I'm new to this forum but am a bit frustrated with my current condition and just wondering if anyone could give a bit of advice.
I have had a non-productive cough and been feeling short of breath for the last 4 months. I have positive results for histamine challenge and bronchoscopy shows inflammation in my airways. My consultant prescribed Symbicort (2 puffs twice a day) which I have been using for 10 weeks. Although I haven't seen its effectiveness my consultant insisted on me using it and asked me to increase the dosage if necessary. He said I'm not asthmatic (even with these asthma symptoms) so the symptoms should go away with Symbicort. So far, apart from the side effects (cramps and rapid heart rate) I haven't noticed any changes yet. And whenever I had a cold I just got so much worse.
Sometimes I would have to go home early from work or even take the whole day off because I feel too breathless and exhausted from the cough. I am a marathon runner too and this 'asthma' has put me out of business.
I have talked to my GP about it and he said just follow the consultant's advice...but it's been way too long and I'm now extremely frustrated. Any advice will be hugely appreciated!
First of all, welcome to Asthma UK, I think you will find us a useful source of information and support. Please do ask any questions that you think of!
First of all, as a general point, we always ask all new board users not to be put off or frightened by what you might read on these boards. Asthma is a hugely heterogeneous condition in terms of severity, and a board like this one naturally attracts those at the severe end of the spectrum in disproportionate numbers. As you find your way around the board, you might read stories of multiple medications, poor control, regular hospital admissions and even intensive care admissions - such things are usually only seen in the most severe cases of asthma and are certainly not typical of most asthma. The vast majority of people with asthma can be very well controlled, with minimal or no interferance in their lifestyle, once the right combination of medication is found.
So do you have asthma? Obviously, I am not in a position to see you or review your whole medical history, but your symptoms and the results of the tests that you have had would seem to suggest that you do have asthma. I am a little curious about the tests that you mention - histamine challenge and bronchoscopy. These tests would not usually be done initially, if at all, for the diagnosis and management of asthma, especially in someone of your age (your profile says you are 23?). Are you being treated somewhere other than the UK, or where there other symptoms that you have not mentioned that lead to those particular tests being done?
Have you also had spirometry or full lung function tests, and do you measure your peak flow at home? Your GP or consultant can prescribe a peak flow meter, if you don't already have one, or you can buy one from a pharmacy. Regular measurement of your peak flow three times a day, as well as when you have symptoms and before and after medication, can also help your doctors to decide whether you do have asthma.
I'm also very puzzled by your consultant's statement regarding the Symbicort - that you are 'not asthmatic... so the symtoms should go away with Symbicort'. A response to Symbicort - ie the symptoms going away - would be very suggestive that you are asthmatic! I am really not sure why any consultant would say the converse.
The fact that you have not responded to the Symbicort does not mean that you are not asthmatic, though. Some people do get a complete response with just Symbicort, and others don't. It may be that you need a higher dose or the addition of a different medication to help you get full control of your symptoms. There are lots of other medications available for asthma, so there is potential for improvement.
It's also worth considering, if your consultant hasn't done so already, if there are any other medical conditions that are contributing to your asthma symptoms. Gastro-oesophageal reflux disease (GORD/GERD) can cause asthma by small amounts of stomach acid refluxing up and irritating the lungs - this can happen without typical indigestion or heartburn symptoms ('silent' reflux). Sinusitis and post-nasal drip can also exacerbate asthma symptoms, and require slightly different treatment. Allergies in general can also worsen asthma, and avoidance of the allergen and/or treatment with antihistamines can make a great deal of difference. Allergies can be tested for with blood tests or skin prick tests.
It's difficult to advise you how to go forward with this in view of what your GP and consultant have already said. It is clear that your symptoms are having a fairly profound effect on your life at the moment, though. You need to make this clear to your consultant at your next appointment, and ask what his plans are for further investigation and treatment. You may find that it helps to write everything down before you go to the appointment, so that you don't forget what you want to say; taking a friend or relative for moral support can also be helpful. Ultimately, if you are not happy with your consultant's management plan, you have the right to ask your GP to refer you to a different consultant for a second opinion.
It often takes time to find the right combination of medication for you - everyone is different, and there are huge differences in the way people respond to medication. I know it is very hard when it is having such a profound effect on your life, but do try to be patient and stay positive. There is every reason to think that your asthma will be brought under control, and no reason to think that you will not be able to run marathons again in the future! We have quite a few runners on this board, some of whom have quite severe asthma (one is running the London marathon tomorrow!).
