Huntington’s Disease Psychosis: My Experience and What I Learned for My Future with HD

Psychosis is an infrequent psychiatric symptom of Huntington’s disease (HD), thought to affect between 3% to 11% of people with the condition 01. Signs of HD with psychotic symptoms are similar to schizophrenia-like psychosis symptoms, including delusions and/or hallucinations, agitation, and disorganized thought processes 02 .

Recovering from a psychotic episode, HD patient Sarah Foster shares her experience with Huntington’s disease psychosis, and how she and her husband, Randy, have prepared for possible future crises.

Most days, I think choosing to live in the middle of the forest - with its spotty internet service, scarcity of hospitals, wriggling knots of winding roads, and the need for folks to keep helicopter insurance policies - was worth it.

This fiercely beautiful place is our last grand adventure. A chance for us both to find happiness and peace before HD has the final word. The slowed-down lifestyle suits me. I seek simple opportunities. I strive to get sunshine, exercise, and plenty of dog time. I'm even using the exercise bike we almost sold because I hadn't used it. When I can't sleep, I visualize mixing primary paint colors to create the natural, inky dark of the night sky.

On good days, I can fool myself into believing that my Huntington’s disease won't get any worse. That this is as bad as it will get.

I guess that's not the worst mindset. But I'm now also learning to prepare for crises because I found myself unprepared for a psychotic episode. I had forgotten that HD with psychotic symptoms was even on the menu.

It’s a massive task to keep up the momentum when managing HD

Help 4 HD International recently sent an assortment of educational materials I can use to let people, especially first responders, know what to expect should they encounter me.

I organized and stacked glossy stickers with HD symptoms printed on them alongside copies of Guide for First Responders about Huntington's Disease. This guide included a bit about HD with psychotic symptoms, which (though we didn’t know then) would come in useful later. I designated the spot on the dining table by the door as its launching pad.

More often than not, though, I forget about the things I organize. For example, I kept putting the same therapy worksheets for HD speech issues in a file for many years, unread and forgotten.

I had been pursuing several lifestyle goals, like good sleep habits, but these had stalled recently. I had also become increasingly impatient with the limits of rural healthcare. Lack of resources meant being on a waiting list for six months, only to find out that the person we’d been waiting for had moved away or had lost interest in learning about HD.

My lengthening list of HD symptoms made me isolate myself even more. I let my husband speak on my behalf in an ever-increasing number of triggering scenarios. I also developed a verbal tic, a grunt, that preceded anxiety, the likes of which I hadn't felt in years.

Randy said that after the tic began, I withdrew. I couldn't sleep because I was on a confused quest to get ahead of unrelated things while ignoring the growing problem.

Psychosis can be one of the psychiatric symptoms of HD

Burying my head in the sand was a recipe for anxiety. Then, for nightly anxiety. Then there were fits where I cried myself to sleep in Randy's arms, covered by the weighted blanket. We'd have music on and turned up high as I tried to drown out the bad thoughts.

On the day of the crisis, Randy's touches, words, and all the other things that usually soothed me, didn't.

I lay on our bed like I was nailed to it, trapped. I would rapid-fire requests for things that could comfort me, like tea or water, but would refuse or forget about them when they arrived.

We had no idea that these signs pointed to the onset of Huntington’s disease psychosis. As we tried to figure out what was wrong with me, the only person who could explain my subjective experience – i.e., me – couldn’t explain a thing.

When the hallucinations and delusions came, I knew they were not my thoughts. It was, at first, a show I tried to watch from a balcony, hoping I would eventually fall asleep until morning.

That didn't work.

My hallucinations became somatic – I could feel physical sensations

Instead, I was given a set of rules, like rules I imagine a hostage might be given. The first rule was that I would be killed if I told Randy about the rules. I searched for ways to tip my hand, to let my husband know.

I could feel my body become so hot that I feared I would combust right there on the bed. After Randy confirmed that my body temperature was normal, he placed ice packs on my trunk and limbs at my request. I believed I was desiccating. Turning into a desert of my own cremated ashes. When the dryness hit my circulatory system, I was convinced I was running out of blood, the somatic hallucination meaning I could actually feel my veins flatten.

The confused part of me latched onto the rules of this land where dark fantasies were real. The following rule told me that if my veins became wholly depleted, I would die.

Panic ensued. I was free falling into oblivion until I was caught by a net fashioned by the all-knowing, inky darkness in me. It had always been there, and now it would tell me what to say and do. Somehow, I had skipped my life, and this was all I had left. So, I clung to the developing powers and flood of ideas.

To Randy, I tried to convey that I was in a state of emergency that was real and unsolvable. I needed to be taken to a place, or we needed to call someone. I was indecisive. Stay home. Go to the ER. Call an ambulance. Around and around I went, shifting the plan before my husband caught up.

I thought I was dying.

Delusions made the most innocuous actions terrifyingly suspicious

Randy knew that I wasn't dying. He didn't know what was happening. He was waiting for my feedback, but I could not or would not provide it.

I trust my husband completely, on a primal level, but the new voice urged me not to.

Randy weighed the facts and possibilities: My life wasn't in danger. I may or may not need urgent care. I could be committed and taken to an institution that was not designed for patients like me.

My husband wanted to figure out what kind of help I needed. When he asked specific questions like whether I had a headache, numbness, had eaten, or had taken meds, the answers were usually correct. But when he asked me what was wrong, I couldn't explain. He was concerned that I may have had a stroke.

Meanwhile, I was bargaining to keep the mother of all delusions at bay. I was told that my husband wanted to kill me. It was so devastating that I was allowed to make my own rule as a gift for good behavior. If Randy said a specific, but ordinary, word, let's say it was "cabinet," it would confirm that he wanted to kill me, and his appearance would change.

