Non-classic asthma & unrecognised respiratory condition

Hi everyone,

I haven't written on here for a while whilst i have been having tests and awaiting results etc.. But do read topics on here most days. I found out a few weeks ago i do not have a hole in the heart, which was a huge relief but, also raised questions over what is causing the shortness of breath i have been experiencing every day for the last 11 months?

I just wondered if anyone has been through an experience like i am going through currently. I saw the consultant this week and he said he only has one more test that he can do and believes i have something wrong with the way the blood vessels are linked to the lungs (or may be mistakenly bypassing the lungs) or it may be a lack of maturity of the lungs but really he does not know and cannot therefore treat it. He did say he has only had two other people in the last 15 years who had the same test results/symptoms. They happened to both be physically fit women in their late 40's like me.

I am a bit stunned and it is still sinking in. The last test is i believe the ventilation/perfusion scan. But he spoke to me as though he was sure of the situation. I have loads of questions for my next appt, like will it deteriorate, is it linked to my 'strange, difficult to control' asthma? How do i describe the condition for work/insurance situations?

He has increased my symbicort dosage and put me on uniphyllin in the meantime and has asked me to think about a daily dosage of steroid tablets, he said, 'one to one and half tablets a day.' So, I am assuming he meant 5mg tablets. He has also asked me to work on my physical fitness, which i know will be a challenge when i get out of breath after 10 - 15 min snail-pace walking, but i am going to get my fitness back!!

I would just like to hear of anyone else's knowledge on any of this please?

Thanks Jac xx

15 Replies

  • Hi Jac,

    Not really sure how much help I can be, other than with sympathy - I do know the feeling as my asthma, if it is that, is not classic and doctors are still trying to work out what's going on - meanwhile I'm ridiculously breathless but have no medication because they don't know what it is! Probably not the same as yours, but I know what it's like to have something that's hard to figure out, it does make some things (like explaining what you have) more difficult even if it's not necessarily as bad as severe asthma (In my case).

    I will say that there's someone else on here who's been posting about having a very rare non-asthma-but-looks-like-it problem which was sorted out eventually - so rare that only a few doctors knew about it - but it did get sorted, so if you do turn out to have something exotic that this consultant can't treat don't give up, as it may be beyond his area of expertise. I believe there are some really niche areas out there that one or two people are experts on but other doctors aren't familiar with, so if he can't treat it it doesn't have to mean you're stuck with no treatment - ask what the options are and if he knows of anyone who specialises in the condition (if it turns out to be what he thinks).

    I assume btw he's a respiratory consultant - did you also see a cardiologist with the heart thing, or did you just have heart tests and got results from respiratory? I say this because when I was seeing a consultant before at a different hospital I had tests on my heart that all seemed normal except for fast pulse, but the resp. drs were fine with it and never saw a cardiologist. Now seeing different resp. consultant as I moved, and she has noted the fast pulse, acknowledges that previous heart tests were normal but thinks I still need to actually see a cardiologist. She did say it could be a red herring but it is possible, as for you, that if you've just had a couple of heart tests that side is not ruled out (though of course could be fine - I don't want heart issue either, is a bit scary!) So maybe worth asking to see cardiologist if that hasn't already been completely ruled out by the experts?

    Sorry this is a bit long but I hope it helps somehow! Feel free to PM if you think that would in any way be helpful, though my experience I know is not the same.

  • Hi philomela,

    Thanks for your reply. I am seeing a resp specialist. I had an echo bubble study done on my heart by a cardiologist. But, that can be another of my questions, can it be anything else to do with my heart?

    I sort of get the respiratory system not being efficient/working well as in my 20's a resp specialist said my heart and lungs don't work together well so i needed to keep my fitness up, which i have done.

    Some of the questions this specialist asked me was, was i premature? (no) Have i ever been in a fire? (no). I do wonder if this scan will highlight a problem too. I feel optimistic too that this specialist will try everything medication wise to improve my situation. He hasn't sent me away to get on with it!! lol

    Jac xx

    I hope your situation gets sorted soon too. It's so tiring being breathless all of the time isn't it?

  • when you exercise do you start very slowly and how do you breathe?

    Hi JF,

    I used to have a permanently high heart rate and very regularly breathless.

    How high is yours? Over 100 it is not recommended to do much intense exercise.

    I learned to breathe correctly (in and out of the nose at all times).

    This is particularly important to those who suffer breathlessness on exercise.

    Start off really slowly. Only go as fast as you can while maintaining nasal breathing in and out.

    If you are a habitual mouth breather (i would guess you are) this will slow you even more than snail pace.

    If you start to feel anxious or suffocated / breathless, ease off on the pace or stop and recover before resuming again.

    thankfully, if i maintain a reasonable level of fitness (only 2x1 hours a week, would love to do more but have 3 small kids - no spare time) i can protect myself from my symptoms.

