Hello! I'm hoping somebody out there can help as I'm a mystery to the doctors at the minute. I suffer badly with hayfever in the summer and all year round rhinitus with ocassional sinus problems. Last July I was started on Clenil for "" seasonal asthma"" triggered by my hayfever based on symptoms, 2 weeks of peak flow readings and wheezing. I've since had 2 episodes of extreme shortness of breath of which was admitted to hospital for the first episode in august and avoided admission a second time this month by getting access to a nebuliser at home.
2 weeks after starting the clenil inhaler in July I had a viral infection and costocondritis (inflamation of cartlidge between breastbone and ribs) On doctors advice I had ibuprofen daily for 3 weeks to keep the extreme pain from costocondritis at bay.I then had increased dry cough for 2/7 and so increased ventolin. Day 3 I felt a little more short of breath first thing, peak flow 450 ( best is 530 ) and then very quickly over a few hours became very short of breath made worse on exertion and talking, no response from ventolin and developed an audible wheeze on expiration. Was seen urgently by GP, no wheeze was heard with stephascope but I was told there was reduced air entry. I was nebulised in the practice with good effect and given antibiotics and steroids for exacerbation of asthma and ? infection.Later that night the audible wheeze returned so I was seen by out of hours GP to be told my chest was clear, only a very slight wheeze on one side and he told me I had laryngitis and was panicing! I reassured him I wasn't anxious and after a discussion with A+E I was given another neb which helped and they decided to admit me. Peak flow before neb was 420. During my stay in hospital I was told chest clear every time and no wheeze but was given nebs for 24hours which really helped and peak flows were between 500-530.I was then switched to fostair inhaler and discharged a day later. Chest Xray was fine, Bloods showed raised white cell count. At my follow up with GP he concluded I had some sort of infection that triggered the episode. The fostair inhaler was stopped due to side effects and was switched back to Clenil alone but my symptoms didn't fully settle down so after 6 weeks I was started on serevent.
The start of december I developed blocked sinuses which I found difficult to clear despite trying antihistamines, nasonex, fluticasone nasal spray, steam inhalation and then 2 days before christmas I developed changes in my voice. As I spoke it would sound tight and nurses I work with suspected it might be my asthma but I didn't feel it affected my breathing until 12 days after when I started to feel tight in the chest. When I took the ventolin my voice would return back to normal and tightness would go but over the next 5 days my voice and breathing worsened and eventually I was very short of breath just walking across my kitchen despite 6 puffs of ventolin 2 hourly. Peak flow was 500, After 2 visits to GP practice I was finally given steroids and sent for chest xray which was normal. Again I saw the out of hours doctor who again found my chest clear, no wheeze. Doctor gave me a salbutamol neb which had a good effect, voice returned to normal and breathing improved. He felt I needed referral to ENT and that the problem wasn't my asthma. Maybe something like laryngeal spasm or vocal cords. I used salbutamol nebs at home PRN for next 4 days as very reluctant to be admitted to hospital, GP started me on Omeprazole as stomach tender on examination and also given antibiotics to cover all possible causes and bloods done. Once again bloods only showed raised white cell count. My sinuses are now ok thanks to using a sinus rinse daily.
My GP can't tell me what caused my breathing problems and refuses to refer me to ENT. He's concluded possible chest infection but isn't convinced.
Whatever causes my shortness of breath seems to affect my voice, improves with ventolin although when severe only ventolin nebs work and I've had raised white cell count on both ocassions. Chest is always clear and no wheeze heard through stephoscope and peak flow was only 420 at worst.
*hugs* aww gosh, all I can say is I hope you get to the bottom of it soon! I have had similar breathing trouble for 15 months now, I'm very short of breath and I'm coughing lots all the time but I very rarely wheeze in the way doctors can hear (although I can hear/feel it frequently!). My peak flow is also usually fine, my best is 520 and the lowest I have reached was 390 the other night, I tend to hover around the 430 mark at the moment. I have been down the ENT/Vocal Chord Dysfunction route and personally I have been told I don't have ENT problems. I see a respiratory consultant who is rather confused about the asthma/not asthma debate, so I can say I have been there!
You say you had a chest x ray which was normal and bloods which have shown high white cell count. Have you had any other tests? Personally I was put through the mill on tests, I had a CT scan, bronchoscopy, histamine challenge, exercise test, etc. All to try and rule asthma out and see if anything else is going on. However, if you are feeling better on the inhalers/nebs then I would be inclined to think it is more likely to be asthma/infection/allergy related (me personally, I was on steroid tablets and inhalers and nebs and not feeling any better, in fact I was getting worse, which led my consultant to think something other than asthma was going on). However I'm not a doctor so I'm not sure!
