haven't been here for a while, but I hope everyones been doing ok, considering.
Well, since I was last here, I eventually got me a 2nd opinion, and now, they claim its either vcd or reflux or chronic cough (apparently) syndrome, that is giving me asthma like symptoms.
Am just relieved that they are allowing me to carry on getting help by taking my inhalers. The inhalers do help me, so it makes me feel confused as to why they think its other things like reflux.
I find it all bewildering, but over the next few weeks or so I'll be having a barium and a trial on anti reflux meds too. I might have to have a camera thing done, but not yet.
its all odd, because if its reflux then how come this extreme cold weather (to name but one trigger) is making me feel tight chested, wheezy and breathing harder todo, I just don't get it!!! Suppose I should be grateful I'm being reassessed even though its not for asthma.
My lung cons confused me at last appt by suggesting that my chronic tight chest and recurring chest pains were actually due to worsening reflux? When my only question had been if she could tell me if pain was lung or heart related. Since then have had two costa icu visits for cardiac issues and they say they reckon it might be intestines goving the pain.
Sorry very unconstructive remaros from me but yes docs are very annoying and mysterious at times. Glad to know youre getting it all checked over though.
Take care.
Rose xx
When doctors propose/investigate non-asthma causes, I think they are just trying to be thorough and make sure that they are treating the right problem. It isn't a denial of your symptoms or symptom perception. If they treated you for bronchiospasm/inflammation in the lungs, but in fact there was a different cause, the problems would not go away.
For example, if VCD is an issue, then your airways are definitely being blocked. However, the blockage is happening further up in the airway at the larynx. VCD can also be reactive and triggered by some of the same things that cause bronchiospasms, like cold air and exercise which is why it is so hard to tell apart from asthma.
Also, it isn't necessarily an either/or situation. Acid reflux can get inspired into the lungs causing inflammation and making you more vulnerable to bacterial infections which in turn trigger asthma.
Hi,
Just to say I've been through this myself over the last year and its actually helped reach the.correct diagnosis (for me brittle asthma and VCD) which means I'm now getting the right help for my symptoms.
It is confusing while you are going through it as it makes you feel at times that medical professionals are questioning whether you 'want' to have asthma but having come through it it is worth it to get the right help.
Good luck and hang in there!
X
again, I haven't been here for a long time, as i've had lots of tests after seeking further help.
It was thought I might have vocal cord dysfunction etc, but I wondered why the inhalers helped me.
Now that I have had a variety of tests for lots of things, the conclusion is I have 2 conditions:
asthma (which I always thought it was)
and
acid reflux (which I never knew I had).
so what I will say to you is this - if in doubt definitely push it to get a further opinion at a different hospital, and make sure you have a good gp who is willing to help as well.
good luck guys.
as for me I continue with the inhalers, and now with tablets for acid reflux as well.
It is not nice, but it feels a relief to finally learn exactly what my conditions were. I am sooooooooo glad that Asthma UK nurses are there on the other end of the phone as their advice has been exceptionally helpful.
thank you!
in reply to
yes its me again, and once again its been a long time since I posted or anything, but its been a busy time and so I thought I'd post another update.
To recap see the below posts - a variety of docs couldn't really give me a straight forward answer what was wrong with me (sensitve airways, vcd, chronic cough syndrome, poor breathing technique, etc etc etc), I always suspected asthma but never imagined how complicated things would get.
Last year I was told I have acid reflux and that acid reflux tablets would ease the asthma, but things have now changed again since then - as well as being told that I do indeed have asthma, I was also referred to a gastro-entorology department, who carried out further tests and found I also have a hiatus hernia, which is the cause of the acid reflux, and the h h can indeed provoke asthma (but not necessarily be the cause of asthma).
So now, over the next few weeks I hope to be on a more effective tablet for the hh/acid reflux - none prescribed have been well tolerated or effective up to now. I'm not sure which type of hiatus hernia it is, but they rattled off the type that leaks from the stomach up to the chest hence it aggravating my asthma.
Since I last posted up to now, the acid reflux tabs have not made any difference to any condition, but thankfully it is now officially accepted I should stay on my inhalers, and one has been switched - the brown one, I'm on modulite 200, which is more effective than the weaker brown inhaler I was on previously.
And so it goes on....
