Hi. I’m very worried and confused. I ended up in a and e with difficulty breathing early December. I thought I had pneumonia or bronchitis.
A chesty wheeze started mid November. It hasn’t gone away since. It is there day in; day out when I exhale. I can hear my chest rattling. I do not and have never had a cough with it. In December I went to urgent care and they sent me to a and e with a suspected blood clot in lung. This was ruled out days later by a nuclear scan. I feel generally very unwell each day I wake up, extremely lethargic, sometimes nauseous. I have frequent heart palpitations which have been explored by ECG and blood tests but I am told all ok in that dept.
The rattling in chest gets worse when I eat (anything really but more so with heavy carbs). The doctors were going to discharge me with NFA. I went to see my GP and annoyingly suggested anxiety. I asked her what it could be otherwise and she flippantly suggested asthma and I have an asthma clinic tel appt next Monday. What can I expect ? I also have an inhaler to try out in the meantime. This seems to have little effect, if any. It’s a blue inhaler named Ventolin.
Do any asthma sufferers have a persistent rattle in their chest on exhale which never eases … only gets worse ?
Also to add (and which may be connected) I seem to have developed allergies. These are also undiagnosed by professionals but gluten and milk now make me extremely itchy, prickly , my throat becomes tight. I’m unsure whether I’m allergic to other things too .. ie dust or my dog as even when I’m not eating, symptoms persist.
If anyone has any idea at all or wants to chat /recognises these symptoms let me know. I’d be so grateful. All this literally came out of the blue for me in Nov with no obvs cause
J x
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First thing I recommend is to start carrying a little notebook and pen with you (and your mobile phone) at ALL TIMES, even around the house, until you have a firm diagnosis and treatment. The phone is so you can call for emergency help if you are alone and the symptoms are worse. Don't assume you will be able to walk to your telephone.
The notebook is because one thing that will help your doctors diagnose you will be the most detailed explanations of specifically what symptoms you have, what is happening with the symptom, where you are, what you are doing. Have you eaten? What? How long before the symptom started? Does anything make it better or worse? Did you cook something -- on a gas stove (fumes from any gas fire can trigger breathing problems), electric stove? You have a dog -- does it sleep with you? What kind of bedding do you have -- do you use a mattress pad/feather bed/ duvet/feather pillows? How often do you wash your pillows or replace them?
Does your bedroom have other potential allergens? (Your bedroom is particularly suspicious since you say you are much worse every morning.) Do you have carpeting in the bedroom? Wall-to-wall or removable? How often are they cleaned or removed? (If you are truly asthmatic, you will probably be advised to remove things like carpeting in favor of hard surface flooring throughout your home.) What about drapes? Books/magazines/shelves with anything else that can hold dust?
If you've noticed the symptoms increase with certain foods, are they foods you have prepared or eat out? Of course you need to avoid all of them completely until this is diagnosed and treatment begins. If you are having trouble with wheat, for example, you might try a rice substitute for breakfast cereal etc., or oat milk. Stay away from any new items that are more common allergy triggers (like nuts, so no nut milks).
And have you arranged an appointment with a gastroenterologist? Because it sounds also as if you might be having some sort of a problem with your esophagus -- and severe acid reflux can cause that, but so can other things.
Take lots of notes -- of what you are experiencing/doing/ your environment, but also everything you are told by the various doctors you see. And track your test results. If the Ventolin isn't working, be sure and tell them that.
By the way -- why aren't you seeing the allergist in person? No one can diagnose or even do a thorough exam of breathing problems via telemedicine. If it is simply an introductory appointment to get your medical history, I recommend you write up as thorough and comprehensive report of what you are experiencing and how/when etc and show the doctor your notebook (it will help them assess your ability to accurately describe what's going on).
Good luck. Write back if you need advice or moral support.
Thank you so much. This is very helpful. I am going to call the doc first thing (closed today!) to ask for an urgent asthma appt and will also speak to them about GERD which I have just researched and the symptoms sound v familiar. I’m sure I’ll be in touch again
Let me know how it goes. And remember that you know your body better than anyone else -- learn how to describe your symptoms/reactions as accurately as possible and you'll become a partner in your own healthcare.
If you are asthmatic the rattle in chest may well be because your asthma has not been under proper control because it wasn't diagnosed. I used to have the blue ventolin inhaler and like you felt it did nothing, l now have Salbutamol/Salamol in my blue reliver inhaler, it is a slightly drier milder consistency. Ventolin is horrible and smells/tastes like petrol/diesel to me. Or rather something toxic I shouldn't inhale or smell 😂. Of course it isn't toxic I just prefer Salbutamol and get better results when asthma flares up.
