Hi, My local hospital are struggling and I am stuck in a round of catch 22 so hoping that there may be someone who can point me in a better direction!
I have had asthma since childhood, generally only exacerbated by virus or allergies. 9 years ago everything went haywire and I ended up having very frequent admissions ending up in for 2 weeks, at home for 2 weeks lasting 6 months.
After being referred to a Severe & Brittle Asthma unit I was diagnosed with Silent Brittle Asthma and also had nebuliser Magnesium Sulphate which worked really well and everything settled again. I have had 9 years of good health with only occasional flare ups that I have been able to manage with nebulisers.
I take Fexofenadine so don’t get set off for allergies very often, in fact I can go many months without any flare up, but when it does flare it hits me hard so I have a nebuliser at home and need Salbutamol and Ipratropium together.
Since December after a very minor cold however it has been totally uncontrolled. I now can only breathe with extremely tiny breaths, it feels like I am wearing a really tight bandage around my chest and I can literally sit and watch my sats slide in front of my eyes. When my sats drop my chest and head feel like they are going to explode.
After an admission in January IV Magnesium sulphate brought my peak flow and sats back to normal and I was discharged. Over the next few days my peak flow slid again despite nebulising and my surgery asthma nurse (who has been brilliant) arranged for my local hospital ambulatory centre to try another IV as a day case after 2 weeks and it immediately worked again! This has been my life ever since, the IV doesn’t last and over a 2 week period it slides to such a level that I can’t carry on and have to have another IV. My asthma nurse at the hospital said there is no evidence of repeated use of Magnesium used this way and banned them from giving it to me but couldn’t offer any alternative as she said there is no diagnosis as to what was actually going on.
I had a hospital appt to review and instead of being seen by a respiratory consultant I was seen by her again and she told me that my peak flow of 100 (usual is 450) was my new normal and I had better get used to it and could only offer me a wellbeing referral!
I saw a Respiratory Consultant privately who was horrified at her approach and said there is clearly something going on with my breathing, but on a single appointment he couldn’t offer a diagnosis but he did write a severe letter to my local hospital Consultant (who I have never seen) at the beginning of April and suggested the further tests that he would have done ....which I am still waiting for any feedback on.
I struggled on for a month with a peak flow of 100 which then slid to 80 and after 2 weeks of that, yesterday could go on no longer so went to A&E who were great. They gave me the IV and even during that my breathing returned to normal (peak flow back to over 400).
The Consultant said she believes it only because she saw it for herself that I went from no breath sounds and tiny breaths (not hyperventilation breathing) to normal within the 20 minute IV. Has anyone ever heard of this or have any suggestions of where I could turn as I can’t keep going to A&E every 2 weeks?
They won’t prescribe me nebulised magnesium sulphate as they say it isn’t licensed.
I tried to get back to the Severe & Brittle Asthma unit but my urgent referral is awaiting a response and they have 18 weeks to respond 😩
Sorry for the long post, but it was tricky to cut down.
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Echoblue
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No idea but I just wanted to say hello and welcome. 80 is a very low peak flow especially from a drop of a reasonable number. If I understand it correctly, your doctor was (quite rightly) angry that you were told to accept it as your new normal. Such a drop to such a low number is not normal. Hopefully your doctor will persist for something to happen. 🤞
Thank you for your welcoming words HungryHufflepuff and yes, you did understand that correctly.
I have to say my GP and surgery asthma nurse have been very supportive. My GP was equally horrified and said he knew how unwell I was and that I needed answers, he just needs to know who to refer me to in order to get them.
I’m glad you have some doctors and nurses who are being supportive and proactive. There are a lot of knowledgeable people here, hopefully someone will reply to you soon with suggestions of who or where your GP can refer you to, to get the answers you need.
Why don’t you look on the internet for a really good asthma specialist in your area. They are usually at big teaching hospitals. Take the name to your GP who sounds very cooperative and between you, you can start again and get proper treatment.
Omg what a nightmare and although the magnesium works somebody needs to investigate and find out what's causing it. A&E seems the only way . Are you having Abg when your in a&e and bloods done to check for infection. Have you had a CT chest scan. Next time it happens I would go to A&e and insist they got to the bottom of it . They must stop sending you home after a quick fix. I may be wrong but I think there is also an asthma group on healthy locked x
Hi, CT scan clear about a month ago and despite the private respiratory consultant suggesting Abg done at next IV, at the ambulatory centre they said it wasn’t needed! It also wasn’t done at A&E. Bloods done.
