Treatment Day Three 11/30/11

Today was not off to a banner start. I awoke with that old feeling of wanting to escape. Perhaps I could call Dr. Li and cancel my appointment, just for today? But I resisted temptation, and drug my butt into the shower and out the door, late enough that I had to drive rather than walk or bike.

                I had a little bit of a headache after yesterday’s treatment, which is the most common side effect. Dr. Li said I could take pain relievers, but it hadn’t been bad enough to warrant that. After years on anti-depressants, I try to avoid adding any other pill to the mix even occasionally, out of resentment towards medicine in general. I should appreciate how much it has helped me, but instead I view it as a reminder of how defective I am.

                When I start a new exercise program, the first day is usually great, the second day and has some soreness, and the third day is miserable. My rTMS seems to be following the same pattern. Today, the gentle tapping I felt two days ago now felt like a hammer tapping. It still didn’t hurt, per se, but it wasn’t exactly pleasant either.

                After another thirty-seven minute treatment (37 is my favorite number, btw), I went on my way, feeling neither better nor worse. I checked out some local thrift stores to avoid going back to the lonely apartment (with no cable, I might add).

                When I did return to my dwelling, I felt pretty good. I took only a small nap, mostly out of boredom. I looked at jobs some more, but realized that most of the seasonal stuff is already filled, and there isn’t much out there for someone from out-of-state looking for occasional work (Hello, I’m from Tennessee and don’t know anyone here. Would you like me to babysit your kid?) . Tomorrow I’m going to go to a temp agency that is looking for holiday banquet servers, which could be a nice fit. I decided against the jewelry store, mostly because they want lots of weekend work. That makes sense, of course, and I wouldn’t mind, except that I have friends and family coming to visit me during some of my weekends here and I need that more than I need $8/hour.

                I went to the Laundromat later in the evening to wash my new thrift store finds, and to escape my four walls that started off as being so cute and have quickly become suffocating. I haven’t been to a Laundromat in years. They’re not any more fun than I remember (though they are a good place to blog, as I write this while my dryer spins), and I think they’re a lot more expensive than they used to be.

                I sooo want to report amazing things, to say that I feel cured already. Alas, that is not the case. The doctors are very evasive when I ask how long it takes typically to see results, but they have said they’ll send me home at four weeks if I’m not seeing at least some improvement or earlier if I start doing any worse.

Treatment Day Two 11/29/11

                Today had an amazing start. I was just awakening when my phone rang. I contemplated not answering, especially when I saw it was a number I didn’t recognize. Fortunately, my hatred of voicemail (and not wanting to have to check it later) compelled me to answer.

                The person on the other end of the call was someone who I rarely hear from, but come away delighted every time I do. This call was no exception. She had read a previous blog post, and was calling to encourage and cheer me on.

                During the call, she made me feel like I was being brave, not just for doing the treatment, but for sharing my story. She reminded me that all of us have some kind of issues we struggle with, but we keep them to ourselves. But knowing that others have it rough somehow makes the journey a little easier, so maybe we should all share a little more. She said it all in such an awesome way that I started feeling like a hero as I mulled the conversation over in the shower.

                After I was clean, I checked facebook and my email, only to find more inspiring words. Some shared words of encouragement for my journey, others told me of their own battles with depression. If nothing else, I know that this treatment is already helping me by giving me an outlet to discuss what I’ve kept bottled up for so many years. I hope that helps others, too.

                I decided to walk to treatment today. From my apartment, it is about two miles, and I always enjoy the quiet reflection I experience during a walk. I thought it would be most beneficial for my walk back, to process any icky feelings that treatment may dredge up.

                When I arrived, Dr. Li informed me that some of the people from Cervel, the device manufacturer, were visiting. He asked if I minded them watching as I received my treatment. How could I say no, when I obviously was now a superhero and owed it to the world to share my journey?

