’m sure thanks I’m a hypochondriac :(. I need a sick note and don’t know what to say??? Also is feeling like I may die normal or am I being neurotic?? Be honest.

    So from a very confused girl from across the pond thanks to reading. I’m 38 by the way. 🙂

  22. Thanks so much for this- I thought it was just me who suffers in recovery. I’ve just had my 1st asthma attack for 25 years. I’m gutted as I thought this was all well behind me. I’m experiencing the phases you mentioned, but would add something about the trembling phase, which I am currently becoming re-acquainted with! I realise from reading your blog that I am very lucky that my symptoms have been well controlled for so long, so thanks for getting me over the self pity phase & really hope that you are doing as well as possible.

  23. After several days of looking up forum posts and articles, I finally found experiences and comments similar to my own. I started to get sick earlier this Christmas which caused shortness of breath. I was given a few rounds of antibiotics and felt no much difference. I finally went to a pulmonologist and was told that it was probably untreated asthma since I had to symptoms of infection.

    I’m on day 7 of taking 10 mg of prednisone for 10 days, along with a long acting inhaler (seretide diskus) once a day, and rescue inhaler (combivent) three three times a day. Does the treatment sound right? Should the prednisone be in a higher dose? I’m afraid of my symptoms getting worse after finishing the prednisone.

    Thanks for your article!

    1. Hi, Sorry to hear that you’re having problems with your breathing. You didnt mention in your comment whether you had a history of asthma, and if so, how long ago and how severe. Assuming that you were experiencing actual asthma symptoms, 10 mg of pred per day usually isnt enough to treat an acute flare. The typical starting dose is 40-80 mg per day with gradual taper. Also, combivent at only 3 times time per day is on the low side if you’re using it strictly as a rescue med. Unless these kinds of meds make your heart race, youd probably be better off taking albuterol as needed.

      Take care!

      1. Thank you for replying Stephen! Wish I could donate to your site for the service you do for the community…

        I had asthma that was trigger by allergy for years now. It was controlled by staying away from dust mites and pets. My symptoms usually got better after using my rescue inhaler. I also had a few episodes of bronchitis which went away after a few days of antibiotics.

        This Christmas I got the same symptoms of bronchitis (shortness of breath that wouldn’t get better with my inhaler) but this time the antibiotics didn’t take care of it. This is why my pulmonologist thinks is just asthma that wasn’t properly treated.

        I just finished my ten days of 10mg of prednisone, and my symptoms haven’t disappeared yet. I read that it can take weeks for asthma to go away. Based on your experience, what should do next? I’m worried about having another acute attack now that I’m off the prednisone… Currently I’m only on seretide diskus, combivent , allergy medicine(cetirizine), and omeprazole.

        1. Could be a virus that set you off. It’s a really common trigger for asthma flares. If it is a virus, it could easily take months for your system to return to normal.

          It’s tough to give advise from what little I know about you, but If your symptoms are tolerable, Id say keep doing what you’re doing. You might want to try nebulized albuterol/atrovent instead of the combivent inhaler. If you feel you’re not getting better and you’re getting more short of breath, you probably should bolus with a much higher dose of steroids. Again though, you really need to run that by your doctor.

          Hope you feel better soon!

          1. You’re an amazing man, Stephen. Not many people care about others while suffering as much as you have.

            My symptoms are uncomfortable and persistent but so far they are tolerable. My last dose of prednisone was 3 nights ago which was the reason of me freaking out about getting another flare.

            I will continue my treatment as prescribed and I will let you know in a few weeks how it went.

            Thanks again!

  24. Thank you for this breakdown of phases Stephen. It is spot on. I was ill for ages from Sept 2012 and didn’t get properly better until after Christmas, and due to the failings of the NHS I got turned away from A&E. Currently off work with another flare up after catching the first cold I’ve had in 2 years. No admission but the GP wanted me in hospital and the hospital said I wasn’t ill enough. Luckily my GP is great, and I’d rather be at home unless really desperate, but it is only yesterday, after a 5 day course of prednisolone 40mg and a 2nd 10 day course due to end tomorrow that I feel I have turned the corner. Today breathing is good and I feel well, but I’m just SO tired! I just hope that I don’t dip again when the prednisolone finishes again. Still on symbicort 200/6 8 puffs a day and montelukast (Singulair in USA I think?) at night. I need to start building up my strength so I can reclaim my waistline – what is with the above the waist weight gain? I look deformed! Many thanks for your insight Stephen. I’m glad I’ve come across you.

  25. Sorry to hear that you’re struggling, but it DOES get better.
    The weight gain is probably just water retention, it happens to all of us. The trick is not to go crazy with salty or sugary foods, though that’s usually what we crave while on the pred.
    Take care!

  26. Hi, my name is Debra. I was diagnosed with asthma when I was 24. Would get severe fast hitting attacks and spend a week or two in hospital. I am not 44 yrs and have had only minor issues with asthma. A bad cold or pregnancy I would need puffers.

    This past Dec 9th I had a quick but nasty cold/flu for a few days. No asthma attack but breathing got more difficult. I was on 50mg Prednisone, Symbicort and Ventolin. I developed a dry constant cough. Walking or talking triggered it. I kept trudging along but tired trying to breath. Kept going back to doctor and we tried a round of antibiotics. Nothing worked. Kept pushing and got through Christmas and New Years with difficulty. By now for weeks I had only done what I had to. I was taxed out. I have a 7 and 9 year old who have busy schedules.

    For 3 days I developed a productive cough but clear mucous. I never felt sick through all this except the beginning. Never a full blown attack. Jan 9 I ended up in ER in respiratory distress. The RT and nurses were hopping around me. The doctor was a complete idiot and said I’m doing everything at home so I could go. Forgot I had switched to neb sat home 2 days before this. The nurse begged me to come back at midnight when this idiot dr left. I was too tired. I was shutting down. I left and thought I wouldn’t make it the night. My sister was crying on the phone listening to me and her and my Dad begged me to go to another hospital. My husband had never seen me suffer with asthma. He thought I could tough it out and it would pass.

    Dec 10 back to hospital again with the respiratory distress. Again RT and nurses hopping but 2 drs came quickly. I was admitted. Now on IV prednisone and nebs. Added PPI for reflux although I’d had surgery ( Nissen Fundoplication in Feb due to severe reflux). Had to be on oxygen. I was not responding to treatment for days, even a week later. Tests they ran were EKG, Echocardiogram, CT scan, VQ scan ( they thought I had a clot in my lungs), chest x rays ( all normal). Bloodwork skewed. Blood gases showed hyperventilation. I’d been breathing fast for a month now. One blood test showed indications of a clot. I developed some calf pain. Had ultrasound and found a clot but in a superficial vein in my leg. Had a Broncoscopy 4 days ago. Will get results Tues. They did a Brinchial Lavage and Brush and took a biopsies. A reddened area in my right lung showed then. I had Atelectasis of both lungs. Otherwise it looked ok. Dr ran 2 blood tests for autoimmune and Eosinophils along with another disease that attacks lungs and kidneys. Again find out results Tues.

