Finally got an appointment to see a consultant which i attended today.. I was given an urgent appointment as i should of had one weeks ago but they lost my paperwork... Anyways turns out it was a registrar i saw as consultant was busy, he is trialling me on montelukest and referred me for breathing tests. What bothered me most though is i mentioned i dont wheeze and he said all asthmatics wheeze unless your airway is blocked completely... I asked what to do when i get what feels like an asthma attack without wheeze and he said go to a n e anyway! Last time i went i was refused a neb as i had no wheeze!
I also was told to wait untill my peak flow is down to 230 before i go! I would be half dead by then! The thought of having another attack and sitting in a n e for hours alone struggling to breathe is terrifying!
Sorry for all my posts being the same kind of thing, i just am a bit lost. I thought of making my own action plan but worry it would be dismissed. As it stands i think i will deal with any future attacks at home...
Also slightly dubious about the montelukast as i thought it was more for alllergic asthma which i dont have... He also said i could add another inhaler, any ideas what it could be as im already on ventolin and fostair..
Any input would be great!
Mel
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Ugh sorry to hear how it went - glad you can try something; I feel montelukast has helped me in the past and I'm pretty sure that I don't have allergic asthma so it may do something you never know! My cons has taken me off it and i'm still trying to work out if I'm worse. I wonder if the other inhaler might be Spiriva (tiotropium) - did he not say? Bit weird to mention it without telling you or actually prescribing...
Re the wheeze...oh dear. This was a general respiratory clinic right? And I bet dr has interests in other stuff and doesn't keep up with asthma. I have found with bitter experience that apart from the 'nebs don't help unless you have a wheeze' thing you can get from paramedics/A&E, many respiratory doctors genuinely do not seem to get asthma and will say similar things to what you had today even though what they are saying is just wrong and not actually what asthma guidelines say, and IMO they should know at least the basics of a common respiratory condition! Admittedly these guidelines can be confusingly written but they say more than one of tight chest, wheeze, difficulty breathing, cough are symptoms of asthma. Wheeze does not equal bronchospasm!!! I am going to get that tattooed on my back I swear... My theory is that if they deal with lung diseases where you can see things like bits of lung which don't work, they aren't very good at wrapping their heads round asthma which doesn't actually have easy to spot markers, so they want to find things like peak flow and wheeze to hold on to. (This is totally a theory btw and may be rubbish, but I have spent way too much time with this kind of dr).
I had one like this who treated me after an attack and he was insistent that 'no wheeze asthma' was not a thing and that the worse your wheeze is, the worse the asthma. In his case he hadn't even *heard* of the concept of silent chest which was really a bit scary. You also get drs (sounds like your one) who think that silent chest is only a thing when you are about to be intubated. I've not got to that point thankfully and yet I have plenty of attacks with no wheeze or minimal wheeze but significantly reduced air entry. On one occasion I was quiet enough that a wheeze then appearing was actually welcomed by the drs! I also have prolonged expiration which is another sign. If I'm lucky they will pay attention when I say I don't wheeze, and I have had enough who do listen to me on that to just about restore my faith after bad times when they don't listen (like this last weekend).
The peak flow advice is just dangerous. Asthma UK's advice is really clear that you don't wait for peak flow to drop so he really shouldn't be saying that. I don't know if 230 is half of your best or your predicted (and I hope he's not using predicted if you have a personal best, but too many do) but if you need A&E by other indications, like not being able to talk you definitely shouldn't be waiting for that. My peak flow is completely useless for that decision and I've had fairly respectable peak flows with really disreputable blood gases!
I'm wondering if you have any way of getting to a clinic which has drs who actually specialise in asthma (for real, not the 5th thing on their list - I usually google their name and see what comes up, and maybe if they do private work their listing there might be a better guide). Could discuss with GP if you have a good one? You can also ask to see a specific dr usually but they don't tell you - ask at the front desk when you check in, or the nurse who does checks beforehand. I used to think it didn't matter but as above it does actually seem that some general ones don't really understand asthma. I had similar problems to you for ages and have done better since being referred to a more focused clinic.
