I was diagnosed with asthma at age 5 after having an asthma attack, I’ve had intermittent attacks my whole life.
The odd thing is I have no symptoms, no lung tightness or wheezing chronically, it will just come on suddenly and be very severe. An attack a few years ago saw me lose consciousness and turn blue according to witnesses, as I woke up in the ER with an injection of epinephrine. Also the only medicine that helps my attacks is epinephrine, I use Primatene Mist(I have a stockpile) which is off the market but Asthmanephrin works as well.
The corticosteroid meds don’t help when I have an attack, and they don’t seem to do anything beneficial between attacks as I am not wheezing or have lung tightness.
A miracle med for me has been loratadine AKA Clairitin, it has reduced these attacks to something like every 2 years.
I had an allergy test done as a child, which came back inconclusive. My parents and me where told I didn’t react to basically anything(this is the test where your back is pricked with dozens of needles with allergens).
I’m honestly wondering whether I have asthma or some kind of allergy. I have talked about this with doctors but they insist on the asthma course.
Asthma can be a reaction to allergens but not all asthma is allergy related. If loratadine works so well for you I may well be inclined to ask my doc to do more tests as you have such extreme reaction. Were you taking the anti-histamine when you had the big attacks?
No I wasn’t taking it, I started on my own after the life threatening attack.
As a child I was put on various meds until oral prednisone which still did not prevent the attacks, but had horrible side effects like making me bloated and tired. Doctors had always discouraged use of Primatene Mist and encouraged use of prevention meds like the prednisone, somewhere around age twelve I got sick of it and stopped taking it and only using the Primatene since it wasn’t preventing attacks anyway.
Seriously, if I were you I’d do the tests. I have mild intermittent asthma (have never needed emergency treatment, just a short course of prednisone every few years when it flares up), and I go months and months at a time without needing anything. It tends to flare up after an upper respiratory infection. I’ve never felt like I couldn’t breathe; I just cough a lot and sometimes end up with bronchitis.
The last flare-up was pretty bad, so the doctor recommended that I do a round of allergy testing afterward. It had been 20+ years since I’d had allergy testing, and people’s sensitivities can change over time (I knew I had allergies and take loratadine during the day and Benadryl at night to deal with the annoying-but-not-dangerous symptoms, like itching)), so I took him up on it.
Until then I’d figured my allergies were to airborne things like pollen which I can’t totally avoid anyway, so what’s the point? Turned out that I was allergic to mold and dust mites, which I’d been told before, but also to cats, which I hadn’t been told before. And that I wasn’t allergic to pollen at all. The allergist suggested some common-sense non-drug mitigation measures like dust mite-proof mattress covers, washing linens in HOT water once a week, and an air purifier for the house. I don’t know for sure that these things have helped, but they are minimally intrusive, and I haven’t had a flare-up since.
You don’t have an albuterol inhaler? That seems odd. Have you tried them and they don’t help, or what?
It does seem a bit weird. Sometimes kids are diagnosed with asthma when really is just a temporary thing, but your problem is long-term and doesn’t seem to be helped by asthma medication.
Have you been prescribed anything for short-term relief? I think albuterol is the usual US term for it. It’s the first thing you get prescribed if you have asthma. Every kid diagnosed with asthma, rightly or not, gets this prescription.
It is not in place of steroids: it’s an emergency medication that dilates your airways fairly quickly. Steroids are not the same thing. Steroid inhalants help your lungs in the longish term, as in 12 hours plus (so if you were using them every day, you wouldn’t be wheezing, like you said). They wouldn’t help if you had an asthma attack. That’s where you’d be prescribed albutemol, because that helps within a few minutes. Because the steroid inhalers take time to work, they are always prescribed alongside albutomol.
And oral, as in tablet, steroids, are after you’ve done all the rest and are still having attacks. They’re closely monitored and there’s no way you could have taken them for years. I mean that there really is no way - you would have noticed. You’d be really ill if you’d taken oral prednisilone for years. They do have the horrible effects you mentioned after even a few weeks if you’re a kid. They are not long-term medication at all.
So someone prescribed you prednisilone but nothing else? I must be reading this wrongly.
See an allergist. Really. Asthma can be a killer, which should be obvious to you if you’ve had a severe attack. Definitely have another allergy test. They can do it now using blood tests, which are not cheap but avoid the nuisance of a skin test – but whatever your doc says. As mentioned above, allergies change all the time. The tricky part of any allergy test is selecting possible triggers, since it’s not practical to test for everything. Your doctor will help you with this.
I have medium-ish asthma which wasn’t detected until I was in my late 20’s, though I’d been treated for allergies (did the shots thing for many years as a kid). I kept getting normal colds that would then develop into chest infections that didn’t affect me systematically (I felt fine, just sounded like Old Aqualung) that would be hard to kick. Finally a PA guessed I was having asthma symptoms exacerbating the chest infections, who gave me a dose of albuterol which made a huge difference! These days, people who get bronchial infections should be treated for asthma during the infection, even if they don’t normally have any symptoms (that’s been standard for decades elsewhere in the world but seems to be a new thing here in the US, and a lot of docs don’t seem to know it even now.)