Sorry I can't be much help medically, I am only speaking from my own experiences here. I have huge sympathy for you and I know how it feels to be going through endless tests with no satisfactory diagnosis or explanations. I really hope you manage to get to the bottom of it soon!
I am having the same problem currently and I have never had any problems with breathing before 2015 I have problems breathing and I am on 2 inhalers that help a little bit but not much I have been sent to alot of doctors and they are convinced it's not asthma the allergist I went to said I had vocal cord dysfunction and the speech therapist I went to said that I didn't have vocal cord dysfunction I just want the doctors to find out what is wrong with me because whatever this is its affecting my everyday life and I play the clarinet and I can't go more than 2 measures without having to store cause I can't breathe so I definitely know what you are going through
Thank you so much for your reply.
Do you have any other medical conditions that might be connected to your symptoms?
I had bloods for allergy, kidney function and RAST and they were fine. I had spirometry done December ( at work not through GP) which my GP reviewed and that was normal which was to be expected as I was not symptomatic on the day of the test. I didn't have reversibility testing done.
I've not been referred to respiratory consultant or ENT so had no further tests.
My peak flow is usually 490-500.
This second breathless episode I had 3 different doctors say my chest was clear on ausolation, no wheeze, peak flow was constantly 500 despite 6 puffs ventolin 2 hourly and It worsens to the point like I feel that every breath is an effort and feel exhausted. One doctor said I don't know what's wrong your chest seems fine and another said I don't think your doctor is thinking outside the asthma box. He felt there was something causing a problem upper airway maybe so felt ENT referral but my GP doesn't agree and won't refer. When this first happened I had an audible wheeze higher up in airways.
Unfortunatly thursday my symptoms returned. Hoarseness in voice and feeling of running out of air when talking, coughing, irritation in throat, phlegmy in throat and this feeling I get in the centre of my chest. It's not pain and doesn't bother me I'm just aware of it. A month ago when I had that feeling during the last mystery breathless episode the doctor prescribed me omeprazole as my stomach was tender on examination. I was told to stop that a week ago which I did and then my symptoms returned 4 days later so I wonder if there's a connection. After discussing it with my nurse friend I've restarted the remaining 12 days omeprazole tablets I have and 3 days in I'm much better and have my voice back so maybe it's silent reflux at the root of it all which could be triggering my asthma?
So I will see how I go......
I'm going through the same thing. One minute there saying its an infection then it's clear. This week I have had two ambulances out due to attacks as well as needing nebs at doctors with antibiotics and steroids. Nebs do help but they seem to think it's not asthma as peak flow doesn't alway drop nor do the oxygen levels. I'm under a consultant who put me on med's for gerds had CT scan and waiting to see ENT but can't carry on due to attacks at work I not able to do my job and now waiting for a welfare meeting
I haven't got any other diagnosed medical conditions, but my resp consultant is currently considering metabolic problems as my exercise test was rather unusual. I have to do another one next month to check what is going on in a bit more detail. I also had a blood test done last week to check my cortisol levels, as my consultant also suspects hypoadrenalism (I was taken off my steroids in September and only put back on them last week).
I have exactly the same upper wheeze you are describing, it isn't 'chesty' and can't be heard through a stethoscope but it is definitely noticeable to those around me! Quite a few times people told me it was 'panic' but thankfully my consultant never accepted that and is continuing to investigate. As yet I have no answer, but you are not alone! Is there another GP you could go to to try and get a referral to ENT? From what you are describing it sounds to me like it would be definitely worth a check, especially if you are having to use ventolin so often.
I also get a 'heavy' sensation in the centre of my chest, it isn't exactly pain but it is definitely uncomfortable and I am aware of it when I am breathless. I also have stomach symptoms, I get nausea/vomiting and my stomach is occasionally tender, I was given metaclopromide but that no longer helps. My consultant suspects hypoadrenalism, which could cause those symptoms. I only mention it because you said you had a tender stomach, but if you have silent reflux that could fit too. All in all, seems like you could do with being checked...!
Also, I am constantly told I have no wheeze and my peak flow is normal, and spirometry tests are also usually fine for me (they show normal breathing patterns). I still have no answer for my breathlessness, and sorry I can't be much help, but honestly you are not alone in these mystery symptoms. The only thing I would suggest is if you could go to another GP to get a referral, it really seems like your symptoms need further investigations. Good luck!