Re the plan - what I use isn't exactly a plan but it does seem to help. It can be very hard to get a useful action plan when you don't have supportive drs - I spent ages in that wilderness so I do get it, but you are probably going to end up needing to go again to A&E (sorry...) so I do recommend having something up your sleeve. My personal one was surprisingly effective as they often thought the cons had written it anyway lol - I made it look like my CV, the power of bullet points... I think I mentioned on another post that it's basically a summary of my asthma with how I present, medications, triggers, what's worked for me in the past and how this attack developed. I stopped using it for a bit as I felt so hopeless about the whole thing and I do think I had more bad experiences without than with it. I'd be happy to share bits by PM if you think it would help? I have been where you are and it is not fun at all so I am always keen to help out other unusual asthmatics.
Sorry for yet another long ramble but hope this helps!
I agree with the lady above on peak flow mine can be perfect and I still having an asthma attack . asthma UK helpline nurses told me that my smaller airways can be inflamed hence no fall in peak flow.
It definitly does help thanks. My problem is im always to nervous to speak up for myself and actually ask for a nebuliser! It is a relief that others have been through similar experiences but makes me angry to, because it shouldnt be this way!
I will have a look at asthma clinics in the local area, as didnt realise there were private ones.
In regards to peakflow my best is 460, so if i waited till half of that i would be in big trouble!
Its crazy how you can go into hospital with the same symptoms and stats but get treated completely different! How come AUK nurses get it but not drs lol.
I was more thinking of private just because those places may be a bit more specific about what the drs focus on and may also do NHS work so you might be able.to work out who actually knows about asthma and if they work at the clinic you go to. I also google them to.see what sort of research they do.
However, if you have the means to go private that may also be a good option as you would get more choice and more time with them, and could maybe get to a specialist asthma clinic without having to persuade your GP. You shouldn't have to I know and wouldn't be possible for many but it may help cut down on all the back and forth to see someone who gets it!
I have only recently got the confidence to ask for nebs or disagree when they are being funny (hard when you can't talk well). A lot of that has come from being at a clinic where I don't get told off for going to hospital - saw previous cons who would have a go at me constantly about why I went to hospital and why I used so much inhaler when I didn't need to. Last weekend they had a moment of trying to send me to urgent care (if someone has asthma and cannot talk well at triage, making them wait 2 hours for a GP is not ideal and I managed to say I was struggling ans could not really wait that long.)
I also find specialist nurses much easier to talk to and they know their stuff! I used to call them a lot when I had no cons who listened and they were so helpful and lovely and basically sanity preserving.
Its crazy trying to send you away when they have nebulisers right there! In regards to what the consultant said does he realise we dont take inhalers for fun! Reminds me when i was prescribed nebs by a dr in hospital and the next day another dr told me off for having nebs instead of my inhaler, even though i had been prescribed it and a nurse was giving me them!
The consultant i was suppose to see today trained at the royal brompton so i was really hopeful... unfortunatly he was to busy to see me and you dont get a choice who you see..
I am seriously considering private but dont want to waste money just to get told the same thing!
I agree specialist nurses are amazing. I had an amazing respiritory nurse when i was first admitted with an attack and she completly overruled the drs and really fought my corner! AUK nurses have truly been sanity savers to!
Ugh yes all sounds familiar. If you ask at the start sometimes you can get to see the one you want but if you don't it's just whoever picks up your file - at my previous clinic if you asked they would write on the front that you want to see.Dr X. Unless they have a policy against it, but usually it's just most people don't think to ask.
Maybe worth a try next time, though you may have to.wait for a bit. When is your next appt there? I see what you mean about private but it does seem like at this point you need someone who.really gets asthma. And having the nurse for advice is incredibly valuable. Are you anywhere near a place which has an NHS specialist asthma clinic?
It isn't fun being an odd asthmatic is it? I told the nurse this week that I would mind less if I could.jist wheeze and drop peak flow and just be less of.a freak. He didn't contest the freak bit (he is very nice but the lungs really are weird. I am.just happy he doesn't blame me for being difficult to.manage - so many others seem to think it's on purpose or not real.)
Im in norfolk and cant seem to find any specialist clinics around.. I know the feeling of wanting to be a 'normal' asthmatic, my husband thinks im crazy when i say i wish i wheezed! Im learning quick drs like text book cases.
