In the past 7 months I have been experiencing really bad coughing, difficulty breathing, chest tightness and I have been really tired. I went to the hospital but they couldn't quite figure out if it was asthma or not. I have been using asthma medications and I was prescribed a high dose but after it got a bit better it stopped responding, and the same after I changed medication. Lately I have been getting worse up to a point that I can't even climb the stairs without having a severe attack including very strong coughing and being totally unable catching my breath, and I am so tired I sometimes can't get through the day. As a result I have been really scared and sad and I don't think I can cope with everything... I feel cut out from my friends as they really can't understand how frightened I am every single time that I 'll and up in hospital or with a breathing tube. And as I am getting worse I am thinking more and more that it might be something more serious than asthma, as my doctor has suggested me getting a CT scan but they've been postponing it because of the amount of radiation it will put on my body... So in conclusion, I am afraid, i feel alone and I don't know what to do...
I am looking forward to your response
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Musicaddict
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Hi there musicaddict (great username!) & welcome. I can see this must be incredibly frightening for you.
Have you had any sort of spirometry done...they would have you blowing into a peak flow type device before & after taking reliever medication which would show what, if any, impact the inhaler is having for you.
Also, whilst ct-scans do put a lot of radiation into you I believe, it is still a fairly routine procedure unless there are particular reasons not to do it (for example you have had a lot of x-rays done previously, or another medical issue).
It could well be that it is something other than asthma, or a complication, but you need the medical tests to rule things in or out. Has your GP referred you to a specialist? That might be the next step to look at.
I actually have had two spirometries and there was a slight provement before and after the inhaler but not significant... I had a really night dose of the inhalers meds too for 2 months and although the symptoms should have gone complitly they got just a little bit better... My doctor is actually specialist at the hospital's pulmonary clinic so it is pretty much as good as it gets here... I really don't know what to do and every day I get really scared that this is the time I and up in tubes...
I know it's a lot easier said than done, but fear & anxiety can also trigger breathing problems so as far as you can, see if you can try to relax. I'm presuming you generally don't end up in tubes, so hopefully, you are still not that bad. I'd definitely try to see why he won't get a CT-scan though. I know there are worries about radiation levels, but it would show if you have certain conditions (e.g. bronchiectasis) so is arguably worth doing.
Yeah I actually think of having an appointment next week to see what can be done about that CT scan... So do you maybe have any suggestions off what I could to to stop having all these attacks( or so) like from your experience??
Presuming you are dealing with asthma, I think the big thing is trying to find what is triggering it. I always think in terms of allergies & triggers, so for example, for me:
Allergies: Animals, dust mites, etc.
Triggers: Smoke, perfumes & so on.
Something somewhere is triggering your repeated attacks, so I would really have a good look around your environment to see what could be there. Ask yourself if you feel like you do all the time, or in specific places. Is there anything in your living environment, such as pets, mould, smoke, etc.?
There are literally hundreds of things that could be your problem, or it could be something other than asthma.
It does get really difficult breathing with mostly all odors such as perfume and the soap on the clothes or even car fumes and all and I have an attack more severe if I am moving like climbing some stairs or even walking...like I can walk 1 or 2 minutes and I am totally out of breath... Also I live by the sea so the percipation levels don't help either I think... Well that was the general case I think,but the past 2-3 weeks it doesn't matter what I do ... I am always out of breath...
The sea is interesting - as a child (we're talking late 1960s/early 1970s) we'd go on holiday to the seaside & I would nearly always have a serious asthma attack. Obviously, treatment was very poor back then compared to now, but there was clearly something in certain seaside towns (Blackpool, North Wales & Scarborough were especially bad) that caused a problem.
If people are using strong scents around you, perhaps - diplomatically - ask them not to! Also, different types of washing powder might help, for example non-biological.
It is hard getting people to recognise that strong smells such as perfumes, chemicals, car fumes can make other people feel ill. They can make my breathing difficult, bring on a migraine and make me feel ill.
There is a small group on-line called Multiple Chemical Senstivities and they have a phone line manned by volunteers. First cut down your own use of perfumes, then ask your immediate family if they can do the same. There are a lot of scent free alternatives around. Products such as ones produced by Simple are good. At home I use an air filter. A hepa one which filters out perfumes as well as dust and pollens. Out and about I use a personal ioniser, which does go someway to helping. Some people use masks - you can hide them under a scarf in winter!
