Just wondering if anyone can offer any advice/reassurance as I’ve got to the point where I’m just so fed up of my asthma.
My attacks seem to have taken on a new pattern; years ago I’d be bad about every six months, then the pattern started to be about every month/couple of months (my hormones trigger it) now it happens about every month but I get several attacks and it can affect me for up to a week. I’ve spoken to my specialist and she’s said there’s nothing they can do about my hormones setting my asthma off.
The other problem I have is that I have vocal cord dysfunction as well as my asthma and my asthma sets off the vcd and I get stridor. The specialist and paramedics have explained to me that this is what happens. On Wednesday I had a bad attack and needed treatment from the paramedics, my attack was how it usually is, I also have a typed out sheet with all my info on as I can’t talk when I wheeze that says about my treatment from the paramedics, that my SATS are always 100%, my stridor etc. My mum was also there to explain that this is how my attacks always are. The paramedic however said she couldn’t hear a wheeze on my chest it was all coming from my throat, said she didn’t think it was asthma, although I scribbled on a piece of paper that it was and I can tell the difference between my asthma and vcd. She wouldn’t put me on a neb, despite my mum and my boyfriend telling her that it was the only thing that would help. She eventually did in the ambulance but said it was against her better judgement. I wasn’t altered as I usually am and when I got to hospital, the paramedics didn’t hook me up to an oxygen tank. I was then delayed being put on a nebuliser again, so in all, I was wheezing for about two and a half hours without help.
My chest is now unsettled, my ribs are so sore and I despair with knowing what to do. My specialist was going to do me a letter for the paramedics but has since said she can’t. It’s just all really getting me down and I don’t usually let it get to me. Any sympathetic ears or advice would be great! Xxx
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RD23
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Hi I’m really sorry to hear about the situation you’re in atm... I’ve been there myself but fortunately I’m a typical ‘wheezy’ asthmatic and haven’t (yet) been diagnosed with VCD. It’s horrid when people say no wheezy so no asthma!
Are you under a specialist hosp, or just the local? You can ask for referral if you’re only at the local. Have they investigated to see if you’re eligible for a biological? It may be worth asking them just to double check if they haven’t recently done bloods. Alternatively have they suggested any form of contraception (assuming you’re female 😅). My GP won’t put me on drugs (mainly due to the amount of meds I’m on plus cause my pred levels vary so can affect how well the pill ‘works’ apparently) however they have suggested the coil to control my hormones, my asthma and some other problems too 😅.
I don’t have a good history with paramedics (brilliant response to a neb so they don’t want to take me in but it doesn’t last and I then drop quickly) so if I need to go in I usually get someone to drop me off (or get public transport 😅), however depending on your distance from the hosp that may not be feasible.
Typically they won’t use o2 unless your sats are dropped/dropping, so try not to worry about that too much.
Would it be worth talking to your cons about getting a home neb for these situations? Ie once you’ve rang for an ambulance you can give yourself one if you think you need it? The main reason they don’t like asthmatics having them is cause we abuse them to stay out of hospital, but if you’re ‘trusted’ to follow the rules they may allow you one. Mine came with the rule ‘1 in a day - see my GP, 2+ a day/4 in a week need to go to hospital’. It works well cause then I can get myself ‘safe’ before the journey in and forces me to seek help otherwise I abuse my ventolin... all I do at the hosp is tell the docs what I’ve done at home (ie up pred _ days ago, _ ventolin in the last few days, neb yesterday, saw GP, today 1 neb today @ _, PF went from _ to _ dropped to _ at _, another neb and came in)
I have my own form which so far has worked. I state that I’ll improve on nebs but it won’t hold so need hydrocortisone... they normally ‘test’ me with a neb then admit I’ve followed my usually pattern and get my hydro 😅.
It may be worth asking why the cons won’t do a letter, and/or asking them to sign your form if they agree with what you’ve written about your normal presentation and what treatment you usually need.
I hope some of that helps 😅. Good luck and I hope you start to feel better soon x
May I ask what clinic you’re with? Having nebs at home in case of emergency is something my family would appreciate especially now I’m at uni, but previously chest clinic (not asthma clinic, mind you) docs have said no, due to the reasons you mentioned. I’m seeing an asthma specialist clinic soon so they may have a different perspective!
I had a GP who told me to get one and a (local) consultant at Maidstone who finally agreed. At the time I was needed a neb a week at the GP and was in hospital basically every 2-3 weeks. My resp specialist (RBH) doesn’t like that I have 1 (due to the normal reasons) but it’s the first line of defence for me and they have acknowledged I follow my neb ‘rules’ and seek help a lot earlier with one. I can easily abuse my ventolin and not worry if I’m using up a pump or 2 in a week as it never came with ‘rules’ 😅.
I had to buy the machine myself, but getting the nebules when I moved house and changed GP/hosp wasn’t difficult.
Thank you. It really is rubbish as they make you feel like you’re wasting their time! I get stridor and it always sounds upper respiratory but that’s the way I’ve always presented and I’ve had it for 30/31 years now.
My consultant is at a specialist adult respiratory clinic, what’s a biological? Forgive my ignorance. I’m already on the pill to control other issues with my hormones and they’ve said nothing else can be done but I will definitely ask again.