    I was stable and off oxygen but low o2sats. Sat at 92-93% room air. Dr ok if I was 88% or above. Not sure why. Went onto puffers. My bed was needed so because I could make it to the bathroom and no one knew what was wrong I got discharged in day 10, 2 days ago. I have o2 at home which I use once or twice a day for about 20 mins. Clears my head and decreases the dizziness. On all meds except one for lung as I developed an allergic reaction. Got a sinus infection so been on antibiotics but today was extended 5 more days as pain worse.

    I’m a prisoner in my home. Can’t go up to bed so I sleep on the couch so I can incline. Everyone else caring for my kids. I’m very active and this is killing me. I’m terrified. I didn’t sleep for over 2 weeks until I dosed for cat naps only. Drs were desperately trying to get me some sleep. I am doing better but struggling. Legs are like lead to walk. Hoping for answers Tues but scared too. What if it’s something really bad? What if I never recover? I will go to a larger more advanced hospital if no answers and no better Tues. I’ve never gone through this. They say I don’t have COPD, which I have no risk factors for, but terrified. I watched my Mom die from this. She smoked.

    Sorry this is so long. Tried to just put highlights in. Anyone go through such an ordeal or for so long? They say I pushed and compensated so long that I could have died. I kept thinking tomorrow has to be better. It can’t go on like this. I was wrong. Thanks for reading if you made it this far.

    Debra

    1. Hi Debra, What an ordeal. Sorry you had to go through all of that. For sure you should go to a bigger hospital, and if you havent already, get hooked up with a good pulmonologist. You mentioned having your eosin count checked, if it was high , you might find this video interesting. My lung doc, Sally Wenzel is doing research in this area. Hope you feel better and can get some answers soon.

    2. Hi Ms. Debra,

      I’m so sorry about what happened to you, I hope you will no longer have a severe asthma flare-up. I know how it feels to have a severe asthma attack. I was diagnosed as early as 3 years old with an asthma and I am now 23. I just had my severe attack just last month. I am on seretide maintenance & just shifted to symbicort a month ago.

      My 1st attack this 2015 was fine I am able to control it with my inhaler rescuer, I was given mepresone-steroids for 5 days and I am totally fine. I thought I was then okay, I do my normal activities like walking but I observe some breathless. I feel discomfort.

      After several days I had my endoscopy test. I was diagnosed with GERD/Heartburn. After 3 days I had my severe asthma flare-up that I never experienced it before. I had 4 doses of nebulization every 30 mins & every 2 hours round the clock for 3 days and every 4 hrs for 3 days. I also had medrol 16 mg. twice a day for 5 days. I was not rushed to the E.R. because my family members thought it was just an acute asthma attack. I was really grasping for an air and hyperventilating my mom was just asking me to relax while giving me salbutamol through a neb. On my 7th day i was fine, but I have chest pain lasted for 1 week again and I’m still feeling breathless, but i was okay again. I went back to the doctor and I was told that i am fine and I can do the walking.

      Days after I had heart burn for 3 hrs. at night time. It really hurts. After 5 days I had an acute asthma attack again, this was just last Saturday and until now I can still feel the tightness of my chest and still having a little difficulty in breathing. I just went back to the doctor yesterday and had my pft test & it turned to be normal and i was told again that I will be okay and that i am undergoing with an asthma anxiety.

      Does asthma really lasted for a week or two? Does Asthma Anxiety affects a fast recovery? Does asthmatic patients has always a possibility to have a severe asthma flare-up even under maintenance/steroid inhalers?
      I will be glad if anyone could help me answer this questions.
      Thanks in advance.

      Madel

      1. Hello Madel,
        Sorry to hear that youve been sick. GERD is a very common trigger for asthma flare ups and can make the exacerbation more severe.

        *It can take several weeks, sometimes months to fully recover from a bad asthma exacerbation. During the recovery period
        *Yes, anxiety can certainly intensify symptoms, but inflammation in your airways can also make you feel short of breath, even if your PFTs are normal.
        *Yes, you can be on maintenance medications and still experience symptoms. Again, it can take a long time to completely recover from an exacerbation.

        Good luck to you and thank you for writing!

    3. Hello Debra,

      Sorry for the delay in responding and Im sorry that you had such a rough time with your exacerbation.
      What you describe is not out of the of the ordinary for someone hospitalized with asthma and/or unexplained shortness of breath and hypoxia. Im glad you’re tests were negative. It can take weeks, sometimes months to recover from a bad exacerbation. Hopefully you’re feeling better now:]

    4. @Debra’s comment. This is me right now except I am in Day 10 in the hospital. Still can’t catch my breath and have spasms in my airways.

    5. This blog is the most helpful information I have been able
      tonfind online….as I mentioned today is day 10 in the hospital and have done IV Prednisone and Nebs every 4 hours, Atrivan/Saline, Advair 2x 2 a day. My asthma symptoms seem to be better but the shortness of breath from my spastic airways makes feeling better like a yoyo-I felt I could go home yesterday and today feels like 3 days ago-worse! Such a frustrating process and the hospital is so eager to send you home base on oxygen levels. This is with me just sitting in the bed. Taking a small walk can take my breathe away from 5.5 hours to 1.5 hours depending on how my day has been. My chest fells hard from the muscles spasms. Has anyone found any added relief with muscle relaxers during this phase? I get taking any extra medications with the Prednisone but I am just trying to get better. I have a 3 and 10 year old at home and can’t function like this around them. Quick background-life long Asthmatic but with only a few ER visits for an attack due to being outdoors to long or a dust or allergy trigger-got nebs-Prednisone In ER and off I went. I haven’t had a minor attack in years. This is my first exasturbated attack. I wa on advair but probably not enough and then I got sick with a bad viral infection-add stress/perfume in the office/reduced or no ac in the office and my airways just gave out. So many ER/Dr.’s visits and the couldn’t figure I was already in distress because the tell tale wheezing was a minimal. My airways had already shrunk up. The ER sent me home the Friday and I went back Saturday and they wanted to send me home and I refused-I was struggling to catch me breath and I could feel the spasms. Some lasted hours. They did a CT to rule out a blood clot and then sent me up to a room due to the exhasburated asthma. I hope this is my first and only bad attack. I’m 41 and have had asthma since birth. Any advise is appreciated-especially on how to recover faster and how long the process is before being released. Thanks. Prayers more than welcome as well.