Since then, only twice did I have to go to an emergency clinic due to an inhaler not quite doing the job. Both times, I was told I had an inner ear infection. I didn’t feel any inner ear issues, but they said that wasn’t unusual.
Try an albuterol inhaler. A doctor should be able to give you a sample to try, to see if it helps. Eventually you’ll run out of Primatine.
I used to keep a bottle or Primatine in the car because I was commuting and would get sleepy at the wheel. One puff and I’d be good, and I wouldn’t do this more than once a week or so. I got out of that habit, though. But recently I was on vacation and my albuterol puffer failed and I was disappointed to find that we can no longer get Primatine, which would have seen me through just fine. I don’t know why they pulled it from the market. Meanwhile, there’s always a good strong cup of coffee (or any source of caffeine). Every now and then that’s helped me out a lot. However, I’m very caffeine-sensitive; I tend to avoid it to avoid disrupting my sleep and also just driving everyone nuts. YMMV, of course!
Now I’m using Symbacort, and I have to say that really works for me. I almost never need my “rescue” albuterol inhaler any more. But if you don’t need one on a day-to-day basis, it’s probably not the right solution: all you should need is albuterol.
The OP really, really does need to be seen by a competent specialist and re-evaluated. If it’s asthma it doesn’t sound like he’s getting proper treatment. If it’s something other than asthma then that needs to be addressed.
Well first (and you probably know this, but it bears emphasis), corticosteroids are not meant to help in the midst of an attack. I’d agree you should be looking into an albuterol inhaler for rescue purposes (I’m not familiar with Asthmanephrin, but I see it looks like a bronchodilator, so if that works for you, that’s probably fine, but discuss it with your doctor).
I would also suggest discussing using montelukast (trade name Singulair but now generically available) with your doctor as a maintenance med. It’s a leukotriene-receptor antagonist, which takes a different path toward allergy treatment (as opposed to antihistamines) and is often prescribed to allergy sufferers who don’t necessarily have asthma. I had intermittent asthma attacks in childhood (and I remember Primatene well, always hated the way it tasted), but about six years ago (I was 42 at the time) came down with my first really severe case since those childhood days. After a course of prednisone to clear up that attack, my doctor prescribed Singulair as a maintenance med and I haven’t had a recurrence since. Also have not had any serious seasonal allergy issues in that time.
Albuterol is the drug of choice for acute bronchospasm. You need to get some of that. It’s the same class of drug as Primatine but more tuned to treat the lungs.
Some asthma is caused by exposure to specific allergens, but in some cases a trigger is never identified.
See a pulmonologist.
Gah I didn’t explain the timeline of events here every well!
Age 5 asthma attack, put on albuterol nebulized(I think). Doesn’t work well, discover Primatene mist an epinephrine inhaler and it works perfectly for attacks. Doctors insist I shouldn’t have attacks, and I need to be on a daily controller med. Tried them all til I was put on oral prednisone and eventually injections, still having attacks and the side effects were so bad I stopped taking them as I was becoming a teen. I just used the Primatene mist for the occasional attacks.
I have never experienced tightness or low lung volume(yep peak flow meter) except when an attack comes on which is random and it comes fast and bad like my lungs are slamming shut or something.
Got along fine with Primatene, left the USA and tried to get along without it. I had become complacent and switching to an albuterol inhaler is what lead to the ER visit.
I still hear from doctors you need to take a daily asthma med until you no longer have attacks, but I’m wondering if I am experiencing some kind of severe allergy or anaphylactic shock or something.
I got back Primatene realizing my life depended on it and got on montelukast, it did not improve the frequency or severity of the attacks. Then I got on loratadine(clairitin) just to see and BOOM miracle med. I have had one asthma attack in the last two years almost, and of course I still keep the Primatene handy. The loratadine is by far the most effective “asthma med” I’ve tried in my life for prevention.
I also have Asthmanephrin handy, which is also epinephrine sold OTC for asthma. Like I said the albuterol inhalers are almost useless.
I have brought this up to doctors and they pooh pooh it, as if I’m on a placebo saying if you have asthma you have constant low level inflammation 24/7 which if you control it will stop it progressing to attacks which loratadine won’t help with. Which makes me wonder about the asthma diagnosis to begin with.
I was hoping if I could bring a name or something to them to make them seriously say hey this guy maybe does not have asthma.
Sudden, severe attack that makes you lose consciousness and turn blue? responds only to epinephrine?
Everything you say here screams ANAPHYLAXIS to me, honestly.
Have you noted any triggers when this kind of thing happens? like you just ate such-and-such? The only sudden, severe can’t-breathe episode I’ve ever had have been due to the presence of sulfites (a kind of preservative) in salads; it’s been 30+ years since this has happened to me and I gather it’s simply not something they use as much any more, and I’m not as sensitive to smaller amounts in, say, dried fruit or wine.
Try to document what you were doing, where you were, what you were eating, etc. whenever you’ve had such an episode.
I really hope you follow up with a pulmonologist (and a pullmanologist too if you need to take a train to see the doctor :p). There are tests they can do to determine what’s really going on; a methacholine challenge comes to mind (that’s not used all that often but I gather it’s considered reasonably definitive). And do this NOW. I would prefer to not see you added to the “In Memoriam” sticky :(.