Constant breathlessness :(

Hi! I'm new to this forum and was wondering if anyone was suffering with constant breathlessness and low peak flow readings at the minute without any signs of infection?

Ive been sick for going on 2 weeks now and I've been into hospital for nebulisers twice in 2 weeks. Each time I've had crags, blood tests etc and everything keeps coming back clear. Ive been on steroids for 2 weeks now and they've now put me on antibiotics to see if it helps with the inflammation. My peak flow is down to 200-250 and I can't move or talk much without going really breathless. I've got not energy and by the nights I'm getting too exhausted to even breathe!

The first attack this time was very bad I had oxygen sats of 66% and I passed out with it .... 6 nebs and 5% oxygen for 17 hours brought me back to ""normal"" them they sent me home.

I'm getting really worried with my asthma not being controlled at all and don't know what to do next as the doctors are drawing blanks too!

Does anyone have any suggestions???

Thanks for taking the time to read this :)

7 Replies

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  • Welome MOOMOO,If your breathing is still bad and low pf then I would go to AnE for a check up and then makea docs appointment asap for a meds review or if doc has a asthma nurse at his practice .Also ask for a hospital referral to resp consultant if he will.Take care and keep us updated how you are getting on,love glynis xxxPS,you can have a good pf and not be well with asthma so go by how you are also xxx

  • Welome MOOMOO,If your breathing is still bad and low pf then I would go to AnE for a check up and then makea docs appointment asap for a meds review or if doc has a asthma nurse at his practice .Also ask for a hospital referral to resp consultant if he will.Take care and keep us updated how you are getting on,love glynis xxxPS,you can have a good pf and not be well with asthma so go by how you are also xxx

  • hi Glynis :)

    Thanks for the message. I'm under a chest specialist at Wythenshawe Manchester and they've managed to squeeze me in as an emergency on Friday so fingers crossed they can help.

    My PF keeps fluctuating between 200-250 (my best usually when well is 450!) I've been reading up on my meds and I think I'm going to ask them to change my reliever inhaler and see if that does anything in the interim.

    I keep loosing my voice as well which is weird and I keep feeling like my throat is closing up and being pressed down on when I lay down so I know something's not right contary to what the GP and A&E seem to keep saying!

    The GP last night asked me ""am I anxious"" (to which he just got glared at! Bit of a tale) but I know the difference between an asthma attack and panic attack so I know it's not that ... He's not my usual GP so don't have much faith in him tbh (LOL - like I said bit of a tale)

    It's just nice to know that there are people out there I can talk to about it all now, don't feel so alone and scared anymore :)

  • Hi MooMoo,

    Sorry to hear about all this - it sounds horrible and especially bad that you don't have answers and they're asking about anxiety! I haven't had it quite as bad (never been to hospital with mine) but I did have months of struggling with no medication, tests all normal (though for me, including PF - mine is generally very high even when SOB) and being told I must just be anxious or hyperventilating (grrrr) so I know how frustrating it is. All that did make me very exhausted as well, which my GP said was normal as I was taking up energy just struggling to breathe.

    Glad you've got in with the consultants so quickly, hope they can answer some questions. One thing I did wonder about after reading your post (and I'm not a medic or expert or anything, just had this suggested to me as a cause so did a bit of reading on it) is whether there's any chance you have vocal cord dysfunction (VCD) as you mention your throat closing up? Apparently it's not uncommon for asthmatics to have this as well (or at least, quite a few people with it are also asthmatic). Maybe mention the throat-closing at your appointment on Friday and see what they say?

    Anyway good luck, I hope you get some answers soon as like I say it must be so frustrating to feel so rubbish and not know why! PM me any time if you just want to rant.

  • Thanks for the info on VCD. I've read up on it and I does sound like me so its on mynlist to speak to my specialist about tomorrow xx

  • Well I've just got home from seeing my chest specialist ... and I'm being referred to a Chronic Asthma Specialist now at the same hospital, as my current specialist is a Chronic Cough Consultant ... blah blah blah LOL!

    Anyway shes really lovely and cos I've been struggling for going on 3 weeks now with my breathing she has scheduled me for a Broncoscopy and Lung Wash on 15th November to get to the root of the problem ... she thinks I may have VCD as well as asthma now but can't confirm until after the tests have been done. But seen as Ive either had no voice or hoarse voice for 3 months its looking more than likely in her opinion.

    Well I'm signed off work for a while and its driving me mad, I climb the walls LOL, cos I still can't catch my breathe properly and am constantly exhausted.

    I start my steroid reduction tomorrow morning so fingers crossed I don't start to have any effects so I can come off them but as with everything at the minute they don't know until they try! LOL

    Thanks for your support it really means alot to know there are others like me I can talk to xx

  • Glad you've got somewhere at least and they're taking it seriously. When do you see the asthma consultant, hope not too long? I had a bronchoscopy as well though not lavage, mainly to look for the VCD (turned out I didn't have it, looked at lungs as well and they were ok). Feel free to ask me any questions about having a bronch, they are ok in my experience.

    Hoping steroid reduction works for you!

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