I thought I'd have a go at this to see if I get any responses. I am 23 years old. I had mild asthma when I was younger but had my first life threatening attack was when I was 17 while on holiday in America. I was intubated and was in a coma for 6 weeks. Since then my life has changed completely. After returning to the UK doctors and consultants passed me from pillar to post like I was some scary disease that no one wanted to temper. I felt completely helpless and disposable. No one could give me a diagnosis and I went a further three years in and out of Intensive Care, scaring my family half to death and I still had an English degree to get through. I have been resuscitated three times and have had near fatal seizures after the administering of aminophylline (which was ironically given to safe my life). I finally had a doctor in London see me and she took her under her wing. I am now on Xolair injections every two weeks and its really changing my life for the better already. But although the physical side of the effects of the asthma is getting better, I still feel sort of 'psychologically damaged' by the way it has controlled me throughout my entire teenage years.
This condition has knocked my confidence immensely and I always feel awkward in situations where I need help. I think that ignorance to the condition has a lot to do with it sometimes. At Uni my flat mates weren't very understanding and supportive of any of it and they thought I was just being a drama queen when I explained what to do when I have an attack. Their attitude was 'just take the blue inhaler, whats the issue?' and this has sort of stuck with me ever since. I don't like asking for help and sometimes I put myself in a huge amount of danger by not seeking it. My closest friend at University had to see his dad die in the back of an ambulance a few years ago and he nearly saw the same thing with me which made him go off the rails a little. I blame myself for all of this sort of thing - the awkwardness and the upset I cause when I have an attack. I have a huge guilt complex about it all.
In addition to that I have had doctors in the past who have pretty much accused me of faking symptoms...either because i'm really wheezy but my saturation's aren't down or sometimes even my saturation's are awful and I'm not wheezy. No attack is ever the same which is the whole nature of the condition - they just come on so fast that everyone panics. Of course, now that I have been diagnosed as a Type 2 Brittle Asthmatic they are having to swallow humble pie but because of them and their pure ignorance, in every day life, if someone questions me or second guesses me I immediately think I'm wrong even when I know I'm not. The majority of the doctors and nurses have always treated me fantastically but it only takes one comment from someone to damage you and the way you think.
I guess I am just trying to reach out to people who are or have gone through the same stuff as me. I live in the middle of the Shropshire countryside and I am the only brittle asthmatic in a 100 mile radius and feel like I am quite alone. My family are supportive but I've never had anyone who truly understands what its like to 1) have an attack and 2) understand the effects of the attack. It would be nice to know that there are people out there who are like me, and that I'm not just an alien in an obscure and judging world. Would be great to hear from anyone.
Thanks for taking the time for reading,
Fern
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ferny_123
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I live on the borders of Staffs/Shropshire/West Mids, and my brittle asthma scares me, although I haven't been hospitalised recently, always top of my thoughts is where is my blue inhaler. I am under Leicester hospital and heartlands hospital, and although they are doing their best, no one knows (yet) the best treatment. So although this email is not giving any advice, it might give you some comfort knowing "you are not alone"
Wow, another brittle asthmatic! And one who goes to Heartlands too! I have just been transferred there from London and am due to see Dr Monsur next Tuesday. I am looking forward to the day they find a cure! Although Xolair really has made a massive difference to my life so I am quite positive at the moment
I have been with him for about seven years (but only seen him once) and I am due my yearly review soon.
Hi ferny 123 I used to think I was a freak of nature till I joined the forums on here !! I have brittle asthma and I've been asthmatic all my life I'm 64. I have many allergies and they really make my life a misery. I also have fibro,arthritis , and a piturity gland tumour amongst other things. I really feel for you and can understand what you have been through. I always feel I'm a problem to everyone and going anywhere is nightmare. You are young and have your whole life in front of you and I hope things get better for you now. Take care xx
Hi Ferny I have asthma for over 20 years I know exactly where you are coming from I developed asthma when I was expecting my first baby I coughed the whole nine months of my pregnancy it was only when I went to an asthma specialist that I started getting things sorted on my first appointment he said to me I may have other conditions that could be aggravating it he was so right had a cyst on thyroid chronic sinusitis bronchiectasis and later went on to develop Epilepsy . On my first appointment he brought me in for bronchoscopy and spirometry tests blood tests etc he gave me advise which I wish I had listened to 1. Take personal responsibility for your own health 2 be able to say no very important 3 pace yourself 4 don't be a fool for anybody it's only in the last year that I took his advice on board and thank God I have improved but never take it for granted hope this helps you xx
Oh poor you. I'm afraid I am not a brittle asthmatic, it is only when I am already mid exacerbation that the slightest thing will set me off and actually the doctor has me started on an antihistamine for that which is helping.
