Newly Diagnosed

[Nj9x]

Hello,

I am new here, as well as newly diagnosed with asthma. Finding it kind of hard to cope with now, so I decided to vent here and ask for advice. I am 27 years old, male. I would like to apologize in advance for the incoming wall of text.

Even though I have just been diagnosed I think I've had symptoms over the past years, although quite short lasting ones. I've woken up breathless in the middle of the night, and there were periods of time where I'd be out of breath simply by walking up the stairs even though I exercised regularly, 3 - 4 times a week. Funnily enough I've never experienced symptoms during workouts, even though I've done 45min cardio sessions combined with gym exercise.

I started my normal workout 2 weeks ago by simply running on the treadmill, and started to feel dizzy and out of breath almost as soon as I started running. I brushed it off, but the shortness of breath continued for the following 3 days. I felt it 24/7. I made an appointment with a pulmonologist, had a blood test, CT scan of my chest and the doctor said it's most likely asthma and prescribed me with Ventolin inhaler, a Budesonide/Formoterol inhaler and aminophylline pill.

I took the Ventolin inhaler 3 times a day-1 puff. Oral corticosteroid inhaler 2 times a day - 2 puffs, and 1 pill every day - half morning, half evening. And a spray for my nose, flixonase I think.

After 4 days of taking the medications I had a spirometry test and it showed 72% lung capacity. The FeNo analysis showed up normal, nothing out of the ordinary. I was also tested for allergies and the test showed I was allergic to pollen from 4 types of trees. The doctor concluded the pollen might be the problem at the moment.

I've been taking the medication for almost 2 weeks now but the shortness of breath is still present. Some days it's not as noticeable but it's still there. I have no other symptoms except the shortness of breath, and I feel best when I go to sleep. As soon as I wake up in the morning the shortness of breath is gone, and comes back as soon as I get up. My feeling is more like my chest it tight, and air cannot reach it when i try to take a deep breath.

How long will it take to get it under control with medication and start breathing normally? And could it be due to the spring allergies only? I'm hoping this is something I can get under control and not have to worry except when it's spring.

[Tugun]

Hi Nj9x,

Might need further investigation. When is your next appointment with your doctor? You really need to discuss with him/her how you are doing on the medication. Write down things you notice such as the fact that you wake up breathing okay and then get breathless once you stand up. This may/ or may not be important. All these little things help the doctor to diagnose and decide what will work best for you.

Google each of the medications so that you know how they work and what they are doing for you. This is important as it gives you an idea of what is working and what may not be working.

If you have to wait a long time to see the specialist again, discuss everything with your GP. The GP also may be able to get you in sooner to see the specialist. Usually with asthma the ventolin gives immediate relief. However you are also on a long-acting bronchodilator - formoterol- which should also give relief. However as I have never been on that medication, I know nothing about it.

Just if you are so low on oxygen that you are about to pass out, then the short acting ventolin would be required but please check with your doctor. Ventolin can make your heart race and your blood-pressure go up. Also ring the Asthma UK helpline 0300 222 5800 for independent, confidential advice from friendly asthma specialists (Got that from their website!)

[Nj9x in reply to Tugun]

Thanks for the response! My next appointment is due in about 2 weeks, which should include another check up to see how I am responding to the meds. To be honest Ventolin doesn't give me any relief, which is weird.

I have never been severely out of breath, it's annoying more than anything else. I also feel better when I take a nap, generally lying down flat on my stomach has been giving me relief which is confusing me even more.

[Troilus]

Hi Nj,

It can take about 6 weeks for the steroid inhaler to kick in properly.

The effect of the preventer lasts 12 hours and the blue inhaler 4 hours.

And yes, it could be related to your allergies. You will no for certain come autumn when the pollen season is over.

Do you take your peak flow? If not, it would be a good idea to do so, This will help your doctor to see what is going on. ( You can download a booklet to record the results from the asthma U.K. website)

It would also be a good idea to record when, why and how many of your blue inhaler you need to take. This would also be useful to your doctor.

On the subject of the blue inhaler, you do know you take it any time you feel breathless, don’t you? And you can take more than one puff at a time?

I forgot to say - an antihistamine might help. I use Loratadine, very cheap but effective.

[Nj9x in reply to Troilus]

Yes, my doctor told me that I can Ventolin when I feel breathless, but it doesn't give me any relief. I actually feel my throat tightening which I think leads to the shortness of breath. Which could be why Ventolin doesn't give me relief, because it acts on the chest and lungs, not on the throat.

When I asked the doctor about an anti-histamine she said I didn't need one, however I bought Zyrtex pills on my own and I've been taking them for 2 days now. I think they are making me a feel a bit better, not sure yet though. I talked to an Allergologist and she said that the pulmonologist may have rushed to the conclusion that it's asthma as the blood test clearly show to allergies, and the FeNo test showed no lung inflammation.

The only test that pointed to asthma was the spirometry, everything else was in order. I'm really confused at the moment.

[Troilus in reply to Nj9x]

Did they do reversibility testing Nj? This is where they do the spirometry testing and then give you some Ventolin and repeat a couple of tests to see if there is an improvement? That is usually the definitive test for asthma.

On the point of FeNO testing. The last time I had that done it was in the normal range.

Last thing. Have you tried using your Ventolin on a spacer? It might make a difference.

