These are turning into weekly posts for me! Thank you for all of your help and advice.
I had a major curve ball thrown yesterday. To this point all of my doctors have been telling me they believe my triggers are likely pollen allergy. That would be the perfect explanation to why my original asthma attack came up last May and now this May out of nowhere I'm again reduced to doing next to nothing because of breathlessness. I saw an aero-allergist specialist yesterday who tested me for absolutely everything. The conclusion: I have zero sensitivity to aero-allergens. She said conclusively that in her opinion, I am not allergic to anything and it would be extremely unlikely that the trigger is therefore hayfever etc. She said she wouldn't even recommend that I take antihistamines as they are very unlikely to make any difference to me. The truth is, I've never had other hayfever symptoms just the breathlessness. No itchy eyes running nose etc. So this is why I sought out the allergist as something didn't sit right with me and the antihistamines + asthma treatment never completely reduced my symptoms.
So my question to the community is, what exactly are your triggers and how did you find out about them? Are there any other things I should look into or tests I can request to help look into things? I am now desperate to understand what is happening and why this is coming up because my doctors had put all stock in the allergy theory and now I feel completely clueless.
Any stories you could share about your journey would be helpful. Thank you.
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CanadianBrit30
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I’m very allergic to pollen generally. But, get this, I have specific allergies that affect me big time. I avoid lavender and roses, to me they are toxic.
My sister has no real allergies, until someone cuts grass near her and that sends her system into overdrive.
There are so many things you could be allergic to, I don’t think she can test for everything.
Aside from pollen there is dust, mould - various types, pollution - all sorts, perfume, aerosols, plug-in air fresheners, etc etc etc
I have had multiple rounds of blood work none of which showed increased IGE levels and finally yesterday I had a skin prick test where they tested for 16 different aero allergens (3 types of mould, 2 grass, 2 types of dust, 4 different trees, cats, dogs, and a few others). They all came back negative even though the control clearly showed the test was working.
There are all sorts of things that mimic asthma in terms of symptoms, eg chest tightness, shortness of breath, coughing, but aren't asthma so they don't respond to asthma medications. Given that the steroids didn't seem to help the other week and the blue inhaler only helps a tiny bit, it might be worth trying to investigate other possible causes. Some of the diagnosis of asthma is do the medications improve symptoms and peak flow (over time for preventer meds but after about 15 mins for reliever meds).
For breathing symptoms and tightness that isn't caused by asthma, breathing techniques work really well. I experienced this myself when I had covid - the covid breathlessness and tightness is very very different to that in asthma and didn't respond to ventolin as relief but very much did to breathing exercises (done when symptomatic). For many with breathing issues after having had covid (whether in the last few months or a year ago), respiratory physio (including breathing exercises) is the answer. Not saying you've had covid or anything but the effect can be similar - something can cause our bodies you develop weird ways to breathe which causes constant tightness or shortness of breath or other symptoms.
So it might be worth trying some to see if they help. These are good, from the British Lung Foundation. The rectangle I found particularly helpful but suspect it'll be personal - one that a physio once taught me just annoyed me 😅
This post explains more about asthma mimics - it focus on some causes but, whatever the cause, the idea is the same - however many asthma meds are thrown at it, it won't improve if it's driven by something that's not asthma (at that time; it's possible of course to have various things at once).
I have many allergies to a lot of things including foods, some meds, .... I have been on allergy shots a couple of times and they have really not helped. I am very allergic to some trees and I have been wearing a mask for some time during pollen season if I don’t want to get sick. I don’t buy anything scented. I even make my own laundry soap. Because of heart issues, I am only able to take very limited allergy drugs. I have been taking Claritin and that helps. I developed asthma in my early 60’s brought on by humility and hot & cold weather. I live in the Houston area which is very humid and we have very hot summers. I take Spiriva and Flovent. I currently see a great Pulmonologist that has kept me on track. I hope you find an answer. Being congested is terrible.
I don’t think my asthma is triggered by allergies, as I don’t seem to have any worth speaking of. Recently I was told my eosinophil count is extremely low. My current main triggers are respiratory infections, cold/winter/etc and especially indoor air pollution. You don’t have to be allergic to have asthma, it is just less researched and understood.
