Severe asthma help: Hi, just wondering... - Asthma Community ...

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Severe asthma help

sophieemmax profile image
21 Replies

Hi, just wondering if anyone out there can help or even sympathize! I was diagnosed with asthma when i was about 10 but it was just very mild with only the blue/brown inhalers and all was fine. There was the occasional sharp chest pains but nothing too bad. About a year ago i was having an asthma attack and drove myself to hospital and promptly collapsed. I was in ICU for three days and after that i was weak and lethargic and never really recovered. Im currently under lung health and they have been working to control my asthma, i am on all the inhalers, montelukast, avimast, fexofenadine, prednisolone,and a new strange inhaler for allergies? It is so severe i can't sleep well and I'm either waking up every 20 mins or i can't sleep to begin with, so much I end up exhausted permanently and it is affecting my college performance. They want me to try the allergy injections but I'm dubious that they'll work because I'm already on so many allergy meds, I'm coming to the end of my tether and i can't walk very far without severe chest pains, and i constantly have a dull aching feeling in my chest :( I have had 8 cycles of antibiotics in 2016 due to constant chest infections as well!

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21 Replies
spookylou profile image
spookylou

I have xolair jabs if that's what you mean its for allergies. I know what you mean with the meds as I take all sorts of inhalers and pills, but its about getting your treatment right and your quality of life for you. I struggle with sleep probably due to meds, but also symptoms as well. You need to learn to pace yourself and not overdo, I sometimes struggle going upstairs on bad days and walking in general. If having that many antibiotics maybe you should be considered for the other new med due out next year which may help to stop all the antibiotics. Take Care.

SteddyEddy profile image
SteddyEddy

Hi, poor you have you been taking probiotic tablets after each course of antibiotics?? I'm not taking about the little drinks you get from the supermarket, I always use BioCare Micro-FloraGuard for a month after a course of antibiotics before I did that I would have chest infections all the time and be very run down. I felt as thou I was spiralling downwards getting worse and worse and the doctors kept giving me more drugs. It took a few weeks but the live probiotics tablets made a world of difference and I don't seem as sensitive to my allergies anymore. Good luck.

angievere profile image
angievere

If it's Xolair GO FOR IT. Turned my son's life around. Doesn't work for everyone but definitely worth a try. Best wishes.

O-T- profile image
O-T-

Hi Sophie, are there particular times when your symptoms are less? I had bad periods in my 20s but went through a period from about age 30 to 36 with a fear of everything seeming to be a trigger however unlikely. Waking freqently and finding walking up the road like wading in water. I often had an abrased feeling in my lungs along with a 'furry' sort of irritation as though i'd inhaled loads of carpet fibres. My peak flow would be down about 40%, 390ish when usually 600ish and I couldn't think straight or talk easily. I only bothered going to doctors a few times as all they did was check I was using enough Symbicort, and once I was told I had the peak flow of someone in his 70s! Generally my symptoms would improve after being out for a while so the doc never saw me at my worst. What I mean to say is that I recognise how confusing and frightening the condition can be and how demoralising (to put it mildly). I have now been almost three years with hardly any symptoms except for the occasional flare-up and hardly need inhalers. In retrospect I know that I was suffering mainly from infamed insides that were over-sensitised to irritants, I lived in a bad environment and never had enough time in good air (I reckon it takes months to repair). I couldn't think clearly enough to make beneficial changes for myself but eventually I moved into a better place and became a dust-obsessive and got so much better. I would say that I can't fully account for my recovery but recently (two more less good moves this year) my situation has seen the need again for symbicort, so I know I didn't 'grow out of it'!

Sorry for the waffle, I hope you can find some consolation in my view that when the cause and triggers seem so numerous and hard to be sure of, well that's sensitivity and it needs time, insight (meds & help) and often change to allow healing. Incidentally I believe, from a layman's perspective, in the inflammation/anti-inflammation bodily processes being relevant and alterable with diet/supps and other non-drug routes. I also feel somewhat wary of antibiotics after developing allergies to the last two I was on (for a sinus infection- over-prescribed I think and the side effects were worse than the illness that time!) and agree that probiotics are a good idea in theory and also I guess there could be some credibility to the gut-lung type holisticism as I have suspected correlations with my own symptoms. For what it's worth I'm taking Bio-Kult Candea and Higher Nature Pro-bio Daily, the former seems to improve my digestion.

I was waffling again, I do hope your condition improves soon, please don't push yourself, it's important to find our own way with the right kind of help and support. cheers, ollie.

healthwish profile image
healthwish

What is xolair. Any risks or side effects from it? How do i get i

Mark-f profile image
Mark-f in reply to healthwish

A monoclonal antibody in the form of a 4 weekly injection for people with allergic asthma !

healthwish profile image
healthwish in reply to Mark-f

Thank u

QuietChest profile image
QuietChest

Sorry you are having such a rotten time. like you I was a Mike asthmatic in childhood then it hit with a wham in my 10's. It's rotten and takes over your whole life.

