I've just come back from the GP/Consultant today. I'm pretty angry to say the least-having seen the consultant previously and him saying he's not certain but is thinking I have brittle asthma, he's now saying he doesn't think i'm asthmatic, doesn't have any idea what my presentation is about or what else to do. I feel completely let down by everyone and now i'm thinking it's all in my head and i'm doubting if I've ever been unwell. What makes me more angry is I have no management for the existing medication i'm on and no real plan to move forward with this other than having repeat histamine challenge and 24hr ecg. To think i've been on oral steroids and high dose inhaled steroids for no reason makes me livid. I've had a hip problem that I think has occured because of pred. I was put on pred for 12 days because I was exhausted, dropping sats and reduced lung entry on right side as well as breathless. Saw GP again today as waking in night and no one knows what to do so I sit at home with resps 30 shattered and on ventolin 4 hourly. I'm also on highest dose of seretide too. I genuinely don't think it's anxiety and my 'asthma' flares have happened in Oct/Dec/April and seem to be weather dependant. I've been breathless with resps 30-44 dropping sats 92% raised pulse on exertion. Shattered with dropping peak flow (in winter). But because as usual no wheeze and clear chest I'm being doubted. Yes my peak flow is stable now but I honestly only think that's because i'm now taking my steriod inhaler religiously through a spacer. I just think well fine if we're saying its not asthma, lets stop all meds and see what happens! Also i've been waking at night around 3 short of breath and tight chested and no-one apart from asthma uk seems bothered. It's like i'm talking another language!
Please telll me i'm not crazy. Thinking of asking for referral to brompton but not holding my breath!
Hi Littlestone sorry to hear you're having all these problems. Did they say if your histamine challenge showed any vocal cord disfunction? It's so frustrating when diagnosis and symptom's don't seem to tie up, I'm having similar issues because I don't fit standard asthma criteria either. Having said that, I'm not sure what a standard asthmatic is! But it sounds like someone in the medical profession needs to give you medication and action guidelines.
The lady doing the lung function tests said that it could well be vcd and asthma. I've now just woken up and feel really tight chested and sob but I've decided I'm not taking any more medication anymore. He either believes I've got it or I don't. He's the consultant!
hi littlestar121im sorry to hear about your problem I don't have asthma but two children that do,both had classic asthma if such a condition exist both children's symptoms were different having said that asthma is very unique to each person. My son now as been diagnosed with Cough variant asthma which is a continues cough instead of wheezing with some breathlessness and pulling in of the chest sat normal lung function normal on 120 mg allergy tablet, preventer inhaler,reliever inhaler,singular tablet and nasal spray and still he cough's I'm told to wait as asthma treatment are not a miracle treatment telling me they are not. Sorry I didn't help you with your condition but remember asthma is unique to you one size doesn't fit all its definitely not in you're head keep going till you get a diagnoses. Hope you get one soon 😊.
The lady doing the lung function tests said that it could well be vcd and asthma. I've now just woken up and feel really tight chested and sob but I've decided I'm not taking any more medication anymore. He either believes I've got it or I don't. He's the consultant! Also I can't believe he came to that decision without even looking at my notes after 21 years of treatment. Shocking.
Hello Littlestar, sorry you're having so many problems. I experienced the same and kept having flare ups and being very unwell. I went to A&E several times and they said I was having panic attacks! I knew this wasn't the case and I went back to my GP and insisted I got a referral. It turns out I have mild COPD and they gave me Spirva(sp) and since I've been on that plus monkelast and seretide I've been much better. For a while I thought it was all in my head. I'd been a very healthy person for years and the GP was very dismissive as if I was just an old middle aged woman making a fuss.
I also stopped taking the HRT I was on and insisted they changed the beta blockers I was in as it stated on the pack that it shouldn't be used with asthmatics. When I eventually went for my lung tests I purposefully left off my inhalers so that I would have problems.
I don't know what to suggest, but I would say be brave, stand your ground and insist on a referral. It's very difficult to do when you feel rubbish but in the long run, they will refer.
Thanks Stacey, this technician suggested spirva might make a difference but obviously she can't prescribe or anything. Quite scared to drop all my medication but I don't see any other choice!
I have no idea what it is you have but I just want to say that there is not always a wheeze with asthma. At my worse there is no wheeze - just incredible tightness in the chest. When it is tight they usually can't hear anything.
One doctor told me I was alright and to go off the prednisolone. I did gradually go off the tablet (I knew I wasn't as well as he thought but I admit I wanted to go off the drug). Unfortunately, three days later I woke up with an incredibly tight chest (no wheeze) and nearly died. Luckily, I was able to get some Ventolin in and, after an hour of lots of Ventolin and coughing, had enough breath to phone the ambulance. It was a shock to me to realise that I still could only say one word at a time before needing to take another breath.
