Hi, am new to this group and hoping someone may have had similar in as much as help point me in a better direction?
I have had asthma since childhood, pretty much being triggered by allergies and virus’. 9 years ago everything went haywire and I ended up being admitted for 2 weeks, out for 2 weeks then admitted again. This went on for 6 months when I was referred to a Severe & Brittle Asthma unit. In amongst treatment I had nebulised magnesium sulphate that worked well for me. Everything settled down and I ended up with pretty much no flare ups and my Salbutamol inhaler would run out of date before it ran out ..... life was good again.
Occasional flare ups I could manage with nebulised Salbutamol and Ipratropium. I take fexofenadine so didn’t get set off by allergies very often.
In December last year I had a very minor cold and since then I have spiralled into a completely uncontrolled state again. I can now only take really tiny breaths (it is like a concrete band wrapped tightly round my chest) and I can literally sit and watch my sats sliding down and up and down again! When my sats drop it feels like my head and chest are going to explode.
After an admission in January this year IV Magnesium sulphate immediately brought my breathing back to normal and by the end of the IV my peak flow was back to my normal 450 so I was discharged. Over the next few days my peak flow started to slide again despite nebulising and after 2 weeks my surgery asthma nurse contacted my local hospital ambulatory centre and arranged for them to give me another IV of the Magnesium. It immediately worked again. This has been my life ever since. Having to have repeat IVs every 2 weeks as my breathing gets tighter and tighter until I can’t carry on any longer.
The asthma nurse at the hospital said there is no evidence for repeated use of the IV so has banned them from giving it to me ..... despite my asking what else she suggests - to which I was told that without any diagnosis as to what was going on she couldn’t suggest anything else! I have therefore been struggling on for 4 weeks with a peak flow of 80. A recent flight was nigh on unbearable - my chest and head felt like they were going to explode with intense crushing feeling, like I was in a vice, I am guessing it was the air pressure combined with my low oxygen levels.... whatever it was, it was horrible!
A couple of days ago I couldn’t keep going any longer on these tiny breaths (yes, my breathing is now dysfunctional, but that is through necessity to be able to keep breathing and to keep my sats as up as I can, however I do keep my breathing as effective as I can so as to reduce hyperventilating ) so I went to A&E. Thankfully I saw a great Consultant who went straight for the IV when I explained my situation. The IV worked straight away again. Peak flow 80 before and 420 after. I never wheeze and I become totally silent in my breathing, therefore no breath sounds before and normal breathing and breath sounds after. I asked how I get that message across to the next clinician and they said “I believe it now I have seen it, but no idea why” that isn’t much help when they won’t necessarily be on duty next time!
Hospital won’t let me try the nebulised magnesium sulphate which had worked 9 years ago as they said it isn’t licences for that, but they have no other suggestions other than come back to A&E!!
A&E every 2 weeks is currently my only option, which surely can’t be a great use of resources and it is so exhausting trying to explain what is happening each time and what I need, it is like running a gauntlet of added pain and stress just to get that window of relief.
I have tried to get back to the Severe & Brittle Asthma unit and my GP did an urgent referral for me .... which came back as “we will respond to your referral within the next 18 weeks” 😩
CT scan clear, bloods mostly normal (raised IgM, low IgE and low platelets) and no one seems to have a clue where to send me for answers! Have had 2 appointments at the hospital and saw asthma nurse each time, not a Consultant and the nurse said I have restrictive spyrometry but no wheeze so the 90 must be my new normal and to live with it!! 😳 when I questioned it She emailed me a link to well-being to help me come to terms with it (whatever it is!!)
My GP is happy to refer me anywhere (I am in Cambridgeshire) as he recognises this is not normal and whatever is happening is atypical, but without knowing the diagnosis it is hard to know what speciality to home in on.
I have privately seen a cardiologist as they wondered about a cardiovascular element, but thankfully echo etc all clear so not cardiovascular.
Any suggestions much appreciated.