[twinkly29]

Whereabouts are you based (am assuming not UK)? Here, the usual process would be to see GP first who would do investigations and begin/monitor treatment. Said treatment would usually be done in a staggered way, with time allowed for medication to kick in and to monitor its effect before adding on something else. So you might have been prescribed the combination inhaler (plus ventolin) and then monitored for that. Although often it would be a lower level inhaler initially. It seems odd that they've thrown all this stuff at you at once (so won't know which medications are helping) and then done tests 4 days later when it won't yet have kicked in properly (although I suppose they could use these as baseline tests if they're planning on repeating them in a few weeks). I'm confused by their approach so you certainly must be! I'd hope there is some logic to their approach but it's hard to see how they can support you in making sense of all this if there's no evidence of what's helping and why.

[Nj9x in reply to twinkly29]

I'm not UK based twinkly. I know this is a UK forum, however I didn't know where to turn for help. I hope it's not a problem.

Well the process is the same here basically. You go to a GP and once they rule out the usual suspects they send you over to a specialist. However I skipped the process and went straight to a private clinic which is more expensive, but the waiting time for an appointment is non existent.

As I said in a previous post Ventolin gives me no relief at all as far as I can see. My GP was also confused by their approach to treating my condition. I later talked to an Allergologist and went for a check up. She also said they may have prematurely concluded it's asthma as the blood test point to allergies, and the FeNo test showed no lung inflammation at all. The only test that was off, was the spirometry.

The Allergologist's conclusion was that the shortness of breath was due to my throat tightening due to my body's intense reaction to pollen, and that's why the spirometry might have been off.

I have no other symptoms except the shortness of breath. Another weird thing is I feel better when I'm on the move, or when I'm talking. I can have a full-on debate without getting out of breath, or I can walk for an hour and feel nothing. The symptom kicks In when I'm stationary for a while. I also started talking anti-histamines - Zyrtex. I think they are helping at the moment, however it's still early to say for certain.

At the moment I am not only confused, but a little pissed to be honest. I don't know whose advice to talk, and who to listen to. My doctors have been throwing diagnosis at me like I'm a pinyata.

[twinkly29 in reply to Nj9x]

No no, definitely not a problem! I was just interested in the pulmonologist's response as it wouldn't be the usual way here - although I wonder if some private consultants here would prescribe all sorts (for any condition) if getting paid for it! Not that I blame people for choosing to go private if they choose to do so for whatever reason.

The allergist sounds a bit more rational/sensible in approach though! I hope the antihistamines continue to help. 😀

[Hidden]

From what you say, your drs do seem to have rushed into a dx of asthma. There are lots of less common lung complaints, and as the standard therapy isn’t helping I think you should tell your respiratory consultant exactly what’s going on and ask for further investigations. Of course there are different types of asthma too so I’m not saying it isn’t that, just that it needs pinning down more.

Btw, welcome to the forum! It’s 1.30am here so we’re a bit out of kilter with you time-wise, I expect you’ll get more replies when we Brits wake up 😊

[Tugun]

Can relate to the pinyata! It doesn't matter which country you are from. I'm from Australia and there are others from USA and can be all over the world. The only difficulty of course is that it is an English speaking site.

I've told this story before but we had two doctors look into my Step-dad's condition after going in to hospital. A heart specialist and a neurologist - and no, this is not the beginning of a joke. They conferred. The heart specialist came in and said they weren't positive but "they" - the heart specialist and the neurologist had agreed that it was probably his heart. He talked to us for a few minutes and then went out. The neurologist came straight in and said that they weren't sure but that it was almost certain to be epilepsy. When I commented that the other doctor said it probably the heart, he got really angry. They never did decide.

Another doctor at another time came in and said that it was certainly his heart, I asked could it be anything else as others thought it might be epilepsy. He got angry and said, "Well, I'm your doctor now and I say it is the heart and there is to be no discussion". Needless to say I took that little bit of arrogant, tantrum throwing with a grain of salt and lost all respect for him and his opinions. If he can't tell me why he is sure and show me the test results, then he is not someone I would want to work with. Peter's diagnosis was never sure but in the end after many visits to hospital where he was put under the guidance of the original neurologist, he ended up being treated for epilepsy. I was never sure if that was it and the epilepsy drugs didn't work - although they don't always anyway. The heart specialists never prescribed any drugs so he didn't miss out there.

Moral of the "long" story is to keep an eye on yourself. Ask for copies of ALL results so that you can check them and ask questions (The majority of doctors hate that but you need to know and judge for yourself if something is working or not).

If you want to go and visit another type of specialist ask your GP for a referral. My GP is fine with me requesting a referral when I give my reasons. I have discovered some don't like the power going from their hands. Find another GP if this is the case. One got annoyed because I asked for a certain specialist by name. "We don't normally do that", he said. "It's not the way things are done". He reluctantly gave it to me.

Not to make you worried and I know you have had some tests on your heart, but I would double check that - although you did say you can exercise with no problems so your heart is probably fine. You need further tests. You can take more than one puff of ventolin if you are breathless.

Buy an Oximeter and check your oxygen levels over a few days at different times and particularly when breathless and when you feel normal. Write this down for the doctor. It may or may not help but it will give you an idea of what is happening to your oxygen levels. Sometimes however oxygen levels are not the be all and end all of a problem. There is a six minute test they do with someone walking and taking the oxygen levels. The doctor gave it to Peter and me and when he wasn't ready to see us, we kept walking. It was after the six minute mark that Peter wanted to sit down. His heart rate was up and his oxygen down to 74. Sometimes it takes longer than six minutes to discover a problem.

Anyway - I wish you the best.

[twinkly29]

I just want to make it clear to anyone who has misinterpreted my reply to Nj9x that there is no problem whatsoever with anyone from outside the UK using this site, asking for advice, and so on. I was merely interested because the approach taken by the specialist was so different to the usual path in the UK, as I thought was clear from my reply but perhaps not.