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My quality of life has been on a rapid decline.. hoping someone can help.

Andysabz profile image
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I am 27 years old, a year ago happy and healthy until after a bike ride, the day after I had trouble breathing. After months of this getting worse and worse I finally was diagnosed with LPR (Silent Reflux) and started taking Ezomeprazole which for a period got it under control. I then started having more and more issues breathing and was diagnosed with adult onset Asthma as well (it seems the reflux issue unfortunately caused the Asthma gene to kick in).

Since then I have had a constant battle, most days I am gasping for air for at least 30% of the day, up to the whole day. It is making my life miserable in that I can't seem to find anything close to a treatment for this, let a alone a cure. It is making me overall unhappy and unable to look forward to things any more.

Tests:

- I have had an endoscopy which showed a slightly relaxed lower sphincter which is causing the silent reflux

- Hystamine Challenge (showed moderate asthma) Manatol challenge (inconclusive for asthma) and Lung Function test (normal lung function) even when having breathing issues, I have a good Peak Flow

Symptoms:

- Hard to get a breath in and often feel like I can't fill my lungs (this is really bad, not just uncomfortable, often very worrying, have been close to calling 999 many times and have been to ER twice)

- When I have one of these (several daily) episodes, I have irregular breathing in that I am not breathing in a normal flow and forget to breath out and seem to be breathing at the top of my lungs in a irregular pattern and gasping

- Constant mucus in the back of my throat thats hard/impossible to bring up (not sure if this is reflux, phlegm, nasal drip or a combination of everything)

- I don't really get a sore throat but doctors when looking often say when they look at my throat that it looks like i'm about to have a cold, I also seem to get swelling in my Uvula (dangly bit at back of throat)

- I don't have any issues with anxiety or panic attacks, that is definitely not causing this

- Triggers: pollution, smoke (I don't smoke), having a cold/flu makes it REALLY bad, unknown triggers causing this to happen daily

Current Treatments:

- ASTHMA RESCUE: Sometimes Ventolin works really well, most of the time however it has a moderate effect and I am still tremendously uncomfortable.

- ASTHMA PREVENTERS: I have tried Seretide & Symbacourt (dry power disk/turbo) and also at the moment Symbacourt's inhaler version but I always have the same issue, they work really well initially but after a few days of using them, my breathing gets noticeably worse, to the point of being unbearable and I have to stop taking the preventers and within half a day will notice my breathing improves (doctors can't wrap their heads around why this would be happening??)

- SILENT REFLUX: I sleep on a wedge pillow and take Ezomeprazole 20mg morning and night, seems like it keeps it pretty under control but hard to tell as it's 'silent' reflux and unsure if its breathing problems from this or the Asthma. I also take Magnesium, Vitamin D3 & Calcium.

- NOSE I'm always sneezing and have a runny nose so I have begun taking a nose spray that has a small amount of steroids and allergy control, seems to keep this relatively controlled

- I try deep breathing 10 breaths in a row when I have issues, sometimes this helps, sometimes this has no effect whatsoever

Does anyone else have these issues?? and does anyone know anything else I can try or do? I am at my wits end and feel very alone with this and feel like Doctors/Specialists aren't able to help any more :(

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Andysabz
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dinadina profile image
dinadina

the only thing I can think of is to look for a hidden asthma trigger. Mine was the apartment next door had cats and my apartment complex has shared ductwork, so I was getting cat dander through the vents. I am very allergic to cats. I moved and am fine now -- fingers crossed. But for awhile it was very scary to suddenly have asthma and not know the trigger.

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