I am also a lot older than you but I was 26 when I had my major attack. I thought I was dying. It has a lasting effect on someone, an experience like that, so I can only imagine if you repeated that experience several times.
You are not alone, there are lots of us who understand how it feels to have that elephant on your chest and how frustrating and upsetting it is that other people don't seem to get it, think that you are making a fuss. I even get to the point when I wonder if I am being a hypochondriac, inventing my symptoms, and then I can get very depressed. It can change you, this illness. I will never be thinking around the middle again after so many courses of steroids, but they've made me well again and I have to accept that.
There is a Facebook page called sims Asthma with people from all over the world. If no one near is like you, you may find a friend and ally online, but in the meantime, big virtual hugs.
How nice of you to leave such a lovely reply. I've had more support on this page in one day than I've had in 3 years! I'm so relieved. It's been a very lonely time for me.
At first my attacks terrified me but as they've gone on I've had to learn to panic and care less because it's the panic that will kill me if I let the fear take hold. I've been in some really awful situations where ambulances have got stuck on our countryside drive and I've gone into cardiac arrest in front of my neighbours and family and once my friends saw this as well. When paramedics are screaming at each other in panic and begging for assistance on the phone to the control room and then realising that help is not coming, I've had to really get my brain into gear and tell myself that if I don't start to take control of this then I won't be waking up. And since this happened something in my head switched and I've learned to be a lot braver and almost non responsive to it now. I think it's because of this that I feel so numb to it all - outsiders would be horrified that id been in ITU or that I'd been airlifted into hospital and nearly died. But to me it's sort of become routine now. I don't like my family coming to see me in hospital either and many times I have pushed my partner of 5 years away. I hate them seeing me like that and I will forever feel guilty. I have a complex that everything is always my fault, like you said about the hypercondriach thing - I have a devil in my ear saying 'why would you do this to your family' you're being selfish - as if it's something we can control when in actual fact we can't at all. It's a very big dilemma really and I'm glad I'm not the only one to have experienced it!
I can completely sympathise with the feeling that nobody understands and am still traumatised by my last hospital admission when the crash cart came.i dread having Abg tests and sadly they have become too frequent for my liking. I hate them they hurt me so much. It worries me that people think a quick puff of ventolin is all you need to be fine again. If only it was that easy. I think that's why people are dismissive of your feelings and think we over exaggerate things. Asthma is a disease which varies so greatly in severity that I think if you're anything other than very mild people don't understand x
My veins are so bad now that they have to get an ultra sound to find my arteries. No one can ever canulate me either apart from anaesthetists so I completely understand the ABG fear. Before I had asthma I was never afraid of needles and now they terrify me. Being prodded and poked like a sewing cushion is not nice and when you can't breathe and everyone is tying you down and injecting you with things you literally just want to scream but you can't. The greatest fear I have though is THE TUBE. Whenever they even mention the word intubation I think my heart stops beating. Puts the fear of god in me. Being extubated is the worst thing I have ever experienced in my life and would not wish it on anyone. For people who are ignorant to the condition should experience this and the long rehabilitation afterwards to understand what asthmatics can go through. But you're right, there is such a broad range of 'asthma' that a lot of people are not educated enough to understand.
Hi Fern, you are definitely not alone. I have had asthma all my life and it's rotten! My son is a brittle asthma like yourself and on maximum medication plus Xolair. Xolair really helped him. He is also at university where there is a fairly good support network and he copes well. I hope things improve for you. xxx
I don't have brittle asthma. Although I do have a hospital consultant. I was referred about a year and a half ago after I ended up in A&E twice within a week and a half. The thing is though that although all my symptoms and everything say asthma. When the consultant and nurses do the tests like the spirometer I show up as someone who doesn't have asthma. I am lucky the the doctors and nurses are listening to me and not trying to tell me that just because I don't fit the norm that I'm making it up or something.
I'm fortunate to have well controlled asthma, however I had a very bad time 9 years ago when I was admitted to hospital twice in 13 days - it turned out I had pneumonia. The scariest bit was the first time I went in and they'd filled me full of drugs and my lungs weren't improving at all. I had to heave for every breath and felt like I'd huge weight on my chest and hadn't slept in 36 hours at that point. I was told if I didn't improve within an hour, they would put me under a general anaesthetic and put me on a ventilator. Fortunately, with 15 minutes to go the last set of meds kicked in.
