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From “Not Complex Enough” to “Too Complex to Route” Anyone Else?
In 2024, when my insurance still covered Mayo Clinic, I tried to get an appointment because my long‑standing sleep‑wake disorder was worsening. I was told that “insomnia” wasn’t complex enough for Mayo’s criteria at the time. But the clinicians I found locally, mostly respiratory sleep specialists, had no framework for what I was experiencing.
I use the word insomnia, but it doesn’t capture what happens to me. When I go without sleep for long enough, I develop neurological symptoms: illusions, perceptual distortions, and cognitive changes that only occur during prolonged wakefulness. I remain aware that these experiences aren’t real, but they are frightening and destabilizing.
Emergency rooms have repeatedly routed me to psychiatric units, even when I’ve been clear that I’m not experiencing mood symptoms, and I am very confused so its hard to advocate for myself. Those settings haven’t been able to evaluate the neurological side of what’s happening, and I’ve never had EEG or sleep‑deprived testing during an episode.
Recently, knowing full well my symptoms could return at any time, Mayo’s appointment coordinators told me that my case was now “too complex to route,” with no clear category or checkbox for what I’m experiencing.
I’m wondering if anyone else here has lived through something similar, falling between specialties, being misrouted, or having symptoms that don’t fit neatly into existing categories. I’m not looking for diagnosis, just connection and perspective.
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@aethelwulfe: I see when you had commented on this distressing situation previously last summer, much of the comements centered on neurology and/or psychiatry, both of which specialities from which you have sought intervention. I'm wondering if perhaps a different specialty may be of assistance.
Has anyone mentioned a condition called sleep deprivation psychosis? Just because the word psychosis is in the descriptor, this is not a mental illness. It generally happens during periods of extreme wakefulness when dream states interfere. I - and others - may relate to this with something similar called hypnogogic hallucinations that occur as one is falling asleep (hypnopomic occurs when one is waking up) - it's like a sensation of motion, shadows or a nearby presence that can be very unsettling, especially if they're accompanied by auditory or tactile sensatins - hearing or feeling something, even if part of you is fairly certain there's really nothing there.
Although some neurologists and/or psychologist/psychiatrists may have experience in this phenomenon, a sleep medicine provider may be best to consult with. They're most likely the best equipped to treat severe insomnia and the sequelae. It's possible the intake personnel you've spoken with at Mayo were not familiar with this when directing your concerns to neuro because your symptoms are somewhat unusual and did not consider sleep med. All three of the Mayo Clinic facilities offer these departments and staff. Please check the following links: https://www.mayoclinic.org/departments-centers/sleep-medicine/sections/overview/ovc-20407454
and
https://www.mayoclinic.org/departments-centers/sleep-medicine/sections/doctors/drc-20407463
Do you think this would be a helpful avenue for you to investigate?