After a couple weeks of those panic-like auras, I had another grand mal seizure at around 4:30 this morning. Only the second one in my life. Chewed up my tongue pretty good, wet the bed, and have a headache. I feel just exhausted. My husband took good care of me and rolled me over…unfortunately I bit his finger a little. 🙁 I just don’t know what to do. I didn’t expect to be put into this situation. Onward.
Sometimes I wonder if NYU had any idea of how often the safety of their human research subjects was being placed at risk – but how could they not know? The FDA dinged them on multiple violations for the Pfizer drug trial (Protocol #B0541013), however that study wasn’t the only one in which NYU’s regard for subject safety is questionable. An earlier brain imaging study (S12-01521), a collaborative effort between NYU and Yale, had problems as well. As I mentioned in my open letter to NYU, one of the incidents that I believe jeopardized my safety was being put on a
Dear NYU, I am angry. I trusted the ethics and reputation of your institution implicitly, and in return I was misled, I was used, and my safety was disregarded by your researchers. And the more I think about some of the things that happened during and leading up to those studies, the angrier I get. I was told that my participation could possibly result in a delay of treatment for up to 60 days. However due to NYU’s delays and false-starts, that length of time was far exceeded, to the tune of several months. Do you know what it’s like to
Well…that didn’t go quite as expected. It’s been a while since I’ve posted, but there have been some changes in the studies that I’ve kept quiet about for quite some time. I wasn’t really ready to share my disappointment. I left with the hope of the drug trials getting further approval and extending. I had an offer of participation from Dr Neumeister in longer-term trials, should they become available. Unfortunately, that’s not what happened. Both drug trials are no longer active; Dr Neumeister no longer works for NYU; all data from ALL THREE studies is trashed; and there is a
I’ve been going ’round and ’round in circles in my head over the past few days…and getting nowhere. The results from the brain scans are still sinking in, and have me wondering if it means that I’m going to feel like this forever… I’ve been invited to participate in two drug studies this fall, which should have me excited – and it does in a way – but other ways it has me scared. Again, no meds at all prior to the trial, so I’ll be going through the insomnia/nightmare dance all over again with no option for relief. And
I was to present at NYU at 9AM sharp. I forced myself to leave my room to get some breakfast before I procrastinated until it was too late to do so…something I do on a very regular basis. I was exhausted and nervous, even more than my own norm. As I checked out of the hotel I wanted to ask the woman at the desk how to get a cab, but was too embarrassed to do so – so I reached back…way back to my Sex in the City addict days, rolled out the front doors to the edge of
Getting My Head Examined: A Medical Research Study Experience I participated in a brain imaging medical research study with the purpose of imaging the Kappa Opioid Receptors (KOR) of the PTSD-affected brain. The study was conducted by the New York University School of Medicine in collaboration with Yale University School of Medicine; the NYU investigative team was headed up by Dr Alexander Neumeister, Principal Investigator. So here’s the story of how an anxiety-ridden girl went all the way from Phoenix, Arizona to New York City just to have her head examined. If you are interested in participating in clinical research studies pertaining to