it feels like I'll never get better

[crabdip]

Hi!

I've had constant air hunger every day since June. During my early teens, I was diagnosed with asthma caused by cats. I got prescribed Ventolin which I used when in contact with cats, it helped. I never had any other issues with asthma. As I was young, the allergy tests only confirmed me being allergic to cats, and only slightly sensitive to dust mites and pollen.

However in June this year, I suddenly got breathless (air hunger), and this has lasted ever since. I went to the ER several times and got tested for pulmonary embolism, blood tests, sed rate tests, anaemia, etc. But none of these were positive. I used my Ventolin constantly, but it didn't help in the slightest.

In August, I finally got diagnosed with asthma as my PEF-score was low and responded to nebulisation (higher PEF-score after nebulisation). (I must have had a low PEF score for two months?!). I was prescribed Prednisolone for a week, and it helped 2 weeks later, my breathlessness wasn't gone, but it wasn't as strong and only occurred a few times a day. But the breathlessness came back a week later but with normal PEF scores this time (I bought a peak flow meter).

In September, I was specifically diagnosed with asthma caused by allergies (dust mites, pollen etc) as my spirometry was normal. The nurse said that chronic asthma would mean that my spirometry wouldn't be normal? I was prescribed Symbicort (and Ventolin) and took normal doses at the start, but I also tried stronger doses. This caused throat pain and hoarseness, and the physician said the dose was way too high for a 20-year-old. I got prescribed montelukast 3 weeks ago, but haven't noticed any change. Symbicort didn't help at all, not even the stronger doses (4 puffs of 160 morning and night). I even got dust mite protective sheets, but these haven't worked. Still constant breathlessness, cough with phlegm etc but with normal PEF scores!

I am now prescribed with Fostair 200 (and Ventolin). This week I caught a cold, which means I can't really evaluate this inhaler yet. I often get sick, even when I was younger.

I'm breathless constantly every day, and sometimes I'm dizzy as well. However, my PEF score and oxygen saturation are always normal. And normal spirometry. But I still have symptoms of breathlessness, cough with phlegm, and often chest pain. Often times when in bed at night I get a burning sensation in my chest (and breathlessness), it feels like something awful is about to happen, but that's the only time I respond to Ventolin as I fall asleep after a puff).

I'm starting to wonder if it's really asthma since I do not respond to any medications/tests and since I've had breathlessness constantly no matter what I do. There is NO improvement during the day when I take Ventoline during the daytime. Why do I still have these symptoms yet my scores are normal? Is this normal for asthma (having constant breathlessness every minute), has this happened to any of you? What else can be done if Fostair doesn't work?

Thanks in advance. /B

[Homely2 Administrator]

Have they done chest x ray and ct scan.

[crabdip in reply to Homely2]

No, they haven't. I think the blood tests assured their suspicions and no X-ray/CT-scan was needed. Should I ask for one? Can it diagnose asthma?

[Homely2 Administrator in reply to crabdip]

My consultant used xray and ct scans to help rule out other lung diseases and to make sure that he was dealing with asthma.

His concern was that while fostair 200 had helped manage my asthma, it had not got it under control, so he wanted to make sure that there was not something else going on that was lung related.

[risabel59]

Asthma is complicated. It gets difficult if you are not in control. All sorts of things can stop you getting better from inflamation. You may have an underlying infection.... Lung or Sinus. There may be post nasal drip or Acid Reflux involved. Or a new Allergy. A high BMI can aggravate inflamation.

A "normal" Pef score means nothing, if you don't know what your normals are when you are really well. Also not all asthma responds to steroids.

Line up your ducks... Keep a diary of Peak Flow, (am & pm) when and how much ventolin you are using, and other symptoms, such as night waking and trigger events such as Laughing. (Laughing can really set me off). Write all of this down. One never remembers when you are in the doctor's office, unless you write it down. Somehow doctors believe you more if you do..

You probably need some more allergy testing, Also there are both blood tests and prick tests for allergys. Blood tests for Eos. levels, ( which will show inflamation and a certain type of asthma) and C reactive protein (which will show infection) amongst others, as well as perhaps reversibility testing and FeNo testing. As well as an Xray & CT scan if you can get them done. Also perhaps a Metacholine Challenge test. (although that is not necessarily needed and is actually not a terribly nice test).

You may of course have a different problem. All sorts of things cause breathlessness, and although Ventolin may help in the short term, the fact it helps does not necessarilly mean you have asthma. Or indeed you could have a combination of conditions.

Being breathless is serious. Keep going back to your GP. Don't worry about the level of medication you are using, I promise you it's not that high and age is not a factor in what works for you. Being in control of your condition is more important, And then titrating your dose to what keeps control is the way forward. Also in terms of drugs, there are many different choices of combination inhalers. (sometimes people are allergic to lactose in dry powder inhalers). Not all inhalers work for all people. There are also many other add on's that your doctor could prescribe. I would be loathe to suggest anything, because obviously everyone is different.

