Dealing with severe/difficult asthma..

[Melanie1989]

I have had asthma since i was 3 years old, infact my earliest memory is being on a nebuliser at the dr's... I assumed i outgrew it because i was symptom free for years, untill i had my youngest child. For the last 3 years, i have been in and out of hospital with admissions everytime...

I always present with high sats, high hr (reduces with neb) and variable presence of wheeze. I have also been suffereng with chronic iron deficiency, of which no cause has been found and iron tablets aren't working... My G.P is baffled and has tested me extensively and has found no cause for my asthma worsening and says he has never seen asthma like mine... when i wheeze my symptoms are not to bad, no wheeze i feel awful! Unfortunately as thourough as he has been, he is of the variety that i am only ill when i wheeze which is hardly ever! I also have the issue i am awful at recognising when i go down hill, and when i do go in i have such a fear i wont be taken seriously due to my unusual presentation..

I feel so fed up, and my last asthma attack has affected me and my family so much.. This is the closest call i had, with critical outreach wanting to admit me to ITU due to my abg, which i have no idea what it was...

My husband is constantly waking me up thinking i am struggling as he thought i looked like i was struggling to breathe or if i cough wants me to take my rescue pack.. I switch from feeling guilty for causing so much stress and worry, to thinking it must be in my head as im so weird..

Sorry for the long rant, its just starting to get to me as i hate causing so much fuss and i am so worried about missing uni time as im a student nurse..

So i guess my question is, does severe/brittle asthma always have a cause and can control always be reached? Or do some people just stay brittle?

Thanks

Mel

[Echoblue]

Sorry to hear you have been struggling with it. I had 9 years of no real flare ups then out of the blue in December it all went haywire again so sadly it appear what you are experiencing can happen! Doesn’t mean you can’t regain good control again once they can identify your triggers.

Also answers sadly can’t always be found but worth seeking them!

We don’t all wheeze and you will see from other posts, your experiences with sats holding up is not uncommon but sadly clinicians always look for regular symptoms.

Hopefully your GP is supportive and may be worth asking your GP if you can be referred to a severe asthma unit for further tests. There are a number of good ones around the country.

I wish you well x

[Melanie1989 in reply to Echoblue]

Hi, thanks for your reply. I am currently under consultant care at my local hospital, but it's looking increasingly likely that a specialist centre may be the answer. Sorry you have had a rubbish time, however it is nice to see im not alone.

[Echoblue in reply to Melanie1989]

You will find you are in very plentiful company here! Lots of different issues faced by everyone but whatever version yours reveals itself, you will find others who have been through similar!

Generally local hospitals manage standard asthma ok, but once it becomes more complex a major centre is invariably the better option. Sadly they do tend to also have long lead times though.

X

[Junglechicken]

Melanie. I have been through something similar. Very mild asthma for 20 years after having severe asthma as a child. Last 3 months asthma completely uncontrollable. Stats completely normal, high peak flow and a tiny, at times inaudible to others wheeze. Not responding to usual dose of salbutamol. GP also very confused as to what is going on. Went to see a specialist who has diagnosed chronic sinusitis which really does mess with your control. Now taking a steroid nasal spray and antibiotics at a very low dose which apparently acts as an anti inflammatory. Only had a few days of treatment but my breathing is better and the chest pains are easing. I think you need to see a specialist who will have a more in depth knowledge about what might be causing your issues and treatments available. For example my GP hadn’t heard of using antibiotics as anti inflammatories in the treatment of respiratory conditions. I am a very lucky girl that I had medical insurance and got to see a specialist privately within a few days. I hear that on the NHS the waiting list is around 10 weeks which is absolutely shocking! Hope you get the treatment you need quickly.

[Melanie1989 in reply to Junglechicken]

Thank you! It is so reassuring to see others are similar to me, although im sorry you have had a rough time to. Im under consultant at my local hospital, i think i may ask about a specialist centre though.