      1. Sorry to hear you’re having such a rough time with your asthma. Unfortunately, it can take quite a while to start feeling better after a bad exacerbation. One of the reasons you feel crappy and short of breath despite not wheezing anymore, probably has to do with inflammation ( swelling) inside your smaller air passages. While the large airways tend to relax quickly with medication, the smaller airways don’t. If you have an infection going on somewhere, that can complicate matters as well. I hope start to feel better soon !

        1. Thanks for the information. Still have shortness of breath-today is one of my worse days and this is now 30 days from the day I went to the hospital. My Dr. Has me slated to go back to work in 3 weeks, hopefully I feel better by then or I may need to be off longer. I find without the Prednisone your body struggles! Taking it day by day. I haven’t felt well enough to go for a walk although tomorrow I may try even it’s for 5 minutes.

          1. Back to the ER this time a different hospital. Still have shortness of breath and tightness in my chest but oxygen is good and wheezing to a minimum but feel like the flare up the first time. I can feel the spasms in my chest. Also went back to the ER the 17, was given one dose of IV Prednisone and then pills of 50mg at home which I’ve been on for two days now and no improvement. PD couldn’t figure out the issue either-was given more Prednisone and told to come to ER if shortness of breath doesn’t get better. This is beyond frustrating.

  27. This blog is amazing ! I just had my first asthma attack that I couldn’t rebound from without hospitalization . I have been going through the stages and it is so helpful to see that I am not alone and that this is normal. I am an emotional roller coaster the last 24 -36 hours and it sounds like we all do it.,,, thank you thank you thank you

    1. Hi and thanks for the kind words.

      Sorry to hear about your hospitalization. Yeah, unfortunately recovering from a bad flare is often very difficult, but thankfully things do eventually get back to normal. It’s hard to understand just how tough it can be unless you’ve been through it.

      Here’s to a speedy recovery!

    2. You are not alone! I didn’t think mine was so bad.Now I am really sick.hopefully it will get worse before better and I am ready to be WE have to be patient with o ur bodies.God vlless everyone!!!

  28. Thank you for sharing your experience! I’m recovering from my first hospital stay due to asthma exacerbation. I’m on day 7 home and still can’t walk far without getting winded or lightheaded. I’m so glad I found your blog, and especially appreciate the recovery phases.

    I was diagnosed with asthma 9 years ago, though I know I had symptoms prior. The condition worsened when I moved to the CA Central Valley – not a good place for healthy breathing. I’ve been amazed at how little is known about asthma. Doctors know how to treat it, but there are so many possible triggers. I know my symptoms increase when I’m sick. I was recovering from bronchitis and a sinus infection when exacerbation took over. When I asked the doctors why it happened, they said that sometimes it just does. Not a very scientific answer, or a comforting one.

    With this episode, I’ve committed to make better choices to eat cleaner and strengthen my body. I’ll also continue to read your blog. Again, thank you.

    1. Hi and thanks for writing.

      I’m so sorry to hear that you’re sick. What you’re experiencing is totally normal for someone who is recovering from a severe flare. Bronchitis and sinus problems are huge triggers and are super common in asthmatics.

      I know what you mean about the lack of knowledge about this disease, I’m trying to do my part to change that. Educate yourself as much as you can about this disease and be proactive. If you don’t already, you really should see a pulmonologist who specializes in the treatment of asthma.

      I hope your recovery is speedy!

      All the best to you,
      Steve G

  29. Thank you for this site. Like others have said, it is comforting to find others that can relate to what I go through.

    I’ve had asthma since birth. The last few years, its really flared back up. I’ve been to the ER 6 times in the last 2-3 years and I should have gone probably another 5-10 times. I haven’t had health insurance in a few years. In Indiana, its hard to get on health insurance. So I also haven’t had a rescue inhaler for who knows how long. Its nothing for me to make it through a 24 hour asthma attack or even longer. I feel like I will die every time but I’ve done it so much, I know I’ll always make it.

    I also experience the fatigue after the attack where I can’t even make it to the bathroom without having to sit down and gasp for air. I’m at that stage today. I’m trying to get my credit better and I just can’t afford to keep racking up ER bills between $600-$800 so this latest attack, I didn’t go and it was hell.

    Without an inhaler, I usually drink either black coffee, green tea, I have a salt inhaler which helps sometimes, other times it does nothing. I mainly use the Primatene Tablets which do work most of the time if I can take them before the symptoms really hit. They don’t really work when I wake up in a full blown asthma attack. I am experimenting with Ginger as I heard it works wonders. For now all I can afford is Ginger Ale which I’ve been told, the main brands, don’t even have real Ginger in them so I’m not sure how effective it will be. Right now its not really helping.

    I ordered some Magnesium Oil from Amazon which I just learned today, works wonder. I never realized Magnesium was so important and why don’t doctors mention this? Do they just not know about it?

    Ironically, I work for Indiana Medicaid, have been there about 13 months but I’m still a temp because the company is cheap so I still have no health insurance.

    I also live with family members who smoke, light incense, use bleach and whatever else so I realize, I’ll never fully be able to control my asthma until I move.

    For now, I’m going to buy an air purifier to help filter out the cig smoke, dust, etc.

    When my magnesium oil comes, I’ll rub that on my chest for a few days and come back and report. I read thats the best way to get the magnesium in you, versus taking it orally. If anyone else has tried it, let me know how it works out for you. The forum I found that on, everyone basically said its helped them a great deal. They just use it everyday and put it right on their chest.

    Again, thank you for this great blog and all that you do.

  30. What a breath of fresh air (can’t resist a cheesy pun!) to discover and read your blog! Fantastic stuff! I had a few giggles in the sheer sense of relief that i was somewhat normal in this abnormal state! Forgive the following novella, but tired wired and can’t shut up!

    Just got released yesterday on bail after 15 days in prison (the wheezy lung ward, just barely escaped IC after a backslide after 5 days!) and feeling a little loopy and disorientated, as well as still SOB and wheezing like a pinwheel. While i have had asthma since childhood, this was my first “big one” that required 2xIV instead of oral steroids, wasn’t responding to standard treatment and went quickly downhill instead of upwards like it should (asthma not playing fair!) Having had a parent who died from asthma when i was young, i never saw myself as that bad – even though i have been to an ER numerous times and have had past attacks that were somewhat stubborn. However, most of my adult life my asthma has been so well controlled, i forgot it ever needs anything more than an extra symbicort or albuterol. How easily we fall into denial!