Trust yourself and keep searching. See another doctor if you can. You are not crazy.
I agree with this. I have had asthma for nearly 40 years (since a small child), but the past few years, the way my asthma presents is a tight chest, a cough and breathlessness. I have had several occasions without a wheeze and the A&E doctors have sent me home to suffer there. My peak flows also tend to be on the high side so that when they fall during an attack, the A&E staff think that I am fine. My asthma nurse has suggested that it is my small airways that close up first so that my lungs sound clear but I am not getting the air down to the small airways. I don't think there is much research into this and at the moment I don't really know how to treat it. I am currently on montelukast and symbicort (as well as omeprazole, cetirizine (2x/day), Pseudoephedrine (2x/day) ) and of course Ventolin for when the Symbicort doesn't work. I still suffer regularly but at the moment there doesn't seem any way to control it.
I guess my point is don't assume the consultant is right. It could still be asthma but it doesn't present like classic childhood asthma. Keep asking questions and I hope you get some answers soon.
I've been in a very similar position to you before. After few years of asthma attacks and uncontrolled symptoms I finally saw a professor who said that I didn't have asthma. I was so annoyed I too stopped taking my meds and to cut a long story short I had a period during pregnancy were I had no symptoms but they soon came back with a vengeance and I've ended up with another consultant who is much better. I think you just have to keep going until you find those gps and consultants that listen to you. Not easy but don't give up.
I feel.i havnt got asthma but they put me on asthma medication. If not asthma like urself what else could it be. Too afraid to stop meds.
Hi if they think it's not asthma they must find out what it is. Have you had any attack or obstruction? That's how they know apparently. Ct scan??
Take care xx
Definitely ask for another referral!! So sorry for you. I know how it feels. All this confusion..xx
Thank you everyone for your support. I feel utterly fed up and just think what has been the point of me being compliant with inhaled steroids if when my peak flow is stable everyone forgets that's probably why! When I don't take preventative inhalers my peak flow is much less stable. I will go for my next appt with him and then i'm going to ask for a referral to Brompton. I know when i've been really poorly. It's not all in my head. Going to have to fight this one even if they all write that i'm deluded!
Im havin similar probs cos the A&E docs havent heard me wheeze yet my own gp has so there still investigating. This makes me so mad. Why will they all not just listen to what were saying. We know our bodies better. I do hope you get better. You need to keep on at them its not right leaving you. Wish u a speedy recovery xx hope u get it sorted xx
I was similar because my hospital is a teaching one my Asthma Consultants ( these days) seem to come and go every 12-18 Months and each time I have to repeat everything
2 diff Consultants said to me I don't believe you have Asthma as you don't wheeze. So was taken off all my inhalers,which then resulted in me to be unable to breathe. Was then rushed into hospital one of my so called consultants said oh I'm sorry I got this wrong. I said to her, did you know Not All Asthmatics Wheeze, her Responce was I have trained in this profession. Not you ( my Reply was I have lived with this condition for many years so yes I do know what I'm talking about.
I switched consultants after that, then a year or 2 later my then current ( Nice) consultant moved on had this no it all Consultant who briefly looked at my notes, he said I don't believe u have asthma I was like really whys that he said No wheeze, my reply was not all asthmatics wheeze, plus there is more than 1 type of Asthma...
He then said oh you know your stuff then I said well I've had asthma approx 23 years. Oh was his Responce!!!!!!!
I'm now classed as Brittle Asthma Very hard to control Allergic to a lot of Meds. And struggle on a daily Basis
Not right is it. You shouldnt have to prove anything. There the ones who need to do tests but at same time treat it properly. It is ridiculous that meds r bein withheld cos of a wheeze. My gp has heard me lots of times but cos they havent they think differently. Im beginin to wonder why bother goin hosp ever again.
It's your Docs that are Crazy or don't give a crap. I get very similar symtoms, often dismissed as anxiety, they can put that on my death cert. I order anibiotic online coz they make such a fuss when u need them. I order anything I can online as a trial. I've been the 3-4 hour ventolin user, which is frowned opon, been thru most inhaler, had 2 hip replaced due to oral seriods, have been classified as a 'brittle' asthma too. Never warned about dangerous of oral steriods. I'm now trying symbiot (spelling wrong !), and a tablet callled Monk something. The more I take the more I think I may be cloging up my airways, so thinking exactly like u brown steriod inhaler only via spacer and see can I dump all these meds. Also purchases something called Golden Paste, a natural anti inflamitory, but could be more BS. Proper Sleep is a disant memory from my teenage years, and has messed up my work/relationships. But what the option, I keep searching until I'm dead I guess. Brittle/Noctural Asthma way underrated as a condition, nobody who is non asmatic has an idea how lucky they are. Best of luck, I only trust my own judgement at this stage. Interested to see how you progress...
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