Hi to the community

Hi everyone

Just wanted to write a post to share my experiences as its great to read everyones posts and realise that I'm not alone in suffering with asthma and the lonely feeling that can give you as everyone else seems to go on enjoying life whilst we suffer silently. Im not sure what I'm expecting by writing this but I thought I would share where I am at and what I have tried incase anyone has advice or similar issues.

I had asthma as a child and only ever needed to use my blue ventolin inhaler when visiting friends with cats & dogs or exercising very hard, any flare ups recovered within a few days and things were back to normal. This all changed two years ago Feb 2015 when staying at a friends house with a cat and dog overnight I left feeling very ill and never recovered off the back of this flare up with the asthma not improving after a couple of weeks and my first hospital visit waking breathless and my ventolin not feeling like it was working for the first time in my life. I introduced Seretide to get more control and at first this worked but eventually the asthma crept back in and from then on the list of drugs and strength increased to try get a grip on my asthma. I am always battling in my own mind the benefits of taking drugs and relievers to improve symptoms against the reliance to take them and the feeling that as I have increased the number and strength of drugs I take to help my asthma that my allergies and asthma symptoms have worsened leaving me concerned that they may have had a part to play in causing complications - GERD, daily hyperventilation & other issues. I have had a few good patches where I have been able to live a nearly normal life and have been able to reduce the strength of steroid I need to take on a daily basis but these are very few and far between and generally my asthma is a daily challenge and cause of anxiety and sadness with my quality of life and independence being taken away. I have had to cancel holidays, leave holidays on emergency flights home, give up jobs, leave nights out / festivals early, loose friends, move back home to live with my parents and give up sports and exercise that I used to enjoy all because of asthma and my inability to get it under control. I feel blessed that up to he age of 22 I was able to live a great life and be very fortunate in the experiences I had but the last two years have been a nightmare and I have lost a lot of hope that things will be better in the future fearing for what may happen if my asthma continues to slide backwards and my lungs weaken.

Moving onto my condition I constantly feel some degree of breathlessness like I cannot catch a full breath. The tightness always feels very high up in my chest above my nipples and below my neck. When bad I normally feel very light headed, my neck tightens and my chest gets very sore and painful giving me some relief when I breathe through my belly. I try to breathe through my nose at all times as advised and when my asthma gets bad I cannot move any air through my nose it feels empty like the air wont move out so I have to force big breaths out through my mouth. Recently I have been belching a lot when taking breaths in and I know GERD plays a big factor as my asthma is worse after food, when lying down and can improve if I drink water. One thing that I find confusing and annoying is that I don't have the classic asthma wheeze anymore even when I feel terrible ( I did this as a kid when asthma ) and my oxygen levels will hardly change when I feel really rough. This has lead doctors to be sceptical previously which I find really hard but then on the other hand I recently had lung function testing using ventolin and the nurse said the results showed I have some permanent scarring so its clearly not all in my head and anxiety based which is reassuring to know I am not going mad !

One of the biggest challenges with my asthma now is going from a kid being allergic to cats & dogs and having mild exercise induced asthma over the last two years the list of allergies I have has spiralled and increased in numbers and reaction. I now struggle with pollution (feel asthma instantly when smoggy, visiting London etc), dust mites (very severe now - I have to sleep with a dust mask on every night otherwise I wake up with terrible asthma, visiting clothes shops gives me a severe reaction & radiators in carpeted rooms will affect me - had to give up an office job because of heaters on carpets), cigarette smoke ( I have never smoked but will react to breathing in others) and then sulphites ( feel awful after a heavy night out drinking any alcohol these days - a constant battle as a 24 year old lad !)

Currently I am on 200/6 symibcort smart regime (although sometimes when really bad I have to take my ventolin), montelukast, fexofenadine, avamys, respimat, omeprazole and vit D tablets. I also take lots of vits - magneisum, vit c & fish oils to try help. I have tried fostair and seretide before but found symbicort works best although recently I feel worse after taking symibcort !) I have a referral to resp dept in Southampton so hoping for some help, but I did visit resp dept in Wolverhampton when living there previously and was only given Symbicort smart regime as main advice which I amusing currently and hasn't helped, so not feeling very hopeful that I am going to find the cure to my problems. Also had private allergy testing done with Dr Morris - Surrey Allergy Clinic which wasn't very helpful at all just told me what I already knew I was allergic to and when I discussed dust mite desensitization he stopped replying, I also saw a private resp consultant in the early days or issues in Midlands with little helpful advice either !

Sorry for the long winded post but I wanted to get as much across as I could, its been a long two years. Hopefully if you're reading this you might have experienced some of the symptoms and asthma challenges that I have and may have advice but also know that you are not alone as this was the main reason for me posting as I found it reassuring reading about others who were brave enough to share their experiences with this life changing disease. If this helps one person then I will be glad I posted on here so good luck to everyone and hopefully things get better in the future.

Ben

10 Replies

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  • Hi Ben I think it was very brave of you to write in. You certainly have been through it these ppast two years and so young. I really do admire you, I suffer with cold but have a nephew who suffers with asthma. At least you are trying to be positive, hope you find some solution to your problems, please keep in touch and let us know how you are. Take care😊 xx Bernadette

  • Hi Ben, yep it all resonates with me. Last two years almost three, has been an nightmare. It is scary and I live alone. I'd be lost without this site and lovely people on it. It's been my life line. Take heart and be as safe as possible x

  • Hiya hu

  • I don't know if this is any help to you but I have a dehumidifier on in the bungalow in the morning to clear the air. I use a salt lamp in the evening which seems to help after it has been on for half an hour Andi practice a very gentle form of Tai chi 😁

  • Hi BenYour asthma sounds a bit like mine. I react to most breathable in stuff and also to sulfites, nuts, changes of temp and stress. I wish there was practical help I could offer, but all I really do is take my meds and avoid my triggers which has meant cutting back a lot on the things I eat drink and do. I'm very lucky I have a very supportive GP and my family are great. I have some friends who are really helpful and some who don't really get that my asthma often dictates what I can do.

    Hope the tree pollen isn't too bad where you are, take care and good luck xxx

  • Hi & welcome :)

  • Has respiratory consultant sent you to a specialist asthma clinic where they carry out many tests to see if they can help you. I am sorry to hear that ypur asthma is so poorly controlled thus affecting many areas of your life. Hope u great better treatment that will help u.

  • Hiya have you ever been tested for vcd as tightening in throat could well be that and also if you taking treatment for mucus could be dangerous with gerd so please get these checked im so sorry youve had such a bad time and hope things improve xx

  • Hi,

    Check out my reply to Jess33 - you may have already tried some of these things - but keep trying, don't give up.

    In addition rubbing oil (olive or coconut) on your chest, back & front helps. If somebody else is doing it, they could tap your chest by forming a cup with the hand and tapping all around. Lie on your front and tap back, then do the front and the sides. This will help to loosen the phlegm. Steam inhalations help too. If you do not have blood pressure problems, eat liquorice - the black ones from liquorice allsorts are fine.

    There are homeopathic dust, dust mite & other allergy pills that help. Ask for a referral to a homeopathic doctor/hospital. They can be taken with your meds. Also, do not make up your bed, roll the covers to the end of the bed so that the bedding can air out.

    Mites from dogs and cats can linger for years in homes and cause severe attacks.

  • Hi again, I was at the hospital yesterday for rehabilitation...walking 😂 for assessment. But I ended up wheezing like crazy and wheelchaired back after 5mins. The respiratory physio specialist at my hospital recommends pilates. I have severe uncontrolled asthma and on max amount of meds/nebs.

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