    Naturally, there were those signs that are easily talked away “the pollen must be bad today”‘, “bit of smog in the air”, or whatever other excuse i could think of. I swim middle distance and needing to stop and leap out of the pool for an inhaler… Apart from an aside mention to my doctor when i saw him for something else, i didn’t see those signs infront of me until i was breathlessly telling my rather concerned partner that i “didn’t need to go to hospital yet, just another puff should settle it down…”

    I am also rather calm in an attack, because i always thought panicking is a really quick way for things to deteriorate to the point you can’t get the help you need. And i never like to worry those around me AGAIN, especially if it’s nothing… And hey, those o2 sats are fine, nothing to worry about!

    It was rather disconcerting then, when all of a sudden it went down south, not just the initial warm up attack, but the unexpected later big one. I don’t remember much, but confusion and lots of activity around me and not understanding what was happening. But all the same, i still had enough of me present when they told me “we’re not going to let you die” to think “i should hope not – this is a hospital, isn’t it?” 🙂

    I am still quite sick, but well enough to be able to piece together what happened on those confusing days. In and out of some major ‘roid mood swings and emotional times, but reading your blog has really helped me understand it all and see it all from a better place. Knowing what is going on helps me process it all, and that helps me feel much better about feeling still uncontrolled. Battle scarred, bruised and moon faced; with timetable nebs, inhalers and pills, catching up on the latest asthma stuff while still not sleeping. But on the positive side – it’s nice to not have to discuss my bathroom habits with the rest of the world!

    Deciding when it’s time to go to hospital is always hard, especially if you have had asthma over the years. Sometimes your judgement goes out, or you second guess yourself. Having had years between attacks and being fairly well controlled can make it even more a challenge. But i was lucky to have been where i was when it did, so i hope next time i will not hesitate on my gut and try to tough it out (until morning, or whatever). Complacency is more dangerous to me than panic, it would seem.

    So, i’m somewhere in the rebound/zombie phase right now. Food is just coming back though still tastes like cardboard, the inflated ballooning of my body, laughing and crying at the same time, making inappropriate jokes and picking arguments with family… and chest and back muscles feel like they’ve been run over by a truck! It’s good to know that these are all normal and will end… Soon!

    Thank you once again!

    1. Hello, Wow…what an ordeal. Sorry you’re having to deal with all the fun steroid side effects. ( I just weaned off a round myself.) Im glad you made the decision to go to the ER. Hopefully the worst is behind you now, though I can totally appreciate how you probably still “feel” sick.
      Most people, unless the’re impacted by the disease ( physicians included) have no idea how severe and devastating asthma can be. I’m on a mission to change that.

      If you need someone to communicate with while you’re dealing with these steroids crazies, feel free to write. I can’t guarantee I’ll be able to respond right away, but I do my best to read all of my mail as it comes in.

      Stay positive and focus on getting back to your normal routine. And remember, you’re not alone! There are thousands of us who live through this same scenario every single day.

      Best,
      Steve

      PS.. Are you in the US?

      1. I think your awesome Stephen! The fact that you set this platform up, help and guide everyone while you have been through so much yourself it very commendable.

  31. “All of a sudden, it’s as if you were never sick, never hospitalized and never went through the living hell of a severe asthma exacerbation or recovery.”

    I get this all the time, but I think I get an earlier form? Once I’ve been through resus and had everything and been stabilised and I’m on the ward…my mind starts messing with me, telling me “it can’t have been that bad” or “last time you were with CCU but this time you’re just on a ward so it can’t have been that bad this time” or “did the resus doc really think you had asthma?” and stuff like that which is horrible. Hospital nights are depressing enough for me — I’m 18 but somehow I just can’t get past that — but then this hits and it sucks. I think I also get a feeling of attachment or whatever to the docs in resus because they saved my life…but it’s like they save it and they’re gone.

    I’ve got that particularly harshly this time (came out on Thursday after 10 days in hospital, with one mostly panic attack in the middle of my stay which I thought was asthma but wasn’t..it’s like I can’t trust what I’m feeling, although it was slightly different, and what they heard with the stethoscopes was air movement, something they never hear in resus so…) and I’m just trying to get through that post-hospital depression along with AS resits and A2 exams and it’s just..ugh.

    Sorry for the rant, I guess I just needed to get that out to someone.

    1. Also, I have atypical asthma so I don’t wheeze and my sats are always good (even though my ABG could be totally deranged and I could die at any minute..thankfully that hasn’t happened yet but my point is it could) so I think there’s less for me to hold on to.

      Can’t speak? Probably could have if I’d tried.
      Tight chest? Anxiety.
      Peak flow down? That’ll be me subconsciously making it low.
      Responded to nebs and steroids? Placebo response.
      Responded to magnesium? Placebo response.
      Doc said x could have ‘contributed’ to this? Clearly he doesn’t believe it was an asthma attack.

      It’s all bull of course. If the doc thought I wasn’t having an asthma attack, he wouldn’t have given me nebs and magnesium. If he thought I was faking it or it was something else, he would have took my dad aside and told him. But I can’t hold on to something (“I was wheezing, of course it was asthma” or something like that) because that isn’t how I present.

      I know this is an odd term to use, but the only consolation (that I’m not just a great big time-wasting faker) is that my consultant (rushy and abrupt though he is), all my nurses both at the surgery and the hospital, every doctor I have ever seen, and every emergency department staff member I have met so far, has thought I have asthma, and those along with a clear chest CT, somewhat of an expected result from meds tried (they are investigating VCD as a possible reason why my meds don’t always have the expected level of result, although generally meds don’t in me, even ondansetron for nausea was no better than a sugar pill), expected peak flow patterns, and 5 ED trips (4 life-threatening attacks and 3 admissions) in 9 months can’t all be wrong!

      I don’t know anyone else with brittle asthma, or who has even been in hospital with asthma let alone through resus (except my best friend but her last admission was as a baby), so I don’t really have anyone who gets it.

      They can imagine it’s scary being in hospital, or upsetting, and that it’s a relief to get out, and a drag to do all my meds…but they can’t understand why being in hospital can be ok during the day, or irritating because you’re missing college, or the dark endless pit that is the night, or that the songs which got you through resus and the early hours of the mornings when you couldn’t sleep are the same songs which make you miss the certainty and closeness of help, or that coming out is actually scarier than going in, and the drag isn’t just doing my meds but actually wondering if they’re enough. When your peak flows are back to yellow but you still feel like cr@p and you just think “I have no reason to feel like this”. How you can wish — to an extent — that you were back in because life outside feels so insecure and…

      And it’s all the little things too, like that feeling that even if things felt really bad you would feel so stupid calling an ambulance or going back to hospital because ffs you *only just got out*. Or the “I never got to say a proper thank-you” feeling. Or going back to college and having all your classmates ask where you’ve been, and — even worse — the looks from your tutors and the “how are you now”s and “you’ve had such a bad time”s. Or all the catch-up work when you barely even feel like dragging yourself between lessons. Or being so embarrassed by your own musical tastes that you mute your laptop every time an HCA or nurse comes into your room.