    If you are mouth breathing when exercising it depletes you rather than benefit you.

    Nose breathing at the correct volume is restorative and cumulative benefit for your health.

    It is ignored it many cases by doctors who possibly do not understand how vital it is.

    In my own case, i went from a total mouth breather to total nose breather in 2003 and have barely had symptoms since (with a few hiccups). It made masive differences in many other areas of my health and life as well as my pulse dropping back down to more averaage levels from a high level (steady early 90's) at rest to early 60s now. I also hydrate myself far better but in general havent changed much else other than my breathing.

    It can take 8-12 weeks to get back to levels of exercise currently possible through mouth breathing but then your heart rate will be lower and you will be able to do far more without getting teh breathless symptom. Most people (90% +) do not breathe correctly and this alos applies to most professional athletes/footballers etc who have been told to breathe in through the nose and out through the mouth. Over time this causes issues with incorrect volume, the bosy responds by adding mucus which blocks the nose with a slide to bigger volume breathing and gradual fitness dip and health disimprovement. We all should breathe through our noses 24/7 in and out.

    When exercising make sure to warm up slowly and calm your breathing as quickly as possible afterwards.

    Your breathing and heart are interlinked, high minute volume of breathing = higher than required heart rate.

    good luck


  • Hi B,

    Thanks for your reply. I appreciate buteyko (?spelling) has worked for you but, my problem is not just asthma. What i meant by an unrecognised resp condition is that i have abnormal readings in one of the lung function tests that can indicate a hole in the heart or various lung conditions but, i do not have these conditions. It is this abnormality in my respiratory system that is causing my shortness of breath (seperate to my asthma.) The consultant explained they do not have the knowledge of what condition it is and is obviously rare if he has only seen 2 people with similar test results/symptoms to mine in 15 years. He did explain it is the resp system that has a fault in, as my lung function is 30% better than what would be expected in someone my size and age (which i am over the moon at!) but, my body is not processing/transferring gases correctly.


  • Hi Jf. i also was told could be my heart and had tests.They came back ok and now under consultant and hospital asthma nurse in respirotory unit and they see to my meds now and they fax my doc if meds change or on steroids and phone me once a week see how i am between visits.Try not worry could be asthma playing tricks and they just need rule out other things first xxx

  • Hi glynis,

    They have ruled out hole in the heart and the abnormal result is not something related to asthma. I guess i am trying to get my head round it not having a name and even the resp consultant not knowing what it is. He just knows it is something different to what he normally sees and cannot therefore treat it. He is focussing on getting my asthma back under control and then i think seeing whether my 'other' shortness of breath that only responds to sitting and resting improves or stays the same. i am just curious to hear if there are others going through something similar? Or have gone through?

    I think after 11 months of this i am not so much worried anymore, just keen to get some of my life back! Rather than using all of my energy for work and spending my own time recovering. I hope your situation is improving Glynis as i know you have been having a rough time of it lately.

    Jac xxxx

  • I hope people don't mind but as loads of old topics were replied to, this one dropped to end of 2nd page so i bumped it up as am interested to hear from anyone in similar situation.

    Thanks Jac xxx

  • jf ,

    we bump loads up so bump away xxxx

  • I am rubbish at remembering who has said what sometimes but wasn't there someone on here a little while ago that just found out that the blood vessels to their lungs were wrapped around their wind pipe or something?

    Can't say I have ever been told anything like this but just remebered reading another post before. Good luck with finding all your answers and hoping you can get on with living your life as well as working it. xx

  • buteyko and correcting the gas transfer

    Hi JF

    when you switch to correct volume (possible through exercises, from mild to strong depending on your individual case) and delivery of air (through your nose, in and out, exclusively) the bit that gets fixed is the transfer of oxygen and CO2 gases in the alveoli and this corrects the imbalances in the tissue gas transfer.

    Some people achieve this through buteyko, others through other breathing exercises or yoga.

    If you are not a good breather, you should check out what people who are good breathers and learn to do what they do! Mouth breathing at rest (sometimes not noticable as we are conditioned to ignore it) is without question incorrect breathing. Nasal breathing but at the incorrect volume is harder to detect but quantifiable through minute volume tests. Hidden hyperventilation (demonstrated through sighs, hearing breath at rest, big volume breathing, snoring, dry mouth in morning, asthma) can result in your symptoms and by correcting it you can buffer yourself from your underlying, unidentified thusfar condition. It also helps with reducing your stress/anxiety and taking back control of your breathing rather than it controlling you gives you reassurance whilst you wait. In the meantime, breathing in a fashion less straining on your body can only help - but do ask for advice and learn from a practitioner.