                Despite my earplugs, I was able to hear some of the conversation going on around me during my treatment. The Cervel folks had some questions about the placement of the device on my head. It went quickly and smoothly today, but Dr. Li explained that that was because we had spent time yesterday on determining my perfect placement. From now on, he just placed it based on the work he did on that first day.

                At some point, Dr. Li showed them a hair cap, the kind used for home hair highlights. I couldn’t quite hear well enough to know what it was used for, but it sounded like perhaps some people have to wear it during treatment. All I can say is that I’m glad I no longer have the big hair I had in the 80’s, because it seemed like it would be used to minimize giant hair.

                Dr. Li also told them that the device is set at 77% motor threshold for me, a percentage that varies with each person and is directly related to how much juice he had to put through the machine to make my hand twitch. Being the competitive person I can be, I wanted to know if 77 was high or low compared to most, but it seemed inappropriate to ask.

                The Cervel people studied the device. They asked Dr. Li more questions. Interestingly, they had no questions for me. It seemed like, since they designed and built the device, they’d be more interested in my response to it than in its technical specs. I guess they assume that will all come out in the study results. Or perhaps they didn’t quite know how to say, “I’m sorry you want to kill yourself. I hope our device works. Mind if we ask a few questions?” Perhaps they were just being professional and I’m being overly-sensitive, something I’m prone to. Still, it made me appreciate Dr. Li’s small talk from yesterday, ear plugs and all.

                On the walk home, I wasn’t giggly, but I wasn’t too down either. I was reflecting on just how aware I was that I am now a test subject, an object to be studied. I didn’t feel like such a hero now.

                A man approached me, obviously mentally ill and probably homeless. He wanted to tell me about the birthday party he had had two years ago, and which took ten months to plan. He showed me a picture of his girlfriend of two years, nine months, and four days. We prepared to part, and he asked me, “Why are you walking? Are you exercising to lose weight?”

                I knew the question was harmless, just as I knew that the Cervel folks weren’t intending to dehumanize me down to a test subject.  He didn’t mean that I’m a fat, disgusting cow and they didn’t mean that I’m a freak to be studied. I knew that, but I didn’t feel that.

                I went back to my apartment with familiar feelings rising within me. I wanted to escape how I was feeling, something that has led to dramatic actions in the past. I’ve learned a lot through the years, though, and just escaped through a long nap. Sure, I could have done better, like going for a run or giving myself a pep talk about how awesome and gorgeous I am. But I also could have done worse, and some days choosing to live is a victory.

                After my nap, I knew I had to find something to occupy my time. When I’m busy, I don’t dwell as much about the bad thoughts. Staying occupied has been my primary coping mechanism for a number of years now. So, I went looking for a job. It’s always better to make money than to spend it, and that was the kind of productivity I needed: something that I was obligated to, not just wanting to do. I can decide to blow off an art class or a movie, but I have too strong a sense of responsibility to blow off a job.

                I picked up an application at a jewelry store that was looking for holiday help. I don’t even know if it’s the kind of job I want, but it gave me an excuse to get cleaned up and out of the apartment. That’s really all I needed right then, just that reminder that I look decent when cleaned up and feel like a normal, competent human being out in the real world.

                When I first started researching rTMS, I found a reasonable amount of scientific/medical information, but almost no firsthand accounts from patients. I hope that this blog helps soothe and reassure someone else. My experience probably will not be the same as anyone else’s, but at least they will know that “normal” people go through this kind of stuff, too.

                To my morning caller who made my day, I’d love it if you’d send me the name and author of that book we discussed. I suspect it might be great reading during my time here.

rTMS Treatment Day One

                Over the last week, I became increasingly tense about my impending treatment. Thanksgiving was an odd combination of family, anger, tears, and turkey.  Did I mention I had to stop taking medications for the study? :) But, finally, the day has arrived.