      Or even missing the routine or the little things you did at visiting time; for my family, that was rolling down to the sandwich bar (little 24-hour seating and vending machines area attached to the restaurant) with ready meals and sticking them in the microwave and playing games over dinner.

      And they are a million miles away from understanding how it feels to have someone swoop in and save your life like a Superhero..but then for them to be gone and never seen again hours later. It almost feels like you’ve been abandoned and left to fend for yourself. Even if I could somehow tell them that, they would have no idea. It would sound ridiculous. They’d tell me it’s crazy to get attached to someone you saw for such a short time. They’d tell me to get over it. But it isn’t that easy.

      1. And lastly, the thing I think made it worse this time and something I am struggling with is when I was in resus, I had an SVT episode and the doc — this great guy who actually seemed to care and told us when he had to go off shift and explained everything and worked around my chest binder even though it was in the way (I am a transgender guy and the binder helps others to see me as who I am and helps me feel better) — had to do a carotid sinus massage. I have possible PTSD and that side of my brain took right over and started screaming “he’s going to hurt you” and “he’s strangling you”, and although the doc kept saying how well I was doing and asking me if I was ok, all I could do was nod because my brain tried to convince me that if I told the truth and told him to stop then he would seriously hurt me.

        Which of course was nuts given that he was a great guy, and my dad was next to me, we were on a resus ward for goodness’ sake, and I was hooked up to so many monitors they would all know straight away if anything untoward happened..but it really shook me and it has stuck with me, entwined with the feeling that he saved my life.

        I don’t know..I am ok with hospitals, and am personally considering either medical research, or becoming a doctor myself. I don’t hate hospitals per se..but nights are awful and coming out is mixed up with all these emotions I can’t get rid of. I know I will get over it in time, I always do. But for now it just feels endless.

        Add to that my lungs just feeling so tired…

  32. I know this is an old post, but I’ll comment anyway in case you’re still checking. I’m glad that I happened upon this. I was diagnosed with asthma yesterday, when I went to urgent care about 5 hours after my breathing problems began. I had no idea that I was experiencing an asthma attack. I had just participated in a 75 mile bike ride, and was convinced that I had just pushed myself too much, and that I would catch my breath eventually. I’m so glad that I finally decided to go. The doc there would have preferred for me to go to the ER, but I don’t have insurance, and he complied with my request to be treated there instead.

    I got a nebulizer treatment. After that I could breathe much better, but definitely not 100%. I could at least speak in full sentences without taking a breath between each word. I was prescribed a 9 day prednisone regimine, which I started to take right way, and an albuterol rescue inhaler, which I took a few hours after the nebulizer treatment. I put off the inhaler for too long, I think, because it was expensive and I thought I could get away without purchasing it. I was also prescribed an inhaled corticosteroid, but the cost for that is around $250 and so I’m trying to avoid getting that if at all possible. I think that I might have to just suck it up and admit that it’s necessary, though.

    Now, about 36 hours after receiving the news that I have asthma, I still cannot breathe 100%. I have used my rescue inhaler almost every four hours. One more day before I start to taper off of the prednisone, and I’m a little worried for what that rebound might look like, considering that I’m not even breathing properly while I’m on it. I have absolutely no experience with this, and feel that I wasn’t properly educated at urgent care. Should I have an asthma action plan?

    I’m glad that I now know the symptoms to watch out for. I’ve had the same symptoms in the past (but much much less severe) and always attributed it to allergies, colds, or the dry desert air. I’m so grateful that when I finally did have an attack bad enough to send me to the urgent care, that I was in an area and situation where immediate assistance was quick and easy to find.

    If you’re still reading these comments, thanks for your post!

    1. Sorry to hear you were sick. Sometimes it can take weeks or even months to completely recover from a flare. And Yes, if youve been diagnosed with asthma, you definitively should have an asthma action plan.

      Best of luck to you!

  33. Im in the Honeymoon phase right now because I am feeling okay, but for some strange reason I have this crazy feeling of starting to feel like crap..HELP!!!!

  34. Thank you so much! Thank you thank you thank you! This blog just gave me SO much hope that this will actually end and I can and will get better. I am currently going in and out of the zombie phase and needed to see this so badly. I am actually tearing up with relief right now.

    I’m in the middle (hopefully near end) of a several month awful asthma ordeal, and my husband (amazing, but has his own struggles with clinical depression) and I needed hope it will end, and that I’ll recover my mental acuity and strength. I want so badly to take care of my kids and family again…not to mention return to work and a paycheck!
    .
    Before I forget to ask, was there anything that helped people with sleep? The severity of my “zombie” symptoms and mental clarity seem so much better when I can sleep, and I haven’t slept more than 2 straight hours in months.

    So my history a bit – I was one of those people that conceived of asthma as this thing that only happened as weird isolated attacks with short term wheezing and/or nasty chest congestion. I knew that I got sick more frequently than other people and with more severity because I always scared the docs at urgent care into giving me chest xrays, but that was it. A few times a year I’d go on a stint of prednisone and a Z-pack, bust out the Duo Nebs on my home nebulizer, and be good to go in a couple of weeks.

    All of a sudden, at the beginning of June, I got hit with what I think was an influenza virus (I got swabbed too late for them to tell.) That’s when my personal hell began. Until last week, I hadn’t taken a clear breath since that day without wheezing and all sorts of horrible chest congestion. I had never been hospitalized before, and since June I’ve been in and out 3 different times, each for a week. I was not responding to the normal combination of prednisone, inhaled corticosteroids, etc.

    The first two hospital stays were awful. They got me basically to the “you’re not dying stage”, basically like a long ER visit…then booted me out without changing my treatment at all. Worst pulmonary team ever. At my allergists advice, I switched to a completely different hospital the third time, which was AMAZING. My new pulmonary team is fantastic (if you’re in the DC area go to Virginia Hospital Center.) and they gave me the Dr. House treatment. They didn’t let me go this time until my wheezing was actually gone.

    However, because of this…I thought that I would magically be better when I got out of the hospital. I had this weird feeling that ok – wheeze is gone, that means, even though I’ve been sick for four months, I can jump back in to everything. Taking care of my kids, cooking, work, etc. Nope. Can’t do anything. Unfortunately we are also getting half our roof replaced and tearing out remaining carpeting in house to make it an allergy bubble…having to coordinate childcare for when my husband is not home in the afternoon because I can’t do it…AAARGH!!! Too much stuff.

