Paradoxical reaction to medication
3 years ago
Recently, over a period of several weeks from March to April 2022, I had what may have been my worst-ever paradoxical reaction to a medication.
For murky biological reasons, some people can be more susceptible to PxRs than others. I've had serious PxRs to various meds all my life. Because of this, I must always be cautious about the effects of any new medication.
PxRs can be extremely unpleasant. But fortunately they're usually immediately noticeable so that I can quickly stop taking those meds.
A new psychiatrist at the time prescribed me an antidepressant. (I won't say which.) He insisted it was well-tolerated by patients. And he was telling the truth.
But two doses in two days landed me two trips to the emergency room.
The first ER visit involved extreme pain all over my body. The doctors eventually admitted they had no idea what was wrong with me.
The second ER visit involved uncontrollable muscle spasms with painful body contortions.
When we realized the meds were doing this, I stopped taking them and dropped that psychiatrist.
My new autism specialist prescribed me a certain new medication. (Again, I won't say which.) These meds are normally for schizophrenic and bipolar people. (I'm neither.) But it's also been demonstrated to improve and stabilize function in the vast majority of patients with autism.
I was initially reluctant to take it precisely because of my personal history of PxRs. But my specialist insisted it was well-tolerated by patients, and she'd been a very good doctor so far.
When I took the first dose, nothing unusual happened. I took it as a good sign that there'd been no PxR. Just in case, I told some of my friends I'd been prescribed new meds and was monitoring their effects. I continued taking it daily for weeks.
Through the rest of March, I gradually noticed new symptoms which I didn't immediately correlate with the new meds.
I'd recently started attending regular weekly counseling. And I kept crying my eyes out. I seldom cry, but I've had lasting PTSD to work through.
I also noticed changes in my speech patterns under stress.
Normally, the more stress I'm under, the more uncontrollably I stutter, though I'm still saying intelligible words.
Then, during one counseling session, instead of stuttering under stress, I started speaking complete gibberish under stress. I could still read and write and understand people. But the words I intended to say sounded completely wrong coming out. It wasn't even word salad, as that implies individual words still sounding like real words. This was total phonics salad, where no syllables coming out of my mouth sounded like real words.
I've had such gibberish speech episodes before, but they were always extremely infrequent, like maybe once a decade. Now I was speaking gibberish under stress randomly during more and more of my sessions, and increasingly even outside my sessions, too.
During these episodes, if I focused extremely hard, I could very slowly force out sounds of intelligible words. But it was a lot slower than handwriting. At least I *could* still write and type, though my 200 word-per-minute typing speed was noticeably slower.
I knew that my brain might change in subtle ways as I age. (I'm 42 now.) And since people with autism already have at least some communication impairment, this could have just been how I was aging.
But the most damaging symptom I developed was one I wasn't able to notice at all: Agradual immediate decline in my social skills and overall self-awareness. And this came back to bite me hard one day in late March. (EDIT: This change actually was immediate, but the same PxR was impairing my PxR self-monitoring, making it even more dangerous.)
Though I certainly always try to observe, learn and adapt in little ways over time, autism-related social deficits boil down to fundamental differences in instincts associated with social function. Where your instincts don't completely overlap with someone else's, you can use costly cognitive thought to slowly and inefficiently emulate a social skill. But that will never match the ease, speed and accuracy of someone who does it by instinct.
Fortunately, the people who know and love me most already know how I am. They don't usually put me under any great pressure to...not be autistic, especially since others in my family are also on the spectrum.
That day in late March, I'd just finished a counseling session where I again cried a lot. I was feeling mentally thrashed. I messaged one of my best friends, who has a lot of affinity for people with autism. I told my friend my appointment was that day, and I'd have them regularly every week.
I will spare all sensitive details since this exchange was private. But I...said something, which I'd thought nothing of in the moment. She responded by saying it was a very weird thing to say. And I don't think she was happy about it.
Now, I prefer when my closest friends tell me my errors so I can try to learn from them. So I was quick to reexamine what I'd just said. I observed that, yes, it *was* a weird thing to say. I acknowledged it, apologized, and was eager to learn from it. I'm no stranger to social faux pas even on a good day. So I tried to push forward in a rather routine fashion.
But I was silently concerned that this error was somehow unusual even for me. I didn't know why I even said it.
