Weird form of asthma

[Aquariel]

All my life I've had asthma in May June due to grass pollen. I moved to Cornwall and now its every day. I've been to consultants but they're baffled. No inhaler works on it above 5% , youcan imagine what that's like and they avoid me. I have a normal FeNO of 11 which is what gets to them. The severity follows the pollen trend on Microsoft Weather. They talk about acid/throat problems but the cures don't work. I lost a stone in weight, no difference but they're not sure about it.I believe its rubbery airways from having Ehlors Danlos which exists in my family, bendy thumbs etc or possibly the bad Norse gene that can cause Viking finger and bad lungs. Getting gene testing obviously isn't going to happen...I have 15 points for EDS but no mobility problems but internally, guts don't work etc.

[Homely2 Administrator]

Personally I would go back for a while to where you previously lived and see if your asthma gets better.

If you can prove it is location specific you can start to narrow down the cause

[Aquariel in reply to Homely2]

I know its grass pollen and wheat allergy. It follows every detail on a microsoft pollen map. I happen to live in the UK's most prolonged place for it. I can't sell house so I will have to leave the husband and go live in Shetland where we used to live. After shingles my reactions to a lot of food and pollen increased massively down here in Cornwall. If I take inhalers, firstly preventers still don't prevent after 4 years and I react violently cramp wise and breast pain. Bricanyl will reduce it but the blood sugar rockets and I get a pain in the airways. I've tried about 8 different types. The consultant thinks its stomach acid but had tests and it showed nothing. Seems I don't expel air in a normal manner. Very restricted.Iusually get comments 'bizarre, never seen anything like it'. Then its very positional. Ican't sit down unless I'm ramrod straight and I can't lay down unless I'm dead straight on my left side. I have a husband and a very old house or I'd be off to Shetland. If its too bad I drive to Lands End and sit in the car park. I have a very restricted diet because of it.

[peege]

Have you had all the allergy testing on offer Aquaria? Something odd in your new abode?

[Aquariel in reply to peege]

I waited on a list and then got refused

[peege in reply to Aquariel]

Oh how infuriating. I'm not a doctor however, it was a great help to me to have some skin prick tests and I'd never have known that my main allergy is mould, secondary allergy to aspergillus - I was very relieved that my lungs weren't colonised with this fungus which was one of the things I was being investigated for (it shows in sputum tests and as black patches on CT scans: as told to me by consultant). Could you possibly get this done privately? If I had my time over I'd have paid for allergy tests and CT scan instead of suffering for 3 to 4 years before diagnosis . The allergy testing was by scratching my skin then drops of allergen into the open skin, 6 of them pet dander, dust mite, aspergillus, mould and I forget the other two.

I wish you the best in getting a diagnosis. P

healthunlocked.com/edsuk - have you had a look ?

[Patk1]

Do u take daily antihistamines

[Aquariel in reply to Patk1]

2 loratadine a day every day. Cetrizine lay me out

[Aquariel in reply to Aquariel]

one of my characteristics is that every drug behaves in a bizarre manner. Always so for me and my mother's relatives. This is why I believe its EDS.

[Patk1 in reply to Aquariel]

Fenofexadine are gd

[Aquariel in reply to Patk1]

Nearly had a stroke with that. 1 tablet and next day a pneumatic drill was piercing my head. I wasn't exaggerating when I said I can't take normal every day drugs. The only tablet I can take is naratriptin.Even paracetamol for a week becomes difficult. Diabetes drugs equally as bad. I usually try those in 1/4 quantities and then they go bad after a week. Our family has some serious condition, always have had, but nobody has a clue. Its getting really serious as I approach 72.Before I moved to Cornwall from Shetland 4 years ago, I was mountaineering and walking 6 miles a day along coasts.

[Potatocrisp in reply to Aquariel]

Sorry , just seen your previous response regarding Fexofenadine making you ill .

[Potatocrisp in reply to Aquariel]

Fexofenadine very good antihistamines . Better than Loratadine.

[Gwalltarian]

Asthma drugs cause the sphincter muscle above the stomach to relax allowing reflux causing asthma symptoms. I tried a number of composite inhalers and after 6 or 7 days I’d find that though the asthma initially improved it then got worse. I’d been on Omeprazole for years - and the above happened while taking low dose omeprazole - when I decided in January I needed to stop taking it. There followed an horrendous year of stomach acid burning, asthma worsening and bad reflux. The no mow May greatly contributed to increased pollen and an increase in asthma symptoms. I went from a very low dose of Flixotide to Fluticasone, Fexofenadine and Montelukast. By the end of August I changed back to Flixotide as I felt the laba in the Fluticasone was causing the relaxation of the sphincter muscle hence the acid reflux was persisting. I’d also stopped the Montelukast and later the Fexofenadine. I take ventolin/salamol, saba, when I need it, some antacid as and when needed along with Flixotide which is just a low dose steroid inhaler. The asthma is now better controlled even though I’ve had a bad cough with covid and breathlessness in the last month and the acid reflux is mild and controllable.

You could try raising the head end of your bed and sleeping only on your left side. Try taking antacids two hours after eating and eat small portions. You can look up foods to eat and avoid for acid reflux online, avoid spicy food, raw tomatoes, carbonated drinks, chocolate and eat/ drink celery/ celery juice and ginger and generally healthy eating. I take it you avoid wheat products such as bread etc as much as possible as you are allergic to wheat.

Do you use an air filter and dehumidifier indoors? You mentioned you live in an old house so it essential to ensure that moulds, dust etc are obliterated and if you have animals make sure that they and their bedding is washed frequently. Don’t use air fresheners and avoid anything that you notice triggers your asthma.

Good luck