Alright, so tomorrow I leave for NYC again – one last round of trial meds to go! I’m excited to try it, and I’m excited to be done with it for awhile, because once I get back I can once again focus on my health. For the past six weeks I haven’t been able to take any medications or supplements (such as Melatonin) that might alter the brain scans, and have been under certain nutritional restrictions as well; for example, no caffeine or grapefruit. It feels like things have been on hold, and I’m ready go push forward. One week
Back in my hotel room after a long day and night! I flew in on a redeye and the flight here was crowded and I was squished in my seat by a rather large fellow with a robust snore. At least he slept well. 😉 It was 78 degrees when I left, 10 degrees when I landed. Freaking cold!! But I love it. I made my way to the hotel, got an early check-in with no problem, and after a good breakfast I popped over to NYU for my follow-up bloodwork and last official visit for the Pfizer drug trial. Easy
Rough Day. Rough Night. Getting up this morning was a little rough since I didn’t get to sleep until around 5AM! But I was up at NYU bleary-eyed and bushytailed at 8:30 AM as per schedule. Screening went smooth, I’m getting used to the drill by now. More assessments, blood work, ECG, physical, please pee in this cup, etc., etc., etc. It was just a couple of hours, then I was free to leave. Again I have to say that the staff there is truly amazing. They are understanding and gentle, and treat me with respect. But god I feel
Just ONE. MORE. DAY. Today is what’s called the Dosing Challenge Study – based on the flip of a coin, one of the following happens: I receive a placebo I receive 40 mg of pomaglumetad methionil (the study drug) I receive 160 mg of pomaglumetad methionil About an hour before dosing, I have to participate in a behavioral task/triggering session. Electrodes are attached on my body to record muscle movements, mainly under my eyes to track my blinking. Sweating will also be measured. I will receive mild electric shocks to my wrist while listening to bursts of extremely loud white
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
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
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.
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