I have two things to say that I hope may help you. I strongly recommend you get some counselling to help you deal with all the trauma you've been through. I think you may have some PTSD like symptoms. I saw a counsellor about a year after the hospital admission and it helped me feel like I wasn't 'anchored' to it any more. What you've been through takes a lot of dealing with and doing so will help you feel better and more in control. It sounds like you've found an effective way to disassociate yourself from fear - but that's like keeping the fear in a jar, it's still there and I think you may need to get rid of it altogether.
Second thing, your family and your partner love you and want to be there to support you however low you are. It will help them to see you and do what they can for you. Having my family and my best friend come to visit me in hospital helped me so much. Again, some counselling might help you see you as worthy of their support and affection. You've been badly treated by some medics and people who didn't understand your condition and your fear, so it will be hard for you to trust and also to see yourself as deserving of the right medical and emotional support. I think you have the strength to get mentally and emotionally well enough to manage your physical condition more effectively - you just need to find out who you can trust to help you get there.
I've had asthma all of my life and I'm now 54 and even my own family don't even understand the severity of it . I coped with maybe 30 puffs of Ventolin a day!! and eventually was referred to specialist respiratory nurse and into respiratory consultant at 50. After several tests they found Aspergillus sensitivity only 4 years ago and I was put onto permanent steroids for 2 years and have been on them on and off most of my life,so have the thinnest skin of a 100 yr old. My Ige was 1845 when normal is below 100 hence they got me onto xolair 600mg 4 injections every two weeks. I'm pleased to hear yours is better from this as I'm convinced mine is worse, but respiratory nurse plays the bribery statement of think how you'd be without it. 2 years on it & still taking Ventolin about 6 times day, Symbicort 400/12 and they have introduced Seebri which is for COPD which I don't have. I've never been in hospital as I'm a nurse of 30 years and manage myself with nebuliser when it's bad. However the last few months I've started coughing up blood and after telling the respiratory nurse was told not to worry it may be capillaries burst. I got chest X ray from my GP, a CT scan arranged for Thursday and respiratory consultant played hell saying I should of told them . Wow, I so did and jack shit was done. Anyway now diagnosed with pneumonia on top of osteoarthritis which is killing me and everyone seems to have forgotten I was treated for 4 months with antifungals which was itraconazole and the level kept rising .
All I'll say is you're young , do all your own research on drugs side effects , anticholinergic drugs such as Seebri & older antihistamines
I tend to contact by email as I worked in the NHS and know emails but was kind of told off. I'm unsure if xolair has helped or made mine worse . I go along with it but in general it's so much worse that it was.
Your not alone brittle , unstable they are all the same but I've resorted to buying Ventolin tablets over the Internet which helps as they are no longer used in the UK. I wish I could be prescribed aminophylline or theophylline but it's not often used and had anticholinergic properties.
I hope you do feel the benefits but your not alone at all. Hang on in there, but gain knowledge which is empowering so you know what you are talking , interaction and positive and negative effects of medication
Thanks for your message. I can really relate to what you're saying about the health professionals. I've had the same problems. I am currently on aminophylline tablets as well as spiriva (which is for COPD), fostair, 45mg prednisolone, montelukast and other allergy related tablets. The aminophylline has made a huge difference to me but it has nearly killed me twice. I have had two chronic seizures after being put on an infusion in hospital and them not taking my levels before doing it. So that was awful. I am worried about the amount of drugs I'm on because I'm still so young but it keeps me alive which is all that matters! I too am on the same xolair treatment you are on - the 4 injections every two weeks - my IGE was through the roof! But it's certainly helped me, I'm sorry it hasn't helped you. Sometimes you have to take control of your own condition because the health 'professionals' let you down. I hope you will find a way to manage it better in the future!
I too am having xolair injections after several life threatening episodes . One of these was at a friends wedding and the reception ended up being held in intensive care . Some people would do anything to upstage the bride . Like you I have met with varying attitudes ranging from so what to panic and wanting to call ambulances at the slightest sign of breathlessness . I'm 57 now and still have problems accepting my limitations . It was very scary being faced with my own mortality and it did affect me emotionally but you can live a very productive life within your limitations . Attitude makes an enormous difference and I mean your attitude and not anyone else's . You can't change how others think or act but you can change the way you deal with it . This applies in any walk of life . I live in Wales and thanks to xolair I can enjoy the things that were previously out of the question . I have CATS , I can go into pet shops and my horse mad granddaughter lives with me with no side effects for me lol . Don't feel isolated , I'm here for a chat anytime
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