Total Insomnia Psychosis Hallucinations and Delusions

Posted by aethelwulfe @aethelwulfe, 2 days ago

I’m very confused as to the lack of testing I received. When I turned 22 my brain stopped experiencing sleep drive and I went to the ER where they did nothing but send me to a psychiatric hospital, because the sleep deprivation was causing me to hallucinate and have delusions and hypersexuality, hypertension, lots of night sweats. They never asked me about sleep, they never ran a polysomnograph when I was not sleeping at all, I’m talking over a week length of time with zero hours and zero minutes. I’d worried that the doctors missed something. I’ve seen different diseases that can cause this, Anti-NMDA receptor encphalaits, Morvans syndrome, heavy metal poisoning, fatal sporadic insomnia, and delirium tremendous. The stupid DSM says mania is a reduced NEED for sleep, and all the psych hospitals and ERs (3 different ones) tested for none of the above, pretty much just drug tests. They’ve all ignored the hypertension as high as 160/80. The psychiatric hospital ignored high white blood cell counts.
But I’m lean.
I got sicker last summer and had a terrible psych doc who put me on a torture of haldol mixed with lithium Benadryl and Ativan. When I had a sleep test done even on all that I still had insomnia and zero deep sleep and a sleep latency of an hour on all those drugs. But I never had a sleep test without all the medications so it’s an invalid result. Why don’t they do sleep tests in the hospital when I’m having symptoms before they throw me on all the drugs like they are candy? I got off that cocktail due to side effects that required hospitalization to treat. That second hospitalization they gave me trazedone, melatonin with some other benzo melt under tongue, and I didn’t sleep there for the entire stay (240 hours). I had illusions of the toilet telling me to hurt myself, peoples faces melting and morphing into different people, seeing black “big” dots everywhere and shadow wolves, The text in my books and journals started to say “The strippers told you to pee in the shower, and you burn in hell,” I even drank toilet water to avoid being reincarnation as a dog. My brain was so dysfunctional I couldn’t play card games, scrabble, or concentrate on the TV or remember even a paragraph that I read. I had a neuro cognitive exam where I scored just borderline above severely impaired on most things when I was out of hospital getting 2 hours of sleep and lots of trazedone. I now require dayvigo, Queitapine, trazedone, and melatonin to get to sleep at all, all close to max doses.
Does anyone else require that much stuff just to fall asleep at all? Do you have illusions and hallucinations like I mentioned? Has anyone else ever been cured of this total insomnia and gone drug free? I’ve also have good sleep hygiene, but found CBT-I to be useless, especially the getting up part which they used as “evidence” of mania as I would just pace around a little bit out of my bedroom. don’t get why sleep doctors don’t care or want to treat me. I don’t get why they send me to psychiatric hospitals which are really bad for sleeping. They check on you every fifteen minutes, and have loads of patients in buildings with terrible acoustics and other patients loudly gping through some emotional or scary brain stuff and can be quite loud. my neurologist wanted me to see a sleep doctor, but the sleep doctor was just like your just a crazy person so have the psychiatrist treat you.
I’m so scared that the medications will stop working again.
How long will this cocktail last before I descend into the hell of total insomnia again?
The neurologist really hasn’t done much else besides an MRI for me usually end up seeing his NP who resent referral to a sleep medicine doctor that didn’t give a shite about the total insomnia, and I’m thinking about not going to a follow up appointment because I just don’t see the point. It’s like once they throw on the schizo label everything else gets ignored. The psychiatric hospital never provided any information to me, the doctor didn’t inform me of this diagnosis or explanation of it and why I can’t sleep. I only saw it in medical records I had to request. Not a single mention of the total insomnia or the horrible side effects that caused my re-hospitalization there.
Has anyone had insomnia so bad that they have illusions and hallucinations and end up going to the ER, and has the ER never done anything for you besides nothing but basic blood work or just sent you to the psychiatric hospital and ignored the insomnia?

I’ve lost any trust in the medical system to treat me becuase of such bad experiences with psychiatric hospitals. They just don’t seem to have the facilities, tools, or expertise to diagnose and treat safely or efficiently.
Is there anything as an emergency sleep medicine polysomnograph or is it all outpatient. Ultimately I really hope that there will be some test that gets a real biologically valid medical diagnosis that can be cured, am I stupid and wasting my time and for this? I really don’t want to be on psychiatric pills for the rest of my life if I have a cureable disease that just isn’t being diagnosed.

Interested in more discussions like this? Go to the Sleep Health Support Group.

gloaming | @gloaming | 2 days ago

Wow, sorry for this horrible experience. Polysomnography is like any outpatient procedure (yes, it is outpatient in all but extreme cases where an ER doctor might ask for a favour from a local lab to get you in as a special and urgent case, but 99.99% are by appointment and by referral, usually). If you have no unusual sleep behaviour, they can't do much. So, no unusual and sustained limb movement, no REM sleep patterns at all, no deep sleep...that kind of thing, they might have some treatments. But if you are awake, there's not much they can assess.
I take it you have had a brain scan to check for tumors or ischemia/stroke? Blood chemistry is normal? Any childhood trauma that might be suppressed but at play? No general anxiety disorder diagnosed? (BTW, the DSM is a political product in that, every three/four years ,the big wigs in psychiatry get together and there's a lot of lobbying behind the scenes to get the latest darling 'syndrome' or 'disorder' included, something someone has gotten a PhD writing and that many others like because it seems to accurately model or to explain a certain behaviour. The DSM sounds like a modern and current diagnostic tool, and in some ways it is, but it's also a product of popularity contests in the medical establishment).
I'm sorry I can't offer more. Hopefully someone will read your post and have some similar background and offer you some suggestions. I wish you the best of luck.

ariza9110 | @ariza9110 | 2 days ago

go to another neurologist and ask for a eeg and spinal tap you need to be assesd for much more and you are being criminally mistreated by the current doctors for sure

ariza9110 | @ariza9110 | 2 days ago

from chatgptFirst: You Are Not “Crazy” for Asking These Questions
Your concern that something neurological or autoimmune might be the root cause of your insomnia and related symptoms is completely valid. The problem is that medicine — especially emergency and psychiatric systems — often siloes care in ways that miss the complexity of cases like yours.