I really feel for you all as I have been through the mill with mystery symptoms and it was eventually concluded I do have asthma, but that it's atypical and I don't wheeze. I do get a rather wheezy-sounding cough when bad though, which then can't be heard if they listen but a medic friend who heard it told me was lower airways (a previous consultant who had never even heard me doing it dismissed it immediately as 'laryngeal' based on my description - er mate sorry I'm not accepting your word on it as final when you've not heard it at all! He was really into the vocal cord side of things, told me all my problems were that and/or breathing pattern issues and that while I had asthma, it was mild and well controlled and I was on too much medication.
However, oddly enough 1) when I tried to drop the asthma medication my symptoms got worse (now I""m on oral pred and cannot get off it - I am noticeably better and don't cough at 25/30 but at 20 really struggle and can get admitted) 2) the laryngeal stuff they said was really mild so really not sure how it could have been causing all my symptoms (plus I can and do sing while struggling - it's hard work but the voice is usually ok, though I do get voice issues if it's really going down the pan - I understand from other posts on here that this is linked to asthma, though in my case it might also be that the cough I develop, while it's not coming FROM the throat, doesn't help my throat).
I have to say Clairee7 that your experience does sound familiar - like I said I am not much of a wheezer but have the reduced air entry thing as well when I get worse. I tend to automatically say 'I don't wheeze' now as soon as they come near me lol (on 2 occasions I actually did. and one time it was with my usual GP who I think was really surprised hehe). And I have to explain the cough - they ALWAYS want to say if it's not infection (and it usually isn't with me) it must be laryngeal. but what do you know, on higher dose pred it's not there... The better doctors I've seen get it about the cough and they also are better at assessing air entry - when I've been told my chest sounds normal. I often want to ask 'is it actually normal or did you just not hear a wheeze?' An asthmatic having problems will also be working harder to breathe normally which a good dr should also be able to tell - I find it's really hard work when I'm struggling and they want to listen. (My GP, who is amazing, really gets this - she asks me if I'm having trouble breathing the way she wants me to and the first time I met her she said I wasn't shifting much air - I was immediately impressed that she wasn't on about wheeze).
I also have slightly erratic PF - overall it correlates with symptoms, reliever use etc and I am pretty reversible (it went up by about 150 after a couple of nebs once) but isn't always a reliable guide at any one moment, and as I have a personal best of 600 I find I usually have to explain that no, 350 is really not as good as they think it is (predicted best for me is 470). I will say especially to michowls that you DO NOT need to have dropped PF or sats to be having an asthma attack, so while you should be open to other possibilities, don't let them tell you it's not asthma just because of that.
Anyway sorry for ramble...I hope this helps. Just wanted to share my experience as I know how it is getting the mystery symptoms - so frustrating! Having uncontrolled asthma (and not much in the way of helpful management from consultant right now) is also rubbish but I do prefer to know what is going on and it certainly makes it a little easier when I do need immediate help.
Hoping all of you find solutions soon/feel better!
michowels- have your GERD meds made any improvement to your symptoms?
musicgeek93- That's interesting you have the similar feeling in the chest too. Have they tried you on any GERD meds did you say? Hypoadrenalism certainly sounds like an explanation for your symptoms. I'm glad you have a consultant investigating for you your very lucky. My GP is usually very good in fairness so I was disappointed he wouldn't investigate anymore. He eventually agreed if It happens badly again he will try get me seen in ENT urgently so they can pop a camera down and see what's going on. That won't be pleasant when I can't breathe anyway Luckily I work in a respiratory team so I have people around me with knowledge and contacts who can help out. We are planning to have a quiet word with the consultant tomorrow and see what he thinks. Good luck to you and thanks for chatting it's been interesting.
philomela- thanks for your response. Sounds like you've really got it bad at the min if your struggling to wean off the steroids. It's so frustrating isn't it when they just keep saying your ok and you know full well your not. Doctors do still go by peak flow alot and not how your feeling. You feel like your having to prove to them your breathless, and then the same old line "" are you anxious"" comes again Very frustrating I've had 3 weeks off work after each episode and probably gone back to soon but managed to get by.
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Luckily I work in a respiratory team so I have people around me with knowledge and contacts who can help out. We are planning to have a quiet word with the consultant tomorrow and see what he thinks. Good luck to you and thanks for chatting it's been interesting. 
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