Hope this helps, do ask if you have other questions
Take care
Em H
Hi Em
Thanks very much for your message. The bronchoscopy was actually done because of some other symptoms but it just revealed an inflamed airway.
I had a full lung functions test which was negative. I didn't have a spirometry although last time I tried at my GP's I was coughing so much I just couldn't breathe through the spirometer to give any readings. So my GP just said, 'forget it'.
I might actually take your advice of seeking a second opinion, or ask my consultant to refer me to someone else. I think a lot of patience is needed as the 'first opinion' took several weeks and I'm not sure how much hope to put in this time round to get the right treatment, or even diagnosis!
I just sometimes find it difficult to explain to people what I'm going through. I can appear normal and all they see (or hear!) is the cough.
Meanwhile, any advice on how to just silent the cough? Or make me sleep better at night? I've tried all kinds of sweets, pholcodine linctus, Vick's rub etc...
Have you had any specific allergy tests done? They would be worth considering. Allergy UK has a lot of helpful information. My son was recently diagnosed with dustmite allergy (skin prick test after a really bad reaction with breathing difficulties etc) and has been working to minimise them in his home plus using an airfilter this has made a huge difference to him. He takes a daily antihistamine as well. He was off work for quite some weeks until they worked out what was causing problems.
It can take time to find what works for you.
Hi Al,
I'm sorry you're feeling so frustrated, I think a lot of us can relate to what you're going through. It's always difficult explaining how things are and how exhausted you can feel when you look 'normal'!
As you probably know, a normal lung function test doesn't exclude asthma. Asthma is a condition of variable or episodic air flow obstruction, so all a normal test shows is that you didn't have significant air flow obstruction at the time of the test - it's one of those tests that is useful if positive, but not so helpful if it doesn't show anything.
In terms of silencing the cough and getting a good night's sleep - it's likely that both the cough and the poor sleep are functions purely of uncontrolled asthma. There's little that anyone can suggest, then, apart from review of your asthma medications to get your symptoms under control. Sleeping propped a little more upright can help with the night-time symptoms. Staying hydrated so that your airways don't get dry is important too. Other than that, the mainstay is going to be finding the right combination of asthma meds for you.
Do go back to your GP as soon as you can. Having night-time symptoms does imply quite poor asthma control, which can be dangerous. I do hope you have some luck with your consultant, or are able to see someone else. I know it is extremely frustrating right now, but you will get there eventually.
Take care
Em H
How to dump a doctor?
Hi Em
Thanks very much for your post. I've now booked myself to see the GP on Thursday. I haven't seen my consultant for a month actually and haven't got any appointments to see him. My question now is should I end my doctor/patient relationship with my consultant just like this? Or should I go back to my consultant asking for possible further treatment? When I asked him last time what to do if I don't get better in 4 weeks he said he'd refer me to someone who deals with reflux, i.e. he's done all he could. Should I just ask my GP for referral or does my consultant need to know how I get on?
Thanks
Al
It's difficult to advise, Al, because I don't really understand why your consultant is saying the things that he is saying. If you are just on Symbicort, there are many other treatments for asthma or 'airway inflammation' that your consultant could try, so I am not sure why he thinks there is nothing more that he can do. Is he a respiratory specialist? If so, he must have many asthmatic patients under his care who are on a lot more medication than you. In fact, most asthmatics who are on Symbicort alone would be managed by their GP or asthma nurse, not by a consultant at all.
I feel like I am somehow not understanding the whole story here - the tests you have had done are highly unusual for someone with a first diagnosis of asthma, and the way your consultant seems to be managing it seems to be highly unusual too. I get the impression there is something else going on that we are failing to appreciate, so I am reluctant just to say to you 'yes, your consultant is wrong, ditch him and find a new one'.
In the first instance, I would suggest that you go back to your GP and see if he can shed any light on why you are being managed in this way. If you do decide you want a second opinion, there shouldn't be an issue with your first consultant - your GP can simply refer you in the same way that he presumably did in the first place.
Sorry not to be more definitive, but as I say, I am not sure I quite understand what is going on here! I do wish you the best of luck in getting it sorted out.
Take care
Em H
Your comment made me more intrigued. I'm definitely seeing a second consultant to sort this out...thanks very much!
The shortness of breath sent me to the A&E last week (was hyperventilating at 60/min), where I was given steroid tablets (30mg).
