Anyone else been through this..? - Asthma UK communi...

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Anyone else been through this..?

Idontknow748
Idontknow748

For the last month I’ve had symptoms doctors can’t tell me what’s going on and it’s really frustrating

I had period pain and took naprogesic pills to ease the pain (naprogesic pills contain naproxen and apparently naproxen triggers asthma) which I didn’t have at the time.

Minutes later I started to feel really breathless like really breathless

Went into emergency and was given a chest x ray and blood tests

Everything came back normal and they recommended me to do a spirometry

About a week after I had a spirometry done and they confirmed I have asthma because my lung function improved with the use of ventolin second time round I did the spirometry

Was given ventolin and told to use it whenever I needed to

Long story short

Ventolin didn’t help and I was still having breathlessness attacks constantly I couldn’t walk much or even do house work let alone feeling breathless and weak

Went into emergency again and they said that I might have a lung clot so they ordered a vq scan and that also came back normal

But they noticed my heart rate at rest was about 115 which should’ve been 60 and walking it went up to 140

Doctors then were confused if it was my heart or lungs causing this breathlessness

Doctor ordered more lung function tests including a carbon monoxide test and I passed pretty much all of it then went to a cardiologist and had a echocardiogram done which I’m still waiting on the results

Doctor now says it’s most likely asthma so give ur steroid inhaler a try everyday

Then he says it could be something else but won’t give me a ct scan as he says lung functions results are good

What the hell do I do

I don’t have a proper diagnosis and I’m still breathlessness every sec of the day

Ventolin gives me some sort of relief but not majorly

So over it I need help

44 Replies
oldestnewest

Yes similar

I've had lots of heart tests as they couldn't definitely prove I had asthma and the heart tests all came back normal too

I'm *managed* with inhalers and after 5 years and 2 respiratory consultants they have decided its "likely" to be asthma as they cant prove it's anything else and my symptoms improve (massively) with the medication I am on... which is a lot for a guy they cant decide has asthma

They did in the end decide I had cough variant allergic asthma

Chip

Hi chip

Hmm so interesting

Makes me feel better that I’m not alone in this situation

What medication are you using ? And how’d they test u for the cough variant allergic asthma ? Did you have any allergy tests done?

I’m going crazy because I don’t wanna be using steroids and not really needing them but at the same time I want to use it incase it does help later on

I know what you mean

they can do a total IGE test and then specific IGE panels to identify what it is your allergic too

And actually the respiratory consultant told me I wasnt asthmatic and discharged me he must have got some more information from some tests after that as he then wrote a letter to my gp saying *probably* asthmatic based on this this and that.. in the meantime he had told me I should consider stopping all medication as I wasnt asthmatic (this was as he was discharging me).... so I did and I lasted 6 weeks and ended up with a nasty wheeze from both lungs and a chest infection

But before that I had been coughing so hard I nearly passed out and couldn't stand up

They where the worst 6 weeks ever

I take:

spiriva respimat

Duoresp spiromax

Montelukast

Fexofenadine

And good old salbutamol (but dry powder not ventolin)

And I stay well most of the time like that

I should probably have that test done and see what I’m allergic too maybe I’m always around triggers

Wow if I were you I would’ve been so frustrated especially if the respiratory consultant said you’re not asthmatic because I would’ve hoped the specialist would give me an answer

But I’m happy for you at least now you have an answer and can control your symptoms (:

Hopefully I’ll be able to do the same too

Also were u getting breathless?

Wow lots of medication but if it works it works !(:

I’ve got the ventolin and the steroids

Should start with the steroid inhaler and see from there(:

Omg wow your heart rate was really high

Yea no my heart rate was high with no medication in my system either and I’m still waiting on my echocardiogram results which is so ridiculous it’s been a week and the doctor has not called

I’ve called like three times but they keep brushing it off saying when the doc gets free🤕

Yes I was breathless and it felt like a band round my chest and I'd cough.... the band made the docs think heart but after everything my heart is good... blood pressure is a little now and hr is high but other than that it's not my heart

And it all gets better/goes away with the medication I'm on and there is no other explanation for it

Good luck I hope you get some answers

That’s really good to hear (: glad you’re doing well with the medication

And thank you 😀😀😀

Ps

my heart rate was recorded at 185bpm and I was on the floor and just woken up from a sleep... this is as I was being diagnosed/rediagnosed asthmatic so I had no medication at all in my system, they like to try and blame the medication now but I tell them its lower than the highest its ever been recorded pre-medication so not buying it

How long have you been using the steroid, presumably brown (?), inhaler? I think it can take a couple of weeks, used twice a day as prescribed, to kick in.

Hi twinkly

Yes the brown inhaler

And to be honest I used it twice but I noticed it made me more breathless which idk if it is or I’m thinking it is

I did hear it takes awhile to kick in

Maybe I should give it a shot since doctor did prescribe it to me but my fear was using it and actually not needing it because they didn’t directly give me an asthma diagnosis

I don’t know what to do ):

I would use it religiously for a few weeks and see. If it doesn't help after a proper trial, it won't have harmed you but at least you'll know and can go from there. Obviously if you're noticeably unwell using it, go back to your GP.