Honestly if people only knew what its like to struggle for air, while being told your fine, and there is nothing you can do! The worst part is when wheezy asthmatics are took straight through and im just sat there struggling in the waiting room feeling like a fraud...
Waiting on breathing tests then back to consultant in two months.
I'm not the best at geography but is Cambridge any good distance wise? Papworth I think has a clinic. I used to live in Oxford when they didn't have a specialist clinic (they do now because they acquired a hotshot cons who set it up) and ended up going to London. Obviously not always easy re travel but maybe if you went once or twice to get things set up/tests etc? I have a friend who unapologetically name-drops Brompton when she needs to - like us she doesn't wheeze and it can cause issues. I go to a place that's less well known as an asthma clinic but I will now say I go to a severe asthma clinic (at the top of my summary) and also point out positive test results for asthma and previous admissions. It seems to make them more inclined to believe me as they can't claim I don't have asthma or that I haven't had attacks.
I find A&E seem to be either great because they go on what they see ie me struggling, or terrible because they want textbook. Paramedics are tricky because here their protocol actually says they shouldn't give nebs without wheeze and low oxygen. I admit I have actually had the most trouble with respiratory specialists as they can be convinced they know all about asthma and no one wants to disagree, even when they don't! Non-respiratory acute medical drs often just feel like it's not their area anyway so can be easier I find if I tell them up front what helps. (I should write some kind of guide lol. I have met some really good drs but the ones who are not can really leave an impression - as you say it is really horrible to struggle when no one will listen.)
Thats good to know as cambridge isnt to far away. Only used ambulance once as my gp phoned as my oxygen was so low (the one and only time it ever dropped!) Even then they were asking me if i suffer panic attacks and my gp had to tell them i need oxygen! I dread to think how they would be if i called them!
Our storys our so eerily familiar, i either get amazing care or absoloute rubbish.. There isnt an inbetween!
I know what you mean about the specialists, they come across very arragant and never convey an ounce of empathy. In my experience younger drs and nurses seem to take me more seriously, probably because they havent had years of textbook brainwashing!
I think the younger ones maybe are more aware that they don't know things. When they get more senior they are expected to know things and it's harder to admit they don't. I don't envy them the job but I wish they were more able to admit when they don't know things! One of the best consultants I have ever seen actually would only see me for monitoring and wanted to refer me on because he didn't feel he knew enough to help me (his focus wasn't asthma and he felt I needed a specialist in that). He still knew far more than some cons I have met who claim they know about asthma. I sent him a thank you card as he was so nice and helpful and actually listened/let me ask questions.
I am actually amazed at how many nebs I have got out of paramedics considering their silly protocol - usually only get an ambulance if I call 111, and a couple of times when I called GP unable to speak. I actually think some of them are not comfortable with the rule as they can see I am struggling and have common sense, but then you get the ones who insist on wheeze. My heart rate doesn't help there as it makes them more nervous and they won't believe it is due to the asthma, but I have had both nebs and hydrocortisone from them and some very sensible ones, who wouldn't do peak flow as they said they could see I was struggling and it didn't matter to them what it was, plus another set who said I would know if I was having an attack so they would listen to me!
After the no PF paramedics the cons in my next clinic appt (not the one I see now!!) spent ages just interrogating me about what my peak flow was and I kept saying I didn't know and it hadn't mattered! He was an asthma cons but had a thing about peak flow and used to have a go at me if he thought I'd attended A&E unnecessarily, which in his mind was every time, based on peak flow. I got my ABG results for him once when he asked and I had low oxygen with PF about 400. He still insisted after that that I should be waiting until my PF had dropped to below 50% before going anywhere!
I'm pretty sure I have a big sign on my head that is invisible to me but attracts really annoying consultants... I have had waayyy too many of them! So I always try to help other people not take this long to get to one who isn't like that, though sadly it makes me very paranoid. I am always convinced that the latest one is going to turn bad on me (18 months and he hasn't yet).
