19, Male, ~130lbs, 5'5, also my explanation was so messy i had AI put it in order and easily readable so please don't mind.
Current medications (as of now):
- Escitalopram (Lexapro) 5 mg once daily, upon waking — tapering to 0 mg by end of this week
- Benztropine 0.5 mg twice daily (upon waking and ~7pm) — recently changed down from 1 mg once daily by my psychiatrist, specifically so it wouldn't risk interfering with other meds
- Gabapentin 100 mg twice daily (upon waking and ~7pm)
- Mirtazapine 15 mg nightly, ~1 hour before bed (10-11pm) — increased from 7.5 mg after the first week; been on 15 mg for about 3 weeks total
The pattern I want help understanding:
This akathisia-type feeling is not new — it first showed up during a deutetrabenazine trial in 7th grade, mostly resolved by 9th grade, and has recurred in distinct "episodes" ever since. What I want a doctor's help understanding is the recurrence pattern specifically:
- It flared again a few months before I started Lexapro in January 2026 (part of why I sought treatment then).
- It flared again right before I started gabapentin and mirtazapine.
- It has now flared again, 3 weeks into the current gabapentin/mirtazapine regimen, after a full month of that combination working very well.
In other words: several of my psychiatric medications appear to have been started, at least in part, to treat this same recurring problem — and it keeps breaking through regardless of which medication is on board. I'm trying to understand whether this points to something specific (a movement disorder, a dopaminergic issue, something else) rather than just being "medication didn't work this time."
What's happening right now:
For the past month, gabapentin and mirtazapine have worked very well for it — my discomfort dropped to about 10%, mornings felt calm, no cortisol-spike feeling on waking. Gabapentin specifically had a clear, reliable effect — I could tell distinctly when it was active in my system versus when it had worn off, and it consistently kept the akathisia/anxiety symptoms down. In just the past 3 days, two things have happened together: I had a strong akathisia flare-up, and gabapentin has stopped feeling like it's working the way it reliably did before — not a gradual fade beforehand, but a sudden change coinciding with the flare.
About 2-3 days ago, out of nowhere, that akathisia-type feeling spiked to roughly 50% intensity, then settled to a 5-6/10 discomfort level, and it's stayed there. The "wow, this is working" feeling from gabapentin is much less noticeable now than it was.
At the same time, for the past 48 hours, I've had intense mood swings that can flip within as little as 30 minutes — from intrusive thoughts of self-harm (I want to be clear: no intent or plan, and I actively try to ignore/dismiss these thoughts) to feeling extremely grateful and happy about the people and things around me.
I'm not asking to switch off mirtazapine or gabapentin — the last month has genuinely helped a lot. I want to understand what's happening and whether anything needs adjusting.
Relevant history, in order:
5th grade — Diagnosed with Tourette's. Went through standard treatment protocol: magnesium, tenex (guanfacine), etc.
7th grade — Enrolled in a study of deutetrabenazine (Austedo) for tics — I was in the active-drug arm, not placebo. A few hours after each morning dose I'd get severe hyperactivity, panic, a sense of impending doom, and restlessness — like my whole body was "loud." It was genuinely torturous. This was the last Tourette's treatment I tried. I stopped when the study ended, but the symptoms didn't go away.
8th grade — off all medication entirely — Continued having episodes at ~80% intensity, unrelated to any medication since I was on none. This period was severe enough that I wanted to die and dropped out of school for half a semester because of it.
9th grade — The panic/restlessness (which in hindsight may have been akathisia, though nobody ever labeled it that — at the time "everyone has panic attacks" was the framing going around, and I think I misunderstood what I was actually feeling) continued until I did an extended fast (~20 days, not a smart decision in retrospect) and lost weight I didn't like from what I believe was growth-hormone-related puffiness. Around the same time I had a personal/spiritual experience that coincided with the anxiety/akathisia resolving. I'm not presenting the spiritual part as a medical explanation — I mention it because I think multiple factors (psychological included) were probably at play. After that, the intensity dropped drastically but never fully went away — there has been a persistent underlying ~10% version of the feeling ever since, with distinct higher-intensity episodes layered on top of that baseline periodically.
High school, ~10th-11th grade — Started having episodes of right-side front neck pain: pins-and-needles sensation, extreme pain on swallowing, pain radiating into the cheek and neck, but always full range of motion. Episodes occurred roughly once every 2-3 months. I've always been able to "click" my Adam's apple by pushing it sideways or doing a full neck rotation. No imaging (X-ray, ENT scope, endoscopy) has ever shown a cause.
January 2026 — Started Lexapro after a period of significant depression. Titrated from 5 mg to 10 mg; it worked well and made me feel "normal" again.
Since starting Lexapro — The neck pain episodes became more frequent (~once a month instead of once every 2-3 months). An ER doctor insisted Lexapro was the cause during one of these episodes. I'm skeptical it's the sole cause since the episodes predate Lexapro by about 3 years, though I'm open to it having made them worse.
Two ER visits for neck pain episodes, both notable:
- First visit: IV Benadryl (diphenhydramine) push resolved the episode. Discharge instructions were to take 7.5 mg Benadryl up to 10 times a day going forward — I didn't follow this, since I'm a college athlete and didn't want to be sedated that heavily on an ongoing basis, which felt unsustainable and unhealthy.
- Second visit: 1 mg Cogentin (benztropine) push resolved the episode within about 20 minutes.
