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Brittle asthmatic looking for advice, support and guidance.

Domxxx profile image

Hi all,

Hope you are all well?

I’m new here - this is my first post, I’m here for advice & support mainly.

I was diagnosed with asthma at the young age Of 6.. I was well controlled until my 18th birthday & that was when I had my first ‘Real’ asthma attack.. blue lights and sirens to resus.. Nebs.. steroids..

Since that first attack they get worse every time, I’ve now had HDU admissions, syringe drivers with magnesium.. adrenaline.. the works.. I fear that my next attack with result in ventilation & have constant anxiety that I am going to have an asthma attack.

I can’t go abroad anymore or visit anywhere without a hospital.. I don’t know what causes my attacks there has been no links between each attack. I’ve now been admitted to the difficult asthma clinic & awaiting an appointment.

I would absolutely love to hear from anyone with a similar history as I feel like I’m loosing my mind with it all & so alone.

Thanks in advance.

Dominique. X

21 Replies

Hi there you are not alone in this. I have the same type of asthma. It can be a nightmare! I don’t travel anywhere either. It’s the fear of the attack coming. I am on injections. Steroids. Nebuliser inhalers. Maintainance antibiotics etc. I go to a specialist asthma clinic and they are really good with me there. A lot of people don’t understand how bad asthma can be. I just take one day at a time as everyday is different. I can be ok one minute then unable to breathe the next. This forum is really good for support and advice. Some nights when asthma is bad I just come in here and read through the posts it’s good to know you are not alone. X

Domxxx profile image
Domxxx in reply to Denae011

Hi Denae,

I cannot express how greatful I am for your response.

I feel so alone, friends don’t understand & family have heard it all before.

Have you had many Resus admissions?

Wow you are on a whole bunch of medications, do you find they stabilise you?

I currently take Fostair 200, Sabutamol, Prednisolone & I have been prescribed montelukast but never tried it.

It’s awful not being able to travel - I have an 8 year old son so that makes it feel all the more harder. We’ve taken him abroad 3 times but on our 2nd holiday I ended up in a Cyprian hospital with wheezing and tightness..

We’ve just booked centre parcs so hopefully we will enjoy that and make it an annual thing until my asthma is under better control and anxiety clears..

I cannot thank you enough for your response and you have made my day.

It’s great not to feel alone. X

LilsBaker2020 profile image
LilsBaker2020 in reply to Domxxx

Hi I've tried Montelukast and for me it caused me to have a bad tummy cramps and I spent a lot of time on the john (without being graphic). It messes with your bowels. I can't take the spiriva inhaler either as it causes me to have palpitations. I'm currently on Fostair 100, Salbutamol 100 and prednisone in emergency cases. I had a severe asthma attack yesterday and was blue lighted to Hospital. I'm waiting now for my respiratory consultant to reschedule my appointment as I had one in March but they cancelled. I may eventually have to go to St Barts Hospital in London to have injections etc. I know how you feel in regards to people not understanding what you're going through. I worked in a nursery for nearly 3 years and out of 8-10 staff only 4 staff members understood. I had a Deputy Manager who was covering a maternity leave contract and I had a really bad attack at work one day and he didn't pay attention to me when I said I needed to have my reliever inhaler. I had to tell him twice before he listened. I was hospitalised and given 8 nebulisers over 24 hrs. I could've got medical help sooner if he hadn't wasted 2 minutes of my time.

I hope they manage to get control of your asthma.

Lils xx

Hi and welcome 😊

Sorry you've suffered so much - many of us here are similar in that that's what we experience during an attack too, so hopefully there'll be lots of support for you.

It does sound like your biggest issue at the moment is actually the anxiety element, which with a long term condition like yours is understandable. I assume you're under a consultant for your asthma? If so it might be worth asking if there's someone in the psychology team who deals with long term conditions (sometimes it comes under palliative care which can be a bit alarming but just means ongoing). I saw someone who was brilliant and helped me deal with various elements - in your case the impact it's having on your life and The Fear.

