Thank you - to all you weird and wonderful people in this community!

[Leith24]

Until I found this forum very recently, I thought I was the only person in the world who:

---Could not stand any sort of fragrance, perfume, shampoo scent, body wash, washing powder (even on other people) wood smoke, lillies anymore

---Had asthma and sinus trouble and reflux and could never work out which was triggering which!

---Had a hard time trying to work out which inhaler works for me (tried several)

---Had severe cramps in my feet and hands

---and my new one - now I think my jaw, which is causing tooth sensitivity, nerve pain and an 'off' bite

---felt guilty for bothering the doctors again to get yet another short term steroid course, but then it sends me bananas with anxiety, no sleep, irritability when I do. teh same with inhalers - asking for something strongr, but when I get it, asking to reduce cause I'm not abl eto cope with the irritability and anxiety.

I've always felt like it's just me, (*made to feel by medical professionals and the wider world) like there's something wrong with me for being so sensitive.

Now I know there are hundreds of sensitive souls out there having just the same profiles!

(any tips, anyone?!?!?!?!)

Thank you for all being just as much of a sensitive 'weirdo' as me.

and thanks for the advice!

best wishes to all, Sarah xx

ps - why is it though, that when I present the above to a mdeical professional/ENT consultant/respiratory consultant they act as though I'm the only person to have ever said it to them and have no answers at all?!!

[Chip_y2kuk]

Doctors are a stubborn breed... I remember being with a GP years and years ago and he said to me "coughing is not a symptom of asthma, maybe it should be but its not.... I can't do anything for your cough"

I've also been told the "there's no wheeze it's not asthma" more than once

I've also been told " my chests clear and I've got the best air movement of anyone they have ever seen" .... 36 hours later I ended up in A and E and they wouldn't let me go because I wasn't moving much air in my left lung

On the flip side I've had a wonderful a and e doctor who was really listening and guided by me (more than once)

I've been to out of hours GP and the guy said "your pretty clued up on your condition why is that?" ... I said to him because I lived with it and had done for some time ... its also because if you know your condition well the stubborn doctors are more likely to listen I found

I've also got a wonderful team now (respiratory and GP)

But know your condition and be persistent would be my advice

[Homely2 Administrator]

Do not let the doctors get you down.

They are sometimes wrong and like to minimise communication so you cannot work it out.

[djbctla]

I relate with your sentiments. Bernardine xxx

[Poobah]

It's not just asthma, I've found, when it comes to the medical profession. I have hypothyroidism and anaemia too, but they took yonks to be diagnosed. I knew I had a thyroid issue but it took around 10 years for a doctor to concur, & by then I was very ill. The anaemia took around 2 years - "it's just your asthma", but I kept saying that the breathlessness was very different to my asthma. When eventually a respiratory consultant I had never seen before actually listened to me they sent me straight for a blood test and the next thing knew I was admitted to the chest ward and having a blood transfusion as the anaemia was so dire.

I think I'm articulate and advocate quite well, but sometimes I feel patronised by some doctors when trying to have a discussion about my health. My consultant has put on record that I can have Azithromycin each winter if I have a flare or a chest infection, however, one GP I saw just before the new year just poo-pooed that and gave me doxycycline and Prednisolone (which doesn't have much effect, except to make my blood pressure go beserk). The "I think I know best how to treat your asthma" from someone who had never seen me before, was so frustrating, and the cherry on the cake, "if that doesn't work then I'm sending you for an x-ray", all while staring at the consultant's letter stating, "giver her Azithromycin as it's the most effective treatment for this patient".

I've also been told by a consultant, about 40 years ago, that if I try anything in the way of alternative treatment that I would have treatment withdrawn (respiratory clinic). I had suggested I try hypnotherapy in order practice being calm during an asthma attack. Anyone would have thought I had suggested a black magic ritual. So when I experienced anaphylatic reaction to aspirin, I almost didn't mention it at my respiratory clinic appointment as I just assumed that I would be met by a total lack of interest. Fortunately, the lady consultant exclaimed "eureka" and dashed out of the room in order to talk to the head of department. They changed my inhalers and I haven't had an emergency admission for asthma in the last 40 years.

I should say, I've had some great doctors and nurses who have gone beyond all expectations and they have certainly been life savers or life changers. For them I am deeply grateful.

