Post ICU Nightmares / Hallucinations

I was in the ICU off and on for 5 weeks. The first week I was in a medically induced coma and on ECMO life support. While on ECMO I had very intense dreams. This was almost 6 months ago and I still remember them. In them I kept going to the edge of death and just making it back. After they woke me up I had intense hallucinations for weeks. They were always about someone trying to harm me or impede my care. I couldn’t differentiate reality from my dreams and hallucinations. I still get horrible anxiety thinking about them and even writing this now. Every night when I go to sleep I still get hallucinations before I fall asleep and when I wake up during the night. Has anyone else experienced something like this? Has anyone found anything that has helped to overcome the anxiety? Thank you for reading and for any advice.

Hi @lgpierson, Several members of the ICU group have talked about experiences with delirium in both the intro discussion and the discussion titled "Delirium". Here are the direct links:
- Post-Intensive Care Syndrome (PICS) - Let's talk https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/
- Delirium https://connect.mayoclinic.org/discussion/delirium/

lgpierson, as you probably know, ICU delirium is a sudden, intense confusion that can include hallucinations, confusion, and paranoia. Do you experience ongoing symptoms since your ICU stay?

Hi @abbyweston and welcome to Connect. You'll notice that I moved your message to this existing discussion about hallucinations after being in the ICU. I did this so you can meet others who have had similar experiences and understand, like @kariulrich @deltakay and @jslate. Click VIEW & REPLY in the email notification and you'll be able to see past posts.

Abby, it must be so stressful to have these hallucinations, especially when you think people are trying to impede your care. It sounds like you are able to differentiate between hallucinations that happen before you sleep and dreams that happen while you're sleeping. Are they different? Do the hallucinations happen during the day too or only before going to sleep?

Hi, I can differentiate between dreams and hallucinations. When I was in the ICU the hallucinations would happen at any time of day. Now they only happen at night. In the ICU they were auditory and visual hallucinations but now at night they are only visual.

Has anyone here tried CBT (cognitive behavioral therapy)? https://adaa.org/understanding-anxiety/posttraumatic-stress-disorder-ptsd/treatment

I had a liver transplant in February of 2019. I was in the ICU for 11 days due to multiple complications. I had dreams that I thought were reality when I woke up. These dreams/hallucinations gradually tapered off and ended by the time I was discharged after 6 weeks in the hospital. I remember waking up and conversing with my husband, nurses or techs about what I thought was reality and finally realized it was from a dream. I’m sorry for those who continue to have this problem. The dreams/hallucinations were something that I was not aware of prior to my transplant. I feel this information should be included in pre-transplant education. I did “google” hallucinations after surgery and found information that it can occur. It made me feel better to know this does happen to some people.

@flagal22, I want to welcome you to Connect, and to thank you for reaching out to others by sharing your experience.
I congratulate you on your liver transplant a couple of months ago. I am a liver and kidney transplant recipient and I also spent some time in ICU prior to my transplant. I did not have the dreams or hallucinatioins, but I did experience memory gaps that left me confused and unsettled. I had to ask my husband to fill in the details afterwards. It sounds like the dreams/hallucinations occurred during your time in the ICU. Were you conscious or aware of anything else during your ICU time? Were you frightened when you realized that they were not reality? Do you know whether this was a result of Hepatatic Encephalopathy (HE) that many liver transplant patients have experienced?

I want to invite you to the Transplant Group where you can meet other new and experienced transplant recipients. How are you doing since your transplant?

@rosemarya I had the dreams in the ICU and after moving to the liver floor. My memory issues began 7 months before my transplant with a severe episode of hepatic encephalopathy, I was totally incoherent one morning, my husband took me to the hospital and it took 2 1/2 days until my ammonia level was lowered and I was discharged. I did not have a great memory after that including after my transplant. I would ask the same questions over and over. Luckily, I no longer have this problem.

@flagal22 thank you for sharing your experience with your dreams. As you stated it can be so helpful to be able to normalize these experiences and understand that others have gone through this as well. Have you had any continued issues with dreams during your recovery at home? It is not unusual for people to experience vivid dreams even many months following a critical illness.

I have dreams post-transplant not vivid or believe they are reality like the weeks after transplant.