Hallucinations with Hepatic Encephalopathy

A build up of toxins in the brain can lead to confusion, memory and mood changes, depression, and even delusions. Psychotic episodes and hallucinations with hepatic encephalopathy (HE) can be some of the worst things a person with end stage liver disease (ESLD) can have. If you or someone you love is dealing with this, it takes a great amount of patience and encouragement. With help, they can get the right meds and try to reverse the effects.

losing my mind hallucinations with hepatic encephalopathy karen story

Downward Spiral

Depression – HE can start as depression. After telling my doctor I didn’t have the energy to decorate for Christmas, he put me on an anti-depressant. Well, that turned my reverse sleep pattern into insomnia. At bedtime, I took Ambien and xanax. I also hired someone to put up the tree. 

Confusion – This was tough to pin down. At first, I traveled all day, scheduling the harder things in the morning while chugging caffeine. After lunch, I often slept in my car for an hour. Eventually, I went back to the classroom teaching high school and college. I was good at my job, and my students did well on state test scores. All of my work related goals were met, but I was on autopilot.

Mood Changes – At home, I locked myself in the bathroom and cried myself to sleep. I didn’t know what was wrong, and sleep was my best friend. On a few occasions, I became belligerent and threw the remote control across the room when the noise of the television was too much for me. The Ambien probably stayed in my blood stream 24/7.

Who’s That Girl?

Memory – I took my Franklin Covey planner everywhere. It was my brain. Inside my own head was a swirl of mush, and I have only spotty remembrances of the last 18 months before my liver failed. Many times I came home from a big box store with no purchases. Other times, I had the whole trunk of my car filled and didn’t remember buying it.

Hallucinations – I was wandering around in a dream and even went outside at night chasing armadillos with a flashlight. I was convinced the critters were eating my flowers. In one of my hallucinations with HE, I even transplanted weeds from a field into my flower beds, trying to lure armadillos to eat them. I thought my mother was trying to give me secret messages and talked of it constantly. I’ve heard of people who accused their family of trying to poison them with lactulose or xifaxin.

Psychosis – I woke up countless times on the side of a highway shaking and thinking that there were wolves in the woods that would attack my car. I was too sick and foggy to drive, and actually had 3 wrecks within 6 months. My insurance cost more than a 16 year old kid with a DUI. But I kept going.

Delusional – I was in my late 40s and early 50s, so I had physical strength and could act “normal” in most conversations. I grew quieter though, afraid of sounding kooky, or just plain so zoned out that I had nothing to say. Many people have shared sad stories about a family member attacking them. Others say they sit and have constant arguments and bickering during and HE episode. 

Hallucinations with Hepatic Encephalopathy

Here’s some good news: Getting the right treatment can help to reverse all these symptoms. Finally my liver and kidney failed. I woke up after getting a blood transfusion. After the ascites was drained, and I started taking Lactulose, the fog began to lift even more. My family began to understand the meaning of brain fog from HE. I hope this helps you and your family understand how hallucinations with hepatic encephalopathy are treatable. With All my Love, Karen

Share

Facebook
Twitter
Pinterest
WhatsApp
Email

6 thoughts on “Hallucinations with Hepatic Encephalopathy”

  1. This was the worst time of my life yet I don’t remember. My poor family had to deal with so much, even watching me on the floor dying and ending in ICU being On a machine to keep me alive. Following that I was never to be alone until transplant several months later. They took turns leaving their own families to leave their states to take care of me so husband could continue to work. Please take your meds no matter what!!!!

    1. I’m so sorry for all of us that had to go through this. Being on life support while waiting must have been really traumatic for all of you. You’re so blessed to have a family that supported you like that.
      Taking meds is the most important thing. I went off of mine and got zoney. They finally asked me not to drive far from home.
      Did you know that some family members do NOT support their loved one, but think they are crazy? Of course we know that it’s tiring, but we need help to remember our meds until we can get our lives back on track.
      Thanks so much for all your support. We’ve been through a lot together. xoxo Karen

  2. I have had all that hallucinations for weeks I was dancing with myself oh lots of other things for weeks no sleep but one strange thing is the tears nonstop just with a drop of a hat one doctors new in Pittsburgh that I was lucky to be alive

    1. The dancing with yourself would make a great title for a rock song! 😀 But seriously, it’s our brain and when we don’t have access to sound thinking, it’s so very very sad.

      HE has destroyed many peoples lives and families and finances. The tears help to cleanse our hearts from all that we endure when sick dear friend.

      I’m really thankful for that one doctor in Pittsburgh. What a great story of how one single person can make a difference. I hope you’ve got the meds you need now. Thanks for stopping by. xoxo

  3. I like this blog!
    Thanks for sharing with us and the families who suffer also. My mother is having this and I will need need help.
    Thanks and good day,

    1. Harris,

      Thank you so much for taking good care of your mother. My daughter was my caregiver along with my husband. It’s heartbreaking for everyone.

      I’m happy you liked the blog and hope that your doctor, religious organization, or other social care workers can help you. Will you be able to find the support you need?

      Stay in touch,
      xo Karen

Comments are closed.

Related Posts
MASLD vs MASH: Where are you on the spectrum karen hoyt ihelpc

MASLD and MASH: Where are You on the Spectrum?

There are no FDA approved medications for those with fat MASH or MASLD liver disease. You can learn about the stages or find out where you are on the spectrum. I’ve beat liver cancer and love to encourage others to learn more about how the liver tries to heal itself. I’ve written for over a decade and have plenty of stories that can help you in your liver disease journey.

Read More »
New liver language 2023: MASH and MAFLD nomenclature terms karen hoyt

New Liver Language 2023: MASH and MAFLD

The global liver community chose new terms or nomenclature for the various types of liver diseases. The new terms are more accurate and also less stigmatizing for the patient. Although it will take time to work them into every area of the medical community, here is a copy for people who have liver disease to start with. There is no more NASH, it will be MASH, NAFLD becomes MASLD, MetALD is a new term, and SLD is the overarching term for steatosis.

Read More »
Liver #1 fan karen hoyt

Can Resmetirom Cure Nash MASH or Fatty Liver?

We’ve all been wondering: Can Resmetirom cure Nash Mash or Fatty Liver? I know the language changed and have written about that here. But what patients want to know is if it really works to reduce fat? The answer is YES and it’s a miracle for many who have been diagnosed. I’ve loaded this blog with information about the dosage, how to get it, cost, video, and the website. Let’s peek closer at how it works in our body.
Resmetirom pronounced Res met er rawm is labeled as Rezdiffra pronounced Rez Diff Ruh. It was approved by the FDA last week and it is totally changing the way we look at the future with a diagnosis of Mash. By starting with the root of the accumulation of fat in the liver,

Read More »
Make a Donation

Donate Now

Other Amount: USD

Receive the latest news

Subscribe To Our Weekly Newsletter

Get notified about new articles