Looking for people like me

Hi everyone

I've been floating around for a while and reading the forums. I note with concern that many of you are in and out of hospital and use nebulisers every day. My asthma seems different and I was wondering if any of you have similar symptoms or any idea what could help. I'm not even sure it's asthma sometimes!

I'm a 34 year old lady and my first and only exacerbation started at Easter this year. I started noticing chest tightness and coughing 24 hours after going swimming or doing a yoga class which would resolve after another 24 hours. Despite increasing becotide, three courses of pred through the year, serevent and spiriva, I now get crippling chest tightness and cough from any kind of exertion. I can't do anything really so I've been off work for a few weeks. My peak flow is anything between 400 and 530, but I don't see much correlation between symptoms and PF. I've also tried symbicort (gave me chest pains), singulair and phylocontin. I didn't give the pills much longer than a week because pred had already ripped my stomach to shreds and I hadn't yet found the amazing ranatidine. Maybe I should try them again?

These tests have come back negative: echocardiagram, ECG, exercise ECG, loads of chest x-rays, lung cat scan, sinus scan, allergy tests and blood tests. The only positive test was a barium swallow, but I think I've nailed that problem now.

It feels like a slow and unstoppable freight train heading towards - well, something dramatic. I don't know! I was just wondering if anyone has similar difficult-to-shift slow onset asthma? Or does the fact that it's getting worse despite taking so many drugs mean it's all in my head as so many helpful friends keep suggesting..?!

19 Replies

  • Sorry, just noticed I didn't do a very good job of calling out the things I think are 'different' about me! I always have normal lung funtion test results and despite being so poorly I've only been nebulised once. Any advice or thoughts gratefully received :)

  • Hi Zed531

    Just to let you know I have read your post. I too, worried when I read the forums but asking questions even if I thought they would sound daft and a more than a few PMs from the folk on here set my mind at ease.


    PS -

    I have never been in hospital with my asthma.

    I have been never been nebulised and to tell you the honest truth, I'm not sure I'd recognise a nebuliser of it was put in front of me.

    I also can't see any correlation between my PFs and symptoms. Going to ask my asthma nurse about this on Wednesday coming. MY Peak Flows tend to be 240 - 350. Once and only once, I got a reading of 370. But then I'd had 4 lots of Ventolin that day.

    I get chest tightness in the middle of the night and after walking up a low hill and a feeling like a butterfly beating its wings in my chest when I've been clearing out a cupboard or humphed bags of rubbish down the stairs.

    There..feel better? You're not alone. We all have differing symptoms but enough of us have enough of them in common to give support and benefit of our experience to others.

    Best wishes,


  • hi zed

    I am in a similar situation to you, although i take quite a lot of meds like you for my asthma and have been in hospital quite few times, my lung function tests are also normal as were my allergy tests and ct scan. but my consultant said that due to my history of asthma symptoms it was definitly asthma. i can also be feeling really poorly and still have a near normal peak flow, infact my peak flow only ever drops really low when i am having a really bad asthma attack or occasionaly when i have a bad chest infection

    hope this helps

    lejaya x

  • Hi Zed,

    Everyone's asthma is different, but don't worry you don't feel like you are the same as most on here. This site has a higher proportion of asthma sufferers at the extreme end of the scale, who have great difficulty in controlling their asthma, hence the nebs, hospital admissions etc.

    My asthma started last year with just a tight chest and shortness of breath, and I linked that one event of using a different swimming pool to usual, and it had a combined chlorine level 2.5 times the recommended maximum level. I now have thing under control and back to doing what I did before. Yoga is usually good for asthma, due to the method of breathing used, and relaxing nature of yoga, unless you happen to be doing the Ashtanga, or Bikram styles, especially the latter.

    Peak flows seem OK at the top end. I'd try the singulair again, as I'd get that persistent cough from exercise, which would last about 24 hours, and now since using singulair that's stopped.

    I'd go back to your GP, and get this sorted, it can, but you just need to be patient, give the medications time to work, before you try something else, unfortunately this can be a long slow process, but worth it.


  • Thanks everyone for your replies and to you Bee for the PM. I feel a bit better - think I'm just going mad with being stuck indoors worrying about getting the sack! This might sound a bit weird, but I sometimes feel like a fraud because I don't look that sick and I'm not always in hospital or falling down with sudden attacks, even though I rarely feel able to work or shop or clean the house.