My friend went silent, saying nothing more. As a week went on, I felt increasingly unsettled. She'd been silent for days before and it was no big deal—stuff happens. But now, more than ever, I wasn't sure if anything I was doing was correct.
I tried to be a caring friend. I asked how she was doing and if she was all right. I'd apologize anew. Sometimes I'd try talking about something she was doing recently.
Then, I decided I wanted to do something nice for her. So I dug through my hard drive to find one of my better musical arrangements I'd never shown her before that I knew she might like. I even mentioned in counseling how concerned I was for my friend and how I wanted to do something nice for her.
But next time I checked online, I couldn't reach her anymore, at all. I never heard from her again.
I took this episode to my next counseling session for analysis. Counseling told me I'd certainly made some autism-related faux pas, which is not in itself unusual, is never considered wrongdoing, and which my good friends (including this one) don't really hold against me. But there was no conclusive explanation for why one of my best friends cut contact. I was urged not to fear the worst. I was cautioned that what happened may not have had anything to do with me. But I still felt crushing shame and regret for my friend going away.
My gibberish speech became worse than it had ever been, lasting for hours before I went to bed. When I woke up, I went into the kitchen for breakfast, and someone else said, "hello." I said, "hello," back, except that's not what came out of my mouth. I was still speaking gibberish even after waking up.
Since that episode lasted much of a day, we finally realized this was very abnormal even for me. This wasn't stress or aging. It was the new medication.
The onset had been gradual, but it lined up neatly with my gibberish speech, my slower typing, my emotional dysregulation and my decline in social function. And all these were the opposite of how these meds were supposed to be helping me. We suspected a PxR. (EDIT: Again, the onset was in most ways actually immediate.)
I couldn't go on like this. I stopped taking the meds, and we immediately informed my autism specialist.
My specialist tried to talk me into continuing them. She said they take effect only gradually over months. She said I should give them more time. She said my symptoms were probably all just the stress. And it's true that I've been under enormous stress since what happened last summer. And she reminded me that these meds were well-tolerated by her other patients.
I told her, with all due respect to her undeniable expertise and experience, that I'd been told that before. I told her more about my personal history with PxRs, including from two decades ago. I also told her I have a tendency to keep getting some of the rarest known side-effects to various meds even without a PxR. So I need to take them seriously, even if the chances are 1 in 1000 or 1 in 10000.
She eventually accepted this. But in any case, I was never going to take these meds again.
Within only days, I experienced a drastic improvement in all my symptoms. It could no longer be denied that these meds had given me a PxR after all.
I completely stopped crying during counseling sessions. I still felt stuff, but without so many tears.
The gibberish speech never returned. When under stress, I resumed stuttering again.
But most significantly, I felt a very noticeable sharpening of my social skills and overall self-awareness. I felt more like I had in January before I was even prescribed these meds.
And it was clearer than ever that the weird thing I'd said to my friend in late March should have been glaringly inadvisable even to me. *Should* have been, but somehow wasn't. My social skills had regressed since I started the new meds.
I was faced with the aftermath of...something I hadn't realized was happening, and absolutely didn't have to happen. But it did happen. And now I didn't know how to fix it.
I was repeatedly told it wasn't my fault. But that was no comfort to me.
Yeah, I'd followed doctor's advice to take meds intended and entirely expected to give me greater stability. It ended up doing the exact opposite, but we couldn't have known until I tried it. The risk seemed reasonable. And my PxRs are usually instant anyway.
But my friend is still gone. We still don't know why. But I still fear real harm was done.
My friend had been so kind and understanding. She actually liked my autistic monologues. She was my friend during one of my most difficult years. I cared so much what she thought of me.
1. I had no noticeable symptoms when I started taking it. The bad symptoms were so gradually noticeable I didn't quickly realize the meds were causing them. (EDIT.)
2. The worst symptoms were ones which by their nature I wasn't able to perceive on my own. But they were changing me for the worse.
3. It may have permanently alienated one of my best friends. And that thought hurts worse than any physical pain.
I knew PxRs could be bad before. But this one was especially cruel to me. I was willing to risk the *possibility* of one if it could be quickly noticed and stopped. But I never even want to *risk* a PxR like *this* one ever again.
