I was wondering if anyone has any advice for me.
In November I had a weird reaction after eating some Japense meso paste which was put down to an allergic reaction. After this I had several reactions that involved feeling itchy and have a weird sensation about me that I knew something bad was about to happen. With each reaction the symptons got worse until I was hospitalised for a weekend in December as my airways had narrowed. After this the GP gave me an epi-pen to carry with me.
In feb this year I was again hospitalised with a reaction bordering on anaphylaxis which they decided triggered a severe asthma attack and lead to a 3 day stay in HDU on the brink of being anaesthetised, intubated and ventilated twice. They do not know what had triggered this.
I am under a thoracic consultant who is treating me for asthma and an immunologist who is allergy testing.
They have confirmed I am allergic to shellfish adn I have been told to avoid all seafood and am on a gluten free diet.
Over the last 9 weeks I have had a further 3 reactions. one was to after sun lotion that gave me a rash where I had applied it immediately and within 2 mionutes my lungs were shutting down. I again ended up on ITU on brink of being intubated, 3 weeks later I had an asthma attack, I think triggered by dust from moving house. however, this was complicated by them taking arterial blood sample using heparisised syringes. Everytime they did this I deteriorated adn was more difficult to stabilise and again I ended up in HDU. I am now not allowed to have the following medications heparin, cyclizine and erythromycin.
Last weekend I had another reaction, No idea what to this time. I again had to call an ambulance out ( as with each and every one of these attacks). It took 4 lots of adrenaline, lots of nebs and steriods to control it and the rebound reaction I had.
No-one seems to be talking to anyone, let alone me. neither consultant seems to want to see me. No-one will do any tests to confirm what is going on.
I am so confused and scared. I hate it when I get the feeling and know that within a matter of minutes I will literally be fighting for every breath I take and on the verge of completely passing out.
I just want to know what is causing it and how to stop it and feel that the consultants telling me that it is trial and error and I will just keep discovering things rather that testing for things is not helpful.
I feel really unstable after these last 3 reactions and just worry that another one is round the corner adn I'm not sure how much of this I can take.
Is anyone else in a similar position or has any advice for me.??????? I would appreciate any help.
Oh PS my current meds are:
cetrizine 10mg twice daily (antihistamines)
Montelukast (singulair) 10mg once daily
seretide 250 inhaler twice daily
If I have a reaction:
upto 3 piriton tablets (12mg)
Epipen every 5 minutes until help arrive