    Better breathing is not just for asthma, it works for better brain and body oxygenation, hayfever, snoring, poor circulation (cold hands and feet), immunity imbalance (regular colds/flus/ chest colds/prolonged/repeat infections), anxiety and a very long list. Buteyko has had a handful of medical trials for asthma, there has been a recent successful study (not yet published) in Limerick Regional Hospital under the head consultant Dr John Fenton for rhinitis and sinusitis) but its wider importance in how we all should be breathing is overlooked.

    Correct breathing should be taught in schools where the role of incorrect breathing in poor attention, poor health (both mental, physical and dental) and ultimately in poor school performance is easily inferred from related medical studies relating to breathing. The info is out there, the joined up thinking is sadly missing because people are all thinking the same way, status quo or some other inexplicable reason. The papworth hospital work on hyperventilation and its parrellels are scary to see how many symptoms are present in a typical group of asthmatics.

    Breathing has a massive effect on sports performance too - note how badly most professional sportsmen and women breathe (premiership footballers a terrible example in way to breathe - all short of breath in a few minutes).

    good luck with it....hang in there.

  • Hi nickynoo, I believe it is Bee There who has the blood vessel around her oesophagus (or something) and am always interested to hear what she has to say as she has a wealth of experience. I am hoping the consultant is looking into what it could be between now and my next appt. He definitely seemed fascinated that 3 women have now shown these similarities. I just wish it was something i could research myself but i wouldn't know where to start lol.

    Buteyko'd, it will be interesting to hear of this new research. Was it a large study group? I would never try and alter my breathing without specialist help and i am glad it has worked for you but i am sceptical of it being the solution until i hear further proof.

    Jac xx

  • Hi JF, just wanted to say that it was BeeThere I was referring to in my post below (first reply to your post) - I just wasn't sure if it was ok to say who I was talking about - not up on all aspects of forum etiquette! I thought her experience might be encouraging as she seems to be getting things sorted.

    I know what you mean about wishing you could research your condition! I don't think I have anything as rare as you but I'm certainly not classic and if I were my consultant I think I'd find it quite interesting. Plus, let's face it, we're human and I was told what I had was hyperventilation by a consultant who turns out to be a top asthma expert - albeit one who never seemed to read my notes properly. If I were my new consultant I would be pretty satisfied if I could solve my weird case when he didn't - and I don't think he did as coughing for 7 months straight doesn't seem like hyperventilation in my admittedly non-expert and subjective view. (Edit: to be fair I had only been coughing for 6 weeks last time I saw him).

    I hope your consultant comes up with something good and you get this sorted.

  • Hi Philomela,

    I'm not sure of forum etiquette either! (whoops). I have had hyperventilation thrown at me for the last 22 years but finally did the 'hyperventilation provocation' test in January and it proved i don't hyperventilate. At least i can throw that back if it is ever mentioned in the future!! lol

    A couple of years ago, i saw a professor on tv from one of the universities and he said they should change the name of asthma as with the increase in knowledge of 'asthma' it is evident it covers a huge variety of symptoms and asthma is too simple a term. If i remember correctly he did mention it should be described as symptoms on a continuum like autism because it affects individuals in different ways. Interesting thought!

    I'm glad you have found a consultant who is interested in solving your asthma. It makes such a difference to be taken seriously doesn't it?

    Jac xxx

  • Hi JF,

    Not sure if consultant is solving it - still waiting and waiting to hear something and getting rather impatient (lack of breathing does that, I find, and I'm sick of being overtaken by old ladies when I'm walking). She seemed to think it wasn't asthma (I'm still not convinced it isn't) but wasn't ruling it out completely and was willing to consider and test for other stuff, and she was fairly honest and said it was a bit complicated and wouldn't be that easy to work out. So far ok, but really wish I'd been more proactive about asking what happens next and when as I really hate being in limbo like this.

    Hyperventilation provocation test sounds useful - though I can't be 100% sure for myself that I NEVER hyperventilate, just that I don't think it's causing this. It does seem to be a handy catch-all for when they can't figure out what it is though, and it's great that you can wave that at them and say 'no, try again'!

    I've heard asthma as a 'spectrum' disorder - I have to say that when I was younger and had mild asthma which didn't really affect my life much I had no idea what it could be like for some people; in fact I didn't really grasp it properly before coming on here.

  • Philomena, it is a slow process. I have only just found that out. I first saw the consultant beginning of last Sept and he is only now beginning to give possible answers. I am a bit excited today as started uniphyllin yesterday and can breathe deeply today. (Along with increase in Symbicort too.) I am going to try and walk home from work tomorrow, (I am working tonight.) I have missed walking so much!!!

    I think i can hyperventilate when i am very short of breath but, i think it is a natural response to the situation, not the cause.

    Jac xxx

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