Domxxx profile image
Domxxx in reply to twinkly29

Hi Twinkly,

Yes the anxiety is a HUGE factor, I think it does contribute to my asthma too it’s a vicious circle.

I’m under a consultant but I have been moved too the difficult asthma clinic and waiting an appointment.

I’ve self referred for the counselling there is a lovely 6 month wait!

Thanks for your reply,

Dominique. X

twinkly29 profile image
twinkly29 in reply to Domxxx

Ugh to the wait. I know there often is but it doesn't help!

Hi Dominique :)

Welcome to the forum! Sorry to see that you've been struggling so much and that you're feeling alone with it all (asthma can be very isolating!) - you'll find a fair few of us with similar issues on here!

I don't know how much you know about your asthma/asthma generally so thought I'd try typing out some things to think about with it so sorry if its covering stuff you know! It can be really difficult to work out what sets off asthma, and the difficult asthma clinic will help with that, but some of the common triggers and things to think about maybe are:

-Allergies - have you ever had allergy testing? or allergic type symptoms in response to things (itching, rashes, sneezing, watery eyes etc). They're a common trigger for asthma and lots of people are allergic to pollens, dust mites, animals, moulds and foods. These can all trigger asthma too.

-Infections - a lot of people find that infections like colds or flu can make their asthma worse. Normally you'd have other symptoms like a temperature or productive cough (yellow/green sputum) with the asthma.

-Weather changes - this is always fun! My lungs are a bit like barometers and I often know when its going to rain or a storm is coming and the sudden changes in dampness/humidity/atmospheric pressure can set attacks off.

-Hormones - there's some evidence that asthma symptoms can vary in line with menstrual cycles, so if you find that you're having attacks at a similar point in that it could be a trigger!

-Stress/anxiety - always easier said than done, but as you know keeping calm during symptoms is really important as in some people stress or anxiety can make things worse.

-Pollution/cigarette smoke/perfumes etc

There are tons of others so I'll stop waffling now, AUK has a good page where you can look at more info on all of them (asthma.org.uk/advice/triggers/). I know there often doesn't seem like a link but its worth having a look and think about it before going to difficult asthma as its the sort of stuff they'll ask you about :)

Also what regular meds are you on at the moment for your asthma? Hopefully your GP will have tried a few different things before referring you on but there may be other things you can try while waiting!

In terms of the worry etc I definitely get it. Having uncontrolled asthma with hospital admissions can feel really isolating and horrible. Its worth talking to your GP about it if you haven't already - they may be able to refer you for CBT/counselling or something similar to help manage that side of things and there is also the potential that the difficult asthma clinic you're going to will have a psychologist there you could see (they're not in every area, but are starting to increase I think!).

And what's your general support system like? Do you have friends/family you feel able to talk to about it all? If not I'm always happy to chat on pm :)

Jess x (sorry for the long waffle)

Domxxx profile image
Domxxx in reply to Js706

Hi Js706,

A HUGE thank you for your helpful, kind and useful response- just from this post alone I feel so supported.

I currently take Fostair 200 twice per day, Salbutamol as & when required, Prednisolone & I have been prescribed Montelukast but never tried that.

I can go months without an attack and then have a really horrific experience. I was in A&E last night but luckily my symptoms only required Nebs & fluids, I think I’m at the start of an infection.. it’s always hard to tell as my cough always produces.

The only trigger I can really identify is heartburn.. I have done a little research into heartburn & asthma which was very interesting to find it can severely flare asthma symptoms.

I’m going to start a log and use it against my peak flow.

Thank you for all those triggers I wasn’t aware of a few of them so that’s really interesting to have identified them..

I cannot wait to get my appointment through for the difficult asthma clinic, I’ve had my bloods done.. I’m now waiting for a breathing test and then hopefully they will send out my appointment, I have been waiting over 16 months.