As for tips, I have found that doctors are very susceptible to gratitude and occasional flattery. I guess like most of us, it's nice to be appreciated for the job you do. It definitely works well on surgeons. I'm not being insincere, but any glint of someone paying attention to what I'm saying and I will say how much I appreciate being listened to. Doesn't always work, but it seems to work most of the time - when I can remember to be gracious that is.

[Sueafloat]

Hi there and welcome to the madhouse! 😂🙃You are quite right. You are not the only one but for years I also felt the loneliness of thinking that I was.

Scents and various aromas do trigger me off too. 😒 So much so, that I void/don't go to precincts that have these bath bomb retailers and the perfume kiosks in. Just walking past their door sets me off. Nothing worse than being stuck on the tube/train/bus .. with someone who thinks that they smell so wonderful wearing the latest stink .. that we all should be thankful to them that we are forced to enjoy said joy 😊 however, can not breathe as a result of that delightful aroma.

Then there are the many times .. that I have actually had to get up and move or even get off (single decker) bus/coach and wait for the next one to come along whilst still coughing g my heart ❤️ 💙 💜 out and often being made late to work as a result?

Then there are the paints and related chemicals for life that also tend to kick off. Etc.

Funnily enough covid has helped me out here .. as having to wear the masks and finally getting used to them. I have noticed that my flare ups have dropped hugely.

So, I now continue to have a cloth mask in my pocket to put on in a shop that might sell such described stinky stuffs that make me feel so ill.

I hope that you manage to sort something similar out to help yourself. 🤩🙂🤩

[Cloudancer in reply to Sueafloat]

Can totally relate to that -when I was able to travel going through the duty free perfumes was a nightmare especially if over enthusiastic sales girl tried to spray you with latest must have perfume as you tried to side step past!!!

[Sueafloat in reply to Cloudancer]

Yes, I agree. These sales assistants are virtually assaulting you when they spray scent infront of you and are assulting you if they spray it over an individual.

There should be a manditory policy whereby, they (the companies and individuals on the companies behalf) .. must ask for permiasion to do so.

These companies and their assistants do not seem to realise that this is not appropriate and can be very dangerous to some. At the least can/often can cause breathing distress which can and does go on to cause serious harm to some asthmatic (and other lung disorders/diseases) individuals.

If taken to its furthest extent .. these actions forced on to the wrong person, in the wrong situation .. could eventually even possibly lead to an early death (if it has not already)?

[Spadehandle]

I totally sympathise! You are not alone !!!

Perfume, cleaning products, air-con, flowers to name a few all trigger a cough, which I may have to endure for days and sometimes weeks if I’ve not been able to get away from the situation quickly enough!

This causes me anxiety wherever I go, as you just don’t know what you are walking into and how you lungs are going to react!

For me it’s always a dry cough and my lungs feel intensely irritated 24/7!It really gets me down when I’m going through an episode! However it disappears at night which is so bazar!

I have an asthma diagnosis, (which I doubt) and my inhalers do little if anything to relieve my symptoms!

I would love to see a specialist who deals in hypersensitive cough /hypersensitive lungs if such a person exists!

Incidentally for me a brandy, vicks Vapor rub, or chilli oil, give temporary relief from irritated cough!

Not suggesting anyone tries it, but would be interested to hear what others do!

GP’s really don’t have a clue and are resistant to try anything which isn’t on the usual asthma route!

Good luck everybody!

[Sueafloat in reply to Spadehandle]

You are so spot on there with your descriptionI also suffer from and in the various situations you mention. But strong overpowering scent/aroma's are my main bug bear.

Hence, why I have basically stopped visiting these places, taking a busy bus in busy times etc. Which means that our lives are curtailed as a result of other people's thoughtless actions.I dont mind people using perfume or sprays ... just leave out the spraying on themselves the whole half the bottle each time! Leave some for another day or week preferably! 🤣

Like you, I do not find my preventer or calmer to be of much use (some occassionally but not much usually) although I do use them.

I too have also said that I don't feel that I have asthma (that there is more to my condition than just asthma the stock answer to everything respiratory related) .. to the many GPs over the years.

They have always said that sprays and steroids are all they have to offer. And yes, I have tried many.

My husband, is a chronic asthmatic (who has been often hospitalised as a result) and I simply do not have similar symptoms. As my breathing is very definately very highly sensative in some situations and with some products usage whilst being non existent (or virtually) in many others that should be common triggers?

[Lysistrata Administrator Community Ambassador in reply to Sueafloat]

Obviously you may not have asthma Sueafloat - as you say there are other conditions, and they should be at least considering those if you don't seem to meet the criteria for asthma.

