We are here to extend our lives by THINKING DIFFERENT

Friday, March 6, 2009

Secret Weapon

Some of my biggest CF issues throughout my life have been inflammation - mostly from allergies but the past few years it's also due to residual inflammation from colds. Oh yes and having a company retreat in Vegas where I was dealing with cig smoke EVERYWHERE and perfume pumped in to cover the cig smell. Ugh.

I have a long, tortuous history with coughing so hard I barf from bronchospasm due to inflammation.

For years (like 1989-2004) I tried various techniques like hot tea, eating food, breathing through my nose and out through my mouth. The highlight was always lettuce coming out of my nose from coughing so hard, throwing up, and now catching it in my mouth.

I was in the ER in 2004 due to bronchospasm (and not being able to catch my breath) after cleaning my house (I hired a house cleaner from there on out) and the doc gave me what I now call my secret weapon: benzonatate (or tessalon pearls, their brand name).

Basically, it numbs the stretch sensors in the lungs. Yes, I know our docs don't like us to take cough suppressants but sometimes you need HELP to cut off the cycle of bronchospasm. Benzonatate works in 15-20 minutes (although my experience is more like 2 minutes) and lasts for 3 hours. Drowsiness can be a side effect but I've never experienced it. Oh yes, and it's been on the market since 1954 (it's an Rx - FDA approved!)

My CF doc is OK with Rx-ing me it now because he knows I use it responsibly and only in those horrible situations. I do enough mucus clearance with the Vest and exercise that of course I'm not surpressing mucus clearance ....

Not sure why more CF docs (and even mine) don't talk about this. But it's a true God-send.....


  1. Thanks for the info Amy! Gess has had a lot of issues with vomiting from coughing so much. It's going on the list :)

  2. I have come to the conclusion that most of my brochospasm-horrible-can't-stop coughing episodes are due to allergies. Lately a benadryl pill has been doing the trick. But I'll keep in mind your secret drug if it ever stops working.