General support - not great.. I have just referred myself to the Iapt service for some counselling but they’ve given me an 8 month wait.. considering going private.

Thank you again for your response I am so greatful.

Thanks,

Dominique. X

Js706 profile image
Js706 in reply to Domxxx

Hey :)

Ugh, sorry you were in last night but I'm glad it resolved fairly well. I also often produce a lot of mucus even when well - normally I find if I'm heading towards infection it will increase or get thicker (nice I know), start to go a bit off-colour (sometimes it will go horribly green, other times just a bit yellow/brown, but generally if that happens I know to keep an eye on it) or sometimes it starts to taste really foul.

Yep heartburn can definitely set off asthma symptoms - the acid reflux itself can set asthma off and it can also make you cough more which if things are particularly "twitchy" can irritate things.

Keeping a note of any possible symptoms/triggers and peak flow is really helpful - and will probably go down well at the clinic appointment! I can often feel a bit mad with the amount of info I've gone along with before to my appointments but they normally find it really helpful!! And if you're anything like me you immediately forget things you've worked out when asked if it isn't written down somewhere...

Sorry that its been such a long wait! I know that most areas had long waits anyway and then COVID has just made everything worse, if you don't at least hear about an appointment soon it might be worth ringing the clinic just to double check you're still on the books etc and they might be able to let you know a rough wait time too.

In terms of the montelukast - how come you've never tried taking it? Is it worries about side effects? Most of the scary sounding ones you read about are actually really, really rare and most people (including myself!) are able to take it without any issues at all. There's also another inhaler called spiriva that is added on to people's medication quite often, so you could ask about that if its a long wait for clinic still. And it might just be saying what you already know, but do you take your fostair with a spacer?

Also if you do get problems with heartburn do you take anything for that? Either prescribed or over the counter? If not, it might be worth asking your GP about it.

Sorry that you don't feel you have much support generally :( Good idea with the self referral to iapt, but yeah, like everything else they have a long wait!

Jess x

Claire_AUK profile image
Claire_AUKPartner

Hi Dominique, great to see you are getting some valuable support on here . You are also very welcome to ring and chat to the AUK nurses on the helpline M-F 9-5 0300 2225800 :)

Domxxx profile image
Domxxx in reply to Claire_AUK

Hi Claire,

Thanks for he advice, I have sent a WhatsApp today and been advised to call. I just feel a little silly because it’s making me so anxious and emotional at the moment I know I’ll be an absolute ball of emotions talking through it all.

Thank you very much though,

Dominique. X

Claire_AUK profile image
Claire_AUKPartner in reply to Domxxx

Please don't worry we are really used to this. Feeling unwell makes you emotional - totally understandable :). If you can text us again on the Whats app service tomorrow after 9am we can arrange a nurse to call you back either am or pm, but please don't post your phone or contact details on here. Take care

Dominique. If you’ve never called the Asthma UK nurses before they are incredible. I was nervous about speaking to them but the lady I spoke to put me at my ease.

She was very thorough, knowledgeable and understanding as I was going through a rough time asthma wise and battling with GP. She even coped with my tears.

Domxxx profile image
Domxxx in reply to Junglechicken

Hi JC,

Thanks for getting back to me, I have sent a WhatsApp and they’ve advised me to call.. that’s what I’m worried about (the tears) I know when I finally speak to someone I’m going to be so so emotional!

Hope you’re well & thank you again for getting back to me! X

Junglechicken profile image
Junglechicken in reply to Domxxx

It’s completely understandable that you are emotional. Don’t be ashamed of that. You’re having to cope with a serious chronic condition on top of everyday life with all its stressors. The Asthma nurses will completely understand and will support you 100%. Remember you’re stronger than you can ever imagine.🙂

EmmaF91 profile image
EmmaF91Community Ambassador in reply to Domxxx

Tears are normal. Really Dw about them! You won’t be the first (cause I know for sure that I have cried talking to them 😂) and I very much doubt you’ll be the last!

