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New asthma sufferer. Any advice?

30 Replies

Hi all, I've only had asthma for 6 months and would appreciate any advice at all. It's hard to find information that's useful and it seems everyone has different symptoms.

After 6 months of illness and severe coughing fits, I suffered a collapsed lung and spent a week in hospital. I was given seretide 250 and the specialist said she "thinks" I have asthma. That's the closest diagnosis I ever got. The 250 helped, but my breathing and coughing were still not under control, so now I'm on 500 twice a day. I don't get a lot of side effects, but I do get bad cramps since taking it, especially between the shoulder blades and in my feet. I still produce a lot of mucus too, which I'm constantly having to clear from my airways and throat.

Another problem I've developed is GERD. I was given ppi's to take for 3 months, which helped, but as soon as I stopped them, the acid returned with a vengeance.

At night I'm unable to breathe through my nose. It seems to be blocked, but dry. Also I often wake up gasping for air, as though I forgot to breathe. I also sometimes wake up breathing normally, yet still feeling like I'm completely out of oxygen.

I've no idea what's going on really and assume other people have the same symptoms? how do you cope?

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30 Replies
Minushabens profile image
Minushabens

Hi there

Sorry to hear about your difficulties. I'm just rushing out to work at the moment but one immediate thing that comes to mind is whether you have had sputum sampless taken? If your cough is very productive it might mean there are problems other than or in addition to asthma.

Others will chip in as well with their advice; apologies it's a bit brief!

in reply to Minushabens

Thanks and no need to apologise for using what little time you have to help someone. It's very appreciated.

No, I've never had sputum samples taken. I don't have a bad cough now, since taking seratide, but the mucus is still there and I usually have to bring it up "manually". I do cough every day, but not enough to burst another lung (touch wood). The doctor asked what colour the sputum is and when I say it's white/clear/frothy, they don't pursue it any further.

I get the feeling that not so much is known about asthma, which is why I was suspicious of the disgnosis. I was told that the emergency blue inhaler would bring instant relief, which it doesn't. After about 20 minutes though, I find that I can shift mucus from my airways much more easily.

Emmaleigh profile image
Emmaleigh

hi,

sorry to hear of your problems,

have you had allergy tests might help find out if anything specfic is blocking your nose.

I would also ask for a sleep study to check there isnt anything else causing you to be breathless when asleep.

in reply to Emmaleigh

Hi, no i haven't had any tests at all, aside from when my lung collapsed, they took blood, but never told me why. I asked about allergy's but the doctor said all my symptoms were asthma, as though asthma was the cause rather than the symptom.

MaggieHP profile image
MaggieHP

Right - GERD (or GORD as it is in the UK). At the top of the stomach there is a sphincter muscle which prevents acid from the stomach entering the oesophagus and irritating it. Sometimes that muscle is weakened or unable to do its job properly, so reflux of stomach contents occurs. PPIs (Proton Pump Inhibitors) work by reducing the amount of acid produced by the stomach. This is great while you are taking them, but if you come off them suddenly having been on them for a while (a month or more with me) the consequences can be very uncomfortable.

There are things you can do to help. 1). Be careful of what you eat. Certain foods do not help: caffeine (sorry), spicy foods, fatty foods, fried foods, mint, tomatoes, citrus fruits, are not good for sufferers of reflux, though inevitably there is a certain amount of variation from individual to individual. 2). Be careful of how much you eat. If the sphincter muscle isn't working properly then large helpings of food will put strain on it making it even harder for it to do its job. 3). Be careful of when you eat. Do not eat (or even drink much) three to four hours before you go to bed. Basically you need to go to bed on an empty stomach, the reason being that whilst you are upright gravity helps to keep down food in the stomach. That doesn't happen if you are lying down, so if your stomach still has food in it the chances are high that some will escape into the oesophagus. For a similar reason, try to avoid slouching, lying down, or even bending over for a good hour or more after you have eaten; all will put pressure on that sphincter muscle. 4). Raise the head end of your bed by about six inches. Don't use pillows, you'll slip off them during the night, you need to put blocks under the feet of the bed at the head end of the bed. This helps gravity to keep down any food still in your stomach. 5). If you are overweight, talk to your doctor about ways to help you lose some of it. Being overweight will also place strain on that sphincter muscle. 6). Gavison Advance helps with reflux. The liquid form is better than tablets, though I appreciate that carrying a bottle of sticky medicine around when you are out and about is not terribly practical. I keep the tablet form in my bag, and use the liquid if I think I am going to have a problem at night. Again, talk to your doctor about this.

