As unfortunate as it is, I regrettably post an update. First, let me open by saying, once again, that medical research is an important area of medicine. And what I’m posting about does not reflect the ethical behavior typically exhibited of the research community. They are dedicated individuals who work relentlessly, tackling the questions that have no answers, the unsolvable. This blog has been around for several years now – and I shared my experiences in my participation in three PTSD clinical studies. It’s pretty much how this website began. I documented my participation in the NYU/Yale PTSD clinical studies
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 Both drug trials are no longer active; Dr Neumeister no longer works for NYU; all data from ALL THREE studies has been trashed; and there is
My brain is finally starting to really loosen up from 13 days of hell. At one point I felt so terrible I thought I was must be going to have a panic attack, but that never happened. It just felt like something was building, or tingling, or… something. It’s so difficult to describe. I wrote this on Thursday in an attempt to document what I was feeling. It was not easy, and it ended up taking several hours to write. I’m now feeling better, but I am exhausted. I’m getting back up on my feet. Now I just need to
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 have been for several days now. At first I thought it was just going to be a little anxiety attack. It kept going and growing, but still up until just a few minutes ago I thought it was going to pass. This feels weird and awful. I just feel…ugh. It’s hard to describe.
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
This question, while highly offensive when asked in the usual manner, deserves an answer. Those who suffer from PTSD day after day and year after year deserve answers. Do you feel jumpy all the time? Find it impossible to get to sleep? Have recurring nightmares? Are you angry or irritable for no apparent reason? There’s a reason for that, and it has nothing to do with character flaws. Below you’ll see brain scans of three different people: – one who experienced trauma and developed PTSD (PTSD) – one who experienced trauma and did not develop PTSD (TC) – one who
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 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/trigger session, then I am homeward bound. I am so ready.
So I had one of those crappy starts today. 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 pancakes and a hot cup of coffee before heading out for one last adventure. Onward. 🙂
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 (NO nightmares!) I’ve had in years… I can’t even remember the last time I’ve slept this well. It’s been a deep, restful sleep. Not the kind you get from a sleeping pill. Just a very natural feeling rest. Despite the rock-hard beds at the Jolly Madison. Amazing location, beds of steel. 😉 Is it medication? Is it exhaustion? Again, only time will tell. Dr Neumeister tells
I’ve been out and about for over 3 hours now, off scouting the Statue of Liberty inside and out, walking Ellis Island, and enjoying the ferry. I felt a little anxious on the subway… simply out of concern that I might miss my ferry. All has been well. This flying NYC solo thing isn’t half bad. In fact, it’s quite lovely. So much to take in – I have always loved the City. It is so nice to have the opportunity to explore it at my leisure. Still, now I am ready to head back, put down a hot meal
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 medication, could it be the placebo effect, or just me being me? Again, only time will tell. Whatever it is, I am giving myself permission to enjoy it. 🙂 I reported to CBI early this