Monday, November 28, 2011

Adventures in rTMS

                I have lived with chronic depression most of my life. Some of my other posts delve into the “why” of my condition, but this one chronicles some of my quest for healing. It has been a long journey, filled with a number of antidepressants in a number of dosages and combinations with little success. The meds kept me from killing myself, but not from feeling miserable about being alive. I’ve explored alternative treatments including meditation, acupuncture and herbs, all with no results. Then I heard about rTMS.

My journey to rTMS began a few years ago, when I first heard about it from my friend Angie. She had a friend who had completed the procedure through a clinical trial and had amazing results. I was intrigued, but learned quickly that it wasn’t offered anywhere in my area. It had also already received FDA approval, which meant that psychiatrists were now able to charge about $15,000 for the full treatment, a cost that generally was not covered by insurance.

                Still, I learned all I could about the procedure. Repetitive Transcranial Magnetic Stimulation (rTMS) uses magnets similar to those used in MRI’s to stimulate neurons in the brain. In fact, it was the recurring mention of good moods reported by patients receiving multiple MRI’s that led to the theory behind rTMS.

                I should mention that I have no expertise or formal training on this subject. The information I provide is based on my own experiences and interpretations, so be sure to research further on your own.

                A company called NeuroStar is the only company currently (Nov ’11) FDA approved to manufacture the device for rTMS. I visited a psychiatrist in nearby Chattanooga and was able to see the device and learn more about it. It looked like a really high-tech hairdryer like those you would see at the salon. The participant sits down and the device is lowered onto his head. Treatment takes less than 45 minutes per day, but must be continued for five days per week, for four to eight weeks. It is outpatient, requires no anesthesia of any type, and can be done before work or on your lunch hour (no driving restrictions after treatment). Pretty convenient if you have $15,000 and live near one of the few cities where treatment is offered. I don’t meet either of those qualifiers.

                I heard more about rTMS this fall at a NAMI convention. There was a representative from NeuroStar there to answer questions, but I already knew all the info he had to share. What caught my ear was when a PhD from Vanderbilt spoke about rTMS as the direction that mental health was heading. He had no financial gain for the treatment, but was still endorsing it. He also mentioned that other companies besides NeuroStar were conducting clinical trials to test the procedures efficacy on other conditions such as bipolar disorder, post-traumatic stress disorder, Parkinson’s disease and more.

                Ah! More companies! More clinical trials! Clinical trials mean free treatment in exchange for being their guinea pig. I returned to research mode, and was met with success.

                I visited www.clinicaltrials.gov, a comprehensive website of all clinical trials seeking FDA approval currently being conducted. Through its handy search features, I was able to identify all clinical trials investigating rTMS to treat depression. Though NeuroStar had received FDA approval, any other company wanting to manufacture a similar device had to go through the same process.

                I emailed every university doing the study. I realized that taking six weeks of medical leave from work and paying for travel and housing would still be considerably less expensive than paying $15,000 out of pocket for the treatment, so I was willing to go anywhere that would take me. Fortunately, the Medical University of South Carolina (MUSC) responded, and they were one of the few locations within driving distance to me.

                MUSC started with a phone screen. They asked me uncomfortable questions about my history, medications, suicide attempts and any other awkward topic they could think of. I had mixed emotions when I learned I was screwed up enough to make it to the next phase of screening.

                MUSC had me come to Charleston for my next screening. They had to see me in person, and probably wanted confirmation that I was serious about my willingness to travel for the study. Apparently, they had a lot of interest in the study, but few who actually followed up with screening and commitment to the study.

                At the initial screening, I was provided with lots of information about what it meant to participate in a medical trial. All my treatment would be provided at no cost. All my results would be confidential. I had a 50/50 shot of receiving a “sham” (placebo) treatment. Zoiks. Did I want to give up six weeks of my life for a sham?

                Since I was in Charleston, I figured I’d see if I qualified before I decided if it was worth the gamble. I completed three hours of interviews, asking more details about the most intimate details of my life. I had drug tests and pregnancy tests and blood tests. I felt more alone than I had in a long time, and definitely could tell I was a part of an experiment in a science project.

                I left, feeling depressed but hopeful about the study. The multiple researchers who had interviewed me had to convene to discuss my viability for the study, and would let me know the next day if I was in. The drive back to Oak Ridge was long and reflective. I was filled again with self-loathing, hating that my life had gotten so out of control that I was willing to be a test subject to try to get help. It felt like selling plasma to pay the bills (which I’ve done before, too). You do what you have to do but it doesn’t always fill you with pride.

                The next day, I got the call. I didn’t qualify for the study. That really left me feeling low, believing I was too messed up to qualify for a study about messed up people. My disqualifier was that my last suicide attempt had been within the last five years, which put me in a high risk group that wasn’t allowed to participate.

                The guy at MUSC told me that there was another study that I might qualify for that also involved rTMS. This one didn’t have the suicide disqualifier and, better, it didn’t have a sham treatment. I was guaranteed to receive real rTMS. The distinction in this study was that it was testing having two contact points on the device versus four contact points. Essentially, it was testing whether the magnets worked better when directed at two spots on the brain or four.

                I was intrigued but afraid. My previous screening had hit me hard, and I didn’t know if I had the strength to go through it again, especially with the chance to be rejected again.

                I had a work meeting later that day. I work in mental health, so topics relevant to my own struggles are often discussed. That day’s meeting was about hope and recovery and resiliency, themes that run strong in my work but are sometimes forgotten on a personal level. Though I was there professionally, everything that was said hit me personally. I knew I had to continue to have hope, and for me that meant doing the study.

                I had to take another trip to Charleston (14 hours roundtrip) for another screening. I had to answer more questions, dredge up more horrible memories, pee in a few more cups, and wait another nerve wracking 24 hours to find out if I was in.

                It paid off. I made it into the study. I would start in two weeks, right after Thanksgiving. All I had to do was rearrange my entire life for six weeks, find a place to live in Charleston, and explain to everyone that I was disappearing for a while to try to stop wanting to die. No sweat. Let the adventure begin.

2 comments:

  1. I had NO IDEA what all was involved in finding this trial. As always, I am in awe! Hang in there.

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