Help - What This Allergy or Asthma Can Be?

[Desoo]

Hi guys, I need your help as my doctors do not give me much information or to be precise been with two allergy doctors, both gave me different opinions so i don't know what to do.

Long story short, i'm a runner and after flu a year ago I started having issues with chest tightness during some of my runs. It is also hard to me to run in the cold.

My cardiologist gave me all clear for heart problems - ECG, 24-ours holter, CT cardiography all clear.

I went to a pulmonologist, took an x-ray, and gave me all clear.

Then I eventually gave up and continued running thinking this will be cleared over time. But no, it didn't.

For the last 10 months, I have gathered enough data for my condition. Separated them in two cases:

Light Symptoms:

The light version is when I do laps on the trail, I noticed that when I reach a certain spot, my chest starts to tighten. After I move away from that spot, the tightness gradually decreases and disappears. I'm sure that this specific spot is the cause because I do 5 laps on this trail, and the situation is the same every time – my chest tightens 5 times at that spot, and 5 times the pain disappears when I move away from it.

This has happened to me on two trails. Both places where I experienced the mentioned pains are mainly close to ravines in the forest with moisture, trees, and various vegetation.

Severe Symptoms:

The more severe scenario occurs after I have participated in an orienteering competition, which takes place almost entirely in the forest. Usually, these competitions last for 2 or 3 days. I run on the first day in the forest and almost have no problems, except for some tightness in the chest during more challenging moments like uphill climbs in the forest, etc.

The problem arises on the second day of the competition. Then, I can't run even 200 meters. After I start running, I feel okay, but gradually, my chest tightens, and the tightening intensifies to a point where I just have to stop. Then, the tightness subsides very quickly, but it returns as soon as I try to run again.

In this scenario, practically, on the second day, I'm out of the competition because I can't follow the route at all.

I am confident that this problem is caused by my running in the forest on the first day because during training on the track (where there is no vegetation, I don't have such an issue. I can run for much longer on consecutive days without a problem. But if I run in the forest and try to run the next day, I can't run even 200 meters without those terrible chest pains.

After two to three days, if I try to run, everything is fine, and my symptoms are gone.

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Other than chest pain I do not have other symptoms such as shortness of breath or wheezing. I do not have symptoms when I do not run.

So, lets go to allergy doctor

Doctor 1:

She listened to my symptoms and asked me to do an allergy skin test. It turned positive for home dust and mold. She said: You have allergic asthma that is exercise-induced.

She prescribed me Staloral, Fostair (two puffs in the morning and two before my runs), as well as montelukast. That therapy is for 3 months.

Doctor 2:

I had to change my allergy doctor as the first one moved to another town just 2 days after my diagnosis.

But here the confusion started. After listening to me she said "I DON"T BELIEVE YOU HAVE ASTHMA. Even after I explained all my symptoms.

She also said that Staloral will not help me much (I'm 37 now). It is mostly for children.

What she also said, that worries me is - when i said to her that i feel chest tightness when i run in the cold too, she said that is not related to asthma, but all the information i read says the opposite.

I don't know what to do or believe now or what to do next at all.

Been on Fostair and Montelukast for the last 2 weeks. Don't see much of a difference. Still have chest tightness in the cold and my runs are hard in the same places. Didn't test it in an orienteering competition as there is no such during the winter here.

The second doctor also said I should take a blood test (something like alex allergy test for 282 allergens) because the hand test is not accurate or cannot give the necessary information.

What she didn't told me eventually is that this test will not work when I'm on corticosteroid therapy. I found that in the laboratory.

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Thank you to those who took the time to read my story. Any suggestions as to what I need to do next will be welcomed.

I want to find out what is causing me this. It's frustrating. I ruined my entire contest season and its hard to continue running with all these issues.

- Should I continue with this current therapy and find another allergy doctor

- Should i stop the current therapy and go and make this blood test, then decide what therapy to do

I have an appointment with my GP tomorrow to discuss the situation. I hope he can give me some directions, but any suggestions are appreciated.

Is it really possible to not have asthma, but just an allergy that triggers this chest pain? If yes, should i continue with Fostair and Montelukast, or move to try just an allergy pill like Zyrtec or something?

I will follow the advice of my doctor, but still if i find someone with more experience to help it will be great.

It is so frustrating to not know what is happening and seems that i don't have a luck with doctors as i hear different opinions from them.

[Patk1]

I'd have the blood test firstThen try an antihistamine,recommended by Yr dr.