    I feel like it is so hard to convince people, even family members and doctors, how freaking sick I am. I normally have a high physical and mental energy level (which seems like a commonality on this thread) compared to many people. I work full time in a male-dominated profession and love also being the cook and primary caregiver for my amazing 2 and 4 year old boys. This means I am, like many of you on here, actually a professional faker who always tries to show no outside weakness (anxiety and OCD just add fun things to the mix). Apparently I got too good at it! Even when my O2 level is at 88, which it did, I can still speak normally. Doctors then look at my stats and listen to my lungs and are like “oh crap, maybe she is sick?” People that don’t have asthma, and that don’t have a baseline for what I usually am like, think I’m fine.

    I feel like this bizarre combination of Dory from finding Nemo and Westley from the Princess Bride. Unfortunately, I’ve also been having my Carrie Mathison from Homeland moments. I can talk and look ok (except when I’m really tired and Dory or Carrie REALLY comes out). But I’m really not. http://www.webmd.com/asthma/guide/unusual_asthma-symptoms – All of this plus Dory/Carrie stuff. Ugh. At least I’m not coughing?

    If anyone knows Miracle Max, please send him my way.

    I know this was rambly and full of so much stuff…but again…in zombie phase so I can’t even trust my mental clarity and organization right now. Hopefully this is coherent enough to understand. I love you all and hope other people get as much hope from reading this as I did. I’m bookmarking this so I remember to come back to it later with a positive update.

    1. Hello, and thank you for the kind words. Im sorry to hear that you’re struggling with your asthma and going through steroid withdraws.. im currently tapering myself. I think you’re your hunch about a virus triggering a prolonged exacerbation is correct. Viruses can linger for months, making asthma symptoms even worse.

      May not seem like it now, but the side effects from the pred will eventually fade away as you taper off. As far as lack of sleep goes, it’s a very common. If it gets really bad, sometimes I’ll take a little ativan and/or ambien, but I try not to pile on more medications because it just makes the recovery period longer. Eventually, you’ll sleep from pure exhaustion.

      Finally I would recommend that you switch from an Allergist to Pulmonologist who specializes in asthma. And of course a person that you’re comfortable with and have trust in. The understanding and treatment strategies for asthma is changing rapidly, so it’s really important to connect with caregiver who’s in tune these changes.

      Good luck to you!

      1. I am so frustrated right now. I was on Xolair, and it stopped me from having Asthma Attackes. Well in January my new insurance company stopped me from getting it. As I sit here and write this I can Hardly breathe. My insurance company denied me 3 times. My nurse found a way for me to get it for free, but…Ive been off of it so long that my Asthma has flared up. For the last 2 months I have had several steroids shots, antibiotic and Steroid packs. When i spoke to my nurse today , she told me to “turn myself in Monday to be hospitalized. I am Bummed out. I hate the hospital but …Nothing else is working. So off to the hospital I go.

    2. Great post. Thanks for sharing. Had my first bad flare Jan 2015. Took 4-5 weeks to get lungs settled then 6 weeks of recovery before I could do normal sustained movement, like gardening. You nailed 2 things in particular: no one understands how incapacitating this disease can be, and many of us who have it are rather ‘energetic’ livers of life and don’t take kindly to incapacitation nor slow recoveries. Thanks!

      1. Hello and thank you for writing.

        You are definitely not a wuss and severe asthma is certainly not for wimps. It’s a very real and deadly disease that causes more suffering than just about any other disease on the planet

        Below is a wonderful article by good friend and asthma researcher, Sally Wenzel. In collaboration with some of her patients ( myself included), she writes about severe asthma as a truly invisible and misunderstood disease .

        http://erj.ersjournals.com/content/50/3/1701109

  35. Hello Stephen, my name is John. Your post brought back many memories from some of the early days of my youth. When I was very young I was having problems being sick a lot, almost year-round. The doctors in my small hometown could not figure out the cause of this so they told my parents they needed to take me to Portland to see the specialists at OHSU. This is a one way trip of 375 miles. That spring my mom and I went to Portland and spent a week seeing doctors, running tests, and looking for answers. At the end of the week they sat us down in an office and told my mom they had good news and bad news. The good news was they had finally figured out what was causing my problems. I was diagnosed as a chronic asthmatic with a strider and multiple enviromental allergies. The bad news was that they had no medicine for this disease at that time. They were working on developing medicines and I could be in their drug trials. They told my mom she had two choices. She could put me in an institution for people like me, (they did things like that in those days!), or she could take me home, use me as a guinea pig for the drug trials, and learn as we go. This happened in the spring of 1967 and I was 5 years old. Mom and I went back home and began a learning curve that continues to this day. I’ve been a chronic asthmatic for over 50 years now. Living life as a chronic asthmatic from a very young age changes how you see life. I’ve had last rights multiple times starting when I was small. Close brushes with death help you discover what is truly important in life and what is window dressing. People used tell me I acted old for my age when I was young. I took responsibilities very seriously and still do. You could say I’m part of a very small group that has “Been there, done that, got the t-shirt.” gang of lifelong asthmatics.

  36. Hi Stephen,
    Thanks for this site and your work. Quick question. I have well controlled asthma, but after a bronchitis episode had to do the prednisone taper, twice. I cAn’t seem to get off of it without the cough and wheeze. First time this has been the case. Any suggestions? I don’t want to get stuck on steroids.
    Tracy

  37. This is a great question./ Yeah, that’s the problem with prednisone, sometimes it works so well, its difficult to come off of. If possible, I would transition over to inhaled steroids while still on tiny doses of pred. You might have to make several adjustments in your inhaled dose, and may even have to try different brands, but you should be able to make the switch. Inhaled steroids have only a fraction of the side effects that prednisone does and in the majority of cases can eliminate the need for pred all together. Once your asthma is controlled for a period of time, you should be able to stop taking the inhaled steroids as well. Of course, you should run this by your doctor, but you’re doing the right thing by looking for alternatives to steroids. Good luck.

  38. Hola Stephen
    I am 52 years . I have been suffering chronic asthma for six years now. I have en hospitalized 6 times. Ita?always the same thing they give me heavy prednisone and the breathing treatment after a few days they let me go. They haven’t control my asthma. I am always sick but I try to hiding it from everyone because I am embarrassed when they ask me again you are sick…….???like if it was my fault……I am desperate. Can you referred me to an allergist….. I don’t know what’s wrong with me.
    I am Super depressed……..
    Maria Lucy

  39. Hello Marie, Sorry to hear that your asthma is giving you problems. If you have severe asthma you should probably be seeing a pulmonologist, not an allergist. If you can make it to the University of Pittsburgh, I highly recommend Dr Sally Wenzel. She specializes in difficult asthma cases.

