Asthma UK community forum
10,658 members17,113 posts

Any advice please

Hey I'm looking for any advice on what has worked for people controlling their asthma. Mines is poorly controlled as things like periods and weather change can set it off as well as getting upset or stressed and lack of sleep. Also high allergy markers. Im on home oxygen, nebulisers, steroids everyday inhalers and theophylline everyday. My asthma still isnt controlled. I have so many attacks a day (between 3 to 11) it can get very bad. My friend mentioned the cannabis oils. I'm very reluctant as I'm just wary introducing anything that could make my asthma any worse. Any help on anything that has worked for people or people you know would be amazing. I have 3 kids and I'm 24 I don't want to be like this I want to be the best mum I can be but it's hard when I can barely move without having an asthma attack

27 Replies
oldestnewest

Hi, that sounds really difficult especially with having children to look after!

I wondered if you attend a specialist tertiary clinic for asthma? Or just your local hospital respiratory clinic? And has anyone mentioned one of the injectable treatments like Xolair or Nucala? If you have allergies setting you off Xolair may help, but you would need to be assessed by a specialist asthma clinic as they are the ones who generally provide these drugs.

I would also suggest calling the Asthma UK nurses who are very helpful and can make suggestions including referrals if you need them.

Reply

I'm waiting to hear if the difficult asthma clinic in Leicester will take me. They had mentioned the xoliar to me but unfortunately it never got anywhere. I have a rocket team nurse who comes out I may try mention it to them again and see as I would take any help. I was at the hospital two weeks ago and the Dr told me there wasn't anything he could do for me as I'm on everything he would try see if the leicester clinic would take me on. But he said it could take weeks or months. I've been like this since I was 11 always in and out hospital unfortunately I didn't outgrow mine the way they said I would and it's now getting harder day to day. I have a disabled daughter who is 4 I have a 3 year old and and 8year old. Resting and not moving isn't really an option. I really appreciate your advice. I'm just at a stage where Im not bouncing back from my attacks like I used to. Even getting dressed gets me breathless sometimes. Every winter I'm in hospital summer is normally good for me but the heat has been so much I haven't been able to leave the house much so I know I won't have much chance against the winter when it comes. Again I really appreciate it nice to speak to real people not just Dr's who have read about it at university because asthma is different for everyone

Reply

Hi, glad it was helpful! I would definitely chase up with the nurse or someone about Leicester as.sometimes the admin is not ideal. I was referred to a tertiary clinic in London and had to chase them as i knew they had received the referral and accepted it.but I didn't get anything through about an actual appointment. Once I found a number and called to explain it was sorted and just a few weeks for the appointment.

Did anyone actually test for.Xolair or just mention it but not follow up? Leicester should test for everything once you get there, so even if Xolair isn't suitable there are others that you may be able to try.

Hope this helps as all sounds very difficult :( but like you say it can be helpful to talk to other people with asthma as the drs often don't get what the reality is like day to day and how it affects your life.

Reply

They just mentioned it they never done any tests etc. I hope leicester will help as I said I will try anything im very open minded when it comes to this now because i just can't keep doing this I miss doing normal things. I wanted to go see a comedian but it's out of the question. Even day trips away with the kids I can't because I need my nebuliser etc.

Thank you so much for your time and advice

Reply

Crossed fingers you can get Leicester sorted! Once you nudge them a bit or someone else does like GP or nurse it can speed things up!

Don't know if it would help or be possible for you but also some people have portable battery operated nebulisers, which might mean you can get out a bit more if you can get hold of one? Try searching on here or Lidl I think has one. Realise that may not help if you need the oxygen too.

Reply

I have a portable oxygen tank that I can run my nebulisers off but the weight when walking as its like in a backpack sort of thing is a bit much when you can't breathe and it only goes up to 6 i need to run the nebs off at number 8 on the dial thing if you know what I mean by that so it doesn't work amazing. But I will look at one of the battery ones as that would actually be so useful for being out and about.

