Scared and want answers

[MarnieG]

Hi everyone I'm new to this page.

I'm writing in bed as I can't sleep. I'm worried I won't wake up!

I've had mild asthma my whole life which was controlled by the occasional use of ventolin.

I'm a very fit person and run and do CrossFit....well I was until I had a nasty cold last September after doing the great eastern half end since then I've not been able to breath properly! I did notice a few weeks before I was starting to need my inhaler most times I excercised but I wasn't too bothered..now I'm petrified!

I've had full bloods that were normal, spirometry that was normal, I've had 2 chest x-rays that were clear, a neck CT scan which was clear. I've also has a neck ultrasound that showed up a small none cancerous 1cm lump in my thyroid that they say they are not doing anything about. I'm just waiting on results from a chest CT scan.

I have a constant tickly cough that won't go away, a croaky voice and feel like someone is strangling me!

I'm on montelukast and fluteform but feel like they do nothing. It is worse if I think about it.

It's been suggested that I'm panicking and is all in my head!?!

Has anyone else has a similar experience?

I'm literally driving myself crazy thinking I'm going to die in my sleep or I have cancer!

[GoSport]

Having a cold can bring on my asthma, even after the cold has gone but a dose of prednisolone (steroid tablets) have always worked for me and the asthma is gone in around 2 days.

[Gardner62]

Hi MarnieG

I had similar event from November 2017 and only started to feel well and got my energy back gradually at end of 2018.

I didn't get much sympathy from doctor's except one nurse/sister at my surgery. I went back to old remedies meanwhile. It started with a bad virus which some people said theirs lasted 2 months. Then had another bug tummy and sickness. I had constant cough and periods of breathing difficulty and coughing phlegm every day for 9 months. Inhaled Vicks in bowl of hot water. The steam helped. Took drinks of local organic good quality honey in hot water with half fresh lemon juice in it. Took that 2 or 3 times daily for ages. That helps sooth throat. I took pro biotic tabs - Optibac made sure they had

L.Casei in them. I did loads of research on this for symptoms similar to yours.

I still take a regular allergy relief tablet every day even though don't get much hayfever. All this gradually made me feel better. But it was a very slow recovery. Eventually saw specialist in asthma clinic and was given inhaler. I was 62 years old. That was October 18. Still take multi vits with minerals etc. If I feel light headed and breathing is heavy I still go back to inhaling Vicks vapour steam. At these times I also start taking the honey and fresh real squeezed lemons. It does help me. I have recently stopped the pro biotic tabs. At my worst times I would have tried anything to feel well and normal again. I did take Echinacea tabs as well for months it did help and I did not want a serious cough and cold ever again. My cough has now gone at long last. I think the inhaler stops that.

Lots of good luck.

Diane

[Wheezycat in reply to Gardner62]

Good that all this helps you! But personally I would avoid Vicks, as I tend to react on strong smells and the like. And I think I am not alone in that, but we are all different.

[Yatzy in reply to Wheezycat]

I’ve used a steam thingie, really meant for facials, water only , no smells, but the steam helped.

[green881]

I'm very sorry to hear you are anxious. If you wheeze while asleep it will wake you if it's strong enough. Woken at 4am wheezing plenty in my life, just take a puff or two. So please try to rest assured.

It sounds like you developed a new allergy to me, or existing one worse. I got pollen at 30, dog at 40, my sister too and my dad dog at 70! And he is not asthmatic. No it's not in our head, I never knew about the other two until last month. We just don't talk much about our allergies it's old news.

It seems to be a thing getting new or worse allergies later in life. It's supposed to be opposite. Try to figure out the trigger that is the best thing you can do.

[Hidden]

I had an almost identical experience to you, very fit, cycle 100k a week and 2 hours in gym, with very well controlled asthma.

In April 2018 I had a bad cold and after had almost constant shortness of breath (SoB) that would fluctuate, tickly cough (needing to constantly clear my throat), gravely voice and my inhalers didnt really work.

I have been investigating ever since, I have seen a GI and have a hiatus hernia, and Ive seen a ENT.

I am certain that my was/is caused by silent reflux (LPR) but there are a couple of other possibilities.

If you look up laryngopharyngeal reflux there are many symptoms (heartburn is not normally one of them)

I have changed many eating habits and my breathing is significantly better but still an issue, I think I may have some permanent damage to my larynx or vagus nerve (the ENT hinted at this) and that I just have to live with the SoB.

Reflux, GERD and vocal chord dysfunction are often misdiagnosed as asthma.

[MarnieG in reply to Hidden]

That's really interesting. I have been put on lansoprezol incase it's silent reflux but it hasn't improved anything.

During Christmas I did have really bad heartburn for a couple of weeks so it's possible I have it and the drugs are not working.

