What do I do now?: LPR Breathing Problems + dietary issues

Let me break down my problem for you.

Timeline
2010-2012: I have severe breathing issues when consuming foods. Terrible reflux. Always coughing up stuff. Can't even bend over at the water fountain without having my gag reflex go off. Waking up several times a night gasping for air then after a few seconds everything is normal. 21-23 years old. Weigh 102lbs. See several doctors. See a nutritionist. Have an ALCAT test done, and get on a elimination or rotation diet of sorts. Feel amazing for the first time in my life. No trouble breathing. Still can't gain weight.

2013:Get on anxiety meds and stop eating wheat. Gain 35lbs. Feel great. Reintroducing some foods into my diet but still no gluten, corn, pepper, ginger, coffee, crab -free (per recommendation from ALCAT diet)

2014-2015: Off of anxiety meds. Start having trouble breathing again when sitting. Can't sit in a car, muchless anywhere for extended period of time without significant trouble breathing. Get back on anxiety meds. Anxiety meds don't work anymore so I drop them.

end of 2015: now I am waking up like 20x a night with trouble breathing. Nothing is helping. Wife discovers through internet that I have LPR. Stop eating late at night, and stop eating junk foods (chips, ice-cream, etc). Taking lansoprazole and have standing desk at work Now I am sleeping okay and waking only 2-3x a night.

end of 2015- spring 2016[present]: Moved out of state for new desk job. sit most of the day at desk, at meetings, constantly required to talk with staff. Now I am having constant moderate to severe trouble breathing all day and night. Feeling like food is stuck in back of throat. Feeling like the interior of my throat is swollen. Lansoprazole, omeprazole, zantac, nothing is working. I feel like I am constantly hyperventilating. Can't talk without being out of breath. Funny thing is it isn't exacerbated by exercise and doesn't feel like the breathing trouble is coming from my lungs. Gone to the ER to no avail. Go to an allergist, only learn that I have a severe shellfish allergy (which I don't really eat that often - but over the course of the past 12 months have eaten and had no reaction) and Vocal Cord Dysfunction (VCD). Put on QVAR 2 puffs a day and Ranitidine 2x a day, with albuterol as needed. Told to do breathing exercises. QVAR, ranitidine and albuterol have no effect on problem and breathing exercises make things bearable but don't eliminate trouble breathing most of the time. I can breath in through my nose and out my mouth (a breathing exercise) some but it doesn't seem to fix things always and sometimes I get sudden dizzy spells from it. My diet is now crazily reduced to almost nothing because I seem to be having severe breathing trouble for 48 hrs (requiring me to go to the ER) every time I eat something that I used to be able to eat. I have lost 10lbs in 3 weeks and am fearful that it will continue to drop. My perpetual lack of oxygen is giving me headaches. My sleep is terrible. My wife is convinced I am going to die or that she will die from the stress of worrying about me. I am literally living moment to moment and day to day. Below is stats on everything. I am about to start Dexilant but my body is deprived of nutrients I am worried about the effect it will have on me. It is 60mg once a day.

TESTS DONE:
Thyroid blood work (TSH and Free-T4) - 2016: Normal
Chest-XRay (2x - once in 2006 and once in 2015): Normal
Endoscopy & Colonoscopy (2012): Normal
Allergy Test: Shellfish
ALCAT: Severe (avoid including derivatives) - corn, honey, corn-syrup, bell peppers, ginger, coffee, crab
Spirometry: Did poorly
CATscan (2011): nothing
MRI (2011): nothing

CURRENT DIET:
Avoid everything. Eat white chicken meat cooked in crockpot. Eat brown rice pasta or brown/white rice. Spinach. Greek yogurt + raisins. Aloe vera/coconut water-juice. Wild rice cakes.

CURRENT MEDS:
about to start Dexilant. Benadryl (as needed). QVAR (inhaler). Albuterol (inhaler - as needed)

SPECIALISTS SEEN:
ENT, ER doctors, family doctor, nutritionist, Allergist, gastroenterologist (once, going again soon)


THE QUESTION IS....

What do I do? What do you think is wrong?

Hi Wendy:

First of all, diagnosing your condition from a search on Google is not always the answer. Your last endoscopy was in 2012, it probably should be repeated. I would ask to have a manometry done to measure your swallowing function. Did your doctor say you had acid reflux or GERD? I'm not sure taking PPIs will help your situation, this is something you need to speak to your doctor about. Also, I would think about taking an anxiety medication again, because anxiety might be making your symptoms worse and you have had some relief from it in the past. I know you are using inhalers, but have you gone to see a pulmonary specialist?

Sharon

Marthemar said...
This sounds a lot like some of the stuff I went through. I am surprised no one has ordered the 24 hour pH test yet for you. Do some research on what tests are done to diagnose LPR (silent reflux). The only way I was able to keep mine under control at the end was to take ibuprofen every 4 hours to keep the swelling down. It turned out the issue was not necessarily from acid coming back up, but I was continually regurgitating in my throat and lungs and did not even realize it. I guess I had just gotten used to it. After I had the test and they told me what was going on, I started to pay attention to how many times I had that yucky taste in my mouth in a day. It was a lot. Mine ended up being a combination of allergies, asthma and LPR. Good luck, I know how miserable this all is and hope they find the issue(s) for you really soon!

I'm glad to hear that I am not alone on this. Do you still take ibuprofen every 4 hrs? What dosage? Doesn't that give you stomach bleeding / damage your gut more?

What does the 24 hr pH test diagnose or do?

How did you find out what allergies you had? I have had a scratch test with only shellfish turning up as an allergy.

Sadly, asthma meds haven't helped at all in resolving the problem.

I've never heard about reflux getting into the lungs. Would you mind telling me more about that?

Manometry measures your swallowing function and the pressure in your esophagus. If your swallowing function is weak, you can feel like your food is getting stuck. I went to a pulmonary specialist because my reflux was causing inflammation in my airway and aspiration into my lungs. I was being treated for asthma, when in fact my issues stemmed from my sever acid reflux.

Sharon