I have been a chronic asthmatic since I was 13 months old, on inhaled steroids since I was 3yrs old, and I'm now 29 and this has never happened to me before.
I started to reduce my inhaled steroid Symbicort about a year ago, rather than taking it once a day I very slowly reduced it to once every 3 days which was working perfectly fine for a year up until a couple a weeks ago. I started to feel at night when I went to bed like my nose was inflamed which made it difficult to breath but didn't seem serious, then gradually over the course of a couple of weeks I was getting asthmatic everytime I layed down, but again it was treated with my Bricanyl inhaler.
On Sunday night I had a massive asthma attack that no inhaler was solving so went to my local Walk In centre and was nebulised and given Ventolin to replace the Bricanyl, and put on oral steroids for a week of 30mg a day. The next day I still felt I couldn't breath so went back to the walk in and was told that my oxygen levels were 99% and my lower lungs were clear but I felt like I was suphocating slowly, and still felt extremely asthmatic. The doctor there upt my steroid dose to 40mgs a day for the rest of the days, but I was still getting no relief and being sent home asthmatic purely because their machine said I was getting enough oxygen.
In a panic that night I took another 30mg of steroid and within hours was breathing so much better, and this lasted for around 12 hours. However that night again my breathing became so bad that I had to rush back to the walk in where I had another nebuliser but was still being told that I "wasn't asthmatic" because the machine kept saying I had 99% oxygen in my airways.
I then went to my GP today as an emergency as yet again couldn't breathe and felt I was gasping for air, saw a really incompetent nurse who didn't listen to me saying I have been on an inhaled steroid since I was 3yrs old daily, and she prescribed me a new steroid inhaler from the 1970s (that brown one, only 50mg) and said it would work because "I hadn't taken inhaled steroids before", when I corrected her (I mean how can you be this stupid with asthma?!) she said the doctor had told her to prescribe this (which is true but the nurse told the doctor I was only ok ventolin and didn't inform her of any of my steroid use). When I went to the pharmacy the pharmacist said it was a very strange thing to do to give this very old and basic steroid inhaler to someone who is in such an acute state of asthma, and that my current steroid Symbicort is 100 times better.
I feel completely alone and like my local surgery and nhs don't know what the hell they are doing, so I took another 30mg dose of steroid tonight in the hope it will help me. I feel like my lungs are closing, like someone is sitting on my lungs and crushing me while I drown or like someone is suffocating me. It's all in my upper lungs and piping where it just feels so so inflamed and is making me feel breathless. I am also coughing, and also have an extremely bloated tummy. I don't know if this is from the steroids.
My questions are:
How come they are not detecting how much I am struggling to breathe, and if like they say I am getting enough oxygen then what on earth is happening to me and why do my lungs feel so raw and punched up?
Is it safe that I doubled the steroid twice (I won't be doing it again) and will I get long term side effects? I am on day 5 of steroids and have seen no change unless I take the huge dose (40mg in the am, and 30mg at night. I am 5ft 4 and 10 stone 5).
Can I die of an asthma attack if this keeps being neglected considering they don't think I am struggling to breath and yet I clearly am?
Is there a reason the doctor thought it was a good idea to change my steroid to the brown 1970s pump with a much lower steroid dose than then Symbicort I have been on for years?
I am taking around 35 puffs of a Ventolin a day, is this dangerous the nurse said it wasn't?