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.
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 Both drug trials are no longer active; Dr Neumeister no longer works for NYU; all data from ALL THREE studies is trashed; and there is a
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
Heading in for my last fMRI and workup…then on to home this afternoon! Today will be a few hours of some final assessments, and I have to turn in my little medication cooler and dosing diary. There will be a final workup…ECG, vitals and another slew of paperwork to finish. I will have one more fMRI session, then I am homeward bound. I am so ready.
So I had one of those crappy starts today. After deciding to sleep in just a little extra today I dreamt of my sister – not really a nightmare, but emotional. I woke up, made myself a couple peanut butter and jelly sandwiches, then proceeded to spill milk everywhere! Soggy sandwiches and (argh!!) SOGGY PHONE. The speakers stopped working on my phone, but luckily I was able to take it apart and dry it out with a hairdryer…and it works! Whew. So I said screw it and chucked the sandwiches in the trash and am enjoying a plateful of buttermilk
Sleep. The Good Kind. And NYC Shuts Down I am becoming fully convinced that there is nothing quite as healing as a good night’s rest. The past few nights I’ve had the best sleep (and NO nightmares!!) I’ve had in years…I can’t even remember ever sleeping this well. It’s been a deep, restful sleep. Not the kind you get from a sleeping pill. Just a very natural feeling rest. Is it medication? Is it exhaustion? Again, only time will tell. I should find out if I am taking a placebo or medication by May. I know that in just a
I’ve been out and about for over 3 hours now. I felt a little anxious on the subway…but I think that was out of concern that I might miss my ferry. It didn’t seem to be the usual something bad is about to happen gut-gripper I usually get. I’ve been able to focus on the sights and enjoy them without getting compelled to run back to the hotel. Oh! And one of the ferry crew began banging loudly on the aluminum benches to scare away the birds…and I didn’t jump. Like, at all. How cool is that? I love good
The hard part is over, and I now have in my possession the remainder of my trial medication. I report back to NYU in just under a week for the final fMRI and to turn in my medication dosing diary. I feel…well, I feel great. Comfortable in my own skin. A feeling I haven’t had in a very long time. Is this the result of the medication or could it be the placebo effect? Again, only time will tell. Whatever it is, I am giving myself permission to enjoy it. 🙂 I reported to CBI early this morning for another