You are stressed and trying to work out what’s happening, it’s an emotional rollercoaster, and that’s ignoring the pred side effects!

If it helps I once cried in front of 1 con, 2 regs, 2 juniors, 1 physio and 1 nurse all at once... none of whom I had ever met before 😂😂🙈🙈🙈. Allow yourself to ride the wave, and ask for the support you need from people who can help more directly! If in doubt just blame the pred! (It’s what I do 😉)

EmmaF91 profile image
EmmaF91Community Ambassador

Hi

If you’ve been referred to difficult asthma then you may also be able to access resp psych through there (as well as a multitude of other services to work out what exactly is going on... any commorbidities/mimics making things worse etc) after your first appt.

If you’ve been prescribed Monte have you tried it to see if it helps? Most people comment that it either really helps or it does very little so it’s worth seeing if you can get control with it.

As Js706 said there are many many MANY triggers about, some common, others not. And sometimes the big issues come when they’ve piled on top of one another (ala jenga healthunlocked.com/asthmauk... )

Like the others I’ve been in the situation, unable to plan and my lungs just couldn’t cope from one day to another, however I am now a lot better controlled (only 6 admissions in the last year usually via majors with the mag/hydroC/neb combo, rather than about 20 admission a year via resus) but it is very isolating when you don’t know anyone else in the same situation.

I think everything else I’d suggest has been covered by prev replies 😂. Js706 has pretty much covered it all now! And Claire has given you the helpline number (they also have WhatsApp on 07378 606728 if you find that easier). Just know you aren’t alone, and aren’t the only one who has been through it!

Hi.

Sorry to hear you're having a tough time. I totally get what you're going through cos I have brittle Asthma too. I've been to resus more times than I care to count, blue lights in the ambulance - the works. I'm on fostair MART inhaler, blue inhaler, prednisolone, and montelukast. My asthma was well controlled until Feb 2019 when I got pneumonia. Since then I've been in hospital several times and three times this year to intensive care. On my last admission I was put on a ventilator.

It's pretty stressful, but then stress can make you're asthma worse. I have been referred to a health psychologist to help with my asthma anxiety. Are you in or near London?... because you could be referred to the Royal Brompton hospital...they are a specialist lung hospital.

I don't always know what triggers my asthma attacks, which is frustrating because I'm not sure about which triggers to avoid. Brittle Asthma is the pits, it can really come on so quickly and with little warning.

I'm still trying to get on top of my asthma, but it's so hard. I hope you get the treatment you need.

Take care

Domxxx profile image
Domxxx in reply to 99Poke

Hi,

I can’t tell you how comforting it is to speak to other people in the same situation.

We sound VERY similar with our meds and symptoms..

The anxiety is absolutely controlling every aspect of my life at the moment, I wake up everyday thinking I am going to have an asthma attack and it will be the end.. it’s just awful.

I am so glad I posted on here and found people in very similar situations!!!

I’m not in London unfortunately I live in Leeds.

How’re you finding your asthma now your on Fostair?

Hope you keep stable with your symptoms and thank you for your reply.

Dominique. X

I can't add much more that wouldn't be repeating what has already said. I would really encourage you to call the asthma UK service. I cried the day I called but they took it all in their stride and offered some excellent advice and more importantly they listened to me. I went through a very tough time feeling like I was the only person with uncontrollable asthma but the support from other people on here was amazing. Please reach out we are all here to help and sometimes a little rant on here can definitely make you feel better.

Hi again Dom. Yes I’ve been in resus many times. I usually have a couple of magnesium infusions if I’m admitted and they have helped. Everyday is different for me I can be ok one minute then gasping for breath the next. I take one day at a time. I do get anxious when I know an attack is coming because you just know the discomfort that’s coming. I have broken down in front of Drs etc. I too usually blame the steroids for this lol. Keep on using this forum though it is so helpful. X

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