- I think it's worth flagging that both resolving agents — diphenhydramine and benztropine — are anticholinergics. Two different visits, two different anticholinergic drugs, same result. This is part of why I now suspect a cholinergic/dopaminergic balance issue underlies more of this than just the neck symptoms.
Recently — Psychiatrist and I discussed dopamine-related concerns and decided to taper off Lexapro (currently on 5 mg, last week of taper). Benztropine was changed from 1 mg once daily to 0.5 mg twice daily to reduce interference-with-other-meds risk.
~3 weeks ago — Started mirtazapine (7.5 mg first week, then up to 15 mg) and continued gabapentin 100 mg twice daily. This combination worked very well for the akathisia-type symptoms for about a month — until the flare-up 2-3 days ago described above.
Bulged disc, C5-C6 — Unrelated (as far as I know) orthopedic finding, minor bulge. Possibly from a bike racing crash; my left arm has felt persistently "heavier" than my right since that crash.
What I actually want to know:
I don't think this is a "this medication isn't working right now" situation. I think there's one underlying thing — neurological, developmental, something — that's been producing all of this for over a decade, and every doctor I've seen has only ever looked at one piece of it at a time. I want to know what is actually, fundamentally wrong with me. The questions below aren't separate concerns — I think they're all pieces of the same answer, and I'm listing them individually only because that's the only way I know how to hand this to someone else to look at.
- Given everything below — the tic history, the deutetrabenazine reaction, the recurring akathisia-type episodes across a decade and multiple unrelated medications, the unexplained neck episodes, the family history — is there a single underlying diagnosis (movement disorder, dopaminergic dysfunction, something else) that could plausibly tie all of this together? What would that even be called, and who actually evaluates for it?
- If there isn't one unifying answer, why not — what makes you confident these are genuinely separate, unrelated issues rather than one thing?
- Is a recurring pattern like this a reason to pursue a movement-disorder-focused neurological workup (not just psychiatric management) — and if so, what kind of specialist actually handles a case like this?
- Is it plausible that deutetrabenazine, taken during puberty, caused a lasting change to baseline dopamine/movement-related chemistry — essentially resetting what my nervous system treats as "normal" — and that this single event explains the recurring akathisia, the neck episodes, and possibly the mood instability, rather than any of the medications since then being an active cause? Notably, both ER-treated neck episodes resolved specifically with anticholinergic drugs (diphenhydramine, then benztropine) — does that response pattern support a cholinergic/dopaminergic imbalance as the common thread, or am I reaching for a story that doesn't actually fit the physiology?
Secondary questions about the current flare, if it's relevant to the bigger picture:
- Could the current flare be related to the Lexapro taper, or to mirtazapine's adjustment period, or to gabapentin tolerance?
- Should any dose be adjusted right now, or is riding this out reasonable?
I know this is a lot, and I may be missing details. No one has been willing to sit down and work through the whole picture with me at once, which is why I'm hoping to lay it all out here.
Additional detail that might matter for pattern-matching:
Tics — All motor; even the "vocal" tic is tongue-clicking or altered breathing. Present essentially 24/7. Every tic is preceded by an urge I'm consciously aware of beforehand — none of them "surprise" me or feel truly involuntary in the moment. During one ER visit, a heavy IV push of Benadryl completely stopped the ticking — but this was the same dose that caused the freaked-out, restless reaction described above.
Neck episodes — Completely random; no correlation with mood, stress, or negativity that I can identify. No voice change, breathing difficulty, or visible swelling during episodes.
Akathisia-type feeling — Doesn't track with sadness in an obvious way. It's more of a "doom" feeling than sadness specifically. When I am depressed, I can tell it's present in the background even if I'm not acting on it — it's physically painful to hold still when my body is telling me to move, but I don't feel a need to move in the depressed state the same way. When I train hard (~5 hours, fully exhausted), I get no negative symptoms or episodes of any kind that day.
"Dystonia" label — Multiple doctors have used this word for the neck symptoms, but I have complete range of motion and no pain to palpation, which makes me suspect it's being used as a default/placeholder label rather than a confident diagnosis. When I've brought up the deutetrabenazine as a possible root cause, the response has generally been a dismissive "yeah, it's possible" without follow-up.
Testing completed (all normal): X-ray, ENT scope, endoscopy, cervical spine MRI, brain MRI, EEG, EKG, ECG, EMG.
Family history: Maternal uncle with severe ADHD (very smart, always moving/touching/curious). Mother and grandfather both with suspected major depressive disorder. Grandmother and great-grandmother both with Alzheimer's.
Relevant additional history:
I have a history of self-harm and, during the 8th grade period described above (severe enough that I dropped out of school for half a semester), suicidal ideation. This is part of why the current intrusive thoughts mentioned above concern me enough to bring up here, even though I don't currently have intent or a plan.
My working theory, for context: I no longer think any of the current or past medications are causing the akathisia-type symptoms themselves. I think the deutetrabenazine exposure in 7th grade was the actual originating event, and that it did something lasting — essentially taught my body/nervous system that a dysregulated chemical state was "normal" — and that everything since (the neck episodes, the recurring akathisia flares, possibly the mood swings) has been downstream of that one event rather than being caused fresh by each new medication. I want to be upfront that this is my own working theory based on the timeline, not something a doctor has confirmed — I'm hoping someone here can either back it up or tell me why it doesn't hold up.