Every time I talk with my father, which can range from three times a week to twice a day, depending on life circumstances, he asks me the same question, “What’s new?” And I tell him, “Nothing’s new,” every single time. He thinks I live the most boring life imaginable.
When I hang up the phone, I take stock. Oh, right, I interviewed candidates to replace my retiring boss. Oh yeah, I just got a new roof put on my home. I’ve been using a cool headlamp to run after dark a couple nights a week. Sophie aced her Forestry final. Eli’s boss received an email from client praising Eli’s work performance. It’s all new, it’s all notable. What’s my problem.
I don’t talk. Much. I don’t talk much with other people. And I’m learning that like bicep curls or running, the less you do it, the harder it gets. Once upon a time, I socialized with the best of them. Out nightly, drinking heavily, I chatted amicably with friends and strangers, funny and engaging, a veritable extrovert. Later in my in my adult life, limiting myself to two or three glasses of wine like a normal person, I still did well in small get togethers, four to six people.
It’s hard to pinpoint exactly when my ability to socialize tanked, but I think it was early in 2016. That’s when I quit drinking alcohol, and it’s when I started taking a drug called risperidone for Tourette Syndrome.
The alcohol bit is straightforward. When I quit, I stopped socializing. I felt uncomfortable in unstructured situations without a drink, so I avoided them altogether. Susan and I stopped going to parties, stopped getting together with other couples. We switched from moderately social people to couch-bound book enthusiasts overnight. If I was reading this instead of you, I’d think, “There it is right there, Jeff. Problem identified.”
Slow down. A few months after I quit drinking, my doctor prescribed risperidone. It’s a hardcore drug. It’s labeled an antipsychotic, made for people with schizophrenia. Somewhere along the line, they discovered that it reduces the symptoms of Tourette. It’s loaded with side effects, including triggering tardive dyskinesia, a movement disorder causing involuntary tics of the eyes, jaw and tongue—all tics that are common with my Tourette Syndrome. This leaves me wondering where Tourette leaves off and the risperidone side effects begin. As soon as I began taking risperidone, Susan told me I seemed different to her.
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A couple of weeks ago, after one of those interviews I mentioned earlier, I was making some comments to the rest of the group on Zoom. I suddenly I lost my word recall. I stared off to the side into the next office, trying to focus my thoughts. It might have lasted for a second, maybe five seconds. My vision dimmed. It seemed like I was taking too long stumbling for words. My building embarrassment wasn’t going to allow me to move beyond the mental block. I said, “I’ve got nothing else to say,” and I stopped talking.
This wasn’t an isolated incident. It’s an extreme example of what happens in my brain sometimes while I try to have a conversation. Susan suggested maybe I had some sort of seizure activity. But I don’t think so. I frequently get stuck trying while trying to verbalize my thoughts. And often, I simply can’t think of anything to say at all. I usually sit silently as a group conversation swirls around me, or worse, when I’m trying to share the company of only one other person.
In 1995, I experienced a traumatic brain injury in a bicycle accident. I’ve grown accustomed to blaming any brain problems on that—hearing loss, double vision, and my increasing inability to hold a conversation. I once asked a neurologist if there was medical record of adult-onset autism. When I read about communication difficulties that some on the spectrum experience, it seems like I’m reading about myself.
Now I’m wondering is my trouble stems from a reaction to medication. I take a couple of antidepressants along with the risperidone, so any one of them (or none of them) could be the cause, but I keep coming back to Susan’s comment that I seemed different once I started the risperidone. I have a psychiatrist medication management appointment in January. I’m seriously considering weaning myself off risperidone.
Risperidone has been a wonder drug for me. Before I started taking it, my OCD heavily impacted my life. With risperidone, it mostly went away. I’m curious to see what happens when I remove this drug that has clearly had such an impact on my behavior over the past eight years.
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The Other Stuff 
I think I’ve told you before that Ben was on Risperdal for a while, but we had to discontinue cuz he developed gynomastia. He’s been on another antipsychotic for a long time, seroquel, and it works well. Maybe it could be something to try instead? Obviously this is something your doctor would need to help decide 😂
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On the Tourette facebook groups, risperidone is a pariah drug. It seems like everyone has had a bad experience with it. My experience has had highlights for sure, but I really want to see what happens if I go off it.
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It’s hard not to turn on a concerned voice and advise caution. But you’ll have read about how tricky it can be to come off, reduce or switch psychoactive drugs, so there is no need for that.
The trickier question of who I’d like to be and how I would transform myself leaves me floundering. Luckily, I can relax – you’ll find your way.
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Well, I can always go back on it if I don’t like what happens. It’s less scary than going off an antidepressant because, well, depression. We’ll see.
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It must take a lot of courage to begin, and to go off of, a significant medication like that. I admire that. Hope you gradually and safely find the right combination.
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I don’t think it takes courage, maybe more frustration with the status quo. My psychiatrist may wind up being 100% against this idea. I might actually send her what I wrote to get her impressions ahead of the appointment.
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A few weeks ago I had to have emergency surgery, and now I am taking a medication that has affected my ability to function as I normally would. I’m adapting to it with time, but at first I wondered if I would ever be able to work or enjoy life again.
Based on this recent experience, I can understand your desire to stop taking a medication that has affected your personality and life so significantly. I won’t be so bold as to give advice, but I wish you the best with your decision.
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I’m happy to see you here. I was worried when you disappeared so abruptly. I suspect I can read between the lines, and I hope you don’t feel too horrible going forward. Be well.
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Thank you, Jeff. I have missed the community of blogs and have missed blogging. But I am preparing for a comeback. I’m counting on this health setback to be a positive turning point for me.
