Catastrophic brittle asthma

[Baffledandbewildered]

I have suffered with asthma for years no biggie. Since the beginning of December I have been under the,weather and on and off antibiotic and steroids. A couple of weeks ago I was just sitting chatting when I started to feel feel VERY hot then I knew I needed an ambulance ! Strange feeling knew I was dying told husband I loved him and then nothing . I woke up a day later in intensive care have been interbated at home! Apparently it took over 2 hours to get me breathing and my heart stopped. I was full of carbon dioxide naturally made. WHAT THE HELL DO I DO NOW???? To date doctors have no idea what caused the attack and say it will probably happen again. Not sure what I am asking but has anyone else been in this situation. I now have an epipen, alarm button and a very scared family. Can anyone hold my hand and tell me what is likely to happen next????????

a gentle bump for you. I hope that someone here can help you.
{{{hugs}}}

Asthma is such a difficult condition to manage, have you looked on the Asthma UK website? They have a great forum with many experienced asthma patients..

another bump.

Hi there
I suffer with asthma but have not been in your situation, though I was rushed to hospital a few times as a child.

I too have been suffering for a few months - I wonder if it's the changes in the weather we've had?

Have you had any form of counselling offered to you by the hospital or can you ask your GP about this?

Also, and I have no idea how effective this would be in asthma as severe as yours, but have you looked into any breathing techniques? I've been looking at Buteyko myself as some people can find less need for their reliever inhaler.

I'm sorry if this post isn't helpful, but hopefully it will at least bump this for you again

And it's kept me busy while I'm up at 3am with my asthma!!

Baffled - how terrifying for you all and you will still be some shock. Have a look at Jill McGowan's website on Buteyko breathing. I attending a week's course given by her several years ago (a couple of hours a night for 4 nights I think it was). She was very ill from suffering from Brittle Asthma until she started Buteyko.

She is very, very approachable. You could phone her up and ask her for a recommendation of a practitioner near you. Even just talking to her I think will make you feel better as she knows what you are going through just now. McGowan Buteyko method

oops www.buteykoairways.com/jill.html

Scary stuff

What meds are you on now?

That sounds so scary, i've been suffering for months now and my doctors now give me antibiotics and steroids to keep at home so that I don't have to go out if my peak flow goes low.

Do you take anything other than your inhalers? I'm on salbutamol, seretide, uniphyllin and montelakust and mine is still not very well controlled, have they sent you to a specialist? Do you think there was a trigger when you had your attack?

Hi everyone thanks for all the replys . My meds are montelukas uniphylin Symbicort terbulataine salbutamol diltizam prednisolone And another inhaler I can't remember the name of it . I can't have antibiotic at the moment as I'm allergic to so many! Now I've got an epi pen . Been to the hospital today and discovered that my oxygen levels are low and my carbon dioxide level is far too high , so now have magnesium injections again and got to go back later in the week. To date they are still allergy test my blood as they can't test me in case it happens again! I've been given an alarm button like old people have to press if I feel the symptoms come on as I only got about a minutes max warning something was wrong. I am defiantly going to look into this breathing technique as at the moment I've been told this is life threatening with no real cure.....not good make you very nervy!

Baffled - it was very serious what happened however some doctors are very cack-handed aren't they? They are still trying to find out why this has happened and get it under control so I would say it's very bad "bedside manner" skills to scare you by telling you there is no cure etc.

Jill McGowan (for one) cured herself and I'm sure there are many, many more however because drug companies aren't involved then we hear very little about it. Have you read the recent asthma thread on Mumsnet where mumsnetters asked lots of questions to an asthma specialist? Sounds like several of the contributers have their asthma under control via non drug methods. Unfortunately the asthma doctor has not replied to any questions yet - but keep watching.

Have you managed to contact Jill yet? I last called her several years ago just to ask about a change of medication. She was so helpful and is a very genuine person.

have you seen a immunologist and ruled out any allergy factor?

singing (once u can breathe easily) is very good lung exercise btw!

Does low oxygen level mean copd? My FIL was told he has copd based on low oxygen level.