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 Both drug trials are no longer active; Dr Neumeister no longer works for NYU; all data from ALL THREE studies is trashed; and there is a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 >>
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
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
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
I really need to get some sleep…I have to be at the hospital for screening at 8:30. The past few nights my parents have been in my dreams again – not doing anything, not saying anything, just watching me and staring at me. It hasn’t been scaring me really; the best way I can describe it is that it has been creeping me out. I really wish I could get the hang of that lucid dreaming thing. Ah well…meditation time. Onward, onward, onward.
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
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
Taking a little time to regroup after this last round – and to gear up for the next study. It’s hard to believe that this time next week I’ll be back in New York! Once this is all over with I’ll be posting links to some news articles and other information about the science behind these trial medications. For now, some cuddle time with Cassidy. She’s as glad to have me home as I am to be home. 🙂
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.