Hello. Thanks for checking in and for your message. I was diagnosed with asthma after a spirometer test about 3 weeks ago. They said I had the lung function of a 62 year old (I’m 38)!! I am 200mcg steroid inhaler now but I’m still struggling immensely. I seem to have a ridiculous amount of triggers which seem to just be accruing more as the days go on. I have given up dairy and wine but I also seem to be triggered by other things that I haven’t quite pin pointed yet … perhaps dust/pet dander and other invisibles in the house. I still need to use my blue inhaler regularly as the triggers make my breathing v difficult. I’ve stopped burning candles, started on vitamin D, lost some excess weight, try to walk daily but I’m still suffering and not living symptom free as my asthma nurse says I should eventually. I am back at the docs tomorrow to review meds and hoping for something else or an uppage in dosage. I feel upset regularly (I know things could be much worse) but this all came completely out the blue for me. There didn’t seem to be a catalyst. I didn’t suffer with asthma as a child and it’s not in the family and I’ve never been allergic to anything ! There seems to be no explanation. I’m also on daily over the counter anti histamines. I have a consistently blocked nose, watery eyes, itchy skin, sore throat from clearing throat, acid reflux There doesn’t seem to be an end to my symptoms and if anything they seem to be accruing as time plods along. Anyone feel like this at initial diagnosis. Do you think it’s just a case of getting meds right ? I live in hope. J x
1. Have you had a complete work-up by an allergist? Not just skin prick tests, but also blood tests? If not, you should start asking why not.
2. Have you been screened for eosinophilia? Eosinophils are a special white blood cell that are part of the normal immune response to acute allergic reactions, but also to parasites, certain blood problems and rare cancers and a few other things. In very rare (NOTE: VERY RARE) cases, patients (I'm one) have what's called Hypereosinophilic Syndrome, which causes the eosinophils (eos, for short) to flood the body and begin attacking organs and tissues throughout, instead of invaders (think of rogue military troops). That could explain some of the reactions you are having that are currently unlinked. Note that you don't have to have the severe form I do to have medications that can help. First thing is the diagnosis, and for that you will need Complete Blood Count with Differentials (although that's the test name in the US, and I gather you are in the UK). Ask about it.
3. There's a reasonable chance, if you are triggered by wine, and possibly mold in your home (which can be potentially life-threatening for someone like me), you should talk to the allergist about going onto exclusionary diets to try to work out what all you may have allergies to that then may be triggered by other things you are exposed to -- for example, I am allergic to apples and carrots now, which means that certain trees' pollen can trigger the food reactions, and food reactions can make my skin hypersensitive. If you are sensitive to mold, you need to stop all cheese -- at least until you reach a basic state where the reactions stop and you know what triggers the worst reactions. Determining this takes time and it's not fun, but it's worth it. And it can cause problems in lots of areas you might not think would be related -- like sleep.
>Get rid of all fragrances in everything --soaps, detergent, lotions, laundry products, air fresheners. Fragrance-free shampoo and hair products only. >Use skin products without lanolin -- in fact, for a while your allergist can recommend a basic, completely neutral cream to use on your skin.
4. You may need to find a place to move to -- at least until all the mold is removed from your home. But I learned the hard way here in the US that it is extremely difficult to actually do that. Just because a company says they have and shows you some test results doesn't necessarily mean that it's truly gone and won't recur.
>Also note that fabric-upholstered furniture in the house may need to be replaced, or stripped to the wood or metal frame and rebuilt -- because mold spores in the air can colonize in the padding and fabric and be largely invisible to you.
>I know how shocking this is, but there are things that can be done to help preserve some things. Like books etc. Buy some large plastic bins with tight-fitting lids. Go through your books and get rid of all but the most important. You can buy containers of special crystals that will absorb moisture to put in the bin, but research the best ways to do so and best products first. (I called curators at the Smithsonian Institution here in Washington DC, our national museums and asked their advice.)
5. Asthmatics should not have books, magazines, plants (or dried or silk plants), out. Get doors for your bookcases, store out-of-season clothes in dust-proof storage. Get rid of a lot of cleaning products and go back to the old ones used by your mother and grandmother -- baking soda and vinegar can clean most things.
Get yourself a small notebook, or if you have a smartphone with an app where you can take notes, make notes about when problems start -- what you've eaten or drunk or done that day and time before the other problem. Also note when you try the different medications, give them a week or two and note any side effects or reduction in symptoms. Then you always have the notes with you -- at doctor appointments or at A-and-E.
Good luck. Reach out if I can help or offer advice and let me know how you are doing. I know how frightening this can be, but try to stay calm, and also recognize that sometimes it helps to be able to log on and talk to someone when you are feeling scared -- 5 hours earlier here in US East Coast.