However, asthma itself can be pretty variable both between people and for the same person, and it has multiple underlying mechanisms that lead to airways being twitchy. Not all triggers are the same for everyone, and if for example you have non-allergic asthma, you're unlikely to react to common 'allergic' triggers such as animals or pollen. I'm forever getting the assumption that I must be allergic to animals if I have asthma, and I've also seen people saying all asthmatics get worse with stress. Neither is true for me but I do have asthma! (I do also react to some strong scents, but not all - my lungs can be selective. They dislike cheaper perfumes but are fine with the old school expensive ones which I suspect have a different base. They also react to certain natural substances like lavender or mango, but not at all to the cheaper commercial extract versions).

Not really responding to asthma medication is probably a bigger clue for you that it might be something else. Can you ask for a referral? They're supposed to refer if the diagnosis isn't clear, though you may need to push!

You may also want to give the helpline a call to chat through with the nurses Call us on 0300 2225800 or WhatsApp [phone] Monday-Friday 0915-5pm

[Cloudancer in reply to Spadehandle]

Agree wholeheartedly have lost count of the number of times a well-meaning doctor has said "you are not wheezing so you are ok" usually in a/e right before my lungs shut down completely and the resus team come galloping in to save the day!!!

[Oscarpebbles2021]

Hi I've had asthma for 30 odd years, and certain smells set me off too. Can't abide lavender, polish, oven cleaner and lots of things. I use, Lakeland oven gel no smell. Damp dusting helps. and I hate strong perfume.it's very common in our condition.

[Sueafloat in reply to Oscarpebbles2021]

It is so nice to know that we are not alone and going crazy! 😛😂

[ISew194720]

they changed my Fostair to Reluar the yellow one but I do feel anxiety on them

Fostair was worse

[briqua]

As for the sensitivity to smells - if I am around someone who has strong perfume on, smelly candles or anything made from chemicals, my first instinct is to burst into tears. I have no idea why. I was at a quilting show and so many women wore perfume. I had to leave and stay outside. I tried on three occasions to go back in but the tears just wanted to come straight back. It doesn't make me cough. The doctor thinks it has something to do with a childhood experience but I have no ideas on that as I don't remember my mother wearing perfume at all. I have a little jar of vicks that I keep in my purse and if I can smell it I put some up my nose and it definitely helps. I was diagnosed with asthma at 69. Constant coughing. Sore throat, hoarse voice. Now hardly ever cough but can't get my breath with exertion, such as running. Had nose polyps that were considered not bad enough to operate on. No allergies either unless you count my reaction to perfumes etc. But I don't think you can call crying an allergic reaction. I too thought I was crazy. Would love an explanation.

[Mandevilla in reply to briqua]

You probably had an unpleasant experience when you were very young that you link with the smell.

When I was very small, a woman who was waving her hands around while holding a lit cigarette accidentally touched the burning tip against my bare skin. And when I started crying, she laughed and said it was funny that she'd burnt me. I can't have been older than 4 or 5, but to this day, I get anxious and edgy around people who are smoking or if I smell cigarette smoke!

[briqua]

That woman was nasty. That was no laughing matter. Sorry to read that. I also can't stand the smell of cigarettes, or even beer. Give me the smell of a ships diesel engine or tar and its lovely. I have never worn perfume so perhaps that should be a clue for me. I loved as a child making rose water perfume though. Natural smell. But never found a perfume I liked. Found it hard even sniffing them. Then you get scented candles, potpourri, add the fake perfumes to that it is awful. I love the smell of fresh cut grass, cattle, horses, even pigs. My mother never wore perfume or any member of my family. I once sat opposite my daughters mother in law who had perfume on. I tried to cope with it but had to run to the ladies in tears. She asked my daughter what was wrong with me and she said your perfume. She went and tried to get rid of the smell and I moved to a different seat, so I wasn't so close to it. I was fine then. I apologised and so did she. Went to look at houses for sale. They wreaked of a damp smell. No one else could smell it. Turned out the agents were all wearing perfume. My daughter made sure the car windows were all open as it was the agents car. I dont like going into department stores that have their perfumes and make up as soon as you walk in. I hold my breath and basically run by. I know what will happen if I don't. I feel totally stupid at times when I have to leave places. The Vicks up my nose does help though. Disguises the smell. I was hoping to find someone else that had the same reaction to perfumes etc. I don't think it is related to my asthma.