Join The Discussion! Online support for those affected by PICS

@andreab ,
hello Annie,
I normally post in an other discussion group (heart for example), but I saw your invitation in my daily digest.
I wonder, if we are discussing the same things, as I am not familiar with the english abbreviation PICS. in Germany we use the name "symptomatic transitory psychotic syndrome". I was suffering from this syndrome 10 years ago, wenn I had a severe car accident. a helicopter brought me to the nearest emergency hospital. I was unconsious and was in coma for a week. my Psychose started nearly immediatedly after waking up, I had visual and acoustic hallucinations.everytime when I closed my eyes I saw beautiful pictures of hindu temples in Rajastan/India, where I had been a couple of years earlier. It was impossible to push these pictures away. these visual hallucinations lasted 3 days. I never told anybody about this. years later a discussion member on television mentioned this syndrome and his experience, and I said to myself: that's it!
my question to you: are we talking about the same disorder?
the symptomatic transitory psychotic syndrome (in german "Durchgangssyndrom") is a complication of an impaired cortical blood circulation during the trauma.

Hi @yoanne,
I'm glad you found this post by Annie. I happen to know that at Annie is away at a conference right now, so she may take a little longer to respond than she normally would. I'll let her respond to your specific questions.

In the meantime, you can read more about PICS on the PICS page here: http://mayocl.in/2kgZDUi and in Annie's video
https://youtu.be/Wr3MHj7PotE

If you'd like to meet other members talking about their experiences, please see this discussion thread:
- Post-Intensive Care Syndrome (PICS) - Let's Talk http://mayocl.in/2j73pv7

@yoanne,
Thanks for sharing your experience. I personally have not heard of this syndrome and from a quick search in our databases, I am not seeing this described in our literature. It sounds as though you were given a very specific cause to your hallucinations - "impaired cortical blood circulation during the trauma". Post Intensive Care Syndrome (PICS) is any new or worsening physical, cognitive, or mental impairment following critical illness. Hallucinations, delirium, and other cognitive changes are a piece of this although not exclusively secondary to impaired cortical blood circulation. Right now risks factors for PICS are continually being studied but current thought is that risk factors include, but are not limited to: mechanical ventilation, longer length of stay in the ICU, older age, sepsis, use of sedatives and development of delirium. Thanks again for your response and please let me know if you have any other questions!

Collen l have been in icu twice and both times l can't remember anything the first time it was in 1997 and l dont know how long l was in there but my family told me one of the pastors at my church told one of the medical staff l wouldnt be in there the next day and Praise God l wasn't. Now l worked at a hospital where l was admitted then after that l went to another hospital for rehab. My family told me they were doing physical therapy at the first hospital and my sister would tell me she brought food for me to eat but l can't remember any of that. The next thing l could remember was Princess Diana had died and l was in the dinning room telling everyone to pray for their food. The next time was in 2014. I don't remember being in icu or coming out the only thing l can remember was being in a dark room with restraints. Thats such a horrible feeling and memory but that was true. Then my family told me about test that were ran, seizures l had and being combative and that's not me. I was in a teaching hospital instead of where my family wanted me and the next thing l remember is students seeing you. Th en finally l went to another hospital for rehab. So it seems so weird when you can't remember and even when people come to visit you , you can have a normal conversation. And even sometimes now l wonder if l said something that was rude or unpleasant to someone. Its not like you are crazy its just a portion of your life you can process and people you try to explain it to think something is definitely wrong with you. I try to explain it to my general practice doctor, neurologist and even psychiatrist and all come back with your delusional or hallucinating. So l know their is a lot to learn and may never have an answer too. That's life in general and we can all learn from each other. Well l am here in Rochester and tomorrow l go for my PET but l know it will be normal and then so more test. Can't wait for the answers to a second opinion so far its been everything l knew deep inside. I may not be able to fill in all the gaps but l came along way from where l started.

My first experience was this was watching my fathe go through it after a lengthy surgery. At that time no one had any explanation to explain his behavior or beliefs. He has very little memory of it.
I was a patient at St Mary's in June 2016. I had a major surgery and was in ICU after surgery. Apparently, I did good for several days and was up walking and moving, talking. I have NO recollection of any of that. That surgery was on June 8th. I was taken back to surgery on June 13th due to complications of necrosis and lost part of my esophagus, the entirety of my stomach and some small bowel. Surgery again June 14th to do foregut reconstruction. Unable to wean from ventilator. Surgery again on June 20th for a tracheostomy and bronchoscopy to clean out lungs. I have weird memories of some f this time that are obviously false, but when I think about them they are as real as can be. I suffered from delirium, I had no idea where I was, I made up people, I couldn't comprehend things. When I returned back home to Kansas I was diagnosed with PTSD and panic attacks. I have never had panic attacks until after this ordeal. Been over a year and I'm still working through it.

Welcome to Connect, @candice. I'm glad you found this post about the PICS online support group. I invite you to join the discussion here
https://connect.mayoclinic.org/discussion/post-intensive-care-syndrome-pics-lets-talk/

There are many members talking about similar issues like no recall, delirium and PTSD.