Hi all!I was just wondering if anyone has come across this previously.
I finally went to my asthma nurse and she thinks that my asthma is even less controlled than I suspected
I know this is bad and I need to take it when needed but when I'm in need of my ventolin, if I don't get it, the need rarely gets that bad. It's uncomfortable yes but generally if I sit down and rest while controlling my breathing, it won't keep getting worse and my breathing will be controlled just shallower and my chest will feel uncomfortable. I do take my inhalers out and keep one anywhere I am regularly (so one at work ect) but honestly, I've got 2 linked neurodevelopmental disorders that affect my memory and my executive function and it often doesn't occur to me to take it, even while I'm feeling uncomfortable, until I'm coughing constantly or can't talk and it's really really obvious. My asthma nurse is aware of this as it obviously impacts on my asthma quite a bit, especially as until I made an appointment on the asthma UK nurses advise (thank you so much!!!) They had no idea how uncontrolled my asthma was as the frequency of my prescriptions does nothing to indicate how often my asthma is flaring. I am working on trying to take it as much as I can though it's not going fantasticallyif I'm honest as if I'm not thinking about it, I'm not thinking about it. I exhausted all the usual tips years ago with a previous asthma nurse, trying to add notes and reminders and the sort but as its not a conscious 'forgetting' but more of a unconscious it doesn't even occur to me I have asthma and that's why I've been out of breath all day and my chest hurts until the continous coughing reminds me. The nurse doesn't really have any tips that I'm not already doing other than asking me to try as hard as I possibly can to take it so that's what I've been doing. I probably take it at the 'shortness of breath and uncomfortable chest' stage maybe 1/20 times?? Possibly less. I'm far more likely to sit down and do controlled breathing (I've got other conditions causing severe pain/low blood pressure/tachycardia and this works for flares of all of them, I'm not doing it consciously but it's just automatic to do it if I'm feeling uncomfortable in some way without thinking. It's not just the asthma, I don't think to take any rescue medication and hardly ever thinkremember to take my as needed pain meds).
if where the nurse is comcerned,if i do register that the discomfort is my asthma and I need to just take my inhaler, even if I take it when the symptoms have just started (say I was doing something I knew was likely to set off my asthma and had remembered to have my inhaler in my hand ready)I need way more than 2 puffs. I use a spacer, I shake it, it's in date, I leave a minute between each puff but I need to keep taking it for a few minutes until my breathing returns to normal. If I stop at 2, it'll be a bit improved but not enough for it to have been worth taking the inhaler you know?I may as well have just sat down and controlled my breathing. The nurse wants me to call 999 if I've needed 10 puffs but that isn't a abnormal amount for me to need to get rid of some mild chest tightness, it doesn't get worse or come back, it's controlled but I know I'm not ill enough to be in hospital as frankly, I get mild symptoms daily due to my lack of asthma control and i know that had I not taken the inhaler at all I would have just waited and it would have stayed at the same level before eventually going away. I 100% understand the need for caution and I get why she wants me to call 999 in case but it honestly just seems like I personally need a bit of a higher dose of ventolin and if I had that it would work as expected and the only concern would be my compliance with the inhalers and actually taking them.
i asked her if I can have a standard higher dose on my plan or if there's an alternative rescue medication and she said it's the only option other than a dry powder one which probably won't work as a rescue medication for me personally as my key symptom during flares tends to be shallow breathing, so it'll be hard for me to get the medication that way. Now had she told me that therewhere other options but that we should concentrate on my compliance with my meds then fair enough, I would have understood. Thereisn't a lot I can do that im not already doing but I get not changing meds before you are even taking it correctly especially as I've been on ventolin for over 2 decades starting when I was a baby so clearly a lot of nurses and drs have thought it's a good choice for me but that's not what she's saying she's saying there's only 1 other rescue med and that's not appropriate. This part is just confusing me and I've been thinking it over and over. Is that really the case? How are there only 2 rescue medications for a conditionso rare? I know there are different brands but active ingredients wise there are only 2? And that's the case after only one medication being withdrawn? (intal) I really don't understand. She's saying that of all the people with asthma these 2 work fine as long as the asthma is controlled but for any other condition this common there are 10s of options. And they are all used because different medication works on different people. So how does the salbutamol in ventolin work for almost every asthma patient with the rest covered by the dry powder rescue one? Is it just that it doesn't but they haven't been able to develop any more so there aren't any options? Why can't I have a higher base dose of ventolin like you would with any other medication? How can there only be 2 dose options with the massivespectrum of severity in asthma?
I think the reason I'm needing more of the ventolin than usual is that I feel my symptoms low in my airways so the first few puffs are just opening the higher bits up enough so that the the 5th or sixth puffs get to where they need to be. As a child I'd use a big spacer with a mask and just breath in and out in the spacer with a puff of ventolin being added every minute or so till I felt better and so that's what I do when I'm ill and its affectingmy asthma. I assumed this was what the drs had told us to do and I'd just kept doing it but i had a search and most people do not seem to use their rescue inhalers like that at all! Theytake one puff and they are fine. There's no extended breathing in and out. I can't take a big inhale if my asthma is bad because of a chest infection or something as I need to take it slowly to get it in and further down my airways or I'd just cough it straight out. A few people seem to be using their Diffuser like this but they are saying they are using 'the volumatic as a nebuliser' so that got me wondering why they aren't just giving them a nebuliser to use and also what is put in a nebuliser, I think one is just ventolin but are there others? If so, can't I get one of those in an inhaler?