When your asthma nurse gives up on you maybe there is something else happening

Timothy! We have tried everything you can’t keep chopping and changing!

These were the harsh words coming down the telephone from my asthma nurse who was seemingly giving up on me. No offer of help, no understanding just the pain in the backside patient that she wanted rid of.

Can I go back to Symbicort? I pleaded, I’m wheezing on the Seretide .

No! You’ve tried it. It then seem to click in her mind who I was “You’re the guy with cats!” It was like being scolded by an elderly aunt.

Yes we have a cat, but we had him long before I had been diagnosed with asthma.

She eventually agrees to another trial of symbicort, which had worked well for my Wife and Daughter “it’s the last time!” she warned.

After two weeks on Symbicort I had a bunged up my nose, dry peeling skin on my face and hands, blotches on my neck and my eyes itched terribly. According to my wife I looked at least twenty years older – Too much steroid or a side effect? I was always on the maximum dose of Flutiform and Seretide. My Sister recommended Seretide and it worked for a while but like everything else it stopped after a week or so as if my lungs were some kind of coded safe that inhalers couldn’t unlock. Montelukast was then added to the list but it didn’t seem to work and the reported side effects seemed extreme.

In the back of my mind I knew my asthma wasn’t that bad to warrant maximum dosage especially when I look at the chartrooms full of sufferers who are genuinely struggling to breath I realize something doesn’t add up, I actually wonder if I had asthma at all.

I had only been diagnosed aged 52 when training for a marathon,. I had picked up a chest infection that seemingly left its mark. This is when I started my journey through the world of inhalers that had driven my asthma nurse to distraction.

Around the time my breathing problems started my voice also began to be hoarse and croaky which I initially put down to the chest infection and the various medications that I regularly inhaled; My stomach has also been playing up with reflux and the doctor put a probe down my throat telling me my vocal cords were being damaged by stomach acid so prescribed lanzoprozole

At this point I realized that any asthma attacks or shortness of breath were always at night and usually after I had eaten a lot of rich or junk food late in the evening. It also occurred to me that whenever I ate wheat it travelled through me pretty quickly and there are apparently links to asthma.

With no help other than Nurse Google I put my collection of inhalers in a draw only the Ventolin stayed nearby. It was time to see if I really had asthma or not - I was going Cold Turkey (please don’t try this at home)

Later that day my peak flow increased consistently to its best for a long time and has remained constantly so ever since. After five minutes on an indoor turbo trainer my lungs feel stronger the peak flow remained high.

I’m still aware of my lungs and breathing consciously trying to work out how they feel, its difficult to know. It could be there is still residue of steroid that is giving phantom readings or is it an effect of stopping suddenly but all the while the peak flow is high.

So there you have it. The reason that the asthma nurse couldn’t help with my asthma is because, maybe, I don’t actually have asthma or perhaps it’s a very mild form, so if option b, c and d didn’t work for you maybe try option e, f or g when your condition seemingly isn’t getting any better.

I’m far more careful what I eat these days. No wheat products which mean a new pair of reading glasses for all the small print labels and I wish it wasn’t chocolate that appears to affect my breathing but it’s a small price to pay for clearer lungs.

So, if your asthma isn’t improving on the medication you take and your nurse has given up on you too, maybe its time to think outside the box but obviously be very careful.

This is all self diagnosed and its still early days. I’m seeing a different asthma nurse, the other has gone off long term sick in a couple of weeks so will see how it goes.

6 Replies

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  • Oh dear, you seem to have been having a tough time of it.

    From what you have written it really does sound as though you are allergic to something - itchy eyes are a known symptom of that and the dry flakey skin could be eczema. The other thing you need to bear in mind is the fact that you had a cat for a long time before you had asthma does not necessarily mean that it cannot be the cat that is causing the problem now. Sorry, I know that's not going to be a popular thing to say, but I'm afraid that allergies can change over the years. So you may not have been allergic to cats when you acquired your feline friend, but that doesn't mean you are not allergic to it now - you could be. Only one way to tell for sure and that is to have allergy screening.

    Now the reflux issue. If you suffer from reflux there are things you can do to help and one of the first on the list is to be careful about what you eat, how much of it you eat and when you eat it. Fatty foods and spicy food, caffeine (sorry), citrus fruits, mint, tomatoes, are all known triggers for reflux (though triggers can vary from individual to individual). What is a certainty for all people with reflux is that eating food late in the evening is asking for trouble. As a general rule do not slouch, bend over, or lie down within an hour of eating, and do not go to bed within three/four hours of eating or drinking - you need to go to bed on an empty stomach. What can also help is to raise the head end of your bed about six inches and don't use pillows to raise your head end - you'll slip off them during the night - use blocks of wood under the feet of the bed at the head end. Reflux can cause asthma like symptoms (as I know all too well, being a sufferer of both), so if you suffer from it and have eaten a couple of hours or less before going to bed you might well end up with symptoms which may, or may not be asthma related.

    I've never had problem with wheat (though there are people on this forum who have) but I have been tested for it. You could ask for that to be done give what you have noticed about the impact of wheat on your digestive tract.

    Can I suggest you make an appointment to see your GP rather than the asthma nurse. You need to sort out what has been causing all the symptoms you have been having: allergies, reflux, or something else.

  • Oh I am so sorry..you can remind your Asthma nurse that Dr Sarah Elkin who was my first consultant and I miss her terribly told me controlling your asthma is all about finding the right inhaler!! And she knew she was asthmatic too I believe!!

    Okay a nurse is a nurse we are happy to have Asthma Nurses but I think you need to see a consultant and have a good thorough check up. Ask for a referral.

    Take care and let us know how you are getting on :))

  • Reflux definitely mimics asthma symptoms. I believe asthma preventative inhalers cause reflux in some people. I have been put on lanzaprazole long term but I just take it when I am bad as I am not happy having to take them every day. I had an allergy test at the hospital and it showed I had a wheat allergy but the diet is so hard to keep to. I asked my doctor if I could see a dietician but he refused so I struggle myself as wheat is in so many things!

  • I feel like I could have written your post. I have tried everything and now am beginning to cut back. My latest Pulmonary Function Test showed the inhalers - Serivent and Alvesco (USA brand) don't make a difference. I still am short of breath and have a tiny wheeze from time to time. Sometimes I can not tell where the wheeze is coming from. I take Ranitidine for acid reflux. I think when the doctors can not figure out what is going on they fall back on acid reflex. I also had a very bad check infection last spring and I feel like it somehow permanently damaged my lungs. I hope I get better like you.

  • Hope the new regime is still working for you. Good Luck

  • I realise you may not like this reply but my 24year old daughter has not been allergic to cats but during the last year has definitely become so.I remain fine with cats but am allergic to dogs which I was not as a child. 

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