Argh

[Lotti_321-]

Last night it all went rubbish. Coughing really badly, wheezing, chest tight and unhappy. So I went to a&E-given my alright o2 I was waiting for 7hrs to been seen and treated.

I was given a nebuliser cocktail of meds. Before nebs my peak flow was 300. Following neb, moving around talking etc my peak flow had got back down to 250. Wheeze settled. So dr sent me home to come back if needed.

So went to GP as didn’t feel satisfied, in that time the wheeze was back and said there crackles developing suggesting infection now as well! Regular ventolin to get through it or if no better to go back to A&E.

Only everyone keeps complaining at me for taking so many steroids but then can’t offer an alternative treatment plan and advice me to carry on the same.

I’m sick of chasing answers!

[twinkly29]

You must want to bang your head against a brick wall - if only to make your body focus on something else!

What other meds are you on?

[Lotti_321- in reply to twinkly29]

Couldn’t have summed it up better!

-Fostair 200/6 -2 puffs twice a day

-Qvar 100mg- 4 puffs twice a day

-Carbocysteine

-Montalucast (sp)

-Fexodenadine

-currently on day 9 out of 20 prednisolone tapering plan.

-nasal spray

-Ventolin as and when

[twinkly29 in reply to Lotti_321-]

Oh bum, I was going to suggest extra inhaled steroids but you're already on Qvar. What did the consultant say at your appointment?

[Lotti_321- in reply to twinkly29]

He talked about all the tests being negative or inconclusive. But how that could be reflected upon feeling well at the time. I’m one of these when I’m well I’m perfect it’s just those periods are becoming more far lived.

I have dysfunctional breathing but in the sense that I need to overcompensate to get through.

I don’t qualify for biological injections as don’t meet the criteria and is looking more like rare type of asthma that has limited treatment options being mainly steroids. Before going down this route because of the side effects; he wants to rule out any vocal cord dysfunction.

He’s previously tested this but is going to look at them when I’m on a bike. My first frustration is just how long everything takes from saying at one appointment we’re going to do this to it happening. Secondly when drs listen to my chest they hear a wheeze- sometimes I don’t know I’ve got it and there have been changes to my lungs on a recent X-ray. But he still wants to waste time relookingcag vocal cords!!

[twinkly29 in reply to Lotti_321-]

At my previous hospital the consultant was focused on that too. SALT immediately said they didn't think it was and ENT said vocal cords fine. SALT also then wrote back after sessions and said it wasn't that. That stopped him! But then he was determined it's dysfunctional breathing. While there's definitely an element of that, it's not only that and I found it really hard for non-things to be the focus.

Moving area means I'm now at a different hospital. But mine is also awkward. Most likely non-allergic therefore not typical but then pollen affects me. Being "difficult" is frustrating and hard work isn't it?!

[Lotti_321- in reply to twinkly29]

Sorry what’s SALT? It’s so frustrating being ‘difficult’

Sometimes I think they focus so much on looking outside the box at the contributing issues, like VCD, acid reflux, nasal drip, dysfunctional breathing etc. That they forget to look at treating the issue of asthma!

[Lotti_321- in reply to Lotti_321-]

Sorry the penny just dropped! Speech and language therapist! Duh 🙄

[twinkly29 in reply to Lotti_321-]

Yes! Sorry I was being lazy not writing it out!

And yes I completely agree - particularly when it's an area they really like, like VCD for example.

[Tenderspore in reply to Lotti_321-]

I'm glad you asked. I was just about to google.

[Lysistrata Administrator Community Ambassador in reply to twinkly29]

Also non-typical and non-allergic but steroids beyond my high dose ICS don't seem to do much anymore and likewise ineligible for biologics with wrong type of asthma. I seem to have 2 types at same time almost, all very complex! Agreed that they often seem to be really keen to dismiss asthma and focus more on the other things (and often seem to accept those with little or no evidence but 'proving' asthma seems to have barriers a mile high!)

I have at least got past some of that but still feel like they want to do the 'well you do have asthma but this is more dysfunctional breathing' when I am pretty sure the DB is firmly secondary and would go away if they sorted the asthma. A and E often better as they see me acute (but also have the no wheeze and ok.sats issue); cons sees me ok or recovering and I feel like he still doesn't entirely get my weirdnesses ans that I can look ok in bed but still struggle to move around.

The joy of unicorndom and ignorance about asthma! Sorry you had a rubbish experience Lotti321 - hosp really didn't get asthma it seems!

[twinkly29 in reply to Lysistrata]

Yes to consultant seeing the "improved version"! My previous place the consultant knew how I could be at local hospital but those where I was referred on to only ever saw me in clinic. Now my consultant is based where I'm admitted and literally the first time he met me was in resus (he knew of me from stuff previous consultant had sent and the med reg on call at new hospital went to find him when he realised I was mid-transfer). Since then he's had various occasions where he's been called up to the ward when things have been tricky, and I am fortunate that he's understanding and accepting that it's complicated. Having his support and the ward staff support makes such a difference.