Thanks for your thoughts, I really appreciate it. This was the only group I could find for breathing issues, but I will look again to see if I missed other possible groups.
Hospital respiratory nurse is convinced this current issue is not to do with my asthma hence why I am trying to seek what else it could be.
It doesn't mean you need to leave here I think there are 2-3 asthma groups on here. The more places you can gain information the better. If they say you don't need an Abg your bloods must be showing well oxygenated bloods. Abg just looks for c02 in your blood and if you were getting that you would be getting terrible headaches especially on a morning. You would feel sick and drowsy and confused. I have a couple of friend with asthma and never heard anything like your symptoms. You need a complete mot. Are you sending in sputum samples it's possible you have a bug in your lungs. I go in hospital every 10 weeks or so and this time was told I have aspergillus so on meds for that x
Thankyou Mandy6513 for that, I had read that as I was in the “wrong” group for a moment there! With so much confusion about it is going on I wanted to keep as many options open as possible in case there is something beyond asthma going on and I was at risk of pigeon holing as much as the docs do! I appreciate your clarifying that. Sputum samples have always been tricky as I don’t cough anything up!
You should keep a sputum sample bottle on you at all times just ask your doctor for an envelope and drop your sample in when you get one. there a a few bugs that can get in our lungs and cause havoc but I do find once you have a diagnosis everything is blamed on that. If I went to my doctor's about a bad toe she would say it's because of my bronchiectasis !!! Tell your GP your not happy with the results you have been given so far and want a thorough investigation. We only have one life and not being able to breath can be a bit of a pain at times 😁 . On a serious note feeling your sats drop so low you feel like your brain is going to explode is a dreadful feeling it happens to me too x
Jimmy there use to be many knowledgeable members on this site . I learnt a lot from them so I do hope they are still here somewhere. Have a lovely afternoon x
Thanks Daisy55. I would travel to get answers, but am in Cambridgeshire so hoping to find some specialist in the South East or Midlands if at all possible as one off visits you can travel to, it is follow ups and repeat visits considerable distances that get tricky. I will definitely keep this Dr’s name in hand as a possible. Thank you so much for taking time to make the suggestion.
Firstly Welcome Hun. I was at Birmingham Transplant Hospital for a number of Years.( 2 hours Traveling). I know they have an Excellent Asthma Department There. Try Their Website, All the Best to you Hun. xxxx
Hi Hacienda, many thanks, it was the Birmingham Severe and Brittle Asthma unit I am trying to get back into but has the 18 weeks wait for a response. They were excellent when I was there before and fully understand why they are popular!
I do hope you can get an earlier appointment Hun, Keep on at them, till they have to see you now, or your Lovely GP to phone them for you. Good Luck Hun. xxxx
Being in Cambridgeshire I am surprised that you have not been referred to Royal Papworth Hospital. I went there fifteen years ago and was admitted to the day ward where I had xrays, scan, loads of blood tests and many lung function tests, one of which was a blood gas test, it sounds like you need the same tests. I was diagnosed immediately and told that I had an infection, I did not really need to be told that, I thought I was dying ! I was put on a waiting list and admitted for two weeks IV's and other treatment like physio. I wish you good luck.
How awful for you Echoblue. I dont have asthma so cant advise, but would suggest you do as Daisy55 says as it sounds like good advise. I do hope you get to the bottom of this x
Just wondering what your preventer medication is.....has that been checked at all to see if it's working.
Have you been given prednisilone orally in hospital or at home and or by injection in hospital.
That is the only thing that works for me.
I have difficult to control asthma as has my friend ....both at the same health centre and hospital, but she has had a heart op so she has different treatment to me.
She has been given magnesium in the past and now Xolair injections. I don't know how the magnesium was administered, I will ask her. It did improve her breathing but she was in hospital for some time on steroids.
I have Combivent nebules for emergencies.....but I have problems if I use too much, my peak flow drops after a while and I end up in A and E with a tight chest. I also have Qvar as a preventer and a regular 5mg steroid tablet. Combination inhalers I find difficult too. We are all different and react differently to medication.