  40. Thank you so much for taking the time to write all this! Until a month ago I was a healthy, fit, 28 year old female who at worst suffered from mild exercise induced asthma and needed just an occasional post-exercise puff from a rescue inhaler. Then one day I woke up to an itchy, burning rash all over my body and a slow downward spiral of asthma symptoms. First time I went to the ER, they tried to tell me I was having a panic attack. After trying a couple different docs I finally saw an allergist who diagnosed me with a possible NSAID pseudo-allergy and sent me out the door with a treatment plan. Too little too late, two days later I ended up in the urgent care clinic for two nebulizers and a Prednisone prescription, and then the ER the day after for steroid shots and nebulizers. I’m now scrambling to add singular, a steroid inhaler, antihistamines, and rescue inhaler doses every few hours but I’m still not back to normal at all! I know that my symptoms are way less severe than many other people here, but it’s still scary being the first time and it’s comforting to know that other people are feeling and experiencing the same things. I feel like I’m never going to get better. It’s like I’m drowning on dry land, and I’m constantly worried that another attack is around the corner. It’s only been 5 days, so it’s good to know that it is normal and that I might be feeling this way for days or weeks. Ive been worried that this will just be my new state of breathing for the rest of my life, so it’s good to know there is life on the other side.

  41. Sorry to hear that youve been having problems. The good news is that allergic type asthma is very treatable. Still, any type of asthma exacerbation can be scary and can take several weeks to recover from.

  42. Hi Stephen. Thanks for your post, I completely get where you’re coming from and am somewhere around the fatigue stage at the moment. I was diagnosed as a kid but now at 23 my asthma’s gone a bit crazy. Have had numerous attacks over the past 3 years, have lost count but think it’s been at least 20 ED visits/hospitalisations, probably more tbh. In the last 2 weeks I’ve had 2 attacks requiring hospitalisation, one where I was in high-dependency. It’s such a nightmare cos have just gone back to work and finding it so tiring but feel like I have to go as I never know when I’m next going to have an attack and need more time off.

    1. Thanks for writing,
      Sorry to hear that your asthma is making your life so difficult. It’s pretty common for asthma to re emerge in adulthood, nobody really knows why. As far as recovering from from a bad exacerbation, it can take several weeks, sometimes longer. You really need to have more time off work ( if you’re able) to let your body heal. In the meantime, be your own advocate , learn as much as you can about your type of asthma and what your triggers might me and the type of treatments that seem to work best for you. Over time you’ll be less fearful of potential attacks. Btw, judging from your terminology “high dependency unit”, Im guessing you’re in the UK? I have so many asthmatic friends there.
      Hang in there Xx
      Steve

      1. Hi Steve, just escaped from another 5 days in hospital. It was horrendous as was blue-lighted into resus via ambulance. Back to back nebs and magnesium eventually worked but had been in respiratory distress and my ABGs got totally messed up so they were whacking me with oxygen and crazy amounts of IV fluids (3L overnight). I’m a pharmacist and have never even seen anything like that amount given. But they were doing 2 hourly ABGs and eventually my arteries weren’t behaving. Have the say the more they go in a particular artery the less it hurts. Don’t know if you find that too? They think I had a bad resistant chest infection so they’ve changed antibiotic when ch has helped loads. Do you have problems with resistance?Anyway tbh the whole thing was horrendous, at stage 2 at mo and am an emotional wreck, exhausted and get out of breath doing things like walking up stairs, making a cup of tea etc… just glad to be home.

        Best wishes, RG

        1. Hi RG,
          Sounds awful. I wonder why they didn’t just put an arterial line in you, would have saved you from multiple sticks. Different hospitals have different protocols I guess.

          I rarely have respiratory infections, so no problem yet with resistance.

          Hang in there. I hope you make to the final stage quickly .

          Steve Xx

          1. Probably cos I wasn’t on HDU. They have this system where they put you in the ward next to hdu and hook you up to a portable heart monitor etc which they monitor from there and phone the ward if there is issues. Symptomatically I wasn’t nearly as bad it was more a case of the ABGs being worse than how I actually felt, which is very unusual. I don’t like the fact they are resistant infections cos got to wonder what will work and for how long.

            RG xx

            1. The gunk was so thick in my chest I couldn’t get anything up. It actually kept proper blocking my airway it was so scary. Using Saline nebs helped a bit. Feel like that’s all gone now and my peak flow is normal for the first time in weeks so think I’m over it

              RG xx

  43. Hi Steve, just escaped after another episode in hospital (4th in about a month) so really not amused. Don’t even know what set it off this time, was just in work not doing anything unusual and felt a bit wheezy so took the usual salbutamol inhaler but it totally failed and it just escalated from there. Bit of a weird one for me cos I usually get warning signs before -get exhausted/can’t focus/go really pale, but didn’t get anything this time. Just madly frustrated at the whole thing. Also there’s no obvious trigger which was weird, think that’s only happened about 4 times in over 25 attacks (not sure exactly how many, lost count). My asthma is brittle though :/

  44. Bronchospasm and/or flare ups come out of the blue for a lot people. There may not seem to be an obvious trigger, but there almost always is. Might need to up your controller meds. Hope you’re doing better now.

  45. Two days out of hospital. Home scared,waiting for another one,half breaths but no headaches! Prednisone intravenous,oxygen,neb.treatment all at same time on way in ambulance(2 days ago). No breath in.At all,had happen many times before ,but this one was the worst.Scared me so bad don’t want to be alone . Born with bad lungs,asthma! So lifelong long fight! 50 m.g. prednisone for five days,no taper.Neb. right by my side and rescue and control inhalers too!

    1. Hope you are better Debbie. I’ve recently been diagnosed with uncontrolled severe asthma. Has asthma a bit as a child but it got better as I got older and I would go months and months without a rescue inhaler being used. But…it was hiding and damaging my lungs. No doctor I ever visited asked me to do testing, just refilled my emergency inhaler. I feel so betrayed and like you I don’t want to be alone..

  46. Pingback: Never trust asthma
  47. I am so glad I came across this. After umpteen hospitalizations (usually following the onset of a cold) and and DepoMedrol which makes me hallucinate, changes the texture of my hair and makes me unable to even drag myself into the tub post hospitalization, here I find myself once again with a cold and barking that beauteous croupy noise that is the non-breaking of the congestion in my chest. to hospital or not to hospital? Went to Urgentcare and got Medrol dosepak and Z-pak. The bronchospasms were only 2 bouts today and the nasal irrigation is pulling globs of stuff from my sinuses. (sorry about that). Now I will wait until tomorrow (which is the 4th of July here in USA) and if I feel that it has not improved, I shall present myself to the urgent care and request full-on prednisone in a respectable dose rather than the medrol dosepak. I think that might just do it. Hospitals cannot do anything for me I can’t at home, except notice when I’ve stopped breathing. (bad humor). Thanks for having all this here. It certainly is nice to know I am not alone. The panic that I feel (while running) when I encounter someone with a cold is akin to confronting a leper in a dark alley. Vitamin C has been a great help, large doses. I will keep reading your stuff here, and am eternally grateful to know I am not alone. (although mildly roided up and secluded in my apartment is NOT the best way to be living).