But what I do know is sometimes it takes a while to get the right cocktail of drugs. I use 2 different inhalers, a nasal inhaler, antihistamines, montelucast, Uniphylin, and antibiotics 3 times a week. And quite a bit of Ventolin. But my asthma is complicated. However over the years I have used so many different inhalers and combinations thereof to get where I am now.

The main point is, If I am symptomatic, and breathless I take it very seriously and keep on going back to the doctor... Not all GP's take asthma as seriously as they should. Also you need to take control of your situation as much as you can.

Good luck

Best R

[Patk1]

It's common with a cold or other virus to have flare up of asthma.ru using a space device with Yr inhalers?ha6s Yr technique been checked?ked of laAlso, using 2puffs of salbutamol before steroid puffers 6 will dilate Yr Airways,allowing better absorption.u cld speak to helpline mon- Fri on

0300 222 5800

[flowerjunky]

hi

You mentioned that your chest burns when you’re lying down. Have you been checked for reflux / GERD ? It can cause asthma flares / coughing / mucus etc. Usual treatment is with antacids such as Gaviscon or omeprazole as well as some diet changes.

Recommend that you speak to your asthma nurse or doctor to see if this might be a trigger for you.

Also worth checking your breathing technique. Are you shallow breathing and just using your upper chest? After chest infections it is common for us to get into bad habits and not breathe deeply and use our diaphragm properly to breathe correctly. A respiratory physiotherapist can help with this.

Hope that you manage to get your symptoms under control.

[Gareth57]

Hi, if tests are coming back as normal and inhalers are not working could you be suffering from anxiety rather than asthma? I had a spell of what I thought was an asthma attack, nothing worked until a Doctor suggested it was a panic attack (I didn't feel stressed or anxious) but that suggestion and realisation that it wasn't my asthma sorted me out! Just a thought!

[Helloeveryone_]

hi

Just in case you haven’t had it checked it might be worth seeing if your B12 levels are ok and also iron etc.

I had low B12 a few years ago while having a lot of breathlessness although it’s quite hard sometimes to tell what is going on.

I had a course of injections from the doctor it’s also worth getting the results of the b12 test to see your results.

Also if you have every avenue of tests and it’s all ok maybe ask for a referral to a respiratory physiotherapist to see if that can help I saw one and it really helped me.

Good luck and hope you get to the bottom of it soon.

[no33-go33]

How distressing for you! Symbicort works for me . I have allergic asthma combined with allergic rhinitis all year round. When I have bad hayfever / rhinitis my asthma gets worse. Do you have any kind of nasal discharge? You would have to deal with that to improve your asthma. Also I wonder if you are having heartburn , you might need something for that as it can cause discomfort/pain. I hope you get sorted soon as you are very young and should not be suffering like this. I wish you well.

[Janny1]

Have you sent a sputum specimen? It could an underlying infection not being treated correctly. I was ill last year with a pneumonia and it was after many sputum specimens sent I finally got the right antibiotic.

Persevere with the Montelukast, I was skeptical it would work but feel different about it now.

I switched from Symbicort to Fostair as didn't feel it was helping. My Practice nurse agreed and I had been on it for years Haven't looked back

You may have acid reflux so discuss that with your GP

Good luck

[Scrofulous]

Hi. The first thing I would say is to make an appointment with a respiratory nurse to be sure you're using your inhalers correctly. 80% of people aren't. You mention sore throat and hoarseness. When you've had your Fostair, do you go to the bathroom, gargle, then drink some water? If not, try that. It works for me.

[crabdip]

Scrofulous Janny1 no33-go33 Helloeveryone_ Gareth57 flowerjunky Patk1 risabel59 Homely2

Thanks, everyone for all the wise and helpful answers!

I have just done a chest X-ray, and waiting for the results. I'm also supposed to do a sputum culture test, however my morning (green, yuck) cough has disappeared. I had a chest cold last week which made my asthma symptoms worse...

These last couple of days my symptoms have been better as my chest cold has disappeared and I've been using Nezeril for my blocked nose! I've only had to take my ventoline + extra doses of fostair once! (Of course, I still took 2x2 preventer doses of fostair).

However, today I stopped taking Nezeril (as it has gone 10 days) and noticed that my asthma symptoms are worse today. I think it might be because of post-nasal drip since I've swallowed a lot of mucus today. And that seems to make my breathing worse.

However, I notice that Fostair works much better than Symbicort to relieve symptoms (and maybe prevent them). So that's helpful.

I have a prescription for Dymista, which I usually only take during spring and pollen. However, I might start using it daily now as well, as it should make post-nasal drip better? Will that be too much steroids (fostair + dymista)?