You’ve already identified:

Anti-NMDA receptor encephalitis

Morvan syndrome

Fatal familial insomnia (FFI) / sporadic fatal insomnia

Heavy metal toxicity

Delirium tremens (usually tied to alcohol withdrawal)

These are all real disorders, some rare, some potentially reversible, many hard to diagnose without specific testing.

If someone is showing true total insomnia, hallucinations, cognitive decline, severe autonomic symptoms (e.g. hypertension, night sweats, temperature fluctuations), it should not be chalked up to “just psychiatric” without a thorough neurological, infectious, autoimmune, and toxicology workup.

🚨 Why Aren’t These Tests Run in the ER or Psychiatric Units?
Because:

ERs triage based on immediate life threats. Sleep issues, even severe, often get labeled psychiatric unless seizures or organ failure are occurring.

Psychiatric hospitals often lack lab capacity and default to DSM-based mental illness treatment. Deep diagnostics are rare unless initiated before admission.

Sleep studies (polysomnography) are generally outpatient and not considered an emergency test unless there's suspected sleep apnea causing cardiac or seizure risk.

This is a massive systems failure when someone is clearly not sleeping at all for days/weeks and is showing neurological breakdown — hallucinations, paranoia, autonomic dysfunction. You're right to feel failed.

🧪 What Should Have Been Done?
For someone with true total insomnia, hallucinations, and cognitive impairment, a neurology-first approach should have been considered. That includes:

MRI of brain with contrast (you had this — unclear if contrast was used)

EEG (to rule out non-convulsive seizures or encephalopathy)

CSF analysis via lumbar puncture (can test for antibodies related to autoimmune encephalitis, infections)

Autoimmune encephalitis panel (blood + CSF)

Heavy metal panel (mercury, arsenic, lead, etc.)

Paraneoplastic antibody panel (some sleep disorders are triggered by hidden cancers)

Thorough infectious disease panel (Lyme, syphilis, etc.)

Polysomnography + multiple sleep latency test (MSLT) — while OFF medications, ideally inpatient at a specialized sleep center

🧠 What You Described Could Be Consistent With:
Morvan’s syndrome (autoimmune, often with hallucinations, total insomnia, and autonomic instability)

Anti-NMDA receptor encephalitis (especially with hypersexuality, paranoia, hallucinations, and sleep changes)

Autoimmune/paraneoplastic encephalitis (can present primarily with psych symptoms)

Rare neurodegenerative diseases (FFI is exceedingly rare but possible — especially if you’re of European descent with family history of unusual dementia or early death)

😔 Why Were You Dismissed?
Once you're labeled with a “severe mental illness,” like schizoaffective disorder, diagnostic overshadowing happens. Meaning: everything you say gets interpreted through that lens.

Hospitals often don’t take hallucinations due to sleep deprivation seriously, even though they can be as intense as psychosis.

Polypharmacy (Haldol, lithium, trazodone, quetiapine, benzos) masks and complicates diagnostic clarity.

Insurance and system pressures: It’s cheaper and faster to medicate and discharge than to do in-depth testing.

🧩 You're Not Alone: Others Have Reported This
There are people (especially on Reddit, Twitter/X, and niche forums) who’ve described nearly identical experiences:

Going days to weeks with no sleep, without any help or proper sleep study.

Getting sent to psych hospitals where their symptoms worsened due to terrible sleep conditions.

Finally getting diagnosed with autoimmune or rare neurological conditions, but only after years of being misdiagnosed.

Others, sadly, never get answers and remain on heavy meds long term, uncertain if the cause is biological or psychiatric or both.

🧭 What Can You Do Now?
You still have options. Here are a few steps to consider:

1. Get a Sleep Study at a Teaching Hospital Sleep Center
Try to find a university-affiliated sleep medicine center that collaborates with neurology, not just psychiatry. Ask specifically for:

Inpatient sleep study, or

Polysomnography OFF medication (if safe to taper temporarily)

2. Find a Neurologist Specializing in Autoimmune or Sleep Neurology
You need someone who is not an NP and who understands encephalopathy, autoimmune brain disease, and rare sleep disorders.

Use keywords when searching like:

“Autoimmune neurology”

“Sleep neurology”

“Encephalitis center” or “Autoimmune brain disease clinic”

You may need to travel.

3. Request a Full Autoimmune Encephalitis Workup
This often requires:

CSF analysis (spinal tap)

Serum antibody testing

Brain MRI with contrast

EEG

Mention your history clearly, and emphasize:

Total insomnia

Autonomic symptoms (night sweats, hypertension)

Hallucinations and cognitive decline

Non-response to psychiatric medications at times

4. Find a Patient Advocacy Group
Organizations like the Autoimmune Encephalitis Alliance, NORD (National Organization for Rare Disorders), or even r/insomnia and r/encephalitis on Reddit might help you connect to patients and doctors.