Severe asthma and lots of attacks (? Allergy related), any advice during wait to see consultant?

[AimeeCardiff]

My meds were changed in October last year (simbicort to fostair) as I was taking ventolin every day, and my chest really didn't like fostair. I had a really fast, severe attack (pretty much ok to totally unable to breathe in about 15 minutes) in December, with similar symptoms in Feb and March - akin to brittle asthma, and I also get a skin rash alongside these attacks.

Over the last few weeks, I've had lots of attacks, but they are different, more like a traditional asthma attack - I take lots of inhalers (about 30-100 puffs of ventolin /atrovent) and I'm not too bad in around an hour - 4 hours. I never wheeze and my chest xray is clear, but they've said I have an upper respiratory tract viral infection (but that there is no treatment for this).

I've been on the waiting list to see the consultant since December, and also had two private appointments through my husband's work insurance. I've had atrovent added to my daily treatment, and gone on to simbicort SMART, but I'm getting worse. I'm still looking at another 14 weeks for my NHS appointment and I'm feeling physically and mentally awful.

For about three weeks, I've had cold type symptoms, but the AUK nurse said these might actually be allergies/hay-fever, and I am a very allergic person so this makes sense to me.

In the last 9 days, I've had 5 big attacks (3 trips to A&E, and one to my GP for a nebuliser). Nebulisers aren't helping that much (which is different to the sudden drop attacks, when they really help). I've been on 40mg pred for a week now, with another 3 doses before I start to wean.

I've been told by A&E and my GP that I must attend A&E when I have an attack, but that they can't do anything to help me. Everyone tells me I must go in every time, but it feels pointless as the treatment isn't helping, and it's stressful sitting in the waiting room having an attack as my A&E is really busy, and if I feel panicked my symptoms get worse. Ambulances have also been short, and I was told to make my own way in the other night and then couldn't get the operator off the phone for nearly 5 minutes so I could phone a taxi, which made me feel really panicked as I was pretty bad by the time I phoned and no help was coming.

I feel like there isn't really anything to do during an attack but keep on taking inhalers and hope that it will eventually get better, and that I might as well do this at home. At the same time, I'm also pretty worried that I might die during an attack, as they feel so awful and go on for so long.

The AUK nurse recommended a referral to a specialist centre for excellence, but my GP flat out refused and said they couldn't do anything until I've seen the NHS consultant. I think I would definitely benefit from some physio, as I have felt like my throat and upper chest is blocked for the last few weeks, and I've done salt water gargling but it's not shifting it, but can't access this from my GP - has anyone seen someone privately without their medical records being sent to the physio? I'm worried if I'm advised to do the wrong thing it might make me worse.

I'm going to try washing my nose out, as recommended my the AUK nurse, which my GP didn't disagree with me doing, and have a kit on the way in the post.

I'm totally house bound (apart from trips to A&E and GP), as everything is setting off an attack at the moment. I am feeling completely exhausted, and like I don't have the energy to fight the attacks any more. I struggle to stand up to be able to cook, or do anything around the house.

Can anyone think of anything I can do to help myself, as my GP isn't going to facilitate any new treatment and I don't think I can mentally take another 3 months of being this bad, so will find the money if something private might help.

Thanks

[Lucy_Lou]

Sending you a hug.

I have self referred to the physio and I have also seen a private physio. I have never had a GP referall to physio.

The A&E visits may help push you up the list - we were advised to do go to A&E when my daughter was ill so that she would see a consultant sooner.

Could you have a nebuliser at home? Could you go back to the private consultant? I would ask about stepping down the steroids if you do see a private consultant - mine has been very clear I need to stay on them and get symptom free.

Good luck.

[AimeeCardiff in reply to Lucy_Lou]

Thanks Lucy,

you can't self refer in my trust - when you went private did you just search for a respiratory physio? I've found one in the next town, but I'm just a bit nervous of getting it wrong.

I'm due to go back to the consultant privately in 6 weeks, I'll see how I get on as to if I go back sooner - I'm out of insurance coverage, and it's so expensive :/

[Lucy_Lou in reply to AimeeCardiff]

I just went to a private physio team, and they allocated some-one. I was given breathing exercises to do. I think it is worth trying, even if it is in the next county.

[AimeeCardiff in reply to Lucy_Lou]

Thanks Lucy

[Bashsu01]

Hya AimeeCardiff,

My best wishes go out to you..!!

It really is an exhausting, upsetting experience...

When i was going through my bad bouts before it was eventually diagnosed I was at my witts end. So please take it easy which is better said than done I know..!!