The heart rate thing is another where really they should be familiar with the guidelines, because those do actually specify that a high heart rate is part of an attack and over about 110 along with other features makes it a bad attack. I know I have a good dr when they recognise it is part of the asthma, but so often it gets blamed on the salbutamol. If it were just that, it wouldn't jump upwards when I move around (invariably, mid attack if I try to do anything at all it will shoot up).
Yep mine was sitting at 150.. jumping to 160 when coughing... but nope apparently thats fine! Hopefully i can find a good dr to because having this is bad enough without being questioned on it to!
Just read your comment about a fast pulse rate. Pulses can go up if you’re having an attack, but if you’ve had several puffs of ventolin, this can push your pulse rate up also.
LysistrataAdministratorCommunity Ambassador• in reply toAbc64
Hi, yes it is a mixture with me - I can feel my heart doing what seems to be an Alien-like attempt to claw its way out of my chest with enough nebs! Not fun but better than not being able to breathe.
I don't however like the drs to focus on just the salbutamol part of it, because that can end up with them not wanting to give nebs when I know they will help, and I also know that if you target the asthma my HR will eventually resolve.
I will usually get some head-scratching in hospital when they notice it's been a few hours since the last neb and my HR is still having fun. I know this is because I just tried to get up to go to the bathroom or something but they will invariably do an ECG and then find that it's normal rhythm but fast.
Hi Melanie1989 I have just had breathing tests for the first time and they aren't too owneous. They are done to understand how asthma is affecting your lungs. Then the consultant/register will be able to tailor your inhaler to your asthma. (See my post on re breathing tests and replies)
I've had asthma attacks without the wheeze doctors including my GPs still want you too have. Asthma UK nurses (helpline) have told me that you don't need to have a wheeze. Their advice is good standard of asthma care.
As for visiting A &E if you need it please go if really needed it. I have been in A&E being treated as result of an asthma after and during with no wheeze. Never not told I not having an asthma attack because no wheeze.
My asthma plan says 300 is asthma attack my best is 500. That is only one symptom not all with the usual others (see asthma action plan. (Asthma action plan see asthma UK.org)
Can't say much on inhalers as I waiting on result appointment with consultant. I'm on nexthaler fostair 100/6 2 puffs twice a day and flixoide 250 1 puff twice a day., monkelaust (allergic asthma) becausose nasal spray for mucus discharge.
Hope my post helps you.Your not alone but we here to support you.
Me too peak flow only dropped this last asthma attack due to a simple cold that went straight to my chest. That is why I got a wheeze. Small but there.
Thank you for the kind wishes on my appointment with the consultant.
I hope and pray you get sorted very soon . I pray that you get listen to really listen to.
It’s good to read all your posts..I feel really sorry for you all..I’m fortunate not to have asthma, but I joined the group to try and get ideas for my horse who seems to have a really severe non wheezy asthma. I’m a vet and I’ve also taken my horse to see all the best horse medicine specialists and they all have no idea what is wrong or how to help her (all the normal asthma treatments she responds poorly or not at all to). I hope you don’t mind me writing on your posts I just really hope to find a way to help her and hope anyone may have some inspiration. What drugs do the hospitals give you in nebulizers? Josie has an attack every single time the sun shines. They resolve as the sun goes down. Exercise reduces the severe attacks but she’s out of breath within about ten minutes of starting exercise and has to make a massive hard fast respiratory effort. Bronchodilators sometimes help at very high doses. She gets pneumonia every time she has steroids. Maybe nobody will ever be able to help but it’s just nice to join a forum where I can see I’m not the only one out here struggling..even though it’s not me..it causes me so much pain to see my best friend like this and I constantly think about whether euthanasia would be kindest as she can’t tell me how uncomfortable she is. Good luck to you all getting on top of your own asthma
Hi im really sorry to hear about your horse, it must be very upsetting. In a normal nebuliser it is usually salbutomal or ipatropium. Strange how your horse reacts to steroids as usually they strengthen lungs. Possibly maybe your horse suffers from allergies?