Update : I’ve now been taken off the steroid inhaler and been prescribed fostair (a combo inhaler), montelukast nightly and 5 days worth of oral steroids. I am on day 3 of the new meds and so far, no positive response at all. I feel like I’m getting progressively worse no matter what I take. V frustrating and v frightening. I’m in tears most days.
I’ve had allergy bloods tests which came back normal. This surprised me as I was adamant that I have new allergies to dust, mold, other nuisances round the home etc. I’m seeing my doc again on 1st March for a review of these meds and I’m going to ask for skin prick testing next. I’m not sure bloods are all that reliable.
I have taken on board many things you’ve said. Cleared rooms of dust collecting things. Bought a hepa filtered hoover , I am realising and staying away from triggers inc dairy and wine. I don’t feel any better.
I have scrolled many a asthma page and cannot find one person who has similar symptoms to me. I am worried I may have the wrong diagnosis although have had chest X-rays, lung scan and spirometry tests. How ever I don’t present with “normal “ characteristics of asthma. I have never had a cough with it and I don’t get flare ups …. Just a constant difficulty breathing which seems to be exacerbated by eating (anything by the way). Some things like dairy certainly make my breathing more deeply but having ANY meal makes me want to clear my throat of mucus for a while after (this confused my doctor tremendously who looked at me like I had 3 heads ) . I turned up at urgent care a couple of weeks ago with breathing issues and felt I needed to be seen by someone. They couldn’t hear anything in my lungs at all and my peak flow result was fine. Yet I’m told I have the lung function of a 62 year old (from spirometer testing ). I’m confused and fed up … a very negative nelly at the mo. I’d just like some reassurance that I’ll see some normality at some point !!
I have noted down the eos info and googled it. I will mention this blood test at my next appt.
I’m constantly in a state of panic that I’m going to have a full blown attack… every day I feel like I’m on the verge of one. I take reliever inhalers regularly but actually feel like they do very little. Do you have a respiratory specialist ? I feel like maybe the time is right for me to see one
Sorry it's taken a while to get back to you -- I've been having eye problems which keep me off computers, beyond frustrating.
This may sound like a strange idea, but have you seen a gastroenterologist who specializes in the esophagus? Bear with me here and I'll try to explain. Eosinophilia can affect every organ and tissue system in your body, many of them are just beginning to be studied. Some have been around longer.
One of the best sources of info on all of them is APFED.org, the American Partnership for Eosinophilic Disorders. It combines not only patients like me, and pharmaceutical companies, but researchers, physicians, families, even some healthcare educators. Go there for some more info.
Remember I am not a physician, just have spent an inordinate amount of my life with all this, and now my doctors teach me (because they have found it less of a problem than answering all my questions constantly).
I have met a couple of people through APFED (we have annual conferences, virtual now but hopefully soon we'll be back to in-person) who had breathing problems triggered by eosinophilic disease affecting their esophagus. When you think about it, it makes sense. The eos cause inflammation (which is reduced by the steroids you've been taking), but they can be triggered by anything -- and nothing.
I've developed a problem where I periodically choke, sometimes just from swallowing saliva, or seeming to breathe. We've done all sorts of tests and so far, that's not my problem. Luckily I've been able to deal with it, but among my incredible team of specialists is an amazing gastroenterologist and she, every five years, does what she calls a tip-to-stern. She combines an upper endoscopy, where she goes through every millimeter of my esophagus on down, then thoroughly checks my stomach and as much of my upper intestines, then does a complete colonoscopy. Believe me, if there's anything to find, she's gonna find it.
But the reason it's making me think maybe that's where your problem lies is how you describe your problem.
So, first of all, do some reading. Look at your notebook -- use a highlighter and mark any symptoms that seem like they might line up with a problem like that. Then start calling. You need to find someone who is not just an expert in Gastroenterology or whatever, but who knows about eosinophilia -- ideally someone who is an expert in it.
I've forgotten where you live. I know how hard this is going to be. It wasn't easy for me to find, although the internet makes it easier now. Start with looking at organizations like APFED and contact the physicians there for the names of doctors closer to where you live. If you are in another country, you can still write them -- they can still help you. It's a small world of these people, so they tend to know each other, go to the same conferences, read each other's papers.
And as far as scratch tests go -- they are FAR LESS ACCURATE than blood tests! Don't waste your time. But if you have been on steroids and antihistamines for weeks before the blood test, the results will be skewed. Only an idiot would have the blood test performed if you were, but there are a lot of idiots out there.
Also, on the off-chance that I can help, you can send me an email through my website about my search, AsthmaOdyssey.com. And I think there's a way to IM through this site -- if so, I'll send you my personal email. That's a faster way to reach me if you need to.
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