I guess yes I should give it a go

Thank you for the advice (:

I will keep updating whatever happens !

Js706
Js706
in reply to Idontknow748

Quite often the way they give a diagnosis of likely asthma is with a trial of treatment - so trying the steroid inhaler for a few weeks and seeing if things improve :)

They could also give you a peak flow meter and get you to keep track of that twice a day and see if it varies at all over a couple of weeks (if you're particularly worried about the steroid inhaler you could ask to do that, but if you've already had spirometry with ventolin it probably wouldn't add much extra information).

I know a lot of people really don't like the idea of steroids but the dose you get through an inhaler is very low compared to steroid tablets because its targeted to the area with the issue, so major steroid-related side effects are extremely unlikely.

What inhaler did they give you to try? You also say it made you cough - did your doctors give you a spacer to use with it at all?

elanaoali
elanaoali
in reply to Js706

Ring asthma UK helpline the nurses will help you go through everything you asked here mon-friday 9-5pm 0300 222 5800. They are brilliant. Also look at their website asthma UK

Thank you for that elana

Can I call from Australia?

Think that would be a bit expensive! Look up for you your country asthma charity. asthma.org.au/ they have a helpline too

Thank you (:

Idontknow748
Idontknow748
in reply to Js706

That’s really interesting to know that’s how they test for asthma

Well if u say steroid inhalers aren’t harmful as also twinkly mentioned too

I shall trial it and maybe actually get some relief because it’s been a month of misery stress and anxiousness

And as mentioned earlier you’re a med student so I will go by what u say hahaha

Yes I was using a spacer but I mentioned getting breathless after two times of using the steroid inhaler but I don’t know if I really was or it’s all in my head

But thank you for the advice (:

I will keep updating whatever happens

Being anxious can also mimic asthma symptoms so in effect makes you feel worse. Not that one can just choose not to be anxious of course, but sometimes knowing that can help.

Yes it’s true being anxious and stressed does make the symptoms a whole lot worse but it’s so hard not to be when all u can think about is your health ):

Absolutely agree. And trying to work out which feeling has which cause is s nightmare too.

Mhm exactly

Do you have asthma yourself ?

Yes, adult onset about 10 years ago. Brittle/difficult depending which phrase is the current one - but rubbish either way!

Whether one's asthma is mild, severe or anywhere in between, the general thinking is that it's easy to manage but there is so much more to it than "a bit of a wheeze and a puff of a blue inhaler" with symptoms, presentation, responses, treatment, other things that present similarly etc. Think we all deserve a medal. Or a day off asthma!

Mhm I definitely do agree with you it’s not that easy

Doctors say just use your inhaler when you need it like it’s even that simple

No one understands till they go through it themselves

I just wish ventolin made me feel somewhat completely normal after taking it

Hopefully I’ll get to the bottom of it all (:

Hi Idontknow748. I had lots of tests that all came back negative too. Js706 has suggested you try a spacer if you do not have one your GP can prescribe it. This will help with the cough when you take the inhaler.

Hi blue breeze Yes I’m using a spacer but I’ll keep up with the steroid inhaler as everyone mentioned above (:

Also what were u diagnosed with blue breeze if all results came back negative ?

Eventually diagnosed with asthma as the ventolin helped in peak flow before and after test and spirometry tests.

That’s good to know (:

An answer to your symptoms is better than no answer at all

Hi,

I'm assuming you are no longer on naprogesic pills and probably should stay clear of all non-steroidal anti-inflammatory drugs (NSAIDs). Aspirin is one of these. Paracetamol or Panadol are not NSAIDs.

I'm allergic to the propellent in the brown and blue inhalers so I use a powdered form. They are available. There is even a powdered form of Ventolin- the blue inhaler(reliever). Ventolin can come in rotacaps which use a rotahaler. Many doctors and chemists don't know that this still exists so, if that is the case, assure them that it does. I live in Australia and have to order it from the chemist who gets it from GlaxoSmithKline in Melbourne.

If you are having trouble with the brown inhaler (preventer) try a powdered form of preventer.

As you had such a strong reaction with your breathing, I would advise you to have Ventolin (fast acting reliever) on hand.

Idontknow748
Idontknow748
in reply to Tugun

Hi tugun

Yea definitely not using anything like that again

And you said you’re allergic to the propellent in the brown inhaler so what symptoms did it give u? Because for me i realised it makes me breathless a little extra

And what exactly does the rotacaps do compared to the normal ventolin ?

Thanks for that because I’m from Australia too

Also like to add I notice ventolin doesn’t dramatically work with me ): I do 4 puffs

Ugh I just wanna know what’s going on

Tugun
Tugun
in reply to Idontknow748

Hi,

Sorry for the delay in replying. The rotacaps are a powdered form of Ventolin so no propellant. Walked into the chemist to discover that GSK discontinued the rotacaps without telling the pharmacist or me. (They have it on their website). I have been on a roundabout trying to access a powdered form of salbutamol before I ran out of the amount I had left. We eventually got the Easyhaler from UK so I am seeing how that goes. Not sure of it yet. Glad I've still got some of the old stuff - but only 2 weeks worth left.

