ashleighheath

Suzy, Thought I'd throw out my experience to you in hope that in might help you or someone in the POTS community. After being "best guessed" and treated by my (ex) GP for seasonal asthma with an albuterol inhaler (which is bad for POTS) last year, I went to see an allergy/asthma specialist that quickly found that I had neither allergies nor asthma. The 1st pulmonary test indicated that I had an inspiratory problem but no expiratory issues (which would be indicative of asthma). He personally administered a 2nd pulmonary function test, and was able to coach me through a more suitable inspiratory cycle. He surmised that I most likely had VOCAL CHORD DYSFUNCTION and referred me to a specialist. Because respiratory issues are frequently attributed to POTS, but the reasons(s) are not necessarily explained, I had been wondering if my breathing problems could be chalked up to the POTS and it seems like they can be indirectly. The allergy/asthma doctor had never treated anyone with ANS dysfunction but he immediately seemed to narrow down some good theories. Number one: our systems are "twitchy" which matches with the VCD phenomenon. Secondy he asked if I had reflux. Which I do/did. And I had been ignoring and not treating b/c I thought it was more of a nuisance than anything. Well, reflux exacerbates VCD. After seeing the Otolaryngologist (ENT) and he confirmed the VCD diagnosis, as well as provided me with a NON-ALLERGIC RHINITIS diagnosis, and he provided breathing therapies (similar to Babette's), daily sinus rinse (for the rhinitis) and referred me to a GI to treat the reflux. He said normally he would treat the reflux, too, but because of my ANS dysfunction he wanted me to see a GI. As we all know, there are many "motility" issues with POTS, including reflux. So in a back-handed sort of way my breathing problems were the fault of the POTS. Remarks in the postings regarding breathing difficulty at night (which I can relate to) would make sense if reflux is involved b/c it tends to be worse at night. I hope that you get some relief and some answers. If you have any questions regarding VCD, please post back.

The dinet "Research" tab has information about this study here in the U.S. http://www.dinet.org/studies.htm >>scroll to bottom of page, it's currently the last study featured. For ready reference here is the contact information: Please refer to this study by its ClinicalTrials.gov identifier: NCT00633880 Michelle Anthony (512) 225-0240 michelle.anthony@chiltern.com Cynthia Corona (512) 225-0241 cynthia.corona@chiltern.com ------------------------------------------------------------------------------- I contacted Michelle Anthony about the study and she was very helpful about coordinating a study site/area contact. However, they are not testing the medication on POTS patients so I will not be participating. Note: This is my first post, so I hope that all is in order.