Perfume, some cleaning products, air fresheners - especially the plug in ones, scented candles, wood burning stoves, anything burning as well as many modern materials in furnishings and things like MDF all contribute significantly to indoor air pollution. This can be as bad or worse than outdoor air pollution, but as it is only beginning to be recognised, it is hard to deal with, as people often think you are just fussy. Is there any way you can try to reduce much of this in your own home? And, dare I say it, talk to someone in charge at school? Though I imagine the latter could be very hard.
I replied on your post on the other forum so don't feel you have to reply to both, I just copy and pasted!
Your story sounds pretty similar to mine. I felt I was almost constantly coughing for a year. I was initially diagnosed with asthma by my GP and given a reliever inhaler (the blue 1). My coughing did not stop, although taking my inhaler would sometimes help. My GP referred me to a specialist who gave me some breathing tests and a chest x-ray, which he said confirmed it was asthma. He gave me a preventer inhaler (brown at that point). Basically I kept going back for appointments and saying I wasn't better, so he gave me another inhaler (spariva) and montelukast tablets. I still wasn't getting better, and I got to this point one day where I was scared I was going to stop breathing. I kept coughing and taking my inhaler wasn't helping. I essentially had to go to the doctor crying for him to listen and he gave me a CT scan which showed I was right- it wasn't just asthma. For me it was bronchiectasis. I am definitely a lot better day-to-day after being able to do the right things for that.
It might not be the same for you, but if you haven't been referred to a specialist ask your GP to do it (you didn't mention if you had been). And push for that CT scan, if you feel things aren't improving let them know and tell them how difficult it's being for you, hopefully your doctor will try and get it done quicker.
Sorry for not replying here too, I have replied to the other forum 😊
Untreatable cough, chest tightness, difficulty breathing and poor response to asthma medication are a few of the many symptoms of silent reflux (LPR). It is often mis-diagnosed as asthma.
You may want to do some more investigation on the symptoms as there are quite a lot of potential symptoms and online articles.
laryngopharyngeal reflux, extraesophageal reflux, silent reflux are all the same condition.
I would definitely push for a CT scan. I have very severe brittle asthma which thankfully (after many icu stays and plenty of tubes) is under better control now that I am on mepolizumab injections. I’m still on a lot of other medications but at least things are manageable now.
The thing I wanted to mention about having scans is that for many years I was told my spirometry technique was poor and then sent to speech pathology because they thought I may have vocal cord dysfunction and blah blah for a long time. Eventually a CT scan showed that I have tracheobronchomalacia (my airways are too elastic and collapsing when I breathe out) as well as the asthma. It makes it very hard to cough anything up when I need to and breathing gets very difficult with a barking horrible cough. I am now on CPAP 24/7 to hold my airways open and although it’s unpleasant dragging a machine everywhere I am breathing so much more easily and hardly coughing.
There are many things other than (or in addition to) asthma that can cause severe coughing and shortness of breath. Definitely get more tests. There is also the plethysmograph which gives a lot more information than spirometry and isn’t so dependent on effort and technique.
And yes anxiety and fear will probably make breathing problems a lot worse. It does with me so I try to meditate and use mindfulness and grounding techniques when I feel myself getting worked up. With my degree of asthma severity I think I would be dead by now if I hadn’t learned to control the panic that comes with not being able to breathe.
I hope you find out soon what is happening with you. Wishing you all the best.
I think you should push for CT or your mum/dad should - it could be because you are 16 and still growing they are reluctant to use CT because of the radiation.
Another trigger not to be dismissed are there are a lot of pressures at 16, not least GCSE's and stress and worry in themselves can trigger your symptoms.. It is not easy but find some and practice some relaxation/mindfulness techniques.
Other triggers can be almost anything :
- smoke
- warm weather
- cold weather
Triggers/allergies varied as well. (pollen if have Hayfever as well).
Big one can be Dust mites found in bedding and carpets. Try making sure your bedroom is as dust free as possible. Laminate flooring can help you as easier to see and clean the dust.
When changing your bedding run the hoover over the mattress. If possible to leave bed to air from time to time try a steam cleaner on mattress.
If can and someone mum/dad can help turn mattress at least Twice a year.
Hope you get some relief soon as it is not much fun at any age and friends won't get it unless they experience it and you wouldn't wish it on them.
Please research magnesium deficiency and symptoms of magnesium deficiency also research vitamins d3 k2mk7 also if you research homeopathic remedies for asthma triggers (Arsen alb 30c) this one works for me good luck
Hi, sorry to hear your not doing well.
I must ask.... Do you/have you smoke? Do you snore? How do you feel when you wake up?
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