I'd also request a ct scan of lungs as it gives a much more detailed picture.

I'd also ask gp what their opinion is .

Infections can sometimesleave Airways more sensitive.

All the best

[Poobah]

If you've only been on Fostair and Montelukast for 2 weeks then you need to give then longer to become fully effective. Fostair especially takes around 8 weeks because of the steroid element, it's not a fast acting medicine. I would give Montelukast about 4 weeks trial before giving up on that.

The Staloral med is given to adults as far as I can see, but I must say that each country will have its own prescribing guidelines. But prescribing can differ from doctor to doctor, as you have experienced.

Not all asthma is triggered by allergies and not all allergic asthma means that your allergies will, trigger asthma, they can trigger separate symptoms to asthma.

But asthma can be complex, in that it can be triggered by allergies but also by exercise, gastric reflux, the cold, viruses, smells/perfume etc. Your observations have been well written and I think your GP should take your experiences into account and undertake a spirometry test and if that's "normal" then a challenge test can be done - you're given a inhalation of something known to trigger symptoms and then the spirometry breathing test is done. Or if it's suspected to be exercise induced asthma, you'll be asked to do a physical activity before the spirometry test.

They may also want to do a FENO test, this measures the amount of exhaled nitric oxide. If it's higher than expected it can confirm inflammation in the lungs, BUT it's only a snapshot and not to be taken in isolation as patients can be symptom free the day of the test.

Diagnosis is often a process taking into account your experience of symptoms as well as test results, health history (that flu virus specifically) and physical examination. A picture can appear over time and, even though it can be frustrating to have to see a doctor several times, the observations over time will assist diagnosis. And asthma medication can be started before a definitive diagnosis as a patient's response can indicate the presence of asthma, however, any good doctor will be aware that not all asthma meds will suit every patient.

I'm not surprised at two separate doctors having different opinions. It's one of the main complaints this forum has.

● Yes, continue with the Fostair and Montelukast for at least 8 weeks before reviewing your progress with your doctor.

● Definitely consider a prescribed antihistamine, like Fexofenadine 180mg twice a day.

● Personally, I would have the blood test. We don't often use the skin prick test in the UK anymore as the blood test can screen so many more allergies.

● Ask for a challenge spirometry test and a FENO test.

● Keep a daily record of symptoms and when/why they occurred.

I'm sure other forum members will have some excellent advice.

[Desoo in reply to Poobah]

Thank you for your reply. I'm amazed how helpful people here are. Thank you all!

Actually, I had spirometry test with my pulmologist when i did x-ray. My results were above average for my age. I did the test twice in 6 months and all the results are looking good.

I'm also not sure if challenge spirometry test will do the work as like i said, most of the days i run i'm fine. I have to replicate the same conditions in order to get the result i need, but as the conditions are mostly outdoors that may be an issue.

Also, its seems really hard to find an allergy doctor that is interested in listening my symptoms. I feel like they just don't listen, but instead prescribe medicines.

I will see my GP tomorrow to discuss the issue and i hope we find a doctor willing to dig into the situation with me. In the meantime, i'm monitoring all my runs and every time i feel an issue i look around the environment, weather etc.

[Poobah in reply to Desoo]

You're welcome. Half the battle is communication and being able to advocate for yourself in appointments. You're a very good observer and communicator, unfortunately, as you've experienced, some doctors don't listen to their patients no matter how good they are at describing their symptoms and experiences. Finding a doctor who is happy to discuss things with their patients and explore options is like winning the lottery.

I hope your GP can help you find the right specialist. All the best.

[Lysistrata Administrator Community Ambassador in reply to Desoo]

Hi Desoo, I agree with what Poobah and Homely2 have said. I'd also add that if you were fine when you did the spirometry, then the result is likely to be fine. Asthma is variable and spirometry can often be normal if you haven't been triggered. If you're mostly being triggered by things like moulds and running outside then your results may well be normal waiting in a warm room inside then doing the test! The same would apply if you do the test not long after taking your Fostair - the inhaled steroid part can take a while to kick in, but it also contains a long-acting reliever medication which starts working more quickly.

Unfortunately not all doctors necessarily understand this. I think they often think if you have asthma your spirometry will always show it, but it can actually be hard to catch it when you have scheduled tests which may be done when you're fine. The X-ray is also likely to be normal with asthma - I assume they did that to rule out anything else but it doesn't rule out asthma if it's normal.