But I don't think I have noticed much difference with pred (after 5 days). Is this typical? This is why my consultant initially said it's not asthma, cos I don't seem to respond to asthma treatment. Now put on Seretide instead of Symbicort. Will be seeing a gastro consultant too. Any other routes to go down?
Hi Al,
I'm sorry to hear that you've ended up in A&E, that must have been a very frightening experience for you. A respiratory rate of 60 breaths per minute is certainly very high, higher than is often seen in even quite severe asthma attacks. Did you find yourself getting very anxious or panicky (quite understandable when you can't get your breath)? Were you aware of the fact that you were breathing very fast? Did you get any pins and needles or numbness in your fingers or around your mouth, or clawing of your hands?
Hyperventilating (breathing faster) to a degree is normal in a moderate or severe asthma attack - it's our body's way of trying to keep our oxygen levels up. However, sometimes, because of panic or habit, people find themselves hyperventilating too much - breathing too fast - during an asthma attack. This is a bad thing, as it can produce the unpleasant symptoms described above. Breathing too rapidly can also irritate airways that are already twitchy and make the asthma worse - hyperventilating during an asthma attack thus sets up a vicious circle of worsening asthma, which then worsens the panic, and so on. This is a very common problem during an asthma attack - it would be difficult to find an asthmatic who hadn't done it at least once or twice.
Your very high respiratory rate of 60 does make me wonder whether there might be an element of this inappropriate hyperventilation going on. If so, this gives you a few more treatment options to explore - it's possible that you would benefit from having your breathing patterns properly assessed by a physiotherapist and being taught some simple exercises to do to try to help you control your breathing. You can ask your GP or consultant to refer you to a physiotherapist.
You don't mention why you are seeing a gastro consultant - is it to investigate for acid reflux (where acidic stomach contents pass up into the gullet and cause inflammation and discomfort)? Acid reflux can contribute to asthma symptoms, as the acid has a direct irritant effect on the airways.
There probably are other avenues of investigation that one could go down, but it is difficult to specify what without knowing more about the exact symptoms that you are getting and the tests you have done so far. As I mentioned before, there is something a little unusual about the way you have presented and the tests you have had, so the usual points I would make may not be relevent.
Hope this helps
Em H
Hi again Al,
Just realised I have not answered your question about the pred. It would be usual for someone with asthma to feel at least some benefit from a 5 day course of pred, although not unheard-of not to.
Em H
Hi Em H thanks very much for the quick response!
Yes pins and needles in my hands and toes and clawing of hands. Was indeed panicking as had no idea what was happening. Felt better after taking salbutamol, but got worse very soon afterwards. I'm not aware of myself breathing too quickly normally.
Referral to gastro consultant because consultant couldn't think of anything else, even though I don't feel acid reflux or heartburn.
Now on another 2 weeks of pred (20mg - I'm small). Still not feeling great. Very tired, waking up at night, coughing whenever I'm talking, feel breathless on exertion...and the weather isn't helping
Doing all these privately so maybe that's why all the extra tests?
Question:
I'm seeing the gastro consultant next week. Given that I don't really have heartburn or any related symptoms, what kind of tests will be performed and how long before a diagnosis is made? I know that depends on whether there is something to be found but could anyone give me a general idea? I seem to be playing an endless waiting game here...
Thanks
Al
Hi Al,
I'm sorry you've had such a horrible experience, it does sound very unpleasant and I'm not surprised that you were panicking a bit - I think most people would be the same with their first experience of these sort of symptoms. The pins and needles, clawing of the hands, etc, do suggest that you were breathing inappropriately quickly, probably due to your anxiety and panic - again, this is very common, virtually any asthmatic who has had a bad attack will have done it at some stage. It is something that it is important to address, though - as I said in my previous post, hyperventilating inappropriately can irritate the airways and make the asthma attack worse, as well as producing all the other unpleasant symptoms described above. It can be a difficult cycle to get out of - the more you hyperventilate, the worse the asthma and other symptoms get, the more you panic, the more you hyperventilate... etc. I really would very strongly suggest that you ask your GP to refer you to a physiotherapist who can properly assess your breathing patterns and give you some breathing exercises to do. Practicing breathing exercises regularly when you are well will allow you to have better control over your breathing when you are having an attack and will hopefully prevent you getting into this cycle that produces such horrible symptoms.