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have you ever tried a dry-erase board or notecards/notepad to keep you on-task with conversations? i often use this method– it helps me with what i call circuit overload.
hoping your neurologist has recommendations that provide the very best results for you! ❤
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I give a lot of presentations at work. I always show up with notes and I rarely have trouble. Would it be weird to take notes during a conversation so that I can refer to them when it’s my turn to talk? Probably, it’s still possibly a good idea.
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i def take notes during meetings while others are talking … and i’ve taken notes during 1:1 conversations for things like brainstorming ideas, and during phone conversations when the other person doesn’t even see me taking notes. but, i generally don’t need to take notes during general conversations or everyday stuff (unless i add something to my to-do list). OK … i’m thinking i take notes on everything! P.S. no one i have ever worked with has ever told me that my note-taking was odd or weird. 🙂
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I was more thinking about taking note in a personal conversation seeming weird. I frequently run through conversation topics with my wife when I need to go to work events. I just go blank in the moment.
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Yep, a case of suck it, or perhaps more accurately not suck it, and see.
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It sounds horrible, whether freezing because of an effect caused by risperidone or not. I feel tremendous compassion for you and hope you can learn the root of the problem and resolve it right away.
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Well, step one is hearing what the psychiatrist says about it. Ultimately it’s my decision, but I really trust her opinion. Something I’ve been dealing with increasingly over the past several years is not trusting my brain. My 1995 TBI looms over everything (my TS symptoms, dormant for more than a decade) came back after that, and my vision problems began. I’ve been blaming my increasing social/communications difficulties on it as well (what I call my adult-onset autism), but maybe there is a simpler solution. I’m excited and nervous to begin exploring my options.
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I’ll be thinking of you and wish you the best whatever you decide to do.
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Is there no other solution? This is horrifying. I think I took risperidone once for something. As I’ve aged, I’ve become sensitive to drugs. I’ve tried a few for pain, gabapentin, and Lyrica, and had bad reactions. Probably just as well. I suffer, tho. I don’t want you to suffer.
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Thank you so much Regan. The first thing to remember is that I live an incredibly charmed life. I have great relationships with my wife and kids, a good job, a nice house and I’m physically fit. Sometimes it’s easy for me to look at all of that and think, jeez Jeff, stop belly-aching. There are definitely other solutions including a laundry list of medications I could switch to. I think step one is to see how badly I need them at all. Eight years is a long time to rely on a medication. I could be quite different at this point.
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Hi Jeff… sometimes I think we can forget things in the moment and recall them after. Of course, sometimes there can be other reasons. That said, you seem to have lots going on. I’m assuming Susan is your wife/partner. If I’m wrong I apologise but that how it is how comes across. Susan sounds as though she knows you better than anyone, apart from yourself maybe. I have no experience of Tourettes, not having known anyone with it. However, regarding medication, when my sister was taking Prozac she was different. A bit glazed over. My son too, a few years back was on medication that masked the real him, if that makes sense. Well done on giving up alcohol. I’ve been sober curious for a while but have managed stints here and there. I’ve decided to give wine the boot once more, and try to give life a fair go without it. I’ll see how I go. Nothing is written in stone. Wishing you and your family a Happy Christmas and a Happy and Healthy New Year.
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I apologize for the delay in responding. Your message was inexplicably relegated to my spam folder. Yes, Susan is my wife. Years ago, I got tired of writing ‘my wife Susan’ so now I just leave it to everyone else to figure it out. Maybe a bit rude? Giving up alcohol was the hardest thing I’ve ever done. So much of my perceived identity was wrapped up in being a ‘drinker.’ And then of course there were self-medicating elements that I was suddenly left without. It took years to get comfortable with sobriety, and really it only got easy once I realized that there are several non-alcoholic beers that actually taste very good. I hope your Christmas is wonderful and spent with the people you love. Incidentally, if the 1962 in 1962liola is your birth years, we’re the same age.
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No worries. Definitely not rude! Think it’s a brilliant idea! May do the same with Steve (my husband). It reads better with a name. I think in a decade maybe a bit longer, drinking alcohol will be where smoking is today. Sobriety rocks, so I hear! You’ve done brilliantly! Most drinkers probably envy you for not drinking whether they say it or not. You should be proud of yourself! A huge accomplishment! Yes, 1962. Baby boomer generation 😊 I wish you, Susan and your loved ones a wonderful Christmas too! Best wishes 🎄😊
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There is a difficulty in finding the right medication that helps more than it hurts. I was so happy to get on Cymbalta that I didn’t look at possible side effects until after I’d been on it for a few months. The side effects so far have been worth the overall joy I am experiencing. There are some unexpected side effects that I won’t go into, but I’ve decided I can live without those particular experiences in I can be happy for what feels the first time in decades.
The nice thing about taking these drugs, you can make your own decisions about whether their effects are worth whatever side effects they have. If enough bad things overbalance the positives, then you can stop taking them long enough to see if the alternative is worse. It’s not a great system, but you do get to make your choices for what you can live with.
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I’m glad you’re getting the wanted benefit from Cymbalta. Getting a reprieve from a chronic mental condition is a gift, even if the side effects can be undesirable. For me, risperidone was that because it really blocked my OCD tendencies. My wife and I have been assembling a list of deficiencies that *could* be caused by risperidone. I’ll present all my data to my psychiatrist next week and hopefully we can come up with a plan. Since we’ve done a deep dive (initiated by what I wrote) we’re finding that many language deficiencies can be caused by risperidone, even though they aren’t on the list of common side effects. Of course, if I go off risperidone, I may need to figure out what to do about the OCD… As always, thanks for reading a complimenting.
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