You could also ask for a reversibility test: for this you do the spirometry, then take some relief medication (salbutamol/Ventolin), wait 15-20 minutes, then do the spirometry again. If you have asthma then the second reading should be at least 12-15% higher than the first (assuming you haven't had medication before the test.) If you do go this route then you may need to insist on doing the second part as your normal spirometry is higher than predicted. A 'normal for your age' result may look ok to start with but you could still improve it with medication (I can show enough reversibility to prove asthma even with a 'normal for age' first test).

Do you use peak flow meters at home in Bulgaria? I know some countries are more or less keen on them - a friend in Israel finds them helpful but the doctors there don't use them much. It isn't perfect as they're more useful for some people than others, but if you were able to use a peak flow meter twice a day every day for a few weeks and record your readings, including when you have triggers and when you take your reliever medication, it may show a pattern that can help with diagnosis.

I realised I wasn't sure if you actually have a separate reliever medication like Ventolin, as I don't think you mentioned it? If you do, it may also help to see what happens if you take this inhaler when you have symptoms, and record that too. Usually if it's not asthma then Ventolin won't really do anything.

I would normally tell people in the UK to contact the nurses on the helpline here. I appreciate that you're in Bulgaria according to your profile so this is less helpful - I don't know if you have an asthma charity there or a helpline you could talk to? If you use WhatsApp then you may still be able to ask the nurses, though they probably won't be familiar with the Bulgarian healthcare system and won't be able to call you. But you could chat through what you've posted here and see if they have any thoughts. It's WhatsApp [phone] Monday-Friday 0915-5pm.

[Desoo in reply to Lysistrata]

I'm really thankful to you all! I will read all suggestions and synthesize an action plan to follow.

[Desoo in reply to Desoo]

Something also that come in mind.

Let's say I try to replicate the severe case by running in the woods for 1-2 hours and go for blood test a few hours after that run.

Do you think that is going to increase the chance of catching the exact trigger of my issues?

[Lysistrata Administrator Community Ambassador in reply to Desoo]

It might for spirometry, if you can time it right - though I find my lungs have an annoying habit of dropping AFTER the appointment. Or if I think I'm fine and going to blow a personal best then it will be rubbish.

Blood tests might be more tricky - I don't actually know how long anything would take to show up. Off the top of my head I think eosinophils can take a while (days/weeks etc) to recover from taking oral steroids even after stopping (the steroids drive eosinophil numbers down so they look normal or you can actually have none at all).

With FeNO as others have mentioned (your GP may not have one of these machines, they are expensive), they're reliable for some people, totally unreliable for others and in some people they are reliable but they lag - they don't show a current issue but they show there *has been* an issue.

[Superzob in reply to Desoo]

I'm not surprised you have good lungs, as you're obviously very fit, but you can also still have asthma (cf. Bradley Wiggins). Since asthma is reversible, it might be possible to use the Fostair together with a peak flow meter (which you should be able to get online or at the chemist for about £10) to do your own simple test. The reason I say this is that Fostair is used in what's called the MART (Maintenance And Reliever Therapy) system, whereby you can use a preventer as a reliever. If you take your peak flow reading before using Fostair and compare the reading 20 minutes after Fostair, you may see an improved reading if you have asthma. Obviously, this is nothing like as accurate as a proper challenge spirometry, but might at least give you something to discuss with the GP.

[Homely2 Administrator]

It is good that you are seeing your gp, there are lots of different types of asthma, some allergic, some not.

A blood test would be standard, they can pick up several indicators of potential asthma, whether it be eosoniphils levels, or Ige levels. The GP can tell you if it matters what inhalers you are on pre blood test, mine does not mind.

A GP should listen to your lungs and take a history.

If the above suggests to him or her that asthma is a possibility then he is likely to order a peak flow test / spirometry tests and, or a feno test to obtain further confirmation.

My first diagnosis was simply by the gp nurse doing a peak flow test before taking any inhalers and then another test two weeks later after taking inhalers. My lungs greatly improved.

Look at the asthma UK website to get an understanding of it all. They also have a very good helpline.

Re orienteering, one of my earliest indicators of asthma was doing the Karrimor in the Lakes, chest pain and breathlessness, quite scary. I take salamol or ventolin before exercise. Asthma has presently stopped me competing, but I will get back to it.

[PaulRosedene]

Your account has great detail. Have you been prescribed a reliever ? If so, does this help with the symptoms ?

I haven't been able to run for years due to asthma, but since I am naturally lazy, this hasn't been a problem for me.