My symptoms are similar to you when i have a attack, but I decided to try a steam machine that comes with a little nasal mask as well as the full face mask..!!

It has been my saviour, abs brililliant, i get a couple atracks a month now after being diagnosed only about a year, but when i feel the irritable throat and cough or little pain in chest coming on i have 20 minutes on my m/c with x2 drops of albas oil and it really does relieve the tightness, phlegm cough etc..

It has been a god send...!!!

It sounds as though your symptoms are really poor at the moment, dont worry about going to A&E. GPs dont know everything about Asthma, and i would defo find out the telephone number of your local asthma nurse, at your local hospital..

They will give you the best advice defo, at the beginning i was always ringing them..!!

Anyway hope all goes well.. And defo speak to a asthma/ respiratory nurse they know more than any GP..

Bye

[AimeeCardiff in reply to Bashsu01]

Thanks very much for the suggestions - I'll search for a steam machine now, as I think it might help, as I'm so full up in my upper chest.

I've also got an appointment with the asthma nurse at my GP surgery on Friday, so I'll see if she thinks I need to stay on steroids for longer.

On more positive news, I haven't had a bad attack for 48 hours, so I think the steroids may be starting to work

[Spikedog66]

Sorry you are struggling right now with your asthma. Are you still taking fostair? I had lots of side effects with this inhaler but the consultant prescribed too much. Have you rang the Secretary of the consultant you are supposed to see, she might push you in as urgent if you explain. I think the stress of all this is making you 100% worse. Buy a nebulizer for home handy to have if you are struggling and ask a more sympathetic Gp for nebules of salbutamol, atrovent and saline. Ask about pulmonary rehabilitation, asthma nurses are very knowledgeable my doctors always send you there and honestly will admit these nurses know more. Ring a ambulance if you cannot breathe that's what they are there for and have everything to help you. please don't do nasal washout this can go into your lungs and cause major issues.Your doctor cannot refuse to send you to a centre of excellence take your husband with you for support. Hope you pick up soon, let me know how you get on.

[AimeeCardiff in reply to Spikedog66]

Thanks Spike

I'm back on simbicort, no more fostair since January, but I think I got so unwell whilst my previous GP was scared to change things and wouldn't give pred that I've never fully recovered.

I will ask the asthma nurse if she can refer me to rehabilitation, as I really think it might help - I've been told a few times I'm doing dysfunctional breathing during an attack, but that's not really when I'm able to learn what I should be doing.

I think the nasal wash is helping, at least a little bit, as I feel less hay-fever like, but I'll be really careful to not swallow any

Thanks

[beech]

You could also try Avamys, a nasal spray that reduces swelling in the nasal cavities and sinuses. I do it one spray a nostril daily, after using my saline nasal spray (I use NeilMed), and I find it has really reduced both my blocked stuffy nose, post-nasal drip and blocked throat. It seems there are a number of people on this forum that do this, and find it helpful.

Yes, another medication, but sometimes you need to tackle these problems from all angles, especially if your GP isn’t very helpful (you could always change GP if you wanted).

And a call to the Consultants secretary could really help get you seen quicker - they can be very helpful!

[AimeeCardiff in reply to beech]

Thanks beech, the Auk nurse suggested changing my nasal spray, and I've transferred to avamys (sp?) which I think is helping.

I'm doing a weekly call to the outpatient appointment line , but haven't officially been assigned a consultant yet, although my old consultant (that I'm seeing privately) has told me that his colleagues (who doesn't work privately) will be seeing me, as she is more specialised in difficult to treat asthma than he is. I'll see if I can get her secretary's number, to check if my GP has written the urgent letter!

[Spikedog66]

Well let's hope you are sorted quickly. I was just worried the water went into your lungs and caused an aspiration pnemonia. The steam machine suggested sounds a good idea will have a look for one of those. We try anything don't we? Let me know how you get on.😊

[beech in reply to Spikedog66]

I saw your concern about the saline water going into the lungs; I use a NeilMed saline spray in a can which produces a fine spray which you can do a short squirt of, which maybe reduces the amount of saline sloshing around the tubes! I did try their neti pot version, but didn’t like the sensation of tipping my head and the saline running around! So I find this way works well, especially if heating has dried me out a bit.

[AimeeCardiff in reply to beech]

Thanks Beech and spike

I'm not enjoying the Neil med spray system as I end up with more liquid stuck in my sinuses from it which isn't great, and so I think I might go back to a mug!

[beech in reply to AimeeCardiff]

Each to their own; you’ve got to find what works for you - good luck 🙂