[Lysistrata Administrator Community Ambassador in reply to twinkly29]

It does make a difference! Mine has seen me in hosp but not at my worst and still seems to think I don't need to be there half the time! He keeps wanting to do spirometry when I'm bad which ok would make sense, but when I'm at my worst I can barely move never mind get to clinic and do spiro. I think they think the way I am before ans after a flare is my worst, plus I know from before that my best readings are well above normal but I can't get evidence of that in this clinic. they talk about patterns (which is more useful for me than the one off readings) but they only do spiro once or twice a year...

oops sorry to rant! Definitely agree ward staff support helps...have had some very annoying ones recently who literally just judge on 2 secs of me sitting there with no wheeze! last admission way better as they really did listen and understand I was still struggling to move around.

[1974lovejoy in reply to twinkly29]

Exhausting .. but I tend to think life would be boring if we were all the same 😂!! Sometimes though boring would be good !!!

[1974lovejoy in reply to Lotti_321-]

I’m very similar and on several occasions have left if far too long and become very unwell .. yesterday I didn’t and although spent 24 hrs in hospital it’s better than the usual long haul !!!

I was also diagnosed with Vocal Cord Dysfunction but I can tell the difference now between the reactions my chest get and when I’m ‘throaty’. they insisted on the VCD testing as I pass all the lung function tests because like you I’m really well In-between and the RBH have never seen me unwell !! My local hospital have discharged me today with a referral back to the asthma team at my local hospital as discharged from RBH last year .. dreading it but I need it .. too many exacerbation going on !! But it will get sorted .. I hope

Go through the VCD testing as you’ll at least find out and then know the difference between the two !!

Good luck .. x

Apologies for the long reply

[Lotti_321- in reply to 1974lovejoy]

Thank you! I think I am just getting frustrated with the waiting for everything to be decided on.

[1974lovejoy in reply to Lotti_321-]

I’m still waiting ...! Don’t get too hung up on waiting fir decisions .. I did and it made me miserable .. it still does at times but I’m coping better now I’m trying to take back a little control and treating my symptoms as they happen !!! Although 6 weeks ago I didn’t .. I left it 6 days just using inhalers and nebs at work and ignoring everyone advice !! I was really poorly .. but I met someone who explained stuff to me in my terms .. I was admitted on Friday night again but discharged on Saturday which is a record for me ... I’m also able to return to work tomorrow which again is unheard of for me .. I feel so much more in control .. this time !!!

you’ll be fine .. vent on here and wake up each day and enjoy that day ... it can and will take over your life if you let it .. it’s s hard struggle at times ... and it’s something we have to adjust to !!!

Good luck x

[Morky]

Oh wow, that was bad, I thought 5 hours was too long to wait in A &E. Poor you, its so frustrating, its like they don't care. Then they send you home again. Not surprised you went to the dr, I would have too.

Always steroids, I have only just started on this journey and I hate them already. Its like, life on hold. Trying not to do that however but its not easy. They are horrible things.

Well, hope you are beginning to feel a little better, let us know how you are doing.

[Lotti_321- in reply to Morky]

Yeah 7 hrs waiting and further two hrs for treatment and follow up it was a long night.

It was just so annoying to go to my drs two after a leaving and be like you’ve got an infection starting and still be wheezy! You’d have thought A&E would have picked that up!

Yeah already was on steroids so just finishing the course. The infection has properly taken hold today so taking it easy! Hopefully as it’s been caught so early it won’t be too bad.

[CANINE12]

Hi I don't know if you have heard of reflux cough disease. I have this as well as asthma. There are a handful of respiratory consultants who specialise in this, Professor Alyn Maurice based in Hull being one of them. You can find papers he's written on it online.

Basically it has been explained to me as gaseous mist irritating the vagus nerve which is connected to the lungs, other major organs as well as the vocal chords. This causes bronchospasm and causes asthma like symptoms. I can be affected by both asthma and reflux cough at the same time which complicates things. My voice goes husky and I get voice fatigue when it's really bad. It might be worth a ski your consultant to look into it.

I went through seeing a speech therapist, another consultant said I had vcd but it didn't show up in the bronchoscopy, finally I was seen at the Royal Brompton hospital where they found I had reflux. Had to have a 24 hour double ph probe test that showed the reflux. This was over 10 years ago, I remember how frustrating it was trying to work out what was going on.

I have problems with pollen and strong perfume, I landed up in A & E on Friday due to both. I'm also now on steroids to calm everything down.

I hope you manage to get some answers.

I hope this is helpful , if not please ignore.

[Lotti_321- in reply to CANINE12]

Thank you, I’ll look into it

[Garden18]

Can you get referral to chest clinic ? They will sort your meds over time, do tests etc

[Lotti_321- in reply to Garden18]

I am already under chest clinic. I’ve had a multitude of tests and changes to meds. But still no answers or control