I'm long overdue in recounting my experiences participating in the fMRI study in London last month, and I don't want you readers to be in suspense any longer... The fMRI study was a fascinating experience. Although I braced myself for the possibility that deliberately subjecting myself to triggers in a confined space where I was unable to "flee" would be akin to water torture, it was unlike my wild imagination assumptions... In fact, I've experienced three other MRI tests prior to this study and believe it or not, despite some of the sounds triggering my misophonia and making me temporarily uncomfortable, I was more miserable during the first one to check out a knee injury than I was for this study. (Granted, that was because my then boyfriend broke up with me the week before and when I told the technician that I like classic rock, she put on a radio station that played back-to-back love songs the entire time I was being scanned. Talk about torture!) But I digress...
The first day of testing I found myself confronted with a potential Tube (subway) strike, so I decided to walk over to the facilities. It was a bit of a hike, so I didn't get there as early as I would've liked. By the time I filled out the forms, the researchers immediately started me with the hearing tests so that we didn't miss our scheduled time-slot for the fMRI. I was brought into a small room with a table, chair, and computer monitor. The walls, floor, and ceiling were covered with warm gray fabric, I assume to lessen any extraneous sounds. The researchers put sensors on my fingers, another sensor band around my diaphragm and then gave me a little four-button device to rank the sounds that I heard ("1" for no annoyance, "4" for the most annoyance.) They had me listen to a series of everyday sounds - each sound playing for about 3-5 seconds, during which time I had to focus my attention on a plus symbol in the middle of the screen. In the pause between sound bytes, the screen asked me to first rank how annoying the sound was and then asked how much that particular sound triggered my misophonia. There is a difference! Some sounds were very annoying but didn't trigger my misophonia. Other sounds triggered my misophonia big time! A few sounds didn't bother me at all. This went on for about 10-12 minutes, after which time one of the researchers would pop into the room to make sure I was okay. After about five sessions of the 10-12 minute series of sound bytes, the researchers unhooked me from all the sensors and then we went over to the fMRI.
The first day of testing I found myself confronted with a potential Tube (subway) strike, so I decided to walk over to the facilities. It was a bit of a hike, so I didn't get there as early as I would've liked. By the time I filled out the forms, the researchers immediately started me with the hearing tests so that we didn't miss our scheduled time-slot for the fMRI. I was brought into a small room with a table, chair, and computer monitor. The walls, floor, and ceiling were covered with warm gray fabric, I assume to lessen any extraneous sounds. The researchers put sensors on my fingers, another sensor band around my diaphragm and then gave me a little four-button device to rank the sounds that I heard ("1" for no annoyance, "4" for the most annoyance.) They had me listen to a series of everyday sounds - each sound playing for about 3-5 seconds, during which time I had to focus my attention on a plus symbol in the middle of the screen. In the pause between sound bytes, the screen asked me to first rank how annoying the sound was and then asked how much that particular sound triggered my misophonia. There is a difference! Some sounds were very annoying but didn't trigger my misophonia. Other sounds triggered my misophonia big time! A few sounds didn't bother me at all. This went on for about 10-12 minutes, after which time one of the researchers would pop into the room to make sure I was okay. After about five sessions of the 10-12 minute series of sound bytes, the researchers unhooked me from all the sensors and then we went over to the fMRI.
(Image from http://www.sfnic.ucsf.edu website.) The researchers and I were all ready to go for the next phase of the study, where they did a basic scan of my head without any additional sounds - I assume to get a baseline for comparison. Unlike previous MRI scans that I had in years past, this time I had a plastic cage encasing my head that had a mirror on top of it that, when I was in the machine, basically gave me a view out the other end, so it didn't feel like I was in such a confined space. Since this was just a baseline scan of my brain, they gave me special earplugs to muffle the various noises of the machine itself. (Those earplugs were SO good, I couldn't hear the researcher through the headphones trying to give me instructions.) They also laid a "panic button" on my chest which when pressed, would immediately stop the MRI and move me outside the confined tube. (Not that I used it, but it was comforting to know it was there.)
The scan itself wasn't bad, probably since I've had scans like that before. At times though, I tried to figure out what the MRI noises sounded like - one reminded me of the fast beeping sound I'd hear if something the computer was warning me that I left something on top of my keyboard. Once the scans were over, that day's tasks were done. I left the facilities with one of the researchers, who also has misophonia, and we had a lovely conversation over coffee around the corner. We exchanged misophonia experiences and thoughts about where research needs to go. We talked about how our misophonia affected our relationships with family and others. It was nice to speak with someone who not only understands what I'm going through, but is also working towards a better scientific understanding of the condition.