Thank you very much Melanie for your reply. Yes it’s odd how she reacts to steroids I think her immune system is suppressed and then when steroids suppress it more she gets infections. Thank you for the info about nebulizers..I tried ipratropium once but it didn’t help..maybe worth trying again
Hi, I'm not a vet or dr and I know nothing about horses, but my dad used to have some kind of allergy symptoms related to sunlight and it took a while to work it out. I am not sure of the details but he had hayfever to start with and then when he started getting more symptoms, I think they found that he was having a reaction to allergens and pollution which were somehow activated or made more potent by sunlight (not asthma exactly but breathing and nose-related). I am not sure how it was treated sorry!
I wonder if Josie might have something similar since her attacks are brought on when the sun shines? Are there specialist allergy vets she could see or has she seen them already?
Hope that is vaguely helpful and really sorry to hear as it must be very difficult to see her struggle.
Hi Lysistrata, thank you so much for your reply, that is really interesting. Do you have any idea if it was by any chance Ozone that your dad reacted to? This is what I’ve been suspecting..it is formed by reaction of UV light with pollution. Even though you don’t know what your dad was treated with..did his condition come under control? Was it considered a form of asthma? How long ago was that? Unfortunately I’ve tried all the vet specialists I can find and none have any idea. Would any of your family remember how your dad was treated? I’d be so grateful for any more info..this is first time in 6 years I’ve ever come across someone that’s had something similar. Thank you so much for your reply.
HI, I'm glad it was helpful but don't have a massive amount more to add sorry as it is all a bit vague - I remember my mum talking about it but i wasn't living at home at the time and so didn't see it day to day.
Ozone does sound plausible; however I think that pollen can also be worse in the sun as plants release more and the warm air makes it rise (this is just a bit of googling).
It has to have been at least 8 or 9 years ago as my dad sadly died in 2011 (cancer so not related). I don't remember him having major problems in the breathing or allergy line when I did see him so I think they must have got it under control and I have a very vague idea that antihistamines were involved. I am fairly confident it wasn't considered asthma though as I would think my mum would have mentioned that when I started having major asthma problems myself a year or two after. I think he had breathing problems because they did heart/lung tests and all ok. This is all very secondhand from my mum who would know but sadly is no longer with us either! I do remember she said it took them a while to find out the issue as it was a bit obscure, so maybe an allergy-focused vet would be able to investigate more if you ask about the sunlight aspect.
I’m on montelukast, 4 puffs of fostair twice a day. I was getting worse. They did a Hospital referral, but also gave me an additional inhaler , which I only take in the morning. It’s called braltus. I didn’t notice any difference at first, but after a few weeks, I felt some improvement. They might try you on it. I have read up on it ,and it seems to be prescribed for copd .
I saw the first consultant, who was querying whether it was asthma, or something else. Should have gone back last month for my results, but all appointments were cancelled. I now have an appointment for the end of next month.
Im hoping the montelukast will help but as i dont really have allergic asthma im not sure it will work... Its definitly reassuring that there are other inhaler options that work out there, as im beginning to think nothing will work!
I was told that by my very knowledgeable asthma nurse of 20 years experience. That when she prescribed me monkelaust that it either helps in two weeks or doesn't. Very clear cut advice. So give it a try and see what happens.
Thank you. I had to have a lung function test. Because of the results and that my blood test showed hypersensitivity to something, I had to have a high density ct scan. My consultant had the results, but I won’t have them for over a month. I did query this when my appointment was cancelled. I did have a reassuring message that he wasn’t unduly concerned.
Since then (15 days ago) I had quite a bad attack, for me. Strong smelling perfume brought it on. I had 8 puffs of my salbutamol inhaler before I started to get any relief. Since then, my peak flows have been between 250-280. I’m now on steroids, which I started yesterday. Hopefully they will pick up.
I am sorry you have to wait I do have sympathy on cancelled appointments. I had to cancel my breathing test (I waited two months for this) when 6 days before I got a cold. Cold seem to get better but then went to my chest. Peak flow drop and 3 days before the appointment I had to cancel because I had an asthma attack and was on prednisolone. However the appointment was made 3 weeks late (I was told 4 wks reschedule) and I was completely better. Done and waiting for consultant appointment 31 days and counting.
Sorry to hear that you have had such a frustrating experience with the cons - especially afer waiting some time to see one. I have been through similar experiences with differerent consulants and registrars and for ages, there was no proper respiratory consultant at the hopital; just a series of locums. One of these was so horrible; she just would not listen, dismissed everything I said and I ended up in floods of tears.