My peak flow went down to 190 last week and I felt dreadful....and panicky.....no way to live. I have been given a longer slowly reducing course of prednisilone and antibiotics for my productive cough, and it's starting to work.....I can move around and do stuff. But I had to ask for a longer course and I was given omprazole to safeguard my stomach . The new GP was helpful and listened when I said a shorter course wouldn't work....I was too breathless. Told me to ring 999 if I got worse.
Please ask for a referral to the best hospital there is, my friend travels to a very reputable one for treatment .
Even though I hate saying it , is it possible for you to pay for a faster one off private appointment with a reputable specialist again.
I know it's difficult to make a fuss when you feel so breathless, but a wait of up to 18 weeks is worrying.....have they suggested if there is an unexpected appointment through a cancellation you could be seen quickly.
I do feel for you, I hope you get answers soon.
PS Asthma Uk have a helpline as does BLF.....I have used both....open during the working week.
Hi knitter, thank you, it is so refreshing to link in with people who get the daily battle we face to be heard! I have been told I am steroid resistant which makes it even harder for my GP as it has taken away his “go to” management regime! I take Fostair and Montelukast.
No one wants to change anything until they have a “diagnosis” of what is currently going on but I am left in limbo trying to limp on to the next appointment or hospital visit, whichever comes first (usually hospital)! To me this is where so much wastage is happening. If they could identify what is the most appropriate treatment/a fast track action, they could actually prevent numerous admissions and A&E visits saving money & time.
Hi . I've just read what you wrote about being steroid resistant and I'm curious to know how you and your doctor realised that. I've asked several doctors if I should feel different on steroids and they all say yes but when I then tell them I don't feel the slightest bit different when I take them they say it's normal ggggrrrrrr . Hope you don't mind sharing that x
It was the Consultant at the Severe & Brittle asthma unit that said it wasn’t making any impact on me.
In this last flare up since December they have tried me twice on a short sharp dose but again, made no impact except for the side effects of course! One other thought someone suggested though is that if there is an element of autoimmune issues going on as well (which there are suspicions there may be) then even normal high dose for asthma would not touch it so I suppose it is possible that maybe I haven’t had enough of it to make that impact needed?!! Talk about extremes! X
As a fellow sufferer of brittle asthma and hay fever, I sympathise.
I also have tracheomalacia and relapsing polychindritis.
I am on fexofenadine 240mg, Dymista nasal spray, ventolin, fostair, intal, spiriva, nebulisers of salbutamol and ipratropium, and just finished prednisolone.
As soon as I come off the prednisolone, I’m back to being wheezy, short of breath, unable to take deep breaths and coughing.
The pollen is driving this, I am worse than ever this year. I am tired all the time and struggle to talk more than a few words at a time.
My GP hasn’t got a clue as I’m on so much medication.
I saw my respiratory consultant at specialist lung centre at Wythenshaw hospital a couple of weeks ago. He has arranged a Broncoscopy for the 14th June and said I will have to go to A&E if continue to struggle so much, and be admitted.
Usually I end up on IV hydrocortisone, magnesium and aminophyline.
I try to avoid going into hospital to avoid picking up infections as I also take immunosuppressant medication for my RP.
In top of all medication, I still have to use my ventolin inhaler up to 10 times a day.
Hi Clare, I am in Cambridgeshire. I am so sorry to hear you have been struggling too.
I agree re the pollens, tree pollens are one of my triggers and they have been grim this year.
I know what you mean about trying to avoid hospitals which is why it is so frustrating that I am having to put myself in that position every 2 weeks! I just wish they would let me try the nebulised magnesium sulphate again as it surely would be a safer option than the IV and would mean I may not have to keep going in.
It was the Severe & Brittle asthma unit that prescribed it 9 years ago hence why I am trying to get an appointment back there again, but with the 18 week response time that is still end of June before that time is up.... and that is just for a response, appointment may be autumn or worse! ☹️ it is so easy for clinicians to pack us off after an appointment to wait for the next, but we have to somehow find some kind of quality of life to keep going lurching from appointment to appointment in between.
Hello Echoblue, I'm sorry to hear you are struggling so much at the moment. Our lovely members have given you lots of support and useful ideas. Someone mentioned the Asthma UK forum - you will find it here: healthunlocked.com/asthmauk Many of our members are also members of that community, but you might find posting there will lead to more support and ideas.