If he didn't say "cabinet," there was hope we could find a way through this. But Randy did say "cabinet" when he was in the kitchen getting something for me.

It was terrifying to wait for his return. His face had a square shadow mask over it made with photo-negative material, and that was my secret proof that he wanted to kill me. I figured that's why he wasn't looking at me.

Randy wasn’t looking at me because he was concentrating.

During one lucid bubble fueled by the love and trust I have for him, I was able to convey that I was having this delusion. Then, the paranoid, sinister, brain-deteriorating version of me operating under Huntington’s disease psychosis (unknown to us then) told my husband that letting me die would be a great budget saver.

That emotional snakebite was rooted in the deep shame and guilt I have about polluting his life with this disease.

My hallucinations were my reality – but no one could understand me

Pretty soon, I was in the emergency room.

An array of people asked, "What's wrong with you?"

To this, I repeated, "If you swab my mouth with water, you'll understand me perfectly," for hours. They didn't swab me and didn't understand why I was becoming more agitated and incoherent.

But HD has affected my communication skills anyway. Likely, I wouldn't have been able to describe my experience even if my speech was clear.

For me, it was an impasse. I was stuck at "What's wrong with you?" for hours. I would go no further until they moistened my mouth.

In the thick of it, I thought it was all so obvious. I couldn't pay attention to the medical team's incorrect questions. I was mismatched to their universe.

We were wasting our time with one other.

Randy said that sometimes I was angry and argumentative. But, when I was calm, it was a sinister type of calm. Even toned, monotone, emotionless. I was speaking things as if they were fact, like that he was trying to kill me.

I used such a scornful tone with all the emergency workers. The haughty way my mother, who’d also had HD, always spoke to everyone. The tone I swore I would never use.

The saline IV helped. All of my tests were good, including a toxicology screen. As I was coming to, I noticed the whole encounter had occurred in the hallway of the ER. I began to respond to healthcare workers when they said my name loudly.

Taking precautions and crises planning

I had been recovering from an infection. Randy speculated that the episode may have been triggered by an electrolyte imbalance due to dehydration.

Whatever it was had been temporarily sated, and I was released. We were both going to need to recover from this experience, and I have since added this episode to my Potential HD Hazards List.

Randy was driving as I was coming to, reclined flat in the passenger's seat, my body swinging with each familiar curve.

Every star extinguished itself, leaving an inky dark sky for the ride home.

This crisis was fueled mainly by confusion and lack of information. We didn't know what we needed and how to ask for it. In our panic and bewilderment, we'd left the Help 4 HD stickers and Guide for First Responders about Huntington's Disease on the launch pad beside the door.

Had we brought it with us, we would have known that the psychiatric symptoms of HD can include psychosis, with signs such as hallucinations, paranoia, and delayed processing of information. Care workers would have known to check for psychotic symptoms and that I wasn't drunk or under the influence of drugs. They would have known how to best communicate with me, and that stress could exacerbate my symptoms.

Before the next sunset, Randy took my health alert information to the emergency call center. So, the next time a call comes in from my number, a card pops up to explain to the rescue workers about Huntington’s disease psychosis and what to expect.

I hope that specialist HD care will become more available

HD Reach, in collaboration with the UNC Huntington's Disease Program, is launching a satellite program that will improve access to specialized care in my neck of the woods. This would be a dream come true.

The program uses an in-clinic telehealth video station to bring expert HD care to the UNC Pardee Neurology clinic, in the Asheville, NC area, and the region will have its own case manager. As the population of HD patients increases, UNC HD Program providers, like Dr. Claudia M. Testa, will periodically visit the UNC Pardee Neurology clinic.

That's only a two-hour drive. In the mountains, that's a stone's throw.

My husband’s acceptance and understanding helps both of us process what happened

We're still processing what happened. I asked how my husband stayed calm and methodical throughout the crisis.

He said being a journalist and marine taught him how to function and stay in problem-solving mode under duress.

"But," I said, "some say that trauma leaves a mark, like a nail hole left from a picture." I am worried about the cumulative damage my words may have on him.

"After a while," said Randy, "the wall has so many nail holes, it becomes a design. I can work with that."

Sources

1. Back to contents.

   Rocha Natalia P., Mwangi Benson, et al., The Clinical Picture of Psychosis in Manifest Huntington's Disease: A Comprehensive Analysis of the Enroll-HD Database, Frontiers in Neurology, Volume 9, 2018.
   https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2018.00930/full.
   Last accessed October 8^th, 2024.

2. Back to contents.

   Jay JA, Kumar V, Garrels E, at al., Management of Neuropsychiatric Disturbances in Huntington’s Disease: A Literature Review and Case Report, Prim Care Companion CNS Disord. 2023;25(1):22cr03265, 2023.
   https://www.psychiatrist.com/pcc/management-neuropsychiatric-disturbances-huntingtons-disease-literature-review-case-report/.
   Last accessed October 8^th, 2024.

The information presented is solely for educational purposes, not as specific advice for the evaluation, management, or treatment of any condition.

The individual(s) who have written and created the content and whose images appear in this article have been paid by Teva Pharmaceuticals for their contributions. This content represents the opinions of the contributor and does not necessarily reflect those of Teva Pharmaceuticals. Similarly, Teva Pharmaceuticals does not review, control, influence, or endorse any content related to the contributor's websites or social media networks. This content is intended for informational and educational purposes and should not be considered medical advice or recommendations. Consult a qualified medical professional for diagnosis and before beginning or changing any treatment regimen.

NPS-ALL-NP-01394 OCTOBER 2024