We have as much pollution indoors as out. It is the kind of chemicals and materials used in modern carpets, furniture etc, etc, various scents and the like used in sprays and cleaning products, and things around cooking. It is impossible to avoid completely, but the impact can be reduced if we just think about our choices. So perhaps not replacing kitchens so often, favouring wood over modern materials etc. For me it appears to be anything that burns in particular, though to a greater or lesser extent. So nowadays I dislike open fires and wood burners, wary of BBQs ( outside i can keep my distance) but also have issues around cooking and baking. It is not absolute. I can react on well toasted toast while it is being made. I have had to rethink my cooking style.
The pollution all these things cause will eventually leave your home and join the general pollution outside.
I went to a talk by someone researching and specialising in this, and she strongly recommended avoiding two things: those air fresheners you plug into a socket, and scented candles. I know many people like them but not for me. It affects me.
Sorry, this got a bit long, but you asked. As it affects me, at least some of it, I feel rather strongly about it. I suddenly noticed that I reacted when someone toasted bread, ditto with smoke and burning, and when someone was baking a cake and so on. It was just like an uncomfortable hit respiration wise. And last Christmas I had an asthma attack caused by cooking fumes (it was on Christmas Day so a lot of roasting in the oven) and burning candles.
Thanks that's really helpful. Most of that stuff doesn't apply for my house. I've got mostly antique wood furniture from a charity shop! But the toasting/burning is definitely a thing for me. I work from home all day in the mezzanine above the kitchen and my partner is constantly burning toast. I will have to think on that and try to figure out if it has any impact.
I can add a few things from my experience. Household cleaning supplies (polish, toilet cleaners, kitchen and bathroom cleaners etc) all leave fumes.
Deodorants (from a pressurised can) and hairspray. An allergist told me I was probably allergic to the propellant. Anything with scent... bath products, after shave....
Definitely those scented air fresheners!! I think they should be illegal 🤬
I'd like to add, for CanadianBrit30 too, that all these thing are triggers for me BUT when I'm well controlled I can tolerate them quite well, so yes, whilst avoiding them is great - it's not inevitable that you'll always react to trigger when you aren't in a flare up. I been thinking of these as irritants to my upset lungs rather than true allergies.
True! Though at times I have reacted mildly and just briefly even when I thought everything was fine, like my first toast experiences.
I don’t think of them as allergies at all, but as you say, sensitivities. So I wouldn’t consider antihistamines just then, as I believe it to be a different way the body reacts.
If you're not allergic to anything, perhaps it is a reaction to stress of some kind. Your posts are all written in a fairly calm way, so maybe not, but it is an idea you might explore.
For what it’s worth, I also have always had negative results to allergy tests. However, through years of experience I can tell you for sure that I have a reaction (sensitivity) to pollen and some stuff I eat (wheat, nuts, soy). I’m totally frustrated by the medical communities inability to accurately diagnose this this stuff. It is comforting to hear the experiences of other sufferers in this group. I suggest you trust what your body is telling you over what the doctors say. They treat you like a formula: no ige, you can’t have allergies, no wheezing, it isn’t asthma, etc. So frustrating. I listened to them tell me I had no allergies for years until I finally accepted that I need to avoid certain things. Like you, every spring when the yellow pollen is all over my car I can’t breathe. I did have a decent doctor tell me once that they do acknowledge that some people are ‘sensitive’ to specific things vs. ‘allergic’ and that they don’t fully understand it and don’t have tests for sensitivity. Lastly, I have found that the more unwell I’m feeling, the more these things seem to bother me. One doctor told me something useful - they are all variables and when you get enough of them in the right amounts there is a tipping point and your body reacts. So when I’m feeling unwell I try hard to avoid them all. Unfortunately, pollen is a hard one to avoid.
This is a long shot, but did they test you for aspirin sensitivity? About 8% of asthmatics are sensitive to aspirin and therefore may do better on dry powder inhalers (no propellant), an Omega 3 diet (basically a low omega 6 diet, it's is a big trigger and in lots of foods considered healthy, e.g. soy, chickpeas, vegetable oils), avoid alcohol (sulphites). You can read more here samterssociety.org/about-aerd
Hi CanadianBritI had allergen tests at the respiratory clinic at the hospital. My tests also came up negative, but my consultant said that this didn’t mean I had no allergies.
He explained that they test for the more common ones, but they can’t test for everything and that they don’t normally keep running tests to find the culprits as we would end up like pin cushions.
He told me to continue the antihistamine and to double the dose during troublesome times.
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