Post-Intensive Care Syndrome (PICS) - Let's talk

Have you heard of Post-Intensive Care Syndrome? Sometimes it’s called post ICU syndrome or PICS. PICS is defined as new or worse health problems after critical illness. These problems can affect your mind, body, thoughts, and/or feelings.

On Connect we would like to bring together people who have been affected by critical illness, and hopefully lighten the burden you bear. Patients and family members welcome.

Grab a cup of tea, or beverage of your choice, and let’s chat. Why not start by introducing yourself?

@rosemarya

@jheitmann – Hi Jon, Welcome to Connect. Your experience and your survival are something that I have not experienced. And I am happy that you have come to Connect to talk about your coma and ICU experience.

I was not in a coma during my ICU experience with liver failure and kidney failure, but I experienced lapses in time where I was not sure what was happening around me and to me. It caused me much concern and was troubling to me for period, and that went away over time as my family was able to fill in the details for me. However, I don't think this is what you are experiencing. I am going to invite some members who have also shared their nightmare/memory experiences after their ICU and coma experiences. Jon, When did you begin to experience these? Are they night time, or anytime?
@howemb, @psd0972, @mjkrr2 – I invite you to share your experiences. How might you lend support to @jheitmann

Jon, Are you experiencing any other post COVID-19 symptoms? Here is a discussion that I want to share and I invite you to post your question in this discussion where other COVID-19 survivors will see it. https://connect.mayoclinic.org/discussion/covid-symptoms-lasting-30-days-plus/

Jump to this post

Thank you. I experience the flashbacks mostly at night

REPLY
@jheitmann

Good Morning-
My name is Jon . I am a Covid Survivor. I went in the hospital on March 27th and was on a vent for 2 weeks in an induced coma. I was in ICU for another few days after then in a step down room. I was released on April 19th. I realized I experienced very vivid and lasting experiences while in the coma that I can't seem to stop thinking about. Anyone else experience this?

Jump to this post

Hi Jon,
I am glad you survived Covid-19. It scares me because once was enough on a ventilator for me!

I was in a coma for a shorter time than you—only about five days, but I was in ICU and a step down unit for about three weeks. Most of that time I was having severe delusions and nightmares. As I came around I had lucid moments that were mixed in with the delusional moments. I have asked those that experienced this time with me if what I remember is correct. My time line was not always right, but generally my memory of the experience is correct.

You are not crazy! That is what I thought at first, and what some doctors thought.

Two and half years later my memories of the nightmares and delusions are still very vivid. I, too, find that they creep up at night when I can’t sleep, when I am in the car by myself for long periods of time, and when I read about covid-19 patients on ventilators.

I was so thankful to be out of the hospital when I first got home that I scarcely thought about what happened while I was hospitalized. I just wanted to get well and regain strength. Later, when I had recovered, the memories came back to me.

Sleeping pills help when I get stuck perseverating on my experience during the night.

Feel free to ask me any questions.

Hope you are recovering well!

Michelle

REPLY
@howemb

Hi Jon,
I am glad you survived Covid-19. It scares me because once was enough on a ventilator for me!

I was in a coma for a shorter time than you—only about five days, but I was in ICU and a step down unit for about three weeks. Most of that time I was having severe delusions and nightmares. As I came around I had lucid moments that were mixed in with the delusional moments. I have asked those that experienced this time with me if what I remember is correct. My time line was not always right, but generally my memory of the experience is correct.

You are not crazy! That is what I thought at first, and what some doctors thought.

Two and half years later my memories of the nightmares and delusions are still very vivid. I, too, find that they creep up at night when I can’t sleep, when I am in the car by myself for long periods of time, and when I read about covid-19 patients on ventilators.

I was so thankful to be out of the hospital when I first got home that I scarcely thought about what happened while I was hospitalized. I just wanted to get well and regain strength. Later, when I had recovered, the memories came back to me.

Sleeping pills help when I get stuck perseverating on my experience during the night.

Feel free to ask me any questions.

Hope you are recovering well!

