28M, cognitive decline after sepsis, repeated hospitalizations, cancer treatment, and 4 years on clozapine for a misdiagnosis. Worth a neuropsych eval?

[u/AgileWoodpecker3273]

28M, 5'10", non-smoker. Current meds: clonazepam, prazosin.

History, and this is the short version: an episode of sepsis, several months of cumulative hospitalization across multiple admissions, multiple major surgeries, cancer treatment, recurrent C. diff, thyroid issues, and roughly four years on clozapine for a diagnosis that was later confirmed to be wrong, ending in an abrupt inpatient discontinuation. Psychiatric diagnoses include depression, OCD, PTSD, social anxiety and panic disorder.

After all of that, family members independently commented that I seemed cognitively changed. What I notice most is that my tolerance for change collapsed. A disrupted routine or unexpected demand derails me in a way it never did before, and it takes a long time to recover. I also have ongoing trouble with concentration and processing. These have been constant through periods when my mood was better and worse, and haven't shifted with psychiatric treatment.

I know this overlaps with depression, which is why I've asked for objective testing rather than assuming. Is a neuropsych eval a reasonable request given this history, and would testing during an active depressive episode be interpretable, or is it better to wait?

Not looking for medication suggestions.

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[u/funnyushouldask]

What were you on clozapine for? Clozapine is typically a last line medication — you don’t get on clozapine for no reason. (Should that be the case is a different conversation). In psychiatry (and medicine as a whole, really) our understanding of the patient is always evolving and progressing, but in most cases, many people must be very sure a patient has a psychotic disorder for them to end up on clozapine. Clozapine actually helps preserve cognitive function in psychotic illness better than any other med we have.

If you have a primary mental illness (especially the ones where clozapine is most indicated), cognitive decline or dysfunction can be part of the disease itself. We often say psychotic disorders have 3 main types of symptoms: positive (hallucinations, paranoia), negative (loss of motivation, asociality), and cognitive decline. Sepsis and body stress can trigger mental illness through both the physical and psychiatric trauma, and, based on your current age, these stressful events happened during a mental illness risk period (adolescence/young adulthood). PTSD, depression and bipolar disorder can also result in cognitive issues when they are active.

Neuropsych eval is not an unreasonable request, but you might start with basic screening by your PCP or psychiatrist, as it can be expensive. Testing during a depressive episode would definitely not be your peak performance, but if you struggle to get out of depression, it may be your average. Have you had brain imaging? Docs have suspicion during your illness that your neuro/psych was affected? Sepsis can do a lot of things to the body, but if your brain was directly impacted, there would likely have been signs. Delirium, also, which affects many people who are very ill in the hospital, is a “brain on fire” situation and, if left to simmer, can impact cognitive functions longterm (and emerging research suggests even its presence, however brief, is correlated with cognitive impairments).

Trauma-focused therapy is also needed to get over PTSD, which you may have from your medical trauma or other things. It does not typically get better without evidence based trauma treatment, and such treatment can be hard to find. So I encourage you to seek it out if that feels relevant to you.

[u/AgileWoodpecker3273 → u/funnyushouldask]

Thank you, this is helpful and I'll answer your questions directly.

On why I was on clozapine: I developed PTSD at 18. When I sought psychiatric help at 21 I was diagnosed with psychosis, which became a schizophrenia diagnosis. No antipsychotic helped, and I eventually requested clozapine myself. It numbed things enough that I stopped caring what it was doing to me, and it did do damage, cardiac and metabolic. Every therapist, psychiatrist and clinician I've seen since has concluded I'm not psychotic and likely never was. The prescriber who kept me on it for four years told me he'd always had doubts when I asked him to remove the diagnosis, which he did. I've since submitted a complaint to the board, which my current clinicians support. I'm aware that impaired insight is itself a feature of psychotic illness, so I don't expect that to settle it on its own, but the diagnosis was removed by the person who made it.

On imaging: I've had a CT and an MRI of my brain, but neither was ordered for cognitive concerns.

On whether anyone suspected neurological involvement at the time: not that I know of, though I don't think it was being looked for. The event I keep coming back to is that I was taken off 600mg of clozapine cold turkey in hospital because I couldn't take anything by mouth. I was septic and about to have emergency surgery for a GI blockage. My outpatient psychiatrist was never involved in managing that.

You asked about delirium. I had two month-long hospitalizations. During them, mostly around the septic period, I had visual hallucinations, colors and people coming into the room, along with severe anxiety and almost no sleep. That was confined to the hospital. After I got home the anxiety and insomnia continued for months, which I attributed to the clozapine withdrawal, and it took about a year before I felt anywhere near normal. I did recover from that acute phase. What I'm describing now is a separate baseline that hasn't shifted since.

On trauma treatment: I am in therapy with someone doing trauma work, but he says my anxiety is currently too high to start EMDR. He's also the one who suggested I look into brain imaging or a neurologist, since he sees a lot of people with my diagnoses and thinks my presentation is harder to account for than they explain.

Your point about starting with screening rather than jumping straight to full testing is fair and I'll raise it with my psychiatrist. Is the abrupt discontinuation under those conditions something you'd weigh as relevant to the cognitive picture, or is the sepsis and critical illness the more likely driver?

[u/funnyushouldask → u/AgileWoodpecker3273]

Hiya. Trauma misdiagnosed as psychosis is unfortunately very common, and that is a very plausible interpretation of past events (ie that you never had psychosis). I’m sorry that happened to you. I would doubt that the clozapine has much to do with how you’re feeling now, though, but its withdrawal may have made things worse back then, and I imagine the correlation is hard to ignore.

I think the sepsis and critical illness, plus the likely effects on your mental health (PTSD worsening, depression, anxiety) are most likely to blame. Sounds like you were delirious for the lions share of your time in the hospital. Abrupt discontinuation of the clozapine probably didn’t help and likely exacerbated delirium. Unfortunately, prolonged delirium can cause cognitive dysfunction — although notably, many patients do return to baseline or near baseline after hospitalization is over. Delirium or some of its symptoms can persist after the hospital, but the insomnia could also have been due to the stopping of the clozapine, if it was serving as a sleep aid for you.

Trauma is my main clinical/research focus and I think many therapists are too conservative about starting it — but you do often need some shared language on coping skills and know how to apply them. I would trust the clinician who sees you in person better than me. I will note, many people are trained in EMDR but are not generally trauma therapists — I personally advise my patients who I am not seeing in outpatient clinic (and thus I am not their therapist) to find trauma therapists who have expertise in trauma — often means multiple evidence based therapy certifications and a clinical interest specifically in trauma. Trauma therapy can often supplement your original therapy, which can serve as supportive while you do trauma treatment.

[u/kuru_snacc]

Few things that may be helpful to add to your initial post:

• Additional medical history such as what type of cancer and treatments, type of surgeries, exact thyroid issues, basic info like BMI, diet, if you drink alcohol or use any other nonprescribed substances, if your bowel movements are now normal - physical conditions are important in getting the big picture before jumping straight to psychiatric/cognitive issues as the culprit
  
• Have you ever tried an SSRI and if not, why not?
  
• You said you got a CT and MRI at some point - were these recent? What did they show?
  
• How far out are you from last hospitalization? What is your day-to-day like and can you give a specific example / context of your new symptoms (processing, intolerance for change, etc.)?