During the period of time I was attending the clinic at this hospital, my asthma just got worse and worse. Thye were constantly cancelling and rescheduling appointments, and I was frequently waiting 2+ hrs. They removed seretide and just gave me pulmicourt and I went down really fast. For months I could hardly climb the stairs; but I rarely wheezed.
Eventually, a friend came with me to the GP, because I felt unable to ask on my own; like they would not believe me / I was already geting help / should just put up with it etc. We asked the GP if it was posible to send me somewhere else. He referred me to another, larger hopsital still within the same board / trust; just a bit further away. Since then, the support and treatment I have received has been excellent. Although it was never the nursing staff at the other hospital, who were rotten, just the cold and callous consultants.
I'm not really a 'wheezy' asthamtic either; just an everyday struggling to breathe asthamtic. It is unpeakably frustrating when doctors just always go by PF. It is my understanding that this does not measure obstructions or air flow issues in the lower, smallest parts of the bronchioles; it only measures the upper respiratory airflow. You know yoir own asthma best, so although it is difficult when you are struggling, I think you are right to insist on nebs if you know that they have helped in the past. But it must be horrible having to be assertive when you are so unwell. I don't know how I would manage in that situation.
As someone else said, the various respiratory tests and scans help them gain a better overall picture of your lungs' functions. There are a range of different tests and scans so hopefully, your hospital will send you a letter explaining more about this along with your appointment. Sometimes you need to stop taking your inhalers for a certain period of time before some of the tests.
As others have said, the additional inhaler could be Spiriva. or other tiotroprium inhale. I find this one very helpful; there has definitely been an improvement in symptoms since taking this. Whereas with the Montelukast; I have tried it twice and, on both occaisions, the side effects became unbearble.
I have allergic asthma, so I take Intal inhaler, plus an additional steroid inhaler on top of the usual steroid + Long acting bronchodilator combi. They do sometimes up the steroids in his way so that you can later (hopefully) step down; so it could be they are considering offering you an additional steroid inhaler on top of Forstair, becasue you are uncontrolled. For me, this was beneficial as it meant I was taking less courses of Oral steroids as a result. I also take beconase. If you have nasal congestion and mucus along with your asthma, it could be this one that they are considering. I can't think of any others.
My max PF is 400. According to my plan, which the respiratory nurse at the hosp drew up with me, If it goes down to 300, I start taking hydrochortisone. They wanted to set it at 320, I wanted 250, but we agreed 300. If it goes down to 200 I am alllowed 1 neb (bricanyl) at home and if it does not improve, then I am supposed to go to A&E.
This plan works for me, as just the thought of A&E utterly terrifies me. I feel certain I will be missunderstood because my asthma is rarely very wheezy. So far, I have only had to go once, and that was years ago, when some friends took me against my will.
I always found my GP was happy to give nebs if I turned up at the surgery with breathing probs whatever my PF. I aways went ther if I was struggling to breathe becasue its close than the hopsital and I am terrified of hte hospital. They gave me a prescription for home neb as they only ever kept ventolin ones at the surgery and I take brycanyl for reliever.
Although I am taking more meds than I feel comfortable with, I am happy with this plan because I feel more in control, even if my asthma doesn't always feel in control. IYSWIM
Becasue I frequently do drop below 300, the hospital have suggested I try Xoliar injection. I am still thinking about this option. However, I am so very glad that I got referred to this hospital instead of where I was initially sent. I felt I was just looking into a future of ever-worsening respiratory problems, but now my attitude is a lot more positive.
I really hope you can find a clinic somewhere where they listen to you and treat you like an individual. If you have to go private, an initial consultation is about £140-£180.
Hi thanks for your reply, sorry you have had awful experiences to but am glad you have found a good consultant! 😀 I go back to the consultant in a couple of months and more than likely see a different one so will see how that goes... If not i may talk to my gp again although i am quite limited in my area. So going private is very tempting!
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Useless GP's. I don't trust them anymore with managing my asthma and health!
new consultant - mannitol challenge
First severe asthma attack (long post sorry) 
