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
I have been debating on whether or not to share my current meltdown status here on my Facebook blog because I try to keep it as positive as possible, and don’t want to disappoint anyone by coming across as weak. So on the advice of a very dear, strong friend – I will be honest. I’m a fucking wreck. Since the New York Times story about the canned PTSD studies went to print I’ve been fighting off feelings of guilt, shame and fear. As more articles are published I keep seeing my name and the words “childhood sexual abuse” and
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