Michelle

Jump to this post

Michelle-
Thank you so much for sharing your story. It makes me feel so much better that I'm not alone. My hallucinations are so vivid and I dont know what really happened and what I dreamed happened. I drift off at times and the thoughts of my dreams take over at times. It scares me. I'm hoping it subsides. Do you feel talking about your "visions" help? Thanks again.

REPLY

Jon,

I am assuming you could not have friends or family visit you during your time in the hospital. It has helped me some that I can ask questions of those that were there and they have helped me put some things in perspective. It is nice, for example, to ask my mom about that time because she has helped with the timeline and clarifying what really happened.

It helps some to talk with others that have had this experience, and it help some to confide in my boyfriend when I feel really stressed by some of the memories. Still, this is my strange and scary experience that I will always live with.

Some of the things I remember are sort of funny, some are just odd, and a few are downright awful. Maybe some anti-anxiety medication would help if you mostly have scary memories. I take Ativan when I can’t sleep and it helps with the anxiety. I don’t like to use it often, but some nights reading doesn’t help and it doesn’t do me any good to be up for hours replaying stuff in my mind.

My current doctor and PA are supportive and understanding about that scary time and understand why it has been worse for me lately with all the covid stories stirring my head up.

I don’t think it hurts to try anything that might help you with the “visions”—medication, counseling, yoga, meditation….whatever. For me, unloading some of it on my boyfriend and the medication are what helps right now. At first the most helpful thing was questioning my mom, brother, best friend, and boyfriend about what happened. I needed to sort out what was real and what wasn’t.

Do you have paranoid memories? I think it is pretty universal to think the medical staff is “out to get you”. I also have really strange memories of being convinced that I was dead and stuck in something like purgatory. Later, I was convinced that I was mentally handicapped and would be sent to some group home. They always left the TV on and I could not determine what was really on TV and what my brain was creating. I don’t think TV was good for me during that time.

Michelle

REPLY
@howemb

Jon,

I am assuming you could not have friends or family visit you during your time in the hospital. It has helped me some that I can ask questions of those that were there and they have helped me put some things in perspective. It is nice, for example, to ask my mom about that time because she has helped with the timeline and clarifying what really happened.

It helps some to talk with others that have had this experience, and it help some to confide in my boyfriend when I feel really stressed by some of the memories. Still, this is my strange and scary experience that I will always live with.

Some of the things I remember are sort of funny, some are just odd, and a few are downright awful. Maybe some anti-anxiety medication would help if you mostly have scary memories. I take Ativan when I can’t sleep and it helps with the anxiety. I don’t like to use it often, but some nights reading doesn’t help and it doesn’t do me any good to be up for hours replaying stuff in my mind.

My current doctor and PA are supportive and understanding about that scary time and understand why it has been worse for me lately with all the covid stories stirring my head up.

I don’t think it hurts to try anything that might help you with the “visions”—medication, counseling, yoga, meditation….whatever. For me, unloading some of it on my boyfriend and the medication are what helps right now. At first the most helpful thing was questioning my mom, brother, best friend, and boyfriend about what happened. I needed to sort out what was real and what wasn’t.

Do you have paranoid memories? I think it is pretty universal to think the medical staff is “out to get you”. I also have really strange memories of being convinced that I was dead and stuck in something like purgatory. Later, I was convinced that I was mentally handicapped and would be sent to some group home. They always left the TV on and I could not determine what was really on TV and what my brain was creating. I don’t think TV was good for me during that time.

Michelle

Jump to this post

It's so funny you mention TV. My memories are aweful. I woke up from the coma thinking I killed a 13 year old girl in a drunk driving accident. My dreams are me being in this jail where they wanted to kill me. In my mind there was this guy talking to me through the TV. He was on Chopped and Guys Grocery Games. Lol. I know it sound crazy but he belittled me and at the same time I feel like he pushed me to survive. I saw 3 people whom I was close with who had died previously. 2 tragically. All 3 had the same message for me. "You need to go back to see your girls" I have a wife and 2 daughters. What is crazy is it is all so clear and I remember everything. I have various memories that I dont know if they really happened or were hallucinations. I was not allowed to have any visitors. I would love to talk to some of the nurses just to ask them things. I am a strong person and consider myself a tough person but these visions scare me.