Yeah my mum says it's just about keeping on at them etc till they help. Which I try to but my daughter is disabled also she has chromosome deletion syndrome so I have enough calling people for her all the time I often forget to chase things up for myself

Reply

I’m under the Leicester difficult asthma clinic :) they’re a really great clinic and very thorough in terms of their investigations I think.

But... it’s also a massively overbooked clinic so it can be a little slow to get into the system - so might well be worth a chase up. Once you’re in the system though things do tend to run a bit faster I’ve found, it’s just getting there! 😂

Reply

Thank you for reading my post.

That's made me feel a bit better as I don't want to get accepted and feel like it was a wait for nothing.

I think I'll chase it up and see what is being said so I know where I stand as it's frustrating and I don't want to be pressuring or annoying anyone but it's daunting waiting to find things out.

Fingers crossed they will take me on soon. Again thank you so much

Reply

I was recently referred to Leicester and only had to wait 8 weeks for my initial appointment , so keep everything crossed , it may not be as long as you think xxx

Reply

Really that's not that long Its only been 4 weeks since they said.

Did you find your first appointment helpful? How did it go if you don't mind me asking just so I know roughly how they do things sorry for the questions you don't have to answer if it's to personal

Reply

No it’s fine , glad if it helps : It’s going ok : first appointment was with the specialist asthma nurse , my hospital had sent over all my test results they had done, so bloods, and basic breathing tests done at the clinic : then I saw the consultant 10days later : I think everyone is very different , but we have started on an agreed programme and extra tests and I’m in the middle of the assessment phase ...... I’m finding them a relaxed and supportive team, and am hoping as the causes become clearer , then a new treatment plan will emerge xxxxx

Reply

I like that they seem to be working with you instead of what Dr's have a habit of doing of making a plan that they assume that just works for everyone. I really like how they are doing it. I hope It works out for you i shall keep my fingers crossed for you thank you again for that sorry if it was personal just any advice really helps me xxx

Reply

Glad it eases your worries a little : I’ve learned patience is the key, asking lots of questions and sometimes accepting they don’t know sometimes xxxx but keeping lots of notes and records for myself has also helped xxx best wishes and hope your appointment comes through very soon ❤️

Reply

Hi missoriginals93

Sounds like you've been going through a really tough time, it might be worth having a chat with the Asthma UK nurse team - they can talk through your medications and give you some advice and support, you can contact them on 0300 222 5800 or via WhatsApp chat on 07378 606 728 (M-F, 9-5).

There's a whole section on our website about triggers that might be helpful: asthma.org.uk/advice/triggers/

Take care,

Dita

1 like
Reply

Thank you so much for that I shall call them and see what they say. Any help or advice is better than none

Thanks again for taking the time to read my post and the advice

Reply

You seem to me to be under huge amounts of stress. Everything here is good advice, but you are more than a medical issue. I see you are chasing up stuff for your daughter and of course mums always feel our kids are more important than we are. However, without the right support for you, you cannot do the best for her. You and your mum (who is probably very worried about you) and your GP may be able to work out how some of this stress can be reduced and how you can have the time and space to relax a bit. Stress makes asthma much worse so you need to do what you can as soon as you can. Good luck!

Reply

I know I'm stressed things aren't easy. Still learning everyday with my daughter. She's a happy soul bless her but she falls ill a lot with chest infections so then I end up unwell its like a bad circle. I really appreciate your advice I'm due down at my gp tomorrow so I'll see what they say I really appreciate it

Reply

I go to the Asthma Clinic in my surgery. My asthma had not been bad until this year when they changed my inhaler. My asthma is mild in comparison to so many other people. Hope you can get help.