I'll bump up an old thread for you concerning the interaction between inappropriate hyperventilation (which is a form of panic attack) and asthma attacks - as you will see, it is quite common, and it has been a topic of discussion in the past.
In terms of the gastro referral: it's possible to have so-called 'silent' reflux that can exacerbate asthma without actually causing the characteristic symptoms of heartburn and so on. It is something that is worth considering in anyone who has asthma or an asthma-like picture but who is not responding to conventional medication. Without knowing more about your history, it's difficult to say whether this is a valid possibility in your case, or what tests might be appropriate, so the following are just general points.
There are several possible tests that the gastros might consider. A pH probe involves passing a small thin flexible tube up your nose, down your oesophagus (gullet) and into your stomach. This is taped in place and connected to an electronic meter which you wear strapped to you; this stays in place for 24 hours whilst you go about your normal day-to-day activities. The probe measures the pH (acidity level) at various points down the oesophagus, showing whether acid is refluxing up from the stomach. It is not as unpleasant as it sounds - swallowing the thing is a little uncomfortable but once it is down it is not too bad.
Other tests that are sometimes done: a barium swallow, where you take a measured amount of barium, which is a chalky liquid which shows up on X ray. Taking X rays just after it has been swallowed can demonstrate whether there is any 'spill' into your lungs and whether all the barium is going where it's supposed to. Occasionally they may also do an upper GI endoscopy, where a fibre-optic telescope is passed through the mouth down the oesophagus into the stomach, so that they can actually see whether there is any anatomical abnormality or evidence of damage due to acid reflux. It would be very unusual for them to do this test without any symptoms or evidence for reflux, though.
Sometimes in this situation the gastroenterologists may elect not to do any tests - as you can see from the descriptions, all the tests are invasive, not particularly pleasant, and, like any test, carry a small amount of risk. By contrast, the treatment for reflux, acid suppressing medications called Proton Pump Inhibitors (PPIs - eg omeprazole, lansoprazole) is very safe and usually well tolerated. For this reason, some gastro consultants prefer to test for reflux by treating it - a significant improvement after 4 weeks on a PPI would be suggestive that reflux was part of the problem.
I'm sorry not to be able to predict more accurately what tests the gastro consultant will want to do - it does vary from consultant to consultant so I really am playing guessing games here! The time frame is also very difficult to predict - as you have private healthcare, it would be usual for any tests to happen fairly quickly, possibly within 1 - 2 weeks of referral, but it really does depend on the consultant and the availability of services locally. Of course, if the consultant elects to give you a trial of PPI treatment without further tests, then hopefully you will come away from the consultation with a prescription in your pocket!
Hope this helps; I know you must have a lot of worries and questions going around in your head at the moment, and I'm sure the fact that you're feeling unwell and not sleeping well isn't helping matters. I won't tell you to take it easy, I know it is very much easier said than done, but if there is anything you can do to help yourself relax or distract yourself then it would be helpful to you! Obviously, if your symptoms of cough, breathlessness and poor nights get any worse, you need to be going back to your doctor, but it sounds like they are keeping a pretty close eye on you anyway.
Take care of yourself and let us know how things are going
Em H
I've also bumped to the top a thread called 'how can I make my work understand' in General forum, in which I describe a relaxation technique which can be helpful in trying to prevent inappropriate hyperventilation during an asthma attack.
Our symptoms are very similar. I've been diagnosed with 'cough-variant' asthma, where the main symptom is a non productive cough. The Symbicort has helped be quite a bit, but I also take albuterol. The Symbicort is a maintenance every day med while the albuterol is a 'use as needed.' Before I exercise or even go outside to do a little yard work, I use the albuterol (30 minutes prior) and it seems to help my lungs from burning.
I also get two-three episodes a year where the inhalers just don't do what they're supposed to and the cough is terrible; I have to be on a short (5-7 days) regimen of oral Prednisone along with an antibiotic (Z-Pack; Azithromycin) for five days.
I had a cough and shortness of breath for months and ended up in hospital. Have you been given prednisolone. That really helped me. I was diagnosed with churg strauss. Not saying that is what you have but if I were you I would insist on seeing the specialist. Ring them and get an early appointment. Be forceful. The longer you wait the more likelihood you will cause damage to your lungs. Ask them to check your esinophils count. I have had to give up netball and amateur dramatics. You need to be forceful as you have been fit until recently. Hope this helps xx
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Change of inhalers.
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