Scared, confused and in need to help

Hi

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.

Many thanks

H

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

salbutamol inhaler

salbutamol nebuliser

4 Replies

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  • It may help for you to complete a daily diary for items of food eaten, items touched, activities undertaken to try and identify the suspected items for causing the allergic reactions. Have you been tested for any airbourne allergens yet? I think when I had my testing done I was lucky because I had suspicions of what was causing most of my problems which were unfortunately confirmed. I would suggest working out the questions you need to ask your consultant/doctor before you attend and asking them at the consultation.

    I have found that I keep badgering everyone nicely when I know there is a problem and I feel something needs to be done, my doctors have realised this now and I have got to the stage where when I tell them there is a problem they do something about it.... (only taken me four years to get them this well trained! ;)). It can be hard when you feel you are on tenderhooks the whole time.

  • Hi hfm83,

    Firstly - welcome to the AUK boards.

    I'm sorry you are having such a rough time of late.

    I'm a brittle asthmatic, having had generally well controlled asthma until my elective during my final year of med school in 2005. I noted your occupation from your profile - imagine you wish that you could turn off your vet brain and knowledge as much I wish I could do the same with my medical one. A little knowledge can be a very bad thing when going through things like this, and so much of your knowledge will be transferable to the situation your are going through.

    I'm similar to you in that something in sushi, (not sure - but suspect miso paste or wasabi) gives me allergic reactions approaching anaphylaxis. Am not in a huge hurry to try it again to figure out what component of the food it was i reacted to, but accept could have important consequences on my diet and may infact explain a few of my other extremely bad reactions and poor asthma control - particularly when you consider what the underlying substances are and what they are related to. Some research I did shortly after my allergic reactions revealed the following which may or may not be of interest (from the ever useful wikipedia)!:

    Miso is a traditional Japanese seasoning produced by fermenting rice, barley and/or soybeans, with salt and the fungus kōjikin, the most typical miso being made with soy.

    Wasabi -(Wasabia japonica , Cochlearia wasabi, or Eutrema japonica) is a member of the Brassicaceae family, which includes cabbages, horseradish and mustard. Known as ""Japanese horseradish"", its root is used as a spice and has an extremely strong flavour. Its hotness is more akin to that of a hot mustard than the capsaicin in a chili pepper

    Regarding your drug allergies - I'm also allergic to aspirin, and some brands of iv hydrocortisone - thought due to the additives/preservatives used, rather than the hydrocortisone itself. I'd suspect that your reaction to the heparinised syringes would prove to be something similar... as you'll most likely have had low-molecular weight heparins during your other hospital stays without reactions.

    True heparin allergy itself is very rare, as it is a natural substance produced by the human body - by mast cells and basophils.

    The heparin used in the UK is usually derived from either porcine or bovine sources, so you can run into trouble if you are sensitive to pork or beef products. Certain heparins along with some other IV drugs also have either benzyl alcohol or castor oil as preservatives or dissolving agents. They are thought to be the cause of the majority of allergic reactions to IV meds, with salicylate and sulphite based preservatives being other culprits. I even know of someone who is allergic to the sulphite based preservative in one of the brands of auto-injector adrenaline, which is rather unfortunate for them!

    Other than your seafood allergy and gluten free diet - do you have any other known or suspected food allergies?

    It is frustrating when consultants etc want to follow the 'trial and error' approach regarding allergies, as it feels a bit like they are entering you in a game of russian roulette! However, as I imagine you know, the tests are not all that effective/accurate - I'm extremely allergic to cats on RAST testing, but have no demonstratable reaction to them nowadays, and am not detected as allergic to some other things on bloods, yet quite clearly react to them in real life!

    Do try telling the doctors how you are feeling. It is often really hard to do, but if they realise how anxious you are about everything that is going on, they may sit up and listen a bit more. Also, there should be lots of room for playing around with your meds.

    Anyway - whilst having obviously not really helped - maybe i've provided some info to think on, and to let you know you are not the only one. Hope you get things sorted very soon. Please feel free to message me directly if you have any questions or just want to chat.

    best wishes,

    KSD

  • hi every1,

    i can understand why you are very scared, i was diagnosed with brittle asthm,last october aged 24 and 17 weeks pregnant, even though i hadnt developed it in a previous pregnancy i had 14 hospital admissions and 3 I.T.U stays and become a frequent user of cpap i have been on 8 steroid tablets a day for nearly a year now which causes the worst side effects ever and i am sure this is why my baby was born small and early i also use 4 inhalers pulmicort, oxis, salbutol and iprotopium(dunnoif thats right spelling lol) i now take bone tablets because of the steroids i have allergy tablets and 2 lots of nebulisers, my sats are never above 95% unless am on oxygen and after all this my asthma attacks still continue. my allergy tests show i am not allergic to anything and i dont smoke, have no pets and it never left me after i give birth (by c-section and on cpap) like they said it might i go to a consultant every week and they is no family history of asthma so i sympathise with you loads but as i know fighting to breathe makes you panic i think when i started understanding when it was going to happen and understanding the signs of a big attack helps because then you are confident that with the right timing and treatment you will always recover from an attack. gud luck x

  • Just wanted to say thank to everyone that has posted a message

    I have now phoned my consultants secretary twice this week and know that the hopsital have sent a letter to both consultants following my last attack. My respiratory consultant's secretary said that she has told him I have rung but that that is all that she can do. Apparently he goes away on holiday next week so I just have to wait. I feel like going spare and shouting at her does he not realise that each time this happens and is really severe that I feel like it would just be easier to give up than fight it and I am not normally a person who quits.

    Sorry for the rant just frustrated.

    H

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