Since my participation in the studies, I have developed seizures – both partial and complex type. A locked-down mental state ensued directly after completing the drug trials, and when I finally had the wherewithal to reach out, I received no assistance. That locked-down state evolved into what I now know are seizures. How is this possible? I don’t know. I was told by NYU that I received the placebo in both drug trials. What I DO know is that there is a direct timeline of before and after: no seizures before the trials, many seizures after. The following is my email
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
Welcome! This is an essay on the human research subject experience. I have PTSD due to childhood abuse, and after undergoing years of treatment decided I wanted to learn more about my condition, contribute to the cause of finding effective treatments and hopefully find a treatment that worked for myself. I volunteered for three medical research studies; one PTSD brain imaging study, and two separate drug trials. Click below to read about my experiences as a volunteer research subject: NYU/Yale PTSD Brain Imaging Study >> NYU/Pfizer PTSD Drug Trial >> NYU/Eli Lilly PTSD Drug Trial >>
I have Complex-PTSD due to childhood abuse: a form of PTSD that is non-combat related. I know…it’s weird. Because PTSD is so poorly understood, I decided to participate in clinical research. After putting my own treatments on hold to be a part of one brain imaging study and two clinical drug trials, I no longer could rely on my previous meds to keep me functional. And to be honest – I was on too many pharmaceuticals, especially when I could have just taken a hit off a joint a couple times a day to control the majority of my symptoms.
My brain is finally starting to really loosen up from 13 days of hell. At one point I thought I was actually going to have a flashback, but fortunately that never happened…I’m so thankful that it didn’t. I wrote this on Thursday in an attempt to document what I was feeling emotionally, mentally and physically. It was not easy, and it ended up taking several hours to write. I’m feeling better, but I am exhausted. I’m getting back up on my feet. Now I just need to dust myself off and get moving again. Thursday 02/19/2015 When it first started
I have a practice on here of being pretty honest about how I’m feeling. Right now I’m in the middle of a big fat FUBAR event. I am certainly dissociating, and have been for several days now. At first I thought it was just going to be a little anxiety attack…nothing unusual. It kept going and growing, but still up until just a few minutes ago I thought it was going to pass. Now I think I might be headed into a full-blown flashback. I’m in a safe place, in contact with my therapist and medical professionals. I am going
It’s been awhile since I was triggered so hard it took days to come down. Still working on it…tired. I don’t feel like “I got this”, but I know I do. White-knuckle days are just so exhausting.