————————————————
A paradoxical reaction (abbrev. PxR) is when medication has an abnormal (and often rare) effect which is opposite or contrary to the intended effects. Examples of a PxR include an antidepressant causing depression, or a painkiller causing pain.For murky biological reasons, some people can be more susceptible to PxRs than others. I've had serious PxRs to various meds all my life. Because of this, I must always be cautious about the effects of any new medication.
PxRs can be extremely unpleasant. But fortunately they're usually immediately noticeable so that I can quickly stop taking those meds.
————————————————
My previous worst ever PxR was about two decades ago.A new psychiatrist at the time prescribed me an antidepressant. (I won't say which.) He insisted it was well-tolerated by patients. And he was telling the truth.
But two doses in two days landed me two trips to the emergency room.
The first ER visit involved extreme pain all over my body. The doctors eventually admitted they had no idea what was wrong with me.
The second ER visit involved uncontrollable muscle spasms with painful body contortions.
When we realized the meds were doing this, I stopped taking them and dropped that psychiatrist.
————————————————
So what PxR did I have this year and why was it worse?My new autism specialist prescribed me a certain new medication. (Again, I won't say which.) These meds are normally for schizophrenic and bipolar people. (I'm neither.) But it's also been demonstrated to improve and stabilize function in the vast majority of patients with autism.
I was initially reluctant to take it precisely because of my personal history of PxRs. But my specialist insisted it was well-tolerated by patients, and she'd been a very good doctor so far.
When I took the first dose, nothing unusual happened. I took it as a good sign that there'd been no PxR. Just in case, I told some of my friends I'd been prescribed new meds and was monitoring their effects. I continued taking it daily for weeks.
Through the rest of March, I gradually noticed new symptoms which I didn't immediately correlate with the new meds.
⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯
1.I'd recently started attending regular weekly counseling. And I kept crying my eyes out. I seldom cry, but I've had lasting PTSD to work through.
⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯
2.I also noticed changes in my speech patterns under stress.
Normally, the more stress I'm under, the more uncontrollably I stutter, though I'm still saying intelligible words.
Then, during one counseling session, instead of stuttering under stress, I started speaking complete gibberish under stress. I could still read and write and understand people. But the words I intended to say sounded completely wrong coming out. It wasn't even word salad, as that implies individual words still sounding like real words. This was total phonics salad, where no syllables coming out of my mouth sounded like real words.
I've had such gibberish speech episodes before, but they were always extremely infrequent, like maybe once a decade. Now I was speaking gibberish under stress randomly during more and more of my sessions, and increasingly even outside my sessions, too.
During these episodes, if I focused extremely hard, I could very slowly force out sounds of intelligible words. But it was a lot slower than handwriting. At least I *could* still write and type, though my 200 word-per-minute typing speed was noticeably slower.
I knew that my brain might change in subtle ways as I age. (I'm 42 now.) And since people with autism already have at least some communication impairment, this could have just been how I was aging.
⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯
3.But the most damaging symptom I developed was one I wasn't able to notice at all: A
Though I certainly always try to observe, learn and adapt in little ways over time, autism-related social deficits boil down to fundamental differences in instincts associated with social function. Where your instincts don't completely overlap with someone else's, you can use costly cognitive thought to slowly and inefficiently emulate a social skill. But that will never match the ease, speed and accuracy of someone who does it by instinct.
Fortunately, the people who know and love me most already know how I am. They don't usually put me under any great pressure to...not be autistic, especially since others in my family are also on the spectrum.
That day in late March, I'd just finished a counseling session where I again cried a lot. I was feeling mentally thrashed. I messaged one of my best friends, who has a lot of affinity for people with autism. I told my friend my appointment was that day, and I'd have them regularly every week.
I will spare all sensitive details since this exchange was private. But I...said something, which I'd thought nothing of in the moment. She responded by saying it was a very weird thing to say. And I don't think she was happy about it.
Now, I prefer when my closest friends tell me my errors so I can try to learn from them. So I was quick to reexamine what I'd just said. I observed that, yes, it *was* a weird thing to say. I acknowledged it, apologized, and was eager to learn from it. I'm no stranger to social faux pas even on a good day. So I tried to push forward in a rather routine fashion.
But I was silently concerned that this error was somehow unusual even for me. I didn't know why I even said it.