    1. Sorry to hear that youve been struggling, I just got out of the hospital myself ( my 36th intubation, science fiction stuff) . Believe me, you’re definitely not alone. There are millions of us, some more vocal than others, nut there’s s definite community. Make sure you get yourself checked out if you dont start feeling better soon. Take care

  48. Hi Stephen, I’m sorry that you have so many struggles with asthma and I truly appreciate your sharing of information. At the age of 53 and having asthma all of my life, I just went through my first severe asthma flare up. It’s been 3 weeks since I was hospitalized and I’ve been impatiently waiting to return to my normal self. Your 6 steps of the Recovery Phase is most helpful for balancing my expectations. Thank you for sharing and helping me realize that I’ve got to be patient for a few more weeks.

  49. Thank you for writing, Im sorry to hear that your asthma is acting up. Im glad you can relate to that post. It may take some time, but you will eventually start feeling like your old self again.

    Xx

  50. So great to read everyone’s comments!!!! As a born with severe asthma person, it stinks that you think you’re all alone! my asthma has been getting worse ,way worse over the past two years. Not sure why. But I try real hard to keep on top of it, use my control inhaler everyday ,rescue one every time I need it, nebulizer too! Prednisone when it gets bad. Keep track of my peak meter readings every day. My levels go anywhere from 100-250 . I can’t get any higher than 250! My lungs hurt almost everyday. I don’t get hardly anymore wheezing. Just the elephant on my chest! (I think the hippo joins him!) Been to the hospital once last month almost went again four days ago. It gets tiring just trying to breath! But am hanging in there!!! Many blessings to everyone !!!! I’ll say prayers for you all ,please say some for me! Take care!!!!

    1. Hi Debbie,
      I’m sorry that you have to fight so hard to breathe. Be assured that I will pray for you to get some relief from the daily struggles that you experience.
      I found all of Stephen’s blogs to be encouraging and helpful. If you haven’t already read all of Stephen’s blogs, please take the time to read them.
      Kindest Regards,
      Susie

  51. Thank you, Stephen! What a Godsend your post is….Though minor asthma episodes over 70 years, had first acute attack last week, into the ER – begged not to die – and then in hospital for a few days. Checked for the ‘bad stuff’, but healthy as can be..except the Lactic Acid was 5, which I guess is high, and they think got a virus…Recovering at home is fine, but have a ways to go. I play in an oldies rock band, but now am scared as hell to return to it, as it is very physically challenging…..and the workshop, and all of those things we love to do. I dread having to become a sedentary type…..sorry to go on & on: there are many in much worse shape….thank you again, sir…

    1. Hello and thank you for writing. I hope you’re starting to breath better.

      Why on earth would you give up your music? If you were able to do it before your asthma flare, you should be able to continue once you start to feel better.
      I have very severe lung disease, and while I don’t play with a band I still play a couple hours a day on my own ( http://breathinstephen.com/bass/)

      Again, don’t give up your passions, make some adjustments if you have to , but never give up doing the things you love.

      All the best to you Xxx
      Steve

      1. Steve, it’s been about a month since my attack, and my letter to you…..at one point couple weeks out, I thought I was ’rounding the corner’…..but this week, just four weeks out, it is starting to creep back….is that normal, do you think? Good lord, I’m back on nebulizing machines and inhalers I put away….I am terrified to travel, and more scared about going back in to the hospital…..I know you said you have ‘very severe’ asthma problem, and I can’t even imagine…..I don’t have COPD, I don’t have Emphazema, I don’t have lung cancer, I don’t have pneumonia, nor PE, and oxiginate at 97%!!! Heart is good, gall bladder good……if I could only catch my breath……if this never started a month ago….I have really bad thoughts, and a family that is afraid for me……and I’m an active 70 guy who plays in a band, works in a workshop, gardens, builds……what is going on? sorry to dump…..this just scares me…..

        1. Dear Pete, Im so sorry to hear that you’re having a rough time. Unfortunately, what you’re experiencing is not uncommon. Could be a lingering virus that might have set you off originally, or it could be a rebound effect from tapering off the steroids. It could also be your age, as older people have a harder time recovering from bad flares. It’s hard to say, but again it’s not uncommon to have multiple exacerbations. You said your O2 sats are good, have you had any recent pulmononary function tests ( PFTs) done? If all your numbers are good, but your feeling short of breath , it could be air trapping. Air gets in when you inhale, but it cant get all out when you exhale. This air trapping is caused by inflammation and/or mucus plugging of the smaller airways. Air – trapping is a common symptom in emphysema AND asthma.

          My best advise is to try not to freak out over this. What you are experiencing is typical for someone with severe asthma. If you dont already have one, seek out a reputable pulmonologist who specializes in severe asthma and stay in close contact with them.This is so important, because there are new drugs and therapies out there that only a specialist would have access to. You might also want to check out various online support or chats group for people with severe asthma. In the meantime, hang in there, be proactive and no that you are not alone.

          Steve

  52. Stephen,
    Thank you for this. At 65 just catching my breath after 2nd severe flare. (Heh heh). First was a year and 9 months ago, while I was travelling near Seattle. Fortunately I kept an asthma diary during the first event, because it was reassuring during this one to be able to see a vague pattern. Today I discovered this site, and your ‘Phases’ are spot on. Very reassuring to know I am not being a wuss, not malingering, etc. Asthma is a complicated disease; it is no wonder it is difficult to manage. Combine that with crazy making side effects of steroids and diminished oxygen, throw in prohibitive cost of inhalers and it’s a wonder we all keep going. It seems that unless one has experienced this particular disease the severity and wavering nature of recovery is not understood. Kudos to everyone on here, I appreciate learning from each of you.

  53. Im a 38yr old chronic asthmatic (all my life) av ad many attacks but this one as tuk a grip i was hospitalized for 6days on iv antibiotics steriod salbutamol nebs an saline nebs on oral meds now at hme but i cn barely walk to the bathroom without becomin breathless an wheezy im ok wen in bed or sat dwn but as soon as i stand i feel like am havin an attack i av ad an infection on my lung an exacerbation but ive neva eva felt like this after an attack b4 i cud always breathe normal but nit this time am i doomed 4 a life ov this?? I want to go bk 2 wrk

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