I have has an endoscopy but it showed up nothing as they didn't do the dye test! They should have done the dye test! I've only just learnt that an endoscopy alone can't detect acid without the dye! I'm annoyed my gp didn't realise this.

Do you mind me asking how you got diagnosed?

[Hidden in reply to MarnieG]

LPR is complicated. silent reflux and reflux are different but potentially connected.

PPIs will help reflux and GERD but should be used short term the long term side affects are potentially quite bad, you should look them up.

PPI dont work for silent reflux (LPR) as this meta study shows.

ncbi.nlm.nih.gov/pmc/articl...

Its a long article you can just read the conclusions (meta studies are the most accurate type)

I also didnt show much acid reflux (slight signs) the endoscopy showed up that and the HH.

Everyone has reflux the average is about 70 bouts a day, the problems come when you reflux more than that or your oesophagus is sensitive (after viral damage) or you have excessive acid.

LPR is either acid getting into the larynx, in which case you cannot lower stomach acid enough to stop it damaging the larynx, the larynx is not designed to come into contact with acid, the oesophagus is, or it is caused by pepsin binding to the cells in the larynx in which case PPIs will not help either.

I am not saying you definitely have LPR but it is worth looking into along with other conditions often misdiagnosed as asthma.

[MarnieG in reply to Hidden]

Thank you for this. So basically the drugs had the same results as the placebo in almost all clinical trials?

I might try eating paleo. I remember reading a book called the paleo solution by Rob wolf. He scientifically backs up his our modern day diet effects do many modern day health problems including the gut, asthma, and Arthritis to name a few.

It might be worth a read again.

Thanks again.

[Hidden in reply to MarnieG]

yep same as placebo for LPR symptoms.

There are many diets to look at.

The acid watchers diet is quite popular, the theory is it neutralises any pepsin. (I havent tried this)

Dont eat big meals, dont eat 3 hours before bed, raise the head of your bed.

Gaviscon advance was clinically show to improve symptoms. (has to be advance)

Good luck, treatment for LPR is a minefield

[Lizziep25]

Hi Marnie my steroid inhaler causes a sore throat , croaky voice and that choking feeling all the ones I have tried do this in fact it says in the patient leaflets that this is a common side effect in my case the steroids cause thrush in my throat, wind pipe and gullet and also cause silent reflux my doctor prescribes flucanazole capsules an anti fungal 200mg a day I usually have a repeat for two weeks treatment but I find 2 to 3 days of capsules are enough to calm the symptoms as they can damage your liver if taken continually I also take a multi probiotic Bio-Kult available from Amazon which really helps and use Gaviscon Advance tabs and liquid as taking proton pump inhibitors like Nexium etc are very damaging to your gut and general health long term. I follow a reflux diet avoiding triggers like tomatoes, onions fried food, chocolate and in my case potatoes, there are several good books on reflux or GERD on Amazon. When you have asmtha life is a balancing act the steroids cause so many side effects but you can’t control asmtha without them. Waking in the early hours choking and breathless is usually silent reflux which causes asthma when the acid reaches your wind pipe it’s unpleasant but not fatal try propping the head of your bed up with blocks so that the acid stays where it’s supposed to be in your tum. Hope this helps I know how miserable you must be, the doctors don’t seem to want to admit that asmtha treatments cause more problems than they cure once on the steroid inhaler merry go round there is no getting off to stay well we have to find solutions ourselves.

Warm regards

Jane

[MarnieG in reply to Lizziep25]

Thanks for replying. It's funny you should say that because I was thinking earlier that maybe my inhalers could be part of the problem.

Until I started having breathing problems 8 months ago, I only ever used ventolin occasionally. This is the first time I've started using steroid inhalers.

I will talk with my doctor about it.

Thank you.

[MarnieG]

Hahahaha. That made me laugh.

[Griffon in reply to MarnieG]

True though , anyone who does die in their sleep is actually lucky !

[green881]

Marnie,

Was your previous asthma due to allergies? What allergies? (you said just occasional Ventolin until the event) As much as the discussion about GERD and silent reflux is interesting, if you were allergic before the most likely scenario is you picked up a new allergy. Certainly some kind of upper respiratory tract virus triggers all kinds of things. My dog allergy started on one night, in the same house I had been to visit for years, same dogs. But I've always been allergic just not that.

My $0.02 is that GERD and reflux and hiatus hernias are quite complicated to accurately diagnose and treat as the cause of asthma. Learning your new allergen and reducing is much simpler for your life than going on paleo. I hope you can find the right ICS and get some space to figure things out. As you can see from other posts I'm a QVAR fan and not fluticasone (which is in the flutiform). I'm biased. Give max dose QVAR a shot for 1-2 weeks and see if it reduces before diving off the GERD platform.