New to community and bad asthma attacks

[Sandiehmartin]

Hi, I have just joined so wanted to introduce myself and also hoping you can help. I got diagnosed when I was 34 by my immunologist. I have been having problems throughout my life but never got diagnosed before. My asthma has generally been related to allergies as I have anaphylaxis and am also allergic to sulphites. I also have an auto-immune condition and vestibular migraine so I find all my symptoms get confused sometimes. On Monday night, after a netball match, I had my first big asthma attack and was scared. I managed to control it just as we were ready to go to A&E. I thought everything was getting better until today. I can't bend down or move without getting breathless, my chest is painful and I am really sleep. I have just seen the asthma nurse and she said to take 8 steroids for 3 days, has upped the strength of my inhaler, and do nothing for 2 days but rest. Not easy when you have 3 children! She said there was inflammation in my chest, and the breath was struggling to get through? She also said not to drive and if it gets worse to ring A&E straight away and if it doesn't get better by Monday, to see the GP. I would like to know:

1) is there anything I can do to speed everything up? I feel rotten and want to get better to look after my kids

2) is there any way of preventing this?

3) is it likely I will have to give up my netball?

4) How often do these type of attacks occur?

Thanks for any help or advise you can give me

Sandie

[Emily-G]

Hi

Sulphites are a trigger for me too and I carry adrenaline for anaphylaxis . Cutting out sulphites (where I can) has really helped me have less attacks.

I have 4 kids and it is hard to rest up when my asthma nurse says I should, but not resting makes recovery slower for me. I'm not sure how to speed up recovery.

For me I do less exercise now than I used to but I know some asthmatics who are very sporty.

I take (feels to me like) quite a lot of meds. And I am very careful about always carrying reliever, rescue steroids and adrenalin. I also have a portable nebuliser which I only really use for bad sulphite triggered attacks. When I am well it can feel like I am being over cautious but if my asthma flares it is good to be prepared.

I am very very careful about what I eat, specially if I am eating out.

Sorry that I can't answer all your questions. Hope that you feel better soon

Emily xxx

[Sandiehmartin in reply to Emily-G]

Thank you so much for replying to me. That really helps sounds like we are in a very similar situation. Where do you find your information about sulphites? I am under an immunologist but am struggling to understand what a sulphite is and isn't xx

[Emily-G in reply to Sandiehmartin]

Hiya

It does sound like our asthma is very similar 😊

It is really hard to get good information. I google but I'm not sure what info is good. I eat as little processed food as I can. I avoid anything with vinegar and dried fruit. Some food is naturally high in sulfites ( I have a nut allergy tho sometimes I wonder if it is really just to the sulfites in peanuts)

Sadly wine is a problem for me , and I have to be careful with mixer drinks.

The list goes on and on.

I was having random asthma attacks with a swelling throat and hives. It took ages to work out what the trigger was. Now if I get even a tiny tingley feeling from food I leave it.

How badly I react seems to depend on how run down I am.

I ve had blood tests for inhaled allergens but no skin test, the consultant said my skin was likely to react to anything so no point (I have loads of allergic rash all the time)

I am on relvar ellipta, salbutamol, omeprazole, fexofenadine, I also always have pred, adrenalin and salbutamol nebules for flare ups

Good luck and I hope you find something that helps

Emily xxx

[puffinferg in reply to Sandiehmartin]

Hey,

I am new to this forum. I am not new to asthma but I am new to my new severe asthma! I thought I'd write as my asthma nurse specialist at the hospital believes I have a sulphite allergy/intolerance. I was referred to the asthma dietitians who have put me on a total sulphite exclusion diet. This has been going for 6 months and I am not allowed any sulphites at all. When my asthma is better controlled they will let gradually re-introduce the lower levels of sulphites-6 months and counting 😉

It has been a tricky few months anyway but doubly confusing when it came to sulphites and all the different information that was out there. My nurse suggested following the advice of this Canadian professor who has done lots of evidence based research on sulphites. I found the internet so confusing as to what I could eat and my dieticians, while lovely, also give me conflicting advice. So I decided only to follow this recommendation and perhaps the links she posts and ignore most other advice! For me it only way to get through all the conflicting information out there. And because it's all evidence based research my husband was also ok about following it because it has been restrictive for him too.

Her name is Janice Joneja if you want to google her. And her website is foodsmatter.com/allergy_int...

I know she writes books and my asthma nurse is very complimentary about all the work she has done on all intolerances. She has been to her talks too. I have only read her website. I hope this helps you too.

On exercise! I currently have not been able to do anything for quite a while but I am convinced that it was all the exercise I used to do (up until 9 months ago ) that kept my asthma under control all my life. I ran, swam, cycled, sailed and did yoga intermittently. But as I don't do anything now I'm not sure if I'm an good example for exercise and asthma or not! I am about to restart yoga and hope to go on a little jog on a good day very soon! But then it all depends on how my lungs behave

I hope the last few days have been ok-you sounded like you were pretty rough.

Take care

[ros15]

Hi Sandie. I am sorry to hear that you are unwell. I have had asthma since I was 4 so have had it for over 50 years now. Just a few comments which may or may not help. Asthma is a very variable condition so every asthmatic will experience the disease differently. Understanding your own asthma condition will in the long run make life easier for you. Get as much help as you can from your GP and asthma nurse - make sure you have an asthma action plan and record your peak flow readings daily so that you can see any patterns that occur - this will help you understand your asthma better and will therefore help you to control your asthma better. Make sure you always take your medication even when you feel well - this will help you stay on top of the condition and will make it easier for you to exercise. I have always found that the fitter I am the better my asthma is so when you are better do get back to the netball. Asthma attacks are triggered by something (allergies, viruses, etc) although it is not always easy to know what the trigger has been. In reply to your specific questions:

1. The more you can look after yourself the quicker your recovery will be and then you can get back to looking after your children. Try and get everyone you can around you to help you. I don't know how old your children are but encourage them to help you as much as you can.

2. The more you understand your own asthma the better you will get at avoiding what triggers your asthma.

3. The better you control your asthma the more likely it is that you won't have to give up exercise - you may even be able to exercise more.

4. Attacks happen because they are triggered by something - again the more you understand about your asthma the more likely it is that you can avoid triggers and thus avoid asthma attacks.

There are no instant answers (regrettably) but with the help of your GP and asthma nurse you will be able to get on top of your condition and stay well. There are lots of different medications and combinations of medication to control asthma but it can take time to get the right combination so there may be a degree of trial and error. Finally, don't put up with your asthma being poorly controlled - always go back to your GP or asthma or more help. Good luck.

[Sandiehmartin in reply to ros15]

This is amazing. Thank you so much for taking the time to help and reply so comprehensively xx

[Tugun]

Hi Sandi,

Being as breathless as you are should be treated as quickly as your anaphylaxis. Steroids may be the answer but may not be. Without worrying too much as everything should be fine, it is just common sense that you should see a doctor before Monday. You sound too sick to go to the local doctor, then to do blood tests/x-rays and then to the chemist. So my suggestion is:-

Get someone to look after the children.

Go to A & E. either by ambulance or if not by ambulance then get someone to drive you and tell the A&E immediately when you arrive that you have trouble breathing. Don't wait until Monday. I note you were not given antibiotics - you may need them. You need to check if you have pneumonia or another severe chest infection. The nurse was not able to do blood tests etc which you may need for a full diagnosis. At the A&E they should have everything there to do tests and help with a quick diagnosis. Bring a jumper, they are usually cold places.