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

@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?

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

@aethelwulfe: You have definitely done quite a bit of research here and I can definitely relate to having to be your own advocate. This is another link I found: https://www.mayoclinic.org/medical-professionals/pulmonary-medicine/news/mayo-clinics-center-for-sleep-medicine/mac-20555243

Additionally, the organization that oversees sleep medicine professionals in the US is https://aasm.org/. They may be a helpful resource for you.

Please let me know once you connect with a provider who can hopefully assist you.

I suffered through several months of insomnia and endured several of the side effects, you describe. I would be awake, but if I closed my eyes, it was like being in a room with all kinds of strange people. I met with a sleep specialist at University of Louisville Physicians, who referred me to Dr. Ryan Wetzler who has expertise in insomnia related sleep disorders. He treats in person or by video conference. drwetzler@sleephealthlou.com. Last night I got just over 8 hours sleep and I don't see the strange people anymore. I highly recommend him.

@wilmslow: So glad you found relief from your sleep issues and are offering this recommendation. Can you provide some of the techniques that Dr. Wetzler is know for in his practice and how many sessions you required before you attained relief?

I had six sessions over a 3 month period, providing him with weekly sleep reports. His area's of treatment are: Cognitive-Behavioral Treatment of Insomnia (CBT-I): Chronotherapeutics for Circadian Rhythm Sleep Disorders: Cognitive Behavioral Management of Hypersomnia: You can find his web page at sleephealthlou.com.

@grammato3
I was recently declined by the Sleep Medicine department, the explanation was that they didn't know what else they could offer beyond what my current providers are doing. The difficulty is that my current providers are a respiratory sleep specialist and a psychiatrist, and both have told me they have no idea what is causing my total insomnia or the neurological symptoms that come with it.
Because of that, I called the appointment office and asked my case to route to neurology instead. I also have involuntary unilateral explosive movements, and a hip twist. So it seems like an appropriate specialty.
My concern with this, and the appointment rejection is diagnostic overshadowing. Once a psychiatric diagnosis is in the chart, it can act like a total eternal eclipse, everything gets interpreted through it, even when the symptoms don't fit. I am worried that is happening in my case, especially since the many treatments I've been given so far haven't worked, made things worse, and no one has been able to explain the underlying cause.
I am hoping neurology will at least review the case, because the sleep wake issues I experience do not seem to fir the respiratory or psychiatric categories I have been placed in. I don't drink, I don't smoke, I don't use illicit or recreational drugs, I don't drive recklessly, I don't get arrested, I don't go on spending sprees, I don't self harm,I don't have delusions of grandeur, and when I am awake for days, I spend a lot of time and effort trying to sleep, and I certainly don't feel euphoric, even if paradoxically for a moment sleep deprivation triggers more psychical energy biochemically; one other key difference is that I know I am sick. My concern is that the bipolar diagnosis is not only inaccurate but has repeatedly lead delayed appropriate medical evaluation. Several providers have acknowledged they don’t know what is causing my symptoms, yet the psychiatric label keeps redirecting the focus away from neurological work‑ups that have never been done.
Though I messaged the AASM I will continue to look and see if there is anyone, but CBT-i is really not going to cut it.

@aethelwulfe ; that must have been disappointing to hear. I have no idea what criteria is reviewed or necessary to become eligible but I'm not aware of diagnostic overshadowing being an issue at Mayo; perhaps CBT is an integral part of their management that has not been beneficial to you but I really cannot say. That appears to be what helped @wilmslow; have you tried contacting the provider in their post if you felt that might be a lead?

Hopefully you are correct that neurololgy is the way to go in regard to digging deeper into your issue. Another consideration might be an integrative approach, although again I'm not totally familiar with the program aside from doing some investigation/treatment of REM disorders: https://awcim.arizona.edu/

Keep me posted on your progress please.