My friend went silent, saying nothing more. As a week went on, I felt increasingly unsettled. She'd been silent for days before and it was no big deal—stuff happens. But now, more than ever, I wasn't sure if anything I was doing was correct.
I tried to be a caring friend. I asked how she was doing and if she was all right. I'd apologize anew. Sometimes I'd try talking about something she was doing recently.
Then, I decided I wanted to do something nice for her. So I dug through my hard drive to find one of my better musical arrangements I'd never shown her before that I knew she might like. I even mentioned in counseling how concerned I was for my friend and how I wanted to do something nice for her.
But next time I checked online, I couldn't reach her anymore, at all. I never heard from her again.
I took this episode to my next counseling session for analysis. Counseling told me I'd certainly made some autism-related faux pas, which is not in itself unusual, is never considered wrongdoing, and which my good friends (including this one) don't really hold against me. But there was no conclusive explanation for why one of my best friends cut contact. I was urged not to fear the worst. I was cautioned that what happened may not have had anything to do with me. But I still felt crushing shame and regret for my friend going away.
————————————————
Then, in mid-April, we had our breakthrough.My gibberish speech became worse than it had ever been, lasting for hours before I went to bed. When I woke up, I went into the kitchen for breakfast, and someone else said, "hello." I said, "hello," back, except that's not what came out of my mouth. I was still speaking gibberish even after waking up.
Since that episode lasted much of a day, we finally realized this was very abnormal even for me. This wasn't stress or aging. It was the new medication.
I couldn't go on like this. I stopped taking the meds, and we immediately informed my autism specialist.
My specialist tried to talk me into continuing them. She said they take effect only gradually over months. She said I should give them more time. She said my symptoms were probably all just the stress. And it's true that I've been under enormous stress since what happened last summer. And she reminded me that these meds were well-tolerated by her other patients.
I told her, with all due respect to her undeniable expertise and experience, that I'd been told that before. I told her more about my personal history with PxRs, including from two decades ago. I also told her I have a tendency to keep getting some of the rarest known side-effects to various meds even without a PxR. So I need to take them seriously, even if the chances are 1 in 1000 or 1 in 10000.
She eventually accepted this. But in any case, I was never going to take these meds again.
Within only days, I experienced a drastic improvement in all my symptoms. It could no longer be denied that these meds had given me a PxR after all.
⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯
1.I completely stopped crying during counseling sessions. I still felt stuff, but without so many tears.
⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯
2.The gibberish speech never returned. When under stress, I resumed stuttering again.
⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯⋯
3.But most significantly, I felt a very noticeable sharpening of my social skills and overall self-awareness. I felt more like I had in January before I was even prescribed these meds.
And it was clearer than ever that the weird thing I'd said to my friend in late March should have been glaringly inadvisable even to me. *Should* have been, but somehow wasn't. My social skills had regressed since I started the new meds.
I was faced with the aftermath of...something I hadn't realized was happening, and absolutely didn't have to happen. But it did happen. And now I didn't know how to fix it.
I was repeatedly told it wasn't my fault. But that was no comfort to me.
Yeah, I'd followed doctor's advice to take meds intended and entirely expected to give me greater stability. It ended up doing the exact opposite, but we couldn't have known until I tried it. The risk seemed reasonable. And my PxRs are usually instant anyway.
But my friend is still gone. We still don't know why. But I still fear real harm was done.
My friend had been so kind and understanding. She actually liked my autistic monologues. She was my friend during one of my most difficult years. I cared so much what she thought of me.
————————————————
So what made this PxR worse than the one from two decades ago?1. I had no noticeable symptoms when I started taking it. The bad symptoms were so gradually noticeable I didn't quickly realize the meds were causing them. (EDIT.)
2. The worst symptoms were ones which by their nature I wasn't able to perceive on my own. But they were changing me for the worse.
3. It may have permanently alienated one of my best friends. And that thought hurts worse than any physical pain.
I knew PxRs could be bad before. But this one was especially cruel to me. I was willing to risk the *possibility* of one if it could be quickly noticed and stopped. But I never even want to *risk* a PxR like *this* one ever again.

kalenidus
~kalenidus
Dude, that's massively rough. I'm very sorry to hear you had to go through that. I hope things improve and your friend comes around, somehow. You're a good egg, Dermot.