                I was on time for my 9am appointment at MUSC. As I am receiving rTMS as part of a study, I had to undergo more preliminary tests to build their research data. This included yet another drug screen (aced it), depression screening (which indicated that I’ve become even more depressed since my last screening two weeks ago), and a new test that was slightly evil. It tested my response times and cognitive ability. A few example questions:

Look at the following words and tell me the color of their print (try it, trickier than it looks):

Red

Green

Blue

Green

Red

Blue

Blue

Red

Repeat back these letters and numbers, saying the numbers first in numerical order and then the letters in alphabetical order (I didn’t get to see these on paper, they were just given orally):

DK4L8T           (ANSWER: 48DKLT)

J97M2QX       (ANSWER: 279JMQX)

                Between tests, I had to wait in the lobby. There was an older man there waiting for his wife, who was undergoing a different treatment for a different condition. When I explained that I was there for magnetic therapy, he told me he knew someone who had had it done. I asked if it was successful, and he told me this story:

“This man was in his sixties, and had struggled with depression for most of his life. He had tried several medications and had even undergone a few rounds of electroshock therapy. Nothing worked. His mother, who was in her eighties, said her one wish was for her son to know happiness before she died. Because of magnetic therapy, her wish came true.”

Hope. That’s what it’s all about. Thank you, kind stranger. And thank you to all those who did trials before me that enabled me to be on this path now.

Finally, it was time for the treatment to begin. At least I could definitely say I was starting at a very low point, so any change should be noticeable. The screenings and tests had left me at my lowest.

                First, the doctor had to determine placement of the device on my head by testing for a reflex response. When the device hit the right spot (on the front left side of my head), it caused an involuntary twitch in my right hand. This meant we hit jackpot. While looking for it, he apparently hit the wrong spot too, which caused my left hand to twitch so hard I could have knocked myself out with it. The body is creepy amazing.

I had to wear ear plugs for the procedure, though it wasn’t exceptionally loud. I would describe it as being about as loud as a washing machine is when it’s spinning off-balance. I couldn’t have any earrings or facial jewelry on. Otherwise, there was no prep required on my part.

I sat in a chair similar to those in dentists’ offices, leaned back to a reclining position. The device had two arms that came down from either side to form a teepee on my head (specific to the Cervel device, not all rTMS machines).  They were padded and not uncomfortable.

Once the process begins, the device cycles between approximately five seconds of tapping and thirty seconds of inactivity, alternating between the two for thirty-seven minutes total. The tapping had two contact points on my head, with the stronger one at the spot on the left front of my head that caused my hand to twitch, and the second near the top center of my head, slightly to the back and right (again, specific to Cervel). They had warned me that the tapping may cause a headache, but I had no troubles. The pressure from the device was comparable to what I would experience from tapping on my head with my own finger, only much faster.

The doctor tried to make small talk with me as I went through the procedure, which was frustrating since I had in earplugs, had a mildly noisy device tapping on my head, and couldn’t move my head to try to at least read his lips or see his gestures. Still, the time went by reasonably quickly. He pushed the device arms aside, validated my parking, and sent me on my merry way. And “merry” it was…

I don’t know yet if it was the excitement of having finally started the procedure, at being done with the evil questions for the day, or if the procedure was already working. I just know that I felt giddy. Not just happy, I was actually on the verge of giggling. I’m not a giggling kind of girl, so this was exciting. The feeling lasted for an hour or so, and gradually faded, though I didn’t get as down as I had been before the procedure. It’s fairly typical for me to feel worse in the morning than the afternoon, though, so this left me with my usual afternoon feeling of not bad but not good.

rTMS works by activating neurons that aren’t firing. During the procedure, it gets them going, so it is actually possible that my great mood was from the neurons firing and, thus, the procedure working. Eventually, they went back to sleep until tomorrow's treatment. Ideally, the neurons will over time get used to being active and will start firing on their own, helping me to be more  happy and less depressed.

I’m very excited about today’s events, but will remain skeptical until I see a more lasting effect.  Stay tuned and follow the journey with me!

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.