[twinkly29]

Sorry you're struggling. I am, however, delighted (for want of a better word!) that your heart rate goes really high but decreases with a neb. So does mine. Last admission the on call med reg decided he was going to test it (when saying I couldn't have nebs due to heart rate - gee thanks that'll help, I'll cough incessantly and it'll go even higher..!!) Thankfully I proved my theory and he let me have them. "There's no reason that should happen." Really well it does happen and that's all I care about 😁

[Junglechicken in reply to twinkly29]

I get a crazy fast heart rate too that slows with salbutamol when I am struggling for breath. It’s become my warning sign that I am about to start wheezing. It’s terrifying! I was told by an asthma nurse that it is because your heart is compensating for your lungs to get the oxygen around the body. Why other medics don’t seem to know this astounding.

[Melanie1989 in reply to twinkly29]

I know how nice it is when others present the same as you, especially when your asthma is unusual. I think there is a couple of us on here who have the heart rate thing. So frustrating when your in the midst of an attack and their worrying about your heart and ignoring your asthma!

[twinkly29 in reply to Melanie1989]

Unusual, that's me! My consultant refuses to call me awkward but does frequently use "difficult", "complicated" and "special" 😂.

Junglechicken thank you, I will use that explanation! Makes sense to me!

[Junglechicken in reply to twinkly29]

Makes perfect sense to me too!

[Lysistrata Administrator Community Ambassador in reply to twinkly29]

I'm another one like this (high HR a feature of attacks, reduces as treatment works) and yes, for some reason medics often seem not to get it and always want to blame 100% on the nebs. If it were nebs it wouldn't shoot up every time I move or cough! Sometimes when they notice it's still high hours after the last neb they will start looking for a pulmonary embolism, which ok can be serious and needs to be ruled out, but they have been known to rule it out and then not treat the asthma even though I'm no better.

I have also been called 'difficult'. I often just say I'm a freak to save time. They all start reassuring me I'm not then when they get the whole picture are like 'no offence but you are a freak asthmawise' lol. Always nice to see others who present like me! Sorry I can't help much Mel but hope it helps to be reminded you're not alone. I agree looking for a specialist centre may be the next move.

[twinkly29 in reply to Lysistrata]

One of the lovely nurses on the resp ward tested it out (while apologising profusely for delaying my neb a minute or two 😆) and concluded that "well you're just odd aren't you?!" My HR went down massively and so did my resp rate (which I would definitely expect but I'm very much not normal). I trust him completely due to issues he's had to sort out with me so he can call me what he likes 😂

[Lysistrata Administrator Community Ambassador in reply to twinkly29]

I'd expect the same! It makes sense to me - work of breathing includes increased cardiac work to handle it. But even my asthma cons seems to blame it on the nebs when he's seen me in hosp.

[Melanie1989 in reply to Lysistrata]

I am feeling this more than ever as unfortunatly ive been admitted again 😣 paramedics both blamed my hr on ventolin even with Emma's amazing plan 🙄 it did help massively though and paramedics took me to hospital anyway, with what felt like forever i got my nebs and mag bag 😂 Currently here for the timebeing!

[Lysistrata Administrator Community Ambassador in reply to Melanie1989]

ugh nooo to bring admitted and paras not listening but glad you got there in the end! Hope you're not captured for too long and have a good team who listens to how you're doing.

[foxie7777]

I was like you. Asthma at 3, nebulisers etc etc I am now in my 50s and at one point my asthma was so bad by doctor diagnosed COPD. I have struggled all my life. I looked at root cause 10 years ago. Guess what this year I ran a Park Run. Yes 5k. So this is in reverse order of priority

I wish someone had told me what Im about to tell you years ago.

1 I dont have milk products. My steroids used to make me ravenous and now i am mainly vegan i can eat twice as much and not put on weight

2 I started a light regime. walking and even just sitting outside at first. Then went for longer walks. Now I do yoga regularly (5 Tibetans) and that really helps the stretching and flexibility.

3 I did Buteyko technique. I learned mouth breathing was one of my main causes of excess fluids in lungs, hyperventilation etc etc if you have issues breathing through your nose, get your doctor to refer you to an ENT specialist (my septum was bent). Nose breathing helps introduce nitrogen oxide (helps regulate co2 an o2), warms the breath, moistens the breath so lungs dont dry Nasal breathing has so many benefits

4 I had a FIXED diaphragm. You can test yours by inserting your fingers directly behind your ribs and up. Does it really hurt? Fixed diaphragm.

This video may help explain it better

khanacademy.org/science/hea...