If your team think the injections are with a try go for it it can't be any worse?

Hi I have trouble sleeping when I take steroids and only sleep 3hrs a night. I have multiple allergies as well. I will look into the injections 👍 I have brittle asthma and have had it all my life I'm now 64 . I hate the pain and heavy dull feeling in my lungs as well and I get infection every 4-6 weeks. I hope you get the help you need and I would try the injections. You are young and I feel for you and send love and best wishes 💐

O-T- profile image
O-T-

Don't believe the scammer who claims to have been cured in 11 days of ALS, Lou Gehrig's Disease is a heartbreaking condition that Johns Hopkins are reseaching treatments for! An amazing story of a famous sufferer who has a website is Jason Becker, the rock guitarist whose career was cut short around age 20, he is now 47 and worth checking out.

Hello, I am so sorry to hear that your Asthma has deteriorated. I can empathise with you completely as I have a similar experience. If you are on all these meds its obviously for a good reason. If they want you to try the new Injection for Allergies - personally I would jump at the chance. I have read very good reviews and feel it is a better option then just treating the nasty symptoms. I have been going to London for 5 years now to Specialists and keep wanting to be put on this new Injection but there is very strict criteria. The fact that they are considering you is good. What have you got to loose. If it works you may not need half the medications that you are currently on. As I am an Allergic Asthmatic I definitely would say to try that injection - its the only drug since steroids in the 60's. With me, I get pains all over my body from the Steroid Inhaler the Doctors do not believe me. The Asthma Nurse at my surgery is the only one. Would you mind telling me the name of the new Allergy Inhaler that you are on? The very best of luck to you. Hope you get things sorted.

sophieemmax profile image
sophieemmax in reply to frustratedasmathic

Spiriva Respimat? tiotropium its good during the day :)

Mark-f profile image
Mark-f

Hi ..... sorry to here your struggling, I can sympathise!!

My asthma is refractory, and I also have sinus issues and bronciatasis.....

I'm on every med going at maximal dosages including 25mg of pred daily as a maintenance, I've recently started xolair injections on a 16 week trial.....

I find sleeping enervated helps my night time symptoms also staying well hydrated !!!

Good luck with getting the xolair

P.s..... tool me 18 months to get the green light to start treatment

angievere profile image
angievere in reply to Mark-f

How is the Xolair going Mark? Any improvement?

Mark-f profile image
Mark-f in reply to angievere

Hi..... Ok, a few side affects after the 1st jab, I'm 6 weeks in a little or no side affects after my 2nd jab. I'm told it can take 12-16 weeks to start noticing any positive affects. I've got a follow up app with my respitory team after the 16 week trial, I assume to asses if successful for me and weather I can carry on the treatment !!

I'm hoping so and I can finaly ditch those preds after 2 years on continuous 25 mg daily

angievere profile image
angievere in reply to Mark-f

I think my son noticed an improvement after third month. He's still on Aminophylline, Singulair, Seretide, ventolin and meds for rhinitis. Occasional steroids, nothing like before though.

I do hope things improve for you.

sophieemmax profile image
sophieemmax in reply to Mark-f

Its taking me 2 months, my specialist wanted me on ASAP

angievere profile image
angievere in reply to sophieemmax

Honestly, try it. xx

paulamarie99 profile image
paulamarie99

I sympathise with you.....having asthma sucks! Diagnosed at 17, but lots worse in my 40's....on daily maintenance prednisone fostair, ventolin, monteloukast, polycontin, and another inhaler cant recall name sorry. My max peek flow is 240, very often 200 and at the moment 150....trying to stay out of hospital but struggling. I tried xolair injections unfortunately they didn't work for me, made me ill so I had to stop them, id read such good reports id say if your offered them take them! Hoping you all feel better soon x

O-T- profile image
O-T-

Ah, the post from the spammer has been removed, thanks.

Now, however, my replies deriding charlatan priests look rather incongruous!

Kyrian profile image
Kyrian

Sounds awful - hope you get it under control soon.

I have a filter fan with an UV light on it in my bedroom at night which really helped me out when I first got it (my night time symptoms were grim at that time) as it took the allergens out of the air.

I take vitamin C along with allergy meds and also a B complex to help the immune system along on bad days.

For sleeping I make sure no caffeine for 6 hours before bed, lots of water and melotonin capsules for the point where I am mentally losing the place due to bad sleep. Check with a GP to make sure its ok with your meds though

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