utterly in a tiz about my condition

Tight chest, as if I'm being strangled, hard to breathe, cough...

-it was thought I had asthma, but it is now thought perhaps not, perhaps its allergies.

I have seen bits about xolair on the web, and it seems to say the allergies it could possibly help include dustmites, mould, cockroaches and pets.

But I know the triggers for me are people's cigarettes, paint and chemical fumes/smells, cold air, certain cleaning products, to name but a few.

I don't know why I'm so upset as my chest x ray was all clear & I don't have copd and I should be happy, but I'm just scared and worried now:

Scared the docs will now take away my inhalers (which are of limited help), and then how will I be able to breathe with the tightness & discomfort etc?

Scared I will not get a 2nd opinion by anothe chest consultant, and then what?

Scared they'll say it isn't allergies at all, but then what?

Scared xolair isn't appropriate for me, but then what?

The inhalers I'm on (serevent, clenil, ventolin) don't stop me feeling rough after I've been exposed to my triggers, but what I do know is that pets do not make me feel bad in any way whatsoever.

Really not sure what to think, except all this is going round in my head.

open to your thoughts. thank you.

6 Replies

  • Hi bbert,

    I totally feel for you, but I will say there is still lots more for your consultant to try even taking the allergy stuff out of the equation.

    I would say having spoken to them myself, that calling the fantastic asthm uk nurses on the freephone number on Monday and having a word with them may help settle your fears a bit and they may give you some suggestions for things to talk to your cons about.

    Good luck


  • The feeling of being strangled and with the triggers you listed cold air, smells etc sound vcd type of thing and things I get when VCD wasn't controlled and with the fact inhalers arent helping might be worth investigating.

  • thanks you guys.

    I was very shocked when the chest doc discharged me, without even taking on board my triggers or wanting to listen to anything valid I had to say, just very dismissive indeed saying it don't sound like asthma.

    Also whats VCD please, I've not heard of this, ta.

  • Hi Bbert,

    I can really sympathise with you here as I have been in your position with the symptoms etc, inhalers not helping so much and consultants being dismissive of what I say and not listening! I do feel that I am slowly getting somewhere now though so don't give up! Btw I have same triggers as you, not the feeling of being strangled but otherwise very similar; after a lot of back and forth at the moment they think it's probably asthma (which for various reasons I think is the most likely) but are also looking into VCD again. This is Vocal Cord Dysfunction which you can have alongside asthma and involves vocal cords spasming in response to triggers like exercise making it hard to breathe. Will leave the people with more experience to talk about that though.

    I agree with Angelica about calling the AUK nurses, they are great and have really helped me with what to do next on several occasions.

    I would also say that I am currently on my THIRD consultant having kept on struggling but not got anywhere with the first two. I was discharged back to my GP who luckily is very supportive and helped me until he got beyond his expertise in dealing with me. He then had to refer me again but I decided I was fed up with the long waits and rather dismissive consultant at my local and asked to go to London instead, as it's not that far away from me and I go there quite e bit anyway. You do have the right to be seen somewhere you choose, so I would firstly see what your GP can do (find a good supportive one if your current one is not) and if they can't help then ask to go somewhere else to see a different chest consultant if this is a reasonable option for you (if you run into problems here the AUK nurses are also very helpful and can advise you on what to do).

    I'd also say that it can take some time to find the right meds for you and that it's quite possible that if you're not well controlled and not on the right preventers your Ventolin might not work very well, but this doesn't mean asthma is ruled out. I was on those two and they never worked for me; I also tried some other things, ditto, and Ventolin didn't work well. Now I'm on Montelukast and Symbicort which is FINALLY starting to do something, and my relievers do work a lot better because they have help from the preventers. There is a lot more you can try b I appreciate it may be hard to do this if they're dithering about whether it's asthma, so ideally your GP would do what mine did and try things (not an expert but he told me this is a valid option with asthma) or alternatively arrange some more tests to see what's going on.

    Hope this helps, even if just to tell you you're not alone! I would say PM me but the system isn't working yet...but if and when it is please do feel free to PM if you would like.

  • VCD is vocal cord spasm they make it harder to breath in more commonly but can be out as well. They are attack type mainly and produce a stridor type noise on breathing in or out and a throat sound hoarse cough. The treatment is aimed at relaxing these muscles and this is done with controlling acid reflux and exercises with a speech therpist have a look at here cantbreathesuspectvcd.com/

  • thanks for explaining what vcd is, have not heard of it before.

    And surprisingly today I received news of another consultant appointment coming up next month, so that's brilliant, perhaps whoever I see next will take my triggers on board in fact I hope they'll take the whole picture on board, otherwise I think I will then ask for a second opinion.

    I have been in touch with phone helplines, this one being one of them, and at the moment everything each helpline has suggested sounds spot on, so I guess I need to keep an open mind till I get seen next.

    But pharmacists have reassured me, that inhalers are still given for certain other conditions and that mine may not necessarily be taken away if they help.

    to be continued...

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