With the preventers I found that my lungs seemed to dry out. The phlegm seemed much harder to cough up and then it would stick in my voice box and I would cough and cough to try to clear it. Everything got harder to clear - my lungs and the phlegm in my voice box until I got scared that it may not clear the next time. This came about two months after I started the various preventers and at that point I stopped it. It took about a week or two to go back to normal. My normal is asthma which responds quickly to Ventolin. On a good day I would use Ventolin twice or three times a day.

Probably the last time I tried a preventer, I didn't drink as much water as I do now so maybe I was dehydrated.

The CFC free propellant in the ventolin medihaler basically gave me asthma. When they changed over to a CFC free medihaler, I very gradually got worse. Usually the Ventolin would immediately free up my lungs and I could easily cough the phlegm up and out of my lungs. It gradually got harder to do that. My lungs tightened and I still remember hardly able to breathe with the steel band feeling in my lungs (only time I have ever felt it) and my blood was zipping with the amount of Ventolin in my system. I had taken plenty of Ventolin with no real help. My chest was still tight. I contemplated going to the hospital but lasted to the next day and went to the chemist. I won't go into the conversation but it made me think and I realised that my lungs had gradually deteriorated over the 9 - 10 months since I had commenced the new CFC free Ventolin medihaler. The chemist still had some of the old version - not CFC free. So I bought them and tried it. Within two weeks my lungs were back to normal. That is I still had asthma but the Ventolin loosened it and the phlegm was once again easy to cough up, my lungs weren't tight anymore and I never had that feeling of a steel band over my chest again. When I ran out of the older medihaler I moved onto the powdered form of Ventolin in the rotacaps with no problems. I am now trying the easyhaler but I haven't moved onto it as seamlessly as I did the roatcaps. It is a powdered form of Ventolin and not bad but I've woken up a couple of times with a feeling of something in my throat. It has a smaller opening - like a hose on a narrow outlet rather than a spray. The rotacaps had a wider opening with slightly more powder - even though the amount of salbutamol is the same in both. The easyhaler powder seems to catch more in my throat but it seems to be better if I breathe softly rather than the dynamic breath I would take with the rotacaps. We'll see how it goes.

It seems odd that the Ventolin doesn't help you that much - sound slike further investigation is required. Was your high heart rate due to the Ventolin ( which happens) or do you normally have a high heart rate?

I hope you are doing well and I wish you all the best.

PS Magnesium is helpful for a lot of things. Keep investigating. You will eventually work out what helps you.

Magnesium deficiency is the cause please research magnesium deficiency and symptoms of magnesium

Thanks for that information

I’ll test for it

Does it make you breathless if you’re deficient in magnesium?

Yes it can leave you breathless the test doctors check is magnesium levels in your blood your blood has only 1% magnesium the other 99% is in your bones teeth soft tissues and organs so your blood could show99% which looks good but is only 99%of 1% you could still be deficient

Thank you so much for this information!!!!!!!!!!!!!

I will definitely be checking and keep updating whatever happens (:

Please research l-lysine it will help reduce your viral load in your liver

And what do u mean by l-lysine reducing viral load in the liver

Is that a medication

It’s a amino acid

It’s found in certain foods

Thanks for the info(:

Hidden
Hidden

I’ve had similar issues for the last six months. All tests come back clear but I’ve been on steroids for 18 weeks because my breathing is really off, but no one can tell me why!

Desperate to find an answer and like you am wondering what the hell to do!

Idontknow748
Idontknow748
in reply to Hidden

Hi wheezy

Oh no that’s bad sounds like me

Have steroids worked with you? I only recently started using it

I wish I had an answer it feels like I’m suffocating in air like a fish):

Did u have a ct scan done?

Search up sarcoidosis apparently doc mentioned that to me as possibly being a cause but won’t give me a ct scan!):

Hoping it will all resolve without anymore hospital visits cos i really don’t know what’s happening

I’ve been doing my own research and found something called Vocal cord dysfunction which mimics asthma symptoms

Some of the symptoms from vocal cord dysfunction is what I have but then again idk

): I’m stuck too

Hidden
Hidden
in reply to Idontknow748

Steroids have kept me breathing. Every time I try to come off them I have an asthma attack and have to go back on them.

My CT scan appointment came through this mornings so I’m hoping that will give me some answers.

Thank you for your suggestions. I will look them up!

Hope you get some answers soon too.

Idontknow748
Idontknow748
in reply to Hidden

I need to really start using my steroids often maybe it’ll help but someone on the forum suggested different medication called intal apparently safer than steroids that if my symptoms are triggered by environmental factors but I don’t know what’s the cause haha

Oh wow really sounds like my problem

I’m constantly having attacks

Hopefully your results are nothing worrying but let me know (: and thanks !

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