The scan itself wasn't bad, probably since I've had scans like that before. At times though, I tried to figure out what the MRI noises sounded like - one reminded me of the fast beeping sound I'd hear if something the computer was warning me that I left something on top of my keyboard. Once the scans were over, that day's tasks were done. I left the facilities with one of the researchers, who also has misophonia, and we had a lovely conversation over coffee around the corner. We exchanged misophonia experiences and thoughts about where research needs to go. We talked about how our misophonia affected our relationships with family and others. It was nice to speak with someone who not only understands what I'm going through, but is also working towards a better scientific understanding of the condition.
The next day essentially combined my experiences inside the sound room with those of the fMRI. They again connected me up to pulse-ox and other finger sensors as well as the diaphragm band. I again wore the cage with the mirror on my head but this time, the mirror showed me an image of the computer monitor that I stared at the day before. I held onto the same four-button remote, but this time it was resting on my stomach so I couldn't really see it. They also laid the "panic button" on my chest again. I was so covered with wires and devices, I felt like I was in a sci-fi movie. The researchers then played a couple of test sounds to make sure I could hear them over the MRI sounds. (I wound up asking them to crank up the volume so that I could hear the sounds over the "fast keyboard beeping" sound of the MRI in the background.) They played the same series of 3-5 second sounds with pauses for me to press the remote buttons that I heard in the sound room. (Thank goodness, they didn't play the sound that is my absolute worst trigger, otherwise I might have instinctively tried to plug my ears - which is of course bad because you don't want to move an inch during MRI tests.) I remember clenching the hand that wasn't holding the remote any time I heard sounds that triggered my misophonia and as much as I wanted to close my eyes and think "happy thoughts" instead of focusing on the plus sign on the screen while listening to the sounds, the whole point of doing these tests is to see how the brain reacts when exposed to triggers. So, as much as I was aware that I was clenching my fist whenever a trigger played, I knew it'd only play for 3-5 seconds and eventually it would stop and move on to the next one.
I'm sure that anyone participating in the study probably felt the same desire to be able to brave through the discomfort so we could provide good data about misophonia for the researchers. From what I understand, someone before me was in tears from some of the sounds, and even though she wanted to continue with the testing, the researchers wouldn't let her because they felt it would be morally wrong for her to be subjected to sounds that were clearly making her miserable. That's what impressed me so much about this research study. The researchers made sure participants understood that we could stop at ANY point during the testing process and even though we might want to push ourselves to be exposed to trigger sounds, even if we didn't say "STOP!" the researchers monitored our vitals and made sure that we weren't hurting ourselves.
After the testing was done and I was disconnected from all the wires and gadgets, I went into the control room to talk with the researcher. He commented that I was able to provide them with some good data. (Yay! I did my part.) I noticed a bar-graph on one of the monitors in the room, which the researcher pointed out were my 1-4 button responses to the series of sounds I heard. As far as the correlation of sounds to the brain scans, he said that after they completed testing all the participants (both misophonia sufferers and the "non-sufferer" control group), then they'd analyze all the collected data. It sounded like it would take a long time to go through all the data, but I'm hopeful that they'll be able to formulate some conclusions by the early Fall. I can't wait to read the whitepaper of the study when it comes out!
I'm sure that anyone participating in the study probably felt the same desire to be able to brave through the discomfort so we could provide good data about misophonia for the researchers. From what I understand, someone before me was in tears from some of the sounds, and even though she wanted to continue with the testing, the researchers wouldn't let her because they felt it would be morally wrong for her to be subjected to sounds that were clearly making her miserable. That's what impressed me so much about this research study. The researchers made sure participants understood that we could stop at ANY point during the testing process and even though we might want to push ourselves to be exposed to trigger sounds, even if we didn't say "STOP!" the researchers monitored our vitals and made sure that we weren't hurting ourselves.
After the testing was done and I was disconnected from all the wires and gadgets, I went into the control room to talk with the researcher. He commented that I was able to provide them with some good data. (Yay! I did my part.) I noticed a bar-graph on one of the monitors in the room, which the researcher pointed out were my 1-4 button responses to the series of sounds I heard. As far as the correlation of sounds to the brain scans, he said that after they completed testing all the participants (both misophonia sufferers and the "non-sufferer" control group), then they'd analyze all the collected data. It sounded like it would take a long time to go through all the data, but I'm hopeful that they'll be able to formulate some conclusions by the early Fall. I can't wait to read the whitepaper of the study when it comes out!
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