I wonder if anyone can help me? I have been having difficulty breathing at times for 18 months now. It started all of a sudden and has gradually got worse. This can now happen a few times a day and last several hours at a time. I get out of breath now after even just a few seconds of high intensity movement. This is often accompanied by a pain in my chest mid height approximately 1-2 inches from the centre. My local GP's have failed to find anything. I have paid privately to see a consultant at my local spire who has had lung function tests, ECG and blood tests completed and he can't find anything specific wrong with me. I am a 45 year old male who before this was in good health. This also started very suddenly. I am at a loss what to try next and am prepared to self fund.
I am more than happy to pay for tests to secure a diagnosis but have no idea where the best places are in the uk to have this done.
This is really affecting every day life now, the gp seems to have given up. They have diagnosed acid reflux, chest infection, anxiety, "slight blunting of the heart" etc etc none of which have been correct.
I lost my dad to ipf last December, I have suggested it may be this, but they have advised that they would hear crackling in my lungs if this was the case.
Any help really really appreciated
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Shaunb
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Forgot to mention. This originally only occurred after alcohol. If I do drink alcohol now it either gets worse within about 2 hours or definitely the next day.
I have arrythmia of the heart (spelling??) and take flecanide acetate to control it. I discovered that even one glass of wine sent my heart into craziness! and I got breathless, sooo perhaps if you gave up the alcohol it would really help.
When I have a problem that is causing concern I try to eliminate possible reasons for it. Perhaps you could try this yourself. For example, you say it originally occured after alcohol and gets worse between 2 - 24hrs after alcohol.
My way forward would be to remove alcohol from my diet for a few months and see if it goes away for definite. Then you have your answer. If it continues then the alcohol is aggrivating the condition.
Hi Shaun this must be such a worry for you. I don't really know what to suggest as we are not medical experts on here.. You can try calling the BLF, no. under the red balloon at the top. They have very experienced lung nurses there. They are open again on Monday at 10am. I presume you have had a chest x-ray and CAT scan done? Have you had your heart checked? Let us know what happens please. x
Hi, I can really feel your frustration, it must be very worrying.
Firstly, what did they give you if anything for the acid reflux? Anxiety will certainly make that worse. I refrain from eating any acid or fatty food to control my acid tum. If it boils up a bit a take Ranitidine (bought in Tesco, Sainsbury etc as 'Indigestion Tablets' the brand name is Zantac. I find them amazing although rarely have them now.
Secondly, did you have a CT scan? This would show any damage in your lungs and show anything amiss. It would also show if your lungs are in perfect condition.
I really think it would be helpful if you call the helpline tomorrow, 0300 030 555, available office hours Mon-Fri. They are a mine of information and will guide you on what to do next.
You say you lost your dad only last December. Grief can affect us in many different guises.
Finally, there's a great medical programme on Radio 4 called Here's Health. Have a look in BBCiplayer. They have 2 years worth of programmes. About 6 months ago there was an excellent programme explaining about IPF & copd. You could put IPF etc in the tool bar once you've got the programmes up. It has recordings of the different crackles docs listen for....... did anyone mention asthma? Or allergies?
If I were in your shoes I'd be looking at getting to see a specialist at somewhere like The Royal Brompton hospital who are one of the best if only to eliminate.
I wish you all the best in finding out what's wrong. Peeg
Reflux can make you feel awful and it can have triggers that make it worse. Have you had any broken ribs or trauma many years ago in that region? I popped 3 ribs out my sternum many years ago sneezing it hurt a lot then and the area is showing arthritis now. I was diagnosed with a heart condition in 1992 and had asthma most of my life. It took a long time to get my GP to do tests for my breathing as they blamed everything on my Heart conditions. I have now confirmed RLD.
I hope you find the triggers and can isolate the problem.
You don't say what alcohol you drink but you could be allergic to some of the ingredients ......eg red wine has sulphites that some people can't tolerate.A process of elimination could be the way forward good luck.
funny you should say that. I was thinking along the same lines. Our old pub landlord was allergic to alcohol - all sorts of heart-related problems flared-up when he drank.
Although I have severe emphysema I find certain foods make me more short of breath triggered mostly by bread and anything with yeast in it. I also find anything that ferments is bad for me which puts beer out of the question. Perhaps trying cutting alcohol and bread out for a while might help. If money is no object perhaps a CT scan might reveal some problem. It's no fun being sob all the time. Hope you get sorted soon.
You have had some great advice already, but if your doc won't refer you to the Royal Brompton they do take private patients. I have an appointment (thankfully NHS) at the "unexplained breathlessness clinic" at the end of July to which I am pinning all my hopes for finally getting answers. You go in for a full day and have all tests done and either a diagnosis or appt for further inpatient investigation at the end of it.
One other test you should seek is a CPET - Cardio Pulmonary Exercise Test. (Note the Brompton do this as part of the above clinic). This is the only thing that has shown my consultant that something goes wrong when I try and do 'stuff' - my heart and lungs are fine sitting in a chair which is when all other testing is done. As soon as I exert myself I stop processing oxygen.
Best of luck and let us know how you get on.
X
Wonder if it may be silent aspiration ... something going into lungs without you feeling it's gone down wrong way? Think you would be coughing though.
Hi shaunb - I have silent reflux and as julie is asking Im wondering if you could be aspirating acid into the top of your lungs. During my research into silent reflux (LPR or laryngeal/pharingeal reflux) Ive found on several sites that silent reflux is often mistakenly diagnosed as asthma. So that could possibly be a link. The unexplained breathlessness clinic at Brompton sounds like a great idea.
Dear Shanub, This same thing happened to me. I went to many Drs. for about five months. I finally landed in the hospital after a Dr. there diagnosed me with exasperation. My oxygen level dropped to seventy when I walked or was physical. I am now seeing a pulmonologist who has diagnosed COPD and emphesyma. This has all been a huge shock to me. I live in the states, so I know our medical facilities are different. Be. persistent. Good luck.
You don't say where you live but if it is in USA or Canada go to a hospital emergency and tell them the symptoms - they will put you through rigorous tests to find out what it is, It is worth a try for you since you can't figure it out any other way.
8 years ago my son in law died of cancer and 8 days later my brother in law died. i woke up the morning of the funeral with what was diagnosed as polymyalgia. i swear the deaths triggered this condition. i no longer have it but wondered if your father passing away didn't trigger something also and hopefully with time this breathlessness will stop as time goes by. i wouldn't have written this but where they've ruled out all other major conditions thought i would share my experience.
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