Asthma/ILO (also known as Vocal Chord Dysfunction) and Post Covid Breathing

[flutterby84]

Hi, I was diagnosed with asthma when I was 15, so over 23 years ago. I have always had an atypical presentation with more of a cough than a wheeze. My asthma has started to get worse over the past three or four years, with massive exacerbations since I had Covid in January.

I have had three hospital admissions this year (with 13 presentations to A&E) and was diagnosed with ILO yesterday.

This diagnosis is a shock to the system and has made me anxious, scared and confused. I am pretty sure I still have asthma, but now I am overwhelmed. Have all the times I have been to hospital been ILO or has it been asthma? The inhalers and the nebulisers worked, so that must be asthma?

I am scared to go back to work or to go out, in case I can't tell the difference between the two and end up having a bad asthma attack because I think it is the ILO when really it is the asthma. Or I think it is my asthma and it is really the ILO.

I am sat here nearly in tears and feeling lost. I thought I understood all of this, and the link with my hayfever and exczema but now, I don't know.

And I don't know how to tell people in real life that I am sad and upset my hospitalisations might not have been asthma, because surely I should be happy that it might not be my asthma causing these symptoms.

I am just feeling alone with it.

[corriena]

Hi i understand you are upset scared and confused. Give things a bit of time to settele in your mind. Make a writen list of questions. This can help to put things into some kind if perspective. Call the Asthma british lung help line ( formaly BLF) and they may be able to help sort out your problems give you some answers, or at least point you inthe right direction to get answers. I hope you are feeling back in control again soon

[Bevvy]

I have been reading up on the condition because of your post. It is clear that people can have both asthma and ILO. It appears to be that if you get relief from inhalers then it is the asthma that is playing up… but obviously I am not a doctor or specialist in this area. I certainly don’t think you should be upset re hospital admissions. If they didn’t think you needed to be admitted you wouldn’t have been! Indeed it is far more likely that people who are seriously unwell (due to asthma) have their symptoms dismissed.

From your post it almost reads that you are concerned that ILO isn’t a “real” condition and as such you are feeling a fraud?? Certainly both conditions are very real and can be equally disabling. I agree with Corriena, write down concerns and questions. Have you a follow up appointment from this diagnosis? Even if you do give asthma and lung conditions a ring to discuss and also worth speaking to your gp. Especially if you have a good relationship with them.

Finally I had a lot of difficulty establishing my asthma/COPD overlap condition. At one point I was “diagnosed” by a consultant with vocal cord dysfunction. This was rubbished by the next consultant I saw. It can be extremely difficult to definitively diagnose many different conditions.

[Izb1]

It seems to be happening more and more especially with lungs problems, you get diagnosed then dumped to sort yourself out. Like you I felt the same when diagnosed with bronchiectasis. I had to educate myself and luckily found this site which gave me the knowledge i needed. Read up as much as possible so you know what you are dealing with and ask for an appointment with a consultant that deals with this so that you can ask your questions and get help with exercises. I wouldn't even worry about hospitalisations and why you were there, you needed help and thats all that metters. I think illness is a lonely place, but you do have all the members on this site right behind you, please remember that and post as often as you need to x

[Karenanne61]

Being poorly can be a very lonely place. I think we all feel shocked and confused with different diagnoses. I've nothing helpful to say other than you are NOT alone on this forum.

[Alberta56]

Hope you get answers soon and soonstart feeling better.

[knitter]

You did the right thing by going to A and E ……if you are having difficulty breathing you were in the right place . Never worry about asking for help

I looked at ILO , have you been given any advice about the condition .

Please contact your health professional again , explain your worries , how it is affecting your daily life .

Has your breathing pattern been checked …..how many breaths per minute , what part of your chest you are using …..tight upper chest or gentle relaxed belly breathing using your nose to warm and filter the air .

Have you been given a plan on how to monitor your asthma …..peak flow meter etc ?

Long Covid …..any mention of that . Covid and the lungs ?

ALUK has a helpline open on Monday for UK residents on 0300 22 5800.

Sending best wishes , take care.

[Shezxx]

hi sorry to hear this, what is ilo? I was told by chest cons that if you have asthma your likely to have vocal cord dysfunction from birth. i dont know how true this is but this cons is a cough doctor and not an asthma doctor.

You did the right thing by asking for help dont feel alone with this if your struggling with your chest please do keep seeking help with this.

hope your feeling better today x