I’ve asked about having a neb at home before and they said that because my asthma escalated quite quickly that I should be seen in A&E but I will ask my specialist, especially as I respond to meds quite quickly and once I’m on a neb I don’t bottom out quickly if that makes sense?
Biological injections such as xolair (omalizumab), mepolizumab (Nucala) or reslizumab (cinqaero). Xolair works to reduce IgE levels and lower allergic asthma, the others work on eosinophilic asthma by lowering IL-5. Mepo has made my severe asthma feel mild!
Well you could say you’ll only use the neb when an ambulance is on the way, therefore you’re getting the treatment you need, at the time you need it, but will also get the check up at the hosp if that makes sense.
Hi, I can't really help that much but I am in a similar position to you as a 'freak' with troublesome lungs who doesn't qualify for any biologicals, so I do know how frustrating it is. Like Emma says you wouldn't wish it on anyone, but it is nice to know you're not alone.
I don't have precisely the same issues ie with the stridor but also have to explain my presentation via paper given the similar sats issue. I suspect your consultant thinks they are not allowed to dictate the clinical judgment of another professional and that's why they won't do one for you. However, if you present them with one and it's worded in a way that allows the paramedic or whoever to decide BUT supports what you say, they might be willing to sign it. Mine isn't signed but I often get asked if it's from my consultant and I have worded it to say things like 'this is how I present typically, this is what has worked before, I understand you need to use your judgment but please be aware that I will not have xyz sign but still need abc' (eg 'I don't wheeze, my HR is high, I can have nebs').
It sounds like you are at a more general respiratory clinic. I have found those can be pot luck because they have to cover all the conditions. As Emma has said it may be worth asking for a referral to a clinic specialising in asthma, not just one which 'includes' asthma - there are a few round the country, and the Royal Brompton which is often mentioned on here is an example though not the only option by any means even if London is the closest place. I have found overall they are better with my weirdnesses than others, though I can still find it hard at times. A centre like that might have more idea about eg referrals to someone who could look into the hormonal side (I think I might have discussed this with you on here before so apologies if you already said that you've seen someone about that!) If it's useful for context, I was referred there when I landed with a very good consultant at my former hospital - he was so lovely after some really bad ones and actually knew a lot about asthma despite saying it wasn't his main area. However, he said he and the clinic in general couldn't handle my asthma as well as they should, and I should be seen in somewhere that was set up for that and could offer the biologicals if I qualified.
I hope you can get somewhere with the nebs. I would find it very handy being in a similar situation, and also getting constantly attacked by scent and sprays, but my cons is one of the hardliners against it! I should still ask but I have epic hang-ups about talking to consultants after a lot of bad experiences, and that feels really hard. The clinic I go to has a health psychologist who is helping me to undo all my clinic-based neuroses, very slowly!
That’s a good idea, I’ll discuss that with my consultant as I can see the need for caution and that paramedics should assess the patient in front of them, I just don’t get how when I present the same, my treatment and they way they react to me can vary so much.
Yeah we’ve had the chat about hormones before but I think I need to maybe be a bit more pushy with my consultant. I’ve just sort of got to the point where it’s happening too much and it’s really starting to make me feel down and I’ve never let it defeat me.
It does help, thank you xxx
LysistrataAdministratorCommunity Ambassador• in reply toRD23
Glad it helped! I think the problem is that they don't always treat the patient in front of them - they want to treat the textbook patient. It reminds me of the advice we were always given before exams - answer the question you get, not the one you wanted to get. I think they too often try to answer the one they wanted because the real one is too hard! I did appreciate it when the asthma psychologist told me the clinic I go to is full of people who aren't typical.
I think it might help to push the consultant a bit (I am terrible at that but know I should at times). You could try laying it all out and if they still can't or won't help, ask for a referral to a specialist asthma clinic. It may help to look them up beforehand especially if you are near more than one option and have a preference - I asked for a specific one ans the cons actually knew the lead cons there which helped. I think it's possible a specialist place may be more up on the hormonal aspect of things too - they might see more people with that and have a better idea of the options.
I’m at a specialist asthma clinic and also have hormones as a trigger! Unfortunately when we worked that out (a year - 18 months ago) I was told the same as you. They recommend people go on some form of hormonal contraception but that’s the only thing that they are aware of to do and they haven’t found evidence for anything else helping 😔
I was already on the pill at that point so they basically said that unfortunately it’s just another trigger to be aware of and that I need to just make sure I’m more careful around “that time”
Sorry that’s not more help! Although I guess things may have changed since
That’s the same as I got told! Rubbish isn’t it?! You’d think as it seems to be quite common they’d be more knowledge out there. I’ll keep you posted with anything I find out xxx
Thanks! Hopefully they’ll do some more research soon and find out more.
Although, I thought it was common knowledge and was at a GP based teaching session on asthma in my capacity as a student and gave hormones as an answer for a trigger. The GP taking the session said they weren’t aware of that despite being the one with a special interest in asthma!
When I mentioned it as a trigger to my consultant she said it was quite common but I don’t think they really know much about how to manage it, if at all you can.
Please ask your GP to test your magnesium levels it's not a good test because there is only 1% magnesium in your blood 99% in your cells also research magnesium deficiency and symptoms of magnesium deficiency good luck
the test they give you is magnesium in your blood as I've said 1% magnesium in your blood. 99% in organs and cells research symptoms of magnesium deficiency also look at foods high in magnesium
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