Have you found that any medication helps with your symptoms ? Do you get the symptoms year round or only at certain types of year ?

Lysistrata mentioned the reversibility test (I didn't know it was called that). I have had lung function tests recently. As I understand it, the reversibility test (i.e. first lung function test without reliever, followed by taking reliever and second lung function test) is used in the UK as a diagnosis of asthma.

I was informed by the consultant that my test showed that I have asthma because after taking Ventolin the lung function improved significantly.

I would have been astonished if I was told I didn't have asthma after 55 years of asthma medication.

I tend to feel that the patient understands their symptoms best.

Good luck with the investigations and the running.

[Desoo in reply to PaulRosedene]

Hi, yes, i have been prescribed with Ventolin before i was diagnosed with asthma. Back then my pulmonologist said to try it and i did, but it seems that it didn't helped with my severe case. It kind of helped with the less severe (not sure, but i think it stopped the chest pain).

I still have to test a few times to be sure, but as my triggers are mostly in specific conditions the testing takes some time. Also, its my first winter with this problem and i still struggle to find out what is working and what not.

Today I'm going to my GP to discuss the issue and see what he will tell me. Generally i trust him more than any other doctor. I hope he can direct me to the right strategy.

[hilary39]

Ugh it's so hard when doctors give you conflicting advice and often what's different from what textbooks say, too. It sounds like you very clearly know your own symptoms and have carefully and objectively documented them.

It does sound like it's allergic asthma to trees pollen etc. and perhaps the mold in the damp vegetation.

Did you ever try taking an antihistamine during the orienteering? Did it help?

A lot of the time, we have to go with our gut since doctors are all over the place with asthma diagnoses even though 400 million people around the world have it.

It's for a lot of different reasons chief among them that asthma has many different phenotypes so some people wheeze some don't, some cough some don't, some have normal spirometry even in a bad attack some decline etc.

Doctors often get little if any training on the different phenotypes (including severe asthma which many of us on here have) and tend to bucket all asthmatics into a narrow and outdated list of symptoms (attacks where their skin turns blue and they can't talk etc.)

Protocols and meds also differ not only country by country but doctor by doctor which adds to the confusion.

All of which is to say--trust your symptoms and keep getting opinions until you feel better since you don't want to mess around with accidentally having a serious attack when you are in the woods and can't get the proper care.

Keep us posted.

[Desoo in reply to hilary39]

Hi Hilary,

Thank you for your advises. No, I didn't try antihistamine as the last orienteering competition was before I got diagnosed with asthma. Back then I was still waiting for CT scan results so my focus was mostly on the heart issue like angina pectoris.

Unfortunately i have to try and test this next year in March when first orienteering competitions will start.

I will keep you posted all as soon as i have more information.

[CallysMum]

You need to ask for (and get) a referral to a respiratory consultant and have a full suite of lung tests to test your forced expiratory volume before and after bronchodilators. This will give a definitive answer as to whether you have asthma, or something else, Also a chest CT would be helpful, as some things simply do not appear on a X ray.

[daleboy3]

you need to take running in the countryside with more caution as airborne mould is on all trees bark if you look closely the bark has a GREEN algie & mould which leach spaws into the air & as your running your lungs will take in this mould in very small quantities but it will make your lungs 🫁 go tight very quickly so alway take a ventolin inhaler with you as one puff should open your airways sufficiently, always go running prepared

[Desoo]

Hey everyone,

Quick update on my situation:

Had a chat with my GP yesterday, going over the symptoms and diagnoses from the allergologists.

Decided to stick with Doctor 1's advice and give the prescribed therapy a shot for at least three months before checking in.

Skipped the CT scan for now. According to the doc, it won't help with ruling out asthma, and the chances of something like a pulmonary embolism seem pretty low. I can handle a 21km half-marathon without a hitch, but running 200 meters after 5-7km in the woods is a struggle. So, if it were a lung issue like a pulmonary embolism, I'd be feeling it on all my runs.

I'll keep you posted on the results after the three-month mark. March is when it wraps up, right in time for the first competition, so I'll know if it's working soon.

Big thanks for all your support. Your advice is giving me the confidence to kick this thing and get back to normal.

You guys rock!

[Poobah in reply to Desoo]

Let's hope the next few weeks see your treatment kick in. Good luck!

[Blamama]

Just caught up on this great read and experiencing similar symptoms myself, not exact.

Interested to see how you're getting on as it's been more than 3 months since.

Cheers