Reply

My mums had the same problem with them changing her inhaler. Have you went back and said. Ah thank you so much. I received my letter yesterday. They're going to see me on December 17th not as soon as I hoped for but it's Better than nothing. I just need to make it to then and hope cold weather doesn't come x

Reply

Oh bless you. What a lot going on and you just a baby yourself. Surely they can fast track you I certainly would give my appointment up for you. Three children in the mix too. Honestly don't know what to say to you but fingers crossed you feel better soon, you should be enjoying your life with your children not stressing about your next breath. Ask every health professional you encounter for help, someone out there will!! Pulmonary rehab will come to your home and paediatric chest specialist should be there for your daughter to keep you both well. Let me know how you get on. Think I'm in shock this is 2018.😕

Reply

Thank you so much for your advice. I revieced my letter yesterday the Dr will see me in Leicester on the 17th of December. Its not as soon as I had hoped as you've read my asthma really bad atm but I have to stay positive it means there's a light at the end of this shitty tunnel for me. I really appreciate the advice it's so much better hearing from real people who have it. People just assume asthma is something you take an inhaler for and your okay. I don't remember the last time my inhalers really done anything for me. Atm it's just oxygen, nebs and steroids and theophylline. Although I do take my inhalers it doesn't feel like they work considering all of the above don't work either. People take for granted being able to walk places or play with their kids. I've never had that and that's all I want. Right now my asthma attacks are a lot more because I'm due on next week. Happen every month. Then when it dies down I have maybe 3 during the night and like 4/5 during the day. That's a good day atm but right now I'm dragging my tank about even for my bath just because everything is getting to me. Pulling my jeans up also sounds bad that's a struggle. I've been like this since I was 11 but I've only got worse as I got older. I had a good year then I took an abscess in my jaw. I have brittle bones bevause of my steroids and as they took the tooth out my jaw fractures. Since December I've had 27 courses of antibiotics. 6 where for my jaw as it was a bad infection the rest is just chest infections some have been doubled up. I had such a bad infection they did double doxycyclin so two a day for two weeks. I got better and that was almost 2months ago I haven't had one since but the fact it's just my asthma it makes it hard to control. I should really just be in a bubble. Sorry for the essay. Haha can tell I don't get out to speak to people much

Reply

OMG December that a long time away when you are in a desperate plight. Can you not be pushed forward in anyway. If you are having bad attacks call 999. You probably struggling because you are putting your children first and neglecting yourself but they need you and you must see to you or they may not have a mother of you dont. I can suggest lots of anti stress techniques for you but I'm worried about you and feel you must be a pest to get help. Somebody needs to step in and help you and your family.😕

Reply

I have so many attacks. I have a rocket team nurse he knows about it. But that's why I have two big cylinders of oxygen and a portable one. I'm going to see my go and ask if she can try push it forward I've messaged my rocket team nurse see if he could do a letter to explain to them

Reply

Glad you got appt sorted but that is a long way away!

I do wonder if because your cycle is so strongly linked to asthma flares, you could ask your current consultant to do a referral to someone for that (gynae or endocrinology I should think) in case they can help? I imagine Leicester might think of that and you could possibly get a head start. I know someone else on here was advised to ask for that referral by the Asthma UK nurses because thry had flares linked to cycle - you could maybe ask the nurses?

Am sure it's not the whole picture but may help a bit. Really feel for you as it sounds so hard even without being a mum!

Reply

They tried me on the pill so that I could stop the periods but what ever is in them really set me off bad so they just left me. I also got sterilised after my youngest when I was 22 so that I couldn't fall pregnant again also because of the hormones when your pregnant. I've wrote stuff down for leicester and I'll Continue to write stuff till my appointment that way I know what I want to say and things I think they may ask me thank you for your advice again really I appreciate it all anything is great

Reply

It’s definitely worth asking people to get in touch with the clinic if you’re really struggling (which it definitely sounds like you are!).

My first appointment with Leicester was a long wait initially but in the end it was brought forward as I kept having admissions

Reply

I thought my asthma was badly controlled but it sounds like your having a constant battle everyday, I have two small children so know how it can get in the way of doing simple activities with them like running round the park. If you havnt already you should push your doctor to send u for X-ray or ct scan to get a proper look into your lungs/chest. I have been back and forwards to my doctor and finally pushed them into sending me for X-ray as the more I’ve read online the more I’ve seen asthma can be controlled or they could be something else the mater triggering this breathlessness and that can be controlled if properly diagnosed hope u feel better soon x

Reply

You may also like...