Brittle Asthma and VCD

Hiya, this is my first time on Asthma UK! I just really wanted to share my story with you all, as there are probably many other people out there who were in the same situation as me.

I'm 17 years old, and had a little bit of allergy asthma when I was about 5, but nothing serious. Up until last September, I have had little bother with my asthma, just the odd brown inhaler when I got a cold. In every other respect I was considered extremely healthy. However, this all changed in September last year when I was being kept up all night coughing, and having bouts of being completely unable to breathe. When i went to the doctors first time, they said the classic 'no wheeze, no asthma' and got sent home feeling like he thought I was making it all up. It wasn't until I was admitted to hospital in December with severe breathing difficulties, and quite horrendous blood gases that I was taken seriously. I was in hospital for a week, and was started on seretide 250 and had a ventolin inhaler.

Things didn't improve after that. By the end of February I had 5 emergency admissions, 3 of which were to intensive care. This wasn't prevented even with being on prednisolone 30mg a day, seretide 250, flixotide 250, singulair 10mg, regular salamol nebs. I was pretty much a mystery to the medical profession as why this had come so out of the blue. I was diagnosed as having brittle asthma. This was such a shock for me, as I had no idea what my future would hold for me, I had just got a place at medical school which had been my dream for so many years.

The breakthrough came on my 6th admission, where my consultant said I must immediately be transferred to Heartlands hospital, where they have a severe and brittle asthma unit. I think it was really noble of him to actually admit he had no idea what had caused it and wanted me to see someone more experienced. When I was there they told me to go cold turkey on my medications and nothing happened..... Just like when I was taking the medication, there had been zero improvement.

This baffled them alot, but then my consultant there, who runs the SBAU, sent me for an endoscopy. It was then that they diagnosed me with VCD- vocal cord dysfunction. They are one of the only units in Britain that specialises in it. The thing about vocal cord dysfunction is that it completely mimics asthma, and can feel like your suffocating, and doctors panic thinking your having a huge asthma attack, hence giving you loads of medication that you don't need, that in turn harms you. Also, you don't respond to asthma medication, which makes doctors who don't know about VCD think that your asthma is simply very brittle. There was a lady on my ward who had been diagnosed with brittle asthma 30 years ago , had been on every medication available, including long term predisolone. She had just found out, after 30 years of being unable to work, that she had VCD, and in fact no asthma whatsoever. The really sad thing for her is that VCD can be treated and controlled by breathing techniques alone for a lot of people and no medication is needed. And the problems she now had alongside the VCD were because of all the medication they had pumped into her she didn't need. About 25% of people with VCD have asthma also, but also around 10% of severe/brittle asthmatics are actually misdiagnosed, when they really have VCD.I felt so grateful mine had been caught this early.

I guess the point of this message, is if anyone out there has severe asthma, attacks that come on very suddenly, that doesn't respond to the treatment, annoy your doctor about this VCD thing. It's definitely saved my life, if I hadn't gone to Birmingham, I would have been continued on these debilitating steroids that I didn't even need.

Lucy

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  • It can also make things more confusing let me explain my story!

    I was having what seemed to be allergic reactions so was dignosed with idopathic anaphylaxis then later asthma. I was going into hosp every 2 weeks or so. My consultant aimmunolgist refered me to heartland for ENT which they dignosed me with VCD and sent me to the asthma nurse attached to the unit. I thought now things would get better. I know the breathing exercises but still get attacks. However asthma specilist at SABU thinking it was my VCD causing them. I know the difference between my VCD and asthma attacks and generally my attacks that are every 4 weeks are asthma. My ENT and Dr's I see in ED are thinking its asthma uncontrolled. However the asthma drs are wanting me to go cold turkey. So going round and around in circles

    IF you do end up in some hospitals they dont know VCD so seem to treat you as asthma if you got both or wont do anything saying its VCD and ignore you when you try and say its asthma.

    They key thing that they try and get you to do is reconise the difference between asthma and VCD and the triggers for both. The like to think VCD is mostly stress related for me it isnt!

  • Even though I was overjoyed it wasn't brittle asthma, I did worry about just that. I have an alert card for A and E saying assess to see if it is VCD or asthma, and if in doubt treat as asthma. And then they were really firm about the fact I do still have asthma, so if the breathing techniques don't work, go to hospital etc.

    But then I got this awful image of going into hospital having a severe asthma attack, the docs saying, oh its just VCD and leaving me to suffocate! Oh dear... really hope this isn't the case!

  • Have you sarted with the speach and language therpist yet? She will help you relising myths about VCD one of them you vocal cords will never close up completely! eventually they will stop messing about. I wont go to hospital if I know its VCD I can do more at home (helpful gp giving me Diazpam)

    You will get some Drs its just VCD generally its the ones that come and see you when you are better and waiting to go home I have found! So I am there thinking you didnt see me in ED

  • yep, starting the speech and language therapy next week. Fingers crossed!

  • PM me if you have any questions or need a rant I have become very aware to the failures of the NHS relating to VCD!

  • Hi Lucy and Bizkid,

    I'm wondering if I have VCD (been referred to ENT dept from asthma consultant, waiting for the appointment). However, what makes me think it's not VCD is that although I can have unexplained nose dives (which appears inkeeping with VCD), I can also feel generally pretty rubbish - I assumed that with VCD you were either totally fine or totally not, but thought maybe you could answer that. Can you feel just a little bit bad with VCD? My peak flows tend to be stable most of the time...

  • When having a VCD eposode it can br minor so cant tell well with me anyway! Peak flows stable point to VCD. Could be a combination of VCD and asthma I get VCD attack when my asthma is bad. There is a good posibility that you do have an element of VCD due to the nose diving and assuming what seems as out of control asthma.

  • Great, thanks Bizkid. Thanks Lucy for your message, I can't reply because you have personal messaging turned off - that's interesting what you said about the endoscope, as my cons said that it was the 'gold standard test' and that if the camera didn't pick anything up, then it couldn't be VCD. The web suggests it would only be picked up on camera during an attack. My bronchosopy didn't show anything, and I was told I didn't have it... but then they referred me straight to ENT to see if treatment would help - weird. I've done a bit of investigation via Google, but can't find much really good info.

  • A bronch looks at the lungs so wouldnt show VCD unless they were looking for it! You will prob have a laryngoscopy. But can be hard to see if you dont have an attack but when I had one they tried to start a severe one. Its had to capture an attack as my local dosnt have the facilities to consently scope me

    I had a postive dignosis but I was lucky. All my symptoms pointed to it so would of tried the treatment anyway and I think the diagnosis is more on records and symptoms.

    There is americian site cantbreathesuspectvcd.com/i... that good enough! My sis is a web designer and is currently doing a british one!

    What hospital are you under?

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