I hope that if you aren't sure whats wrong, that not only will you seek help and get 2nd opinions, but you push for other things to be examined by other departments as well. One thing this has all shown me, is that ""breathing physiotherapists"", Thoracic teams, and ENT teams alone don't know enough about asthma or about the causes of acid reflux, that its important to check everything out and not think that one consultant knows it all, in my case they didn't, and its taken nearly 2 years for me to get this far, but at least I have got this far.
good luck guys
again, I haven't been here for a long time, as i've had lots of tests after seeking further help.
It was thought I might have vocal cord dysfunction etc, but I wondered why the inhalers helped me.
Now that I have had a variety of tests for lots of things, the conclusion is I have 2 conditions:
asthma (which I always thought it was)
and
acid reflux (which I never knew I had).
so what I will say to you is this - if in doubt definitely push it to get a further opinion at a different hospital, and make sure you have a good gp who is willing to help as well.
good luck guys.
as for me I continue with the inhalers, and now with tablets for acid reflux as well.
It is not nice, but it feels a relief to finally learn exactly what my conditions were. I am sooooooooo glad that Asthma UK nurses are there on the other end of the phone as their advice has been exceptionally helpful.
thank you!
I have significant reflux issues which have badly affected both my asthma and the number of chest infections I get. I was getting recurrent and refractory pneumonia which wasn't responding to treatment, and it wasn't until I went to a specialist lung hospital that they figured out the reason why - reflux.
The single biggest thing which has helped, is sleeping with my body raised. I cannot overstate how much difference this has made to both my symptoms and chest infections. i was previously barely lasting a month between courses of antibiotics, and in the last year I have only had three courses in total, with much better asthma control.
You need to raise the head of your bed at least 30 degrees, preferably as high as 45 degrees, and try it consistently for a good period of time. Reflux meds like omeprazole, ranitidine etc do not stop you physically refluxing, they just make what you are refluxing less acidic and therefore less damaging. Domperidone or metoclopramide can improve gastric emptying so there is less sitting around in your stomach for you to reflux. Also avoid eating if you can for 2-3 hrs before bed, as you want as little in your tummy as possible when you are lying down. When you are in bed your stomach is much more on a level with your throat and its easier for liquids/foods to come up the oesophagus (hence the need for raising the head end of the bed, as its harder for stuff to travel uphill!). I was taking 80mg of omeprazole a day with little effect before raising the head end of my bed. Now I only take 20mg a day with huge improvements since being more upright at night
thanks so much for your post, which was very interesting.
Could you please tell me what you used to raise that part of the bed?
I am assuming something is needed to stuff under the mattress to raise the upper body part of the matrress, but what to use todo this?
If there is a particular place which stocks such items please can you provide details, if this forum allows that.
thanks so much.
Hiya, there are varying ways of doing it...
If you want to keep your body in a flat position (i.e. not bending at the hips) one way is to raise the head end of the bed by placing raisers under the feet of the bed. The only problem is to achieve a high enough raise the whole bed ends up on one hell of a tilt! You can do this with a few bricks under each foot at the head end, or a few yellow pages.. its hard to achieve a sufficient angle this way though (or to stop you sliding out the bottom of the bed).
You can place something under the mattress to do the same. My hubby is handy with wood, and he made a wooden frame to go under the mattress which sloped, and then put the bed slats on top of that, with the mattress on top, so that worked fairly well.
Or, you can get foam wedges of varying angles to place either under the mattress or on top of the mattress, depending on whether you want to sleep directly on it or not. I havent used them personally, but if you google foam wedges you can find a few. This website had posture wedges which look like they may give you a 30 degree raise, and further down the page is a 45 degree wedge too:
Unfortunately Ive ended up having to get an electric bed as my problems were so severe, it enables me to keep in the same position all night as I don't slide down the bed (it raises my legs to prevent this). You might find if you slip you need pillows or a wedge under your thighs to stop this.
I also have a more portable electric option to allow me to still have holidays and stay with friends - just one night of sleeping flat means hospital and 10-14 days of IV antibiotics for me It cost me a few hundred quid though..
Depending on whether finances are an issue, you can get head end mattress raisers like this, but they won't stop you sliding down the bed in your sleep like a full profiling electric bed:
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It cost me a few hundred quid though..
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