Hi everyone, I have an appointment coming up where my doctor and I will be discussing testing options, what's actually necessary vs. nice-to-have, what he can do directly vs. refer out, and medication changes. I'd love input on what questions I should bring to that conversation.
Background, for context:
Psychiatric history: Symptoms began around age 12–13 — mania, psychosis, and depression. Diagnosed with Autism, Schizoaffective Disorder (Bipolar type), OCD, and Generalized Anxiety Disorder, with a history of severe hallucinations, paranoid delusions, mood cycling, catatonia, and multiple hospitalizations. These symptoms never fit neatly into standard psychiatric patterns, and in mid-2024 they went into sudden, sustained remission with no medication change — now being reconsidered as possibly neurological rather than primary psychiatric.
Neurological: Seizure-like episodes follow a set pattern — a prodrome of feeling "off" and losing speech, clumsy walking, falling, generalized shaking, then postictal confusion and weakness. Also dystonia (neck contracting to one side, toe posturing), catatonia, cataplexy triggered by laughing, retropulsion, constant tremor, and abulia (able to move but no drive to initiate). Older medical reports document saccadic dysmetria, tracking objects with the whole head instead of the eyes, a veering gait, spatial/coordination issues, and cerebral atrophy — despite past records describing me as "physically healthy." A new psychiatrist now suspects Temporal Lobe Epilepsy.
Sleep: Hypersomnia, sleep attacks, sleep paralysis, hypnopompic hallucinations, and physically acting out vivid dreams.
Autonomic/connective tissue: Dysautonomia (tachycardia, orthostatic hypotension, temperature/sweating dysregulation), joint hypermobility/EDS-type features, chronic widespread pain, and a recent first gout flare.
Vision/GI: Visual snow, poor eye-tracking, severe photophobia, corneal changes; IBS, GERD, dysphagia, early satiety.
Medication sensitivity: A DRESS reaction to sodium valproate, severe drug-induced parkinsonism from quetiapine, and marked sedation from other standard doses.
Recent acute flare: A sudden autonomic spike (high BP and heart rate, sweating, flushing, headache) with both legs suddenly giving out for over two hours, followed by nearly a week of dark cola-colored urine, and a second episode of prolonged leg trembling days later.
Currently discussing a medication plan: adjusting amitriptyline (which lost effectiveness after a fluoxetine dose drop removed a metabolism-blocking interaction), possibly adding low-dose naltrexone, and layering in a gabapentinoid — all while working around seizure threshold and blood pressure medication constraints.
Given all this, what questions have you found valuable to ask in a similar spot — for getting the right testing prioritized, figuring out what's truly necessary vs. optional, understanding what a general doctor vs. a specialist can actually do, and navigating medication changes with overlapping constraints? Any input appreciated.
A little photo of mine to say thanks.