One other thing to bear in mind is that reflux can result in asthma like symptoms. Stomach acid escaping into the oesophagus can irritate the trachea and it is very difficult to distinguish between that and asthma. With me, the dead giveaway is if I develop asthma symptoms within an hour of eating food and then find that getting up and moving around helps (I'm an exercise induced asthmatic, so if it was asthma exercise of any sort would make it worse, not better).

Hope all this is of some help.

in reply to MaggieHP

Hi, thanks for the reply. I've been reading a lot about gerd and have made many lifestyle changes. I find that it gets worse if I eat something sugary. And yes, all the foods that are bad for gerd sufferers unfortunately made up my entire diet, but now I'm more careful. I still have the coffee, but one or two a day instead of 5 or 6!

Being hunched over and bending down definitely brings acid, sometimes within seconds. I will try gaviscon. I have found recently that Andrews liver salts and alka seltzer both offer a little bit of relief.

I get a looooot of trapped wind, which only expels properly when I'm sat up straight. When I have to burp, it bubbles up with the stomach acid, so I wonder if the wind is forcing acid from my stomach. Luckily for everyone else, the wind is only a problem in an upwards direction! This leads me to think that the problem is in the stomach and not further down the line. And yes, I wonder if the acid is what triggers my asthma too.

Exercise definitely doesn't make it any worse, unless I have to be bent over, like digging or picking things up (not ideal, as I'm a gardener by profession). I'm not very overweight, but haven't done a lot of exercise since leaving hospital. Before the lung collapsed, I cycled every single day between 20-200 miles, but now I'm worried about getting back on my bike. I live quite remotely and if I ran into problems I might not be able to get help in time. i do exercise, but not as much as I would like to.

Mark_in_Wales_CVA profile image
Mark_in_Wales_CVA in reply to

Hello, seems you may also be affected by yeast, the trapped wind (bloating also?) may be caused by the yeasts in certain breads. I also have GERD and had a lot of wind issues. I spoke to a friend who is a gastro specialist, and she is also a celiac (allergic to gluten). She mentioned that quite a lot of people are affected by the un-cooked yeasts in many sandwich-breads. Many typical sliced breads are made using the 'Chelmsford Technique' which is a fast way of mass producing breads, but the baking does not 'kill' all of the yeasts. So when you eat if, if your gut is sensitive, the yeasts will come back to live and produce CO2, thus the wind/bloating. I cut out the sandwich and mass produced breads, and now have much less problems. As for the GERD, sadly I had to bite the bullet - coffee, chocolate, tea, alcohol - have all had to go from my diet, as well as nearly everything that Maggie HP mentioned. It will seem like a lot of advice here now, but bit-by-bit you will get things sorted. Trust me I was in a similar place at the start and after 2 years I have nailed a lot of issues. Good Luck!!

in reply to Mark_in_Wales_CVA

Thank you, I think you're onto something with the yeast. I get particularly bad symptoms when I eat certain brands, especially gregs doughnuts, which I have reluctantly stopped eating. Was contemplating cutting out alcohol too. I think it's going to be the biggest challenge to cut all those foods out! Well done for doing it. How long was it before you noticed a significant difference?

Mark_in_Wales_CVA profile image
Mark_in_Wales_CVA in reply to

In my case I have cut out the 'worst culprits', which was tea/coffee/alcohol, and on the others like white onions, garlic, citrus-fruits, also I try to avoid them 100%. But I can stomach them very-very occasionally, and I drink plenty of full-fat milk which settles the acidity for me - when I say very-very, I mean once in a month or every few months. To see the effect of these being cut out was almost immediate, I was on a PPI and I just stopped taking the PPI a day or two after stopping the worst culprits. In regards to the yeast, I guess it was a week or two to see the effect, but again it was a dramatic difference when it worked.

I have also stopped taking ALL of my asthma medication as a result of cutting the bad things out. Been breathing normally for the last 2 months....

in reply to Mark_in_Wales_CVA

Wow, well if there's a chance I can come off the meds, it has to be worth a shot! no more alcohol. What a cruel world we live in! :( 

Mark_in_Wales_CVA profile image
Mark_in_Wales_CVA in reply to

I feel (felt?) your pain!

MaggieHP profile image
MaggieHP in reply to Mark_in_Wales_CVA

Yes, tea is bad for me too, the tannin being the culprit, which is why red wine is a disaster as well.  I use to be able to cope with white wine, but that is now risky too.  White onions I can cope with at the moment if they are chopped up really small in a casserole which needs slower cooking (presumably because they break down more which makes them easier to digest).  Shallots are a disaster, as are leeks.

netochka profile image
netochka in reply to

I used always to have reflux and take a lot of antacids (as well as occasional PPIs). Gardening was horrible then so I sympathise! Just that when I adopted a diet with far fewer starchy carbohydrates as well as sugars (my GPs advice as I was an overweight vegetarian pasta addict), I was surprised to realise that I no longer even bought antacids. My mother also had lifelong acid problems and when she tried the same diet, she commented independently that with other diets she'd always HAD to eat more because of the acid stomach, whereas it hadn't been a problem with a lower carb approach. It might be worth trying, though it feels quite radical (and definitely no doughnuts most of the time!).