    I'm seeing a consultant at the moment and she's suggesting lots of new things to try. Saw the GP this morning who prescribed singulair again, so fingers crossed.

    Woody-som... It was astanga. And the swimming was at a pool that would be closed from time to time because the chlorine levels were too high. What kind of yoga do you think is best? I always used exercise as a stress buster and not being able to get the blood pumping round my body at the moment is driving me mad.

    Thanks again

  • He Zed,

    Do check the swimming pool, there's a huge amount of data supporting chlorine and asthma, even the HSE website has reports.. Ask to see the records for the water quality, pools keep two figures, the 'free chlorine' is usually between 1 and 3 parts per million, but don't worry too much about that one, as that is the good chlorine. The one that you have to watch is the 'combined chlorine' and that has a maximum level of 1 part per million, but ideally should be below 0.3, the danger with the combined chlorine, is that it's the clean chlorine has absorbed all the bodily fluids from the other swimmers, and a high level indicates a unhealthy pool. Also pool temperature has an impact, ideally it should be below 27deg centigrade.

    Ashtanga yoga is certainly not the slower style. Ashtanga practice is very physically demanding because of the constant movement from one pose to the next., so no wonder you were left puffed out. Hatha is a very general term that can encompass many of the physical types of yoga. Hatha style is probably going to be slow-paced and gentle. Other slowish styles is Iyendar or Vinyasa, they tend to be a bit faster and physically demanding than Hatha, but not as much as Ashtanga.

  • Hi there

    when i first got told i had asthma i hardly recognised it for a long time i was only on a blue inhaler and somtimes i used to question myself did i really have asthma or was it just me thinking i couldnt catch my breath so your not alone its only been in the last 4 or 5 years ive ended up on the brittle side of asthma and on max meds so hope that hasnt scared you just thought id let you know how i was for many years before i turned brittle please pm me anytime if you have anything you want to ask take care xxxx

  • I'm a 49 yr old,who in the past had ? seasonal asthma using a ventolin spray occasionally. Last October I had a really bad cold and chest infection , my asthma needed steroids after the usual dose of inhaled steroids and ventolin did not work. Since then I have progressed through 4 lots of short term steroids, now on seretide 500 2 puffs B.D, singular 10mg OD at present I'm not needing ventolin but my chest is very delicate and I have lost my voice on countless occasions throughout the year. My weight is on the up, hence starting the gym today trying to get a bit fitter, I don't know how I'll fair,just had a wheezing bout, not needing anything as yet. Just returned from holiday and my asthma did,nt affect mee at all, back 5 days and I feel i'm on the downward spiral. Took the decision to have flu and swine flu jab and am worried sick. Hubby doe'snt want me to have it he feels last year first time had flu jab and never been the same since.

  • For Ju

    Ju, I'd PM but see you've opted out.


    Can understand husband's worries - mine's just the same - but I'd go with your GP's advice.

    Sounds as if you've had a time of it and, like me at the start, perhaps unsure on differences between preventer and reliever. You might need different reliever if chest feels fragile. It does take a fair bit of time to find the meds that, if not completely, then at least helps to sort it out and lets you live a better life.

    This year alone, I've worked my way through several types of inhalers/meds trying to find the combination that will help most. Still working on it so don't give up hope on your own quite yet.


    GrannyMo xx

  • Hey everyone - thanks for all your replies. I've got my fingulairs crossed!

    The first singulair side effect I've noted is that although I got to sleep fine last night, I didn't wake up this morning. Not at 8am to take pred, servent and becotide, not at eleven to check my PF. I didn't wake up 'til 1.30pm! Now my PF has dropped and I ache from being late with the steroids. I'm going to ask santa for a louder alarm clock.

    Trippy dreams too. I reacquainted myself with some people I haven't seen in years last night...

    Thanks for your PM Ju and your message Kerry-Anne. Sounds like you know what you're doing, Granny-Mo. Personally I don't see the problem with the flu jab. I missed my first appt for swine flu jab in November due to a very minor car crash and I'm looking forward to getting it on Saturday. I'm a big believer in immunisation.

    Woody-som (is that Japanese or something? Or a clever play on 'worrysome'?), the pool has now closed, probably because it was old and broken. Cheeky sods are still charging me a monthly fee which I've cancelled with the bank.

    I've been in bed for days and I'm itching to go out and have a normal life! I may brave the rain this avo for a mooch round the town.

