Just a report as to how the trial was...
I sat in front of Dr. A and for the first time in 14 years someone told me I have HPPD. That in itself was well worth the trip. I now don't have to convince doctors and psychologists that I have some strange disorder that none of them have ever heard of. Obviously I can't say the name of the drug that I was given but I can tell you this; the drug was never meant as a cure all. It was more of a spot treatment and its half life was less then a couple of hours and has the potential to be pretty harsh on the liver. This trial was obviously about defining mechanisms of HPPD and I was happy to be a part of it even though I was in the minority of people who the drug didn't help.
Dr. A is a brilliant man, but he is a man nonetheless. I have been suffering some pretty heavy depression, frustration,anxiety and insomnia for the last several months, which the depression and frustration was very new to me. After talking with him, I was a bit surprised at his suggestions. He first told me that he didn't have any firm evidence that SSRIs are contraindicated in HPPD, and if clinically needed, he would treat many folks with them without difficulty. Obviously we are all different, but I know from my experience that effexor made me think I was dying and I was a bit surprised that he was against, or unaware of, what I may have mistakingly thought was a staple of HPPD lore. He then made the suggestion that I get on a daily low dose of Klonopin and refuted any ideas of developing addiction or withdrawals from the drug, which knowing of a lot of users experiences here is pretty difficult pill to swallow (pun intended). I was very surprised but I do understand that when you put someone up on a pedestal as I had with him that finding out he isn't perfect is all the more disheartening.
Above all, it was a great experience and he was extremely knowledgeable and I suggest doing the trial if only to finally get a diagnosis and see the awesome Boston area. Me and my wife spent 6 days there and it was by far the best vacation I have had in awhile. I was able to get him to talk to my psychologist and finally say I have HPPD and that I need CBT over SSRI for my mild depression.
Please believe me when I say that I am not bashing Dr. A. I thought that the expense was so well worth it to talk to the man. I just wanted to share my experience and thoughts.