TaurangaSue profile image
TaurangaSue

Hi, Im fairly new to it all too. I have terrible coughing and usually end up with a chest infection or, more recently, pneumonia. I too have woken up hardly able to breathe in the night. I was on seretide and fluxotide with respigen and am currently trying symbicort smart.

The astma nurse has got me to try using a siNus rinse as I tend to get sinusitis too.

I have decided that I don't like asthma and would like it to go, thank you. :)

I do feel very alone at times. Hard for others to understand. It sucks.

Plus I've moved cities and it's hard for me to explain to new doc that i know I'm coming down with something, but nothing will be heard on my chest til it's too late. Aaaargh! Frustrating!

in reply to TaurangaSue

Hi, yes asthma can definitely go back to whence it came! I admit not having had a lot of empathy for asthma sufferers before now. I had no idea how debilitating it could be.

Do you think the seratide was causing you to be breathless at night?

I understand completely how you feel alone sometimes. Everyone seems to be an expert on the subject, as if we never thought to do any googling for ourselves!

I have similar doctor frustrations. I spend a lot of my time abroad and can't afford to pay for medicine here, so I go back to my country to get medicine prescribed. It means I see a new doctor each time and it's like starting again. They're happy to prescribe the seratide without any questions, which seems to keep me alive at least. It would be nice to start uncovering the causes etc though and I wish my asthma was a bit more stable.

It seems a lot of people I meet have asthma, but no one I've talked to seems to be struggling every day with it. It wasn't until i found this forum that I realised other people were getting cramps and gerd etc too.

Mark_in_Wales_CVA profile image
Mark_in_Wales_CVA in reply to TaurangaSue

Have you tried Montelukast? Good for night-time relief in certain cases.

TaurangaSue profile image
TaurangaSue

Oh, i used to get a lot of cramps until i started drinking toNic water with lime cordial.

in reply to TaurangaSue

I will try that, thanks :)

TaurangaSue profile image
TaurangaSue in reply to

Yeah, something in the tonic water. :)

in reply to TaurangaSue

Gin?

TaurangaSue profile image
TaurangaSue in reply to

Ha ha!

TaurangaSue profile image
TaurangaSue

It could have been the seratide making me wake up with that suffocating feeling, but I think it's more likely to be asthma itself. Who knows.

The asthma nurse told me that the reason I always wake up at 330 to 430 (without the suffocating feeling) is definitely due to asthma.

Cheers

Sue

in reply to TaurangaSue

Yes, I wake up at 4am every day too! I had a feeling it might be related.

Chroniccough profile image
Chroniccough in reply to TaurangaSue

Oh that's interesting. I used to wake up in the middle of the night too. I didn't feel breathless then, just wide awake. What's the link with asthma ?

The only thing which has helped me sleep for 7-hours straight is Mindfulness meditation (i did a proper course, I am not talking about listening to New Age music). Highly recommended

Thank you, I think my problems are possibly caused by the stomach, but I might give it a try and see if it helps my blocked nasal passage at night.......

gerrytlloyd profile image
gerrytlloyd

For cramps, you might try supplemental Potassium. Sports people use it.

Your condition sounds different to min but here's my blog, in case it gives you any ideas: bit.ly/serevent

in reply to gerrytlloyd

Thanks. I will check out you blog :)

JacquiThomas999 profile image
JacquiThomas999

Ask to be referred to a consultant. I have difficult asthma. Controlled by Ventolin, Sybicort and Spiriva. With a GERD drug every morning, Montelucust every night. And antihistamines every morning. Still occasionally I to go on steroids. I would also download the Action Plan from the Asthma UK website and get it completed with your nurse or Dr.

in reply to JacquiThomas999

That's a good idea, I will have a look at the action plan now. Thanks.

Hi Father Jack make sure you have a CT scan as a follow up for that collapsed lung. I have seretide 250 mg 2 puffs 2 or 3 times a day It's doing the job with a lot of rinsing and tooth brushing to avoid oral thrush.

You're not talking about oral steroids or antibiotics?? You still have a lot of mucus that means your asthma is not controlled..phone the Asthma Uk helpline for advice and knock at all the doors: your GP, your Asthma nurse, your specialist team..until you are Well!!! Take care xxx

Fran

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