Meds
I've alluded in previous posts to a bad experience with the one medicine I've tried using to control my tics. My first appointment with my neurologist was December 11, 2017. I checked in, sat for a while, and she came to get me. Diagnosing me with Tourette's Syndrome was easy. After talking for a few minutes about my experiences from childhood until now and explaining my tics and their frequency and development, we started talking drugs. She recommended I start on clonidine, though we talked anti-seizure and anti-anxiety meds as well. We decided that since I'd made it to 37 as a mostly functional adult, clonidine and its minimal side effects (in comparison to the other options) was probably the best way to start. We talked about a titration schedule to ease me onto the drug. Clondine is primarily a medicine to treat high blood pressure, so taking a full dose right off the bat can push a fella's blood pressure mad low mad quick. My full initial dose after titration would be 1mg.
I left the office that afternoon a little ambivalent about the idea of medicating to control my tics. It would be nice, I thought, to have them gone. I've said a few times now that strangers don't frequently notice my tics, so any relief would be more for my own sense of peace than it would be for me to be comfortable in public. I also have a deep-seated fear that my son will grow up embarrassed by my tics. I don't want him growing up thinking he has a weird dad.Heading that off at the pass could only be a good thing. It's bad enough I'm a Giants fan living just outside Philadelphia. I remember her telling me that I should cut back on drinking once I started the medicine since drinking could lower my blood pressure even more and it would also amplify the sedation effect caused by the medicine. I promptly decided that I wouldn't start the clonidine until that Saturday since my brother and I had plans to meet up in Manhattan, get drunk, and see the new Star Wars. I was so drunk that day that I feel like I've had the good fortune off seeing Episode VIII for the first time twice: once that day, and once again, sober, on Netflix. It doesn't hold up.
I remember taking .5 mg that Saturday night, the 16th. I popped it and sat down on the couch by our Christmas tree and feeling exceptionally chill. I can't tell if that was from the clonidine or from the knowledge I'd taken it, but regardless: exceptionally chill. I took .5 mg every night for a week, then in the morning and at night, then 1 mg at night and .5 in the morning, then 1 mg in the morning and at night. That took about three/four weeks. In retrospect, I think gradually increasing the dose hid from me just how far down I was going.
I definitely felt some symptom relief. My tics were still present but not as bad. The weirdest tic-related thing was that I felt like there was a space between the impulse to tic and actually doing it, and I was sometimes able to insert myself into the gap to keep from ticcing. The usual tornado of barely-controlled thought in my head abated a little as well, though I hesitate to say I felt more organized. More like there wasn't as much going on in there. I'd miss the occasional dose and feel awful that day, though again I can't tell if that was from the physiological effects of missing my dose or from knowing I'd missed my dose. One thing I'll say is that it helped me fall asleep, which was a real blessing. It didn't necessarily help me stay asleep, though. Often I'd fall asleep around 9:30-10pm and wake up again around 11-11:30 ready and raring to go. I learned that taking NyQuil while also on the clonidine was a recipe for being a useless zombie the next day. This went on for six months, until I saw the doc again. I mentioned that I was seeing some results on the clonidine, but that I wasn't experiencing the degree of symptom abatement I'd hoped for. We decided to slowly bump me up to 2mg, following the same titration schedule I'd used initally. The first morning I took the full 2mg dose was the second to last time I ever took clonidine.
I drove into work and by the time I parked my car, I knew I was in trouble. I felt like moving through the world was like moving through pudding. I was having waking dreams that I had trouble differentiating from reality. I sat in my car for a little while, trying to either snap myself out of it or decide to go home. Neither happened, so I walked into work. My symptoms continued for a solid hour or so (for what it's worth, I'm reasonably sure I didn't tic even one time. Probably because I felt like I was made of gravy). I work around a bunch of heavy machinery, including forklifts. When I stepped right in front of one that was 15 feet away and coming towards me, I knew it was time to go. For what it's worth, I don't think it was actually dangerous. I do know, though, that it's not something I would have ever done were I in good shape. I pulled my boss aside and sort-of-coherently rambled about having Tourette's, being on an increased dose of my meds, and needing to go home before I got hurt or got someone else hurt. He was totally cool with it. I drove home, talking to my wife the whole time to keep myself straight, and promptly passed out on the couch for five hours, having insanely vivid dreams all the while. My dog does not like me. This is a thing I know. It's a testament to the shape I was in that I'm pretty sure she didn't leave my side those five hours.
I took one more 1 mg dose that night, since quitting clonidine that abruptly can have a serious effect on blood pressure. The next few days, if you'll permit the use of a hackneyed analogy, was like feeling the lights come back on. The tics came back, the the tornado in my brain came back, but gosh darnit I came back too! I felt like me again for the first time in six months, and I hadn't even realized I didn't feel like myself. I was sad to realize that I'd been half-experiencing six months of my infant son's life that I'll never have back, but at least I learned a little about how it feels to be medicated for something long-term. I feel lucky to have been diagnosed at 37 since I know exactly the person I am without drugs and I've carved out a life for myself as myself. I'm lucky as heck that my TS symptoms are moderate enough that I can go about my life without experiencing the stigma associated with TS or other conditions. I know that's not the same for everyone else in our community, and I'm not trying to say that medication is bad. I just know that for me, I'm good. My son will have to deal with his weird dad.
