From “Not Complex Enough” to “Too Complex to Route” Anyone Else?

Posted by aethelwulfe @aethelwulfe, Apr 5 1:54pm

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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Susan, Volunteer Mentor | @grammato3 | Apr 5 4:51pm

@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?

aethelwulfe | @aethelwulfe | 6 days ago

Hi Susan, Thank you for such a thoughtful response.
Not a single clinician has brought up sleep deprivation psychosis…not once. (Personally I think it needs a different name altogether; when I have spoken with people who have schizophrenia, they usually tell me to get my eyes checked). Recently read through my medical records and they even note: “atypical psychosis.”
I am familiar with the phenomenon because I have spent many afternoons reading PubMed papers , the history of the Madison Race and grand rounds on various sleep disorders. And I completely agree with you: sleep medicine is the correct specialty. What you described is right over the target
Every illusion or hallucination type you mentioned …the sensation of motion, the shadow ‘wolves,’ the spinning black shadow dots, and even the extracampine presence I named Kharon…all occurred while I was fully awake, never falling asleep. They were classic dream while awake kind of things. The accuracy of your descriptions is striking. It’s uncommon to meet someone who recognizes those patterns.
One line from research papers had an eerie resonation with my own experience: Absolute sleep deprivation is well known to lead to a decline in mental function, including cognitive and behavioral performance and, if prolonged sufficiently, personality changes, psychosis, and death.’”
Dr. Waller Ernest Mayo Clinic 2008
My concern has been that many sleep medicine practices are primarily respiratory… focused on airways and apnea. It is extremely difficult to communicate symptoms when some of them (like the visual clock illusion) get interpreted as a part of a neurological exam (incorrectly by my brain) rather than as a sleep intrusion phenomenon.
The larger structural issue is that I have been routinely routed into psychiatry, even when I tried to make appointments with sleep medicine providers. ERs repeatedly sent me back to psychiatric hospitals without reflection. That was a mistake, every time, and it set everything back.
My research has also led me to believe that a sleep neurologist would be ideal… someone who has at least heard of or treated conditions like narcolepsy type 1 or Kleine-Levin syndrome. (My condition is almost the exact opposite of theirs.) I was even rejected twice because “insomnia” was not considered complicated enough. And now my symptoms don’t even have a checkbox in the intake forms. “Insomnia” really doesn’t quite capture what it means to be awake for 240 hours straight, while trying multiple medications to no avail. I think I leaned heavily on those florid neurological symptoms because I am/ was afraid of getting rejected again; it’s a way to communicate the severity without getting automatically dismissed. I even have a unilateral movement disorder that becomes explosive and involuntary when I experience positive emotions (excitement.) I also have a movement disorder that becomes explosively active with positive emotion. A sort of anti cataplexy. It’s involuntary, patterned, and entirely incompatible with the idea that this is ‘just insomnia.”
At this point, sleep has become a kind of multi subscription luxury service, several medications, insurance hurdles, multiple doctors.. just for what amounts to neurochemical duct tape. The hammer and anvil effect of the medications makes the condition look episodic, but I know it is not. It had a subacute onset, but it is present every single night.
I think I am trying again now because I am fully aware of the danger that total sleeplessness represents. I am finally cognitively intact enough to advocate for myself. (There was a period where the illusions made me functionally illiterate and the severity of the movement disorder(s) limited my ability to type or write.)
Your links are genuinely helpful, and with the appointment coordinator’s help, I will continue pursuing that sleep medicine,(neurological) type directly.
Even the respiratory focused sleep medicine provider I saw told me directly, “I have no idea what is causing you to not sleep at all.”
I have actually stopped using the word “insomnia” because it is woefully inadequate for what is happening. A CBT-I has no power here, its simply not relevant when sleep initiation fails entirely. I have been referring to it as Hypnarchic Nullsomnia, meaning a complete failure of sleep initiation, because that term captures the pattern farm more accurately than “insomnia”, which suggests difficulty sleeping rather than the total absence of self generated sleep.
I hope I won’t get shut out this time. And I genuinely think this is the most helpful avenue for me to pursue.
From, Aethel