Getting My Head Examined: A Medical Research Study Experience
I participated in a brain imaging medical research study with the purpose of imaging the Kappa Opioid Receptors (KOR) of the PTSD-affected brain. The study was conducted by the New York University School of Medicine in collaboration with Yale University School of Medicine; the NYU investigative team was headed up by Dr Alexander Neumeister, Principal Investigator.
So here’s the story of how an anxiety-ridden girl went all the way from Phoenix, Arizona to New York City just to have her head examined.
If you are interested in participating in clinical research studies pertaining to your condition, there is a link to the website at the end of this post.
Finding The Study
I found Dr Neumeister through researching the endocannabinoid system. There were a few news articles about the work he was doing in that area, so I read some of his work, watched a couple of his panels and through the ClinicalTrials.gov website discovered that he was actively conducting research. I contacted him via email on a weekend, and was shocked to receive a response within 15 minutes of hitting send.
A research assistant was to contact me in a few days, the reply said. As stunned as I was at the quick response, I didn’t put much stock in it. After attempting to get into another clinical trial with MAPS and learning of the huge waiting list, I had serious doubts as to whether they would actually call.
But they did.
Before there was even the slightest mention of getting on a plane there was some difficult preparation.
First, a phone interview with a Research Assistant by the name of Jordan: while she was a gentle and polite as she could be, the questions were direct and triggering. By the time we were finished, I was about to come out of my skin and my feet were a lovely shade of purple and ice cold. After the interview and speaking with Dr Neumeister, it was on to previewing paperwork.
I had to go off ALL medication – and I was on Adderall, Wellbutrin, Bystolic and Xanax. Additionally, I was not allowed to take supplements such as Melatonin or Valerian Root. Benadryl became my only option for sleep.
I was completely off of medication for a full two months before I left for New York. Sleep became almost non-existent, with nightmares every night. Flashbacks returned, and I white-knuckled through them. Lack of sleep and anxiety left my body screaming for sweets. I gained almost 25 pounds.
It felt like all the progress I had made in the past two years not only stopped, but had began slowly heading backwards. Needless to say my therapist was not particularly happy about my decision, but she was supportive.
I was stressed about doing the study. I was stressed about not doing the study. I was returning to that constant state of “ON”, and needed to rest so badly.
FINALLY, after months in a med-less holding pattern, it was time. And in the true hurry-up-and-wait nature of medical research, I didn’t find out it was time to go until four days before departure.
Onward To New York
The journey to New York was a long one, with a short layover in Washington, DC. Our gate is occupied when we land, so we wait. The longer we sit still, the more I want OUT. My ears are starting to ring, my heart is doing backflips, and I feel the familiar squeeze around my throat as anxiety gains momentum.
By the time we deplane I am practically sprinting out of the airport with crazy eyes, sporting a proud red ‘fro. God bless humidity. And ponytail holders.
I grabbed a cab and headed to the hotel. The day has been too long, with too much stimulation. I am still fighting off anxiety and all I want to do is hole up somewhere quiet; and once again I am frustrated with myself for feeling that way.
I was amazed as I saw the New York skyline for the first time since October 2001 – the last time I had been there the city was still smoldering. The smoke and ashes were long gone now…replaced be a single tower that gleamed as the sun was setting.
It wasn’t long before we were parked in front of the hotel – Jolly Madison Towers. It was huge. It was old. It was AWESOME.
I was exhausted, overwhelmed and excited all at the same time. The floor panel above the elevator looks like old brass, and the floors light up in burnt orange as I count them down: 8…7…6…5…come ON…4…3…2…disco. I want to be in my room so bad. SO BAD.
Finally the doors slide open and I’m shocked at how tiny it is – and of the asymmetrical shape. It was like riding in an old car with an iffy suspension. I make a beeline for my room as soon as the doors open.
I toss down my bags and immediately peel off my nasty, sweaty t-shirt, exchanging it for a tank top and cardigan – too warm for this time of year, but it’s cute and just about the only thing in my closet that fits me that isn’t a t-shirt since the weight gain. Ugh, I feel so uncomfortable.
I calm down for a few minutes, call my husband to let him know I am safe, then look out the window and am struck with an unbelievable view of the Empire State Building.
I could not believe that I had actually motivated myself up out of my safe chair at home and was in New York…and taking part in a PTSD research study. It was really happening. It was almost surreal. For the first time in a very long time, I felt proud of myself – a feeling which was promptly interrupted by my stomach snarling for food. No room service…I’m going to have to go out.
I cross the street to the Moonstruck café for food, then retreat back to my room, not getting there fast enough. I’m tired and starting to freeze up.
I crawled into my rock hard bed and began the familiar battle for unconsciousness. The three-hour time difference didn’t help. New city, same routine. After trying and failing to sleep, fighting through and finally getting there with some deep breathing and meditation music, I woke up an hour and a half later all sweaty and hot after some damn nightmare.
To top it off even though I had been so looking forward to finally being able to take a Xanax after the last of the brain scans were run and sleeping oh-so-blissfully on the plane home for the first time in over eight weeks…I remembered that I had forgotten to bring it with me. Shit.
Remember: know what you’re getting into before you agree to participate in ANY research or trial activity!