I left the office that afternoon a little ambivalent about the idea of medicating to control my tics. It would be nice, I thought, to have them gone. I've said a few times now that strangers don't frequently notice my tics, so any relief would be more for my own sense of peace than it would be for me to be comfortable in public. I also have a deep-seated fear that my son will grow up embarrassed by my tics. I don't want him growing up thinking he has a weird dad.Heading that off at the pass could only be a good thing. It's bad enough I'm a Giants fan living just outside Philadelphia. I remember her telling me that I should cut back on drinking once I started the medicine since drinking could lower my blood pressure even more and it would also amplify the sedation effect caused by the medicine. I promptly decided that I wouldn't start the clonidine until that Saturday since my brother and I had plans to meet up in Manhattan, get drunk, and see the new Star Wars. I was so drunk that day that I feel like I've had the good fortune off seeing Episode VIII for the first time twice: once that day, and once again, sober, on Netflix. It doesn't hold up.
I remember taking .5 mg that Saturday night, the 16th. I popped it and sat down on the couch by our Christmas tree and feeling exceptionally chill. I can't tell if that was from the clonidine or from the knowledge I'd taken it, but regardless: exceptionally chill. I took .5 mg every night for a week, then in the morning and at night, then 1 mg at night and .5 in the morning, then 1 mg in the morning and at night. That took about three/four weeks. In retrospect, I think gradually increasing the dose hid from me just how far down I was going.
I definitely felt some symptom relief. My tics were still present but not as bad. The weirdest tic-related thing was that I felt like there was a space between the impulse to tic and actually doing it, and I was sometimes able to insert myself into the gap to keep from ticcing. The usual tornado of barely-controlled thought in my head abated a little as well, though I hesitate to say I felt more organized. More like there wasn't as much going on in there. I'd miss the occasional dose and feel awful that day, though again I can't tell if that was from the physiological effects of missing my dose or from knowing I'd missed my dose. One thing I'll say is that it helped me fall asleep, which was a real blessing. It didn't necessarily help me stay asleep, though. Often I'd fall asleep around 9:30-10pm and wake up again around 11-11:30 ready and raring to go. I learned that taking NyQuil while also on the clonidine was a recipe for being a useless zombie the next day. This went on for six months, until I saw the doc again. I mentioned that I was seeing some results on the clonidine, but that I wasn't experiencing the degree of symptom abatement I'd hoped for. We decided to slowly bump me up to 2mg, following the same titration schedule I'd used initally. The first morning I took the full 2mg dose was the second to last time I ever took clonidine.
I drove into work and by the time I parked my car, I knew I was in trouble. I felt like moving through the world was like moving through pudding. I was having waking dreams that I had trouble differentiating from reality. I sat in my car for a little while, trying to either snap myself out of it or decide to go home. Neither happened, so I walked into work. My symptoms continued for a solid hour or so (for what it's worth, I'm reasonably sure I didn't tic even one time. Probably because I felt like I was made of gravy). I work around a bunch of heavy machinery, including forklifts. When I stepped right in front of one that was 15 feet away and coming towards me, I knew it was time to go. For what it's worth, I don't think it was actually dangerous. I do know, though, that it's not something I would have ever done were I in good shape. I pulled my boss aside and sort-of-coherently rambled about having Tourette's, being on an increased dose of my meds, and needing to go home before I got hurt or got someone else hurt. He was totally cool with it. I drove home, talking to my wife the whole time to keep myself straight, and promptly passed out on the couch for five hours, having insanely vivid dreams all the while. My dog does not like me. This is a thing I know. It's a testament to the shape I was in that I'm pretty sure she didn't leave my side those five hours.
I took one more 1 mg dose that night, since quitting clonidine that abruptly can have a serious effect on blood pressure. The next few days, if you'll permit the use of a hackneyed analogy, was like feeling the lights come back on. The tics came back, the the tornado in my brain came back, but gosh darnit I came back too! I felt like me again for the first time in six months, and I hadn't even realized I didn't feel like myself. I was sad to realize that I'd been half-experiencing six months of my infant son's life that I'll never have back, but at least I learned a little about how it feels to be medicated for something long-term. I feel lucky to have been diagnosed at 37 since I know exactly the person I am without drugs and I've carved out a life for myself as myself. I'm lucky as heck that my TS symptoms are moderate enough that I can go about my life without experiencing the stigma associated with TS or other conditions. I know that's not the same for everyone else in our community, and I'm not trying to say that medication is bad. I just know that for me, I'm good. My son will have to deal with his weird dad.
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