Yesterday I saw my neurologist. It was a routine follow-up, nothing special. I came in, doctor reviewed my file, asked me if I still wished to forgo medication, I told him I did and he said alright and left it at that. Why do I have a neurologist, you ask? To help me navigate the accessibility bureaucracies and to keep my family happy. Nonetheless, it does give me the opportunity to talk about why I don't accept treatment for my tics:
A year and a half ago my tics flared from almost nothing to a point where I was having four hour long uncontrollable fits. I was unprepared emotionally. I ended up going to psych services to avoid hurting myself and I was referred to their psychiatrist who put me on medication.
While my new drugs did help me control my tics and everyone around me was really happy with them, I couldn't stand them. Part of Tourette's is what is called "premonary urges" that is you can often feel the tic moments before you have a tic; they're kind of like itches or tickles and the tic makes them go away. The drugs, while they helped me with the tic itself, did nothing to the premonary urges so while I might not have, say, barked I still had that "oh god I really need to bark right now" feeling.
Kinda like a sneeze that never comes.
It ended up leaving me with few honest-to-god tics that just came and a whole lot of agonizingly uncomfortable urges which to get rid of necessitated me going through the motions anyway. This left me feeling like a real jerk or at least a faker because I was so often coaxing myself to tic in order to make the feelings go away.
I'm so, so glad that those medications never did any permanent damage. I will never again accept drugs or similar treatment. At this point, though, even though my tics are as bad as they ever were they are so much part of who I am and how my world is that parting with them, even if I could be assured that I would get rid of all their symptoms, seems unthinkable to me.
Parts of this post come from a comment I wrote in response to Disability and the Curing Thereof over at Kaz's Scribblings.
Hello world!
1 year ago
1 comment:
Fascinating post. As a paralyzed person I experience severe muscle spasms. Like you, I chose not to take medication for spasm relief. I can feel them coming and sometimes can control them. I prefer this sensation as my muscles feel flacid with medication. How do you explain this to someone who is not paralyzed. In the same way how do you explain your tics and their onset to someone who has not had that experience. To outsiders, especially MDs, our decisions can be perceived as wrong or arbitrary.
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