Both forums have helplines. The Asthma UK one is 0300 222 5800 and for BLF it's 03000 030 555. You could give either of them a call on Tuesday, after the bank holiday.
I do hope you get some definitive answers soon. Please let us know how you are getting on. Good luck!
Hi annienell, many thanks, yes, have found the asthma group and posted a message on there too now. It is so heartening, but at the same time sad to hear so many people having a grim time of things with their health when they don’t tick the “normal” boxes! We are left feeling such an inconvenience and have to fight at every turn.
Having a positive forum to reach out to is so refreshing and I no longer feel a freak or a fraud which are both things I have been left feeling in my search for steps forward.
One thing I forgot in my previous long reply to you, was Buteyko Breathing.
I found the exercises helpful, but they are not suitable for everyone, and easy to get wrong and maybe make things worse for some.
But for me they eased my symptoms, but the courses are very very expensive, and variable. I paid for two of my asthmatic daughters, one teacher was excellent the other not so good.....texting during the lessons instead of watching the students.
Check out you tube for meditation and relaxation videos too.
WeLcome to you . Have you tried contacting ASthma UK for some advise as this is definately wrong. Your asthma is out of control not sure an infection would have caused lasting problem like this. There maybe other things wrong adding to your asthma problem, or have you changed anything like tablets or inhalers or things you use at home that might be triggering a reaction. Best Wishes for finding out whats happening and soon.
Thankyou katieoxo60. No, I haven’t tried contacting them as I didn’t have a specific question. I wasn’t aware I could discuss my symptoms with them? Appreciate your pointing me that way and I will call them on Tuesday.
Wow Ecgoblue, you have certainly been through it. I too struggle with Asthma and my peak flow was 150 for four weeks and I ended up in ICU. Please make sure you get your carbon dioxide levels checked as we breathe this out and if you’re struggling to breathe this could be a consequence that it is building up in your body. This can be done with a simple ear prick. I don’t know why this is often overlooked, with GP’s especially, but it does happen and I nearly lost my life as a result! So I advise anyone I can because I became light headed and confused and this is what was happening.
I hope you feel better soon and it sounds like you’re very pro-active, which will hopefully get you the answers you need. Roz 💕
That’s not good. Our body retains the carbon dioxide if we aren’t breathing properly. I would definitely query this with your health professionals. It’s not really rocket science so I hope they recognise this could potentially be an issue especially when you’ve had such a low peak flow. Better safe than sorry, that’s what I say! 🙌🏻
Would magnesium or Epsom Salts baths help at all? You can buy big bags of both from places like Home and Bargain and similar stores quite cheaply. Put 1/3 of a bag in a bath of hot water and relax in the bath for 20 mins.
Great minds and all that Ergendl .... have frequent of those and love them. I think the steam really helps too. Sadly it hasn’t halted the slide in my peak flow or the need for more IV but lovely relaxation and highly recommend it 👍🏻
I have tried Magnesium tablets before in order to try and supplement so keep the momentum but they haven’t made any difference. Have done more research on that and I think maybe I wasn’t taking enough - have read 300mg Magnesium Citrate daily is optimum for asthma issues so have just bought high potency and will give them another shot & hope to keep this momentum going.
Thanks for the idea though. I love how active/proactive this group is.
Really sorry to hear of this. Don't know why they don't want to give it up. Apparently MS is a good bronchial dilator often used to treat asthma. Why not take oral over-the-counter MS? It may be slower to react but once you can breath better you can keep up with it.
However, I would do some research first and make sure of doses, side affects, interactions with other medications you're taking and long term use effects. Apparently if can cause diarrhea, but hey...
So sorry to hear about your nightmare journey so far.
I recommend asking for a referral to a specialist hospital such as the Brompton. People come from all over the UK to it. I am a patient there and they are incredibly thorough. Like you I had been coasting along until getting pneumonia which wouldn’t go for months and months.They are now querying a previous asthma diagnosis as I seem to be ventolin resistant and I am going to see their immunologist this week. They have said ‘small airways disease’ but are still investigating. It all very alarming and confusing when you don’t know what on earth is happening but you feel light headed with a low peak flow and wheezing. Best of luck and please let us know how you are getting on. X
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