  • hi zed, could ask whats behind hour name. afraid mines not japanese, and the play on words was a freudian slip by some one once on here, but no plain and simple woody was a nickname my first girlfriend at primary gave me and it stuck, would have used it here but already taken, so stuck som on the end as it's short for somerset, where I live.

  • You could. I first registered on here last year before my asthma was even something I gave any thought to. I was doing research on health-related websites and the emails they send to their members. I always put 531 in my usernames because it's a type of raleigh bike tubing that probably doesn't exist any more and I used to be well into cycling. Dunno about the Zed. My name's Cat really :)

  • Oh the old 531 steel, nice ride if I recall. now it's carbon fibre or in my case I have aero space grade titanium frame on my bike, feels like your riding on air.

  • Hi zed531, I still have a cycle with a 531 frame, its a 20 year old holdsworth esprit! haven't ridden it for 12 years as I am now deaf and used to race, don't feel safe anymore. I got pulled over for speeding on it a very long time ago! the policeman was laughing about it.Didn't give me a ticket. It was before I drove, I wonder if I would have got three points?

    Hope your feeling better soon, I'm having a horrible year with my asthma and my Son's is even worse. I'd say roll on summer but we even suffer then.

    take care


  • Hi Zed531

    Im sorry you are having a rubbish time with your asthma. I cant really give any medicaladvice other than to say if you are using your ventolin ( or adifferent releiver) more often or daily then your asthma doesnt sound controled so you need to either go back to your GP or respiratory consultant. Obviously if at any point your symptoms are not reeived by your relever inhaler then head to your GP or if it is severe then go to the hospital or call 999. Most asthmatics acheive good control of their asthma where they need little or no reliever except in a flare up.

    As for your comment about a lot of folks being in hospital and home nebs regularly etc....

    The AUK board has a very high proportion of very severe or brittle asthmatics. This is disproportionate to that of the general population as most people dont tend to veiw their asthma as a problem and rarely feel it necessary to ask for advice from here etc Those on the more severe end of the spectrum however have often reached a point where they dont know what to do anymore and as this site is great for sharing experiences it is a great place to talk to other people in the same situation as yoursrlf etc.

    As i said most people acheive good control and dont need their releiver much. Home nebs tend to be recommended to people when all other methods of gaining control have failed, and it is not a decision to be taken lightly. In my experience i was only advised to use a nebuliser after almost a whole year in hospital. without the use of regular nebs at home i would be practically living in my local NHS prison.

    Just to get to grips with your situation i dont suppose you would mind answering a question???

    How long have you been asthmatic - was it at easter this year at the time of your first attack?

    If you were only diagnised at easter then its still early days yet, It can take a while to get the right combination of drugs that suit you and control your asthma. It is very much trial and error in the beginning - sorry.

    Also if you were diagnised earlier this year then this will be your first winter as an asthmatic, the only advice i can give here is to try not to directly inhale the cold air as some asthmatics find that this can trigger their asthma. I tend to wear a scalf wrapped round my neck and covering my nose and mouth. This helps to warm the air before it hits your lungs. If you cant tolerate a scalf round your nose and mouth there is a balaclava type head-gear that you can buy which is seemless and apparently great in sunny or cold weather and can filter the air you breath in if you wear them over your nose and mouth - they're called buffs. If you type buffs into the keyword search on this page you should find some more information on them.

    Hope they get you sorted soon do keep us all informed etc, and please go and see your GP or consultant if you are using your reliever inhaler frequently or if your not getting much relief then go to A and E or call999,

    Feel free to PM me if you have any questions etc,

    Take care lv KitKat Xx

  • sorry i am having one of those days today - didnt realise that people had answers for this thread already (im so thick at times!!!)

    I apologise for what must have seemed a stupid response so late on!!

    Gonna go to bed in a sec maybe if i sleep a bit my brain may work more efficiently!!! :D

    Take care all,

    kat Xx

  • Hi Kat,

    Don't worry, i liked reading your post, we were getting a bit off-topic. Did you get a buff eventually? I got a free one today with a cycling magazine.

  • Update

    Feels like the singulair could be working... I might even go back to work next week. Eek! :)

    Thanks again for all your advice


  • In addition to Kit Kats experience. The only reason i am on home nebuilser is because i am allergic to all other blue inhalers, i wouldnt be on nebuilsers if i wasnt allergic. My advice is dont even think of getting them at home concentrate on getting them to work at home with other add in medication which your medical team will help you with.

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