REPLY
@jheitmann

It's so funny you mention TV. My memories are aweful. I woke up from the coma thinking I killed a 13 year old girl in a drunk driving accident. My dreams are me being in this jail where they wanted to kill me. In my mind there was this guy talking to me through the TV. He was on Chopped and Guys Grocery Games. Lol. I know it sound crazy but he belittled me and at the same time I feel like he pushed me to survive. I saw 3 people whom I was close with who had died previously. 2 tragically. All 3 had the same message for me. "You need to go back to see your girls" I have a wife and 2 daughters. What is crazy is it is all so clear and I remember everything. I have various memories that I dont know if they really happened or were hallucinations. I was not allowed to have any visitors. I would love to talk to some of the nurses just to ask them things. I am a strong person and consider myself a tough person but these visions scare me.

Jump to this post

This is fascinating. Thanks for sharing some of your “dreams”.

I, too, had a weird dream involving a TV show. I was on Myth Busters and had to experiment with the traps James Bond set up in his former home in the movie Skyfall. Really??? Where did my brain come up with this stuff!

I don’t have children, but I have two black labradors. I had a dream that the older one was barking at me and telling me to come back to her because we had things to do. I honestly think she helped save my life.

I wonder if these sort of dreams or hallucinations are very common???

It would be really nice if you could talk to some of the nurses that cared for you.

Michelle

REPLY
@howemb

This is fascinating. Thanks for sharing some of your “dreams”.

I, too, had a weird dream involving a TV show. I was on Myth Busters and had to experiment with the traps James Bond set up in his former home in the movie Skyfall. Really??? Where did my brain come up with this stuff!

I don’t have children, but I have two black labradors. I had a dream that the older one was barking at me and telling me to come back to her because we had things to do. I honestly think she helped save my life.

I wonder if these sort of dreams or hallucinations are very common???

It would be really nice if you could talk to some of the nurses that cared for you.

Michelle

Jump to this post

Thank you so much for sharing and talking to me. It helps. I do have some dreams that this is not real and I'm still in a coma. It scares the crap out of me. In my "coma dream" I lost my family. I was in a jail and they were so upset with me and angry. When I was taken off the vent (reality) I was so happy to have them back. So now my current dreams screw with me and try to take them away. Other than this, I'm a very normal person. Lol. Anyway, thanks again. It's good to know I'm not alone. I'm here to listen to you as well. So if you have any questions dont be affraid to ask.

REPLY
@jheitmann

Thank you so much for sharing and talking to me. It helps. I do have some dreams that this is not real and I'm still in a coma. It scares the crap out of me. In my "coma dream" I lost my family. I was in a jail and they were so upset with me and angry. When I was taken off the vent (reality) I was so happy to have them back. So now my current dreams screw with me and try to take them away. Other than this, I'm a very normal person. Lol. Anyway, thanks again. It's good to know I'm not alone. I'm here to listen to you as well. So if you have any questions dont be affraid to ask.

Jump to this post

@jheitmann, Thank you for reaching out and offering to share and support others who might be experiencing similar dreams and questions after their own critical illnesses.
Here a link to Connect Pages where the staff provides a newsfeed and resources for Post Intensive Care Syndrome (PICS) https://connect.mayoclinic.org/page/pics/

Jon, It is unfortunate that your family could not be with you. They endured a traumatic event, too. How are they getting along?

REPLY

Thank you for reaching out. My family is ok. I can see it was a very difficult time for my wife. She talks about it often.

REPLY

Not sure where to start. I had been in the hospital for 3 day after being diagnosed with pneumonia. I had been running a fever of 103 and started being sick go my stomach. I went to ICU and within minutes was told I'd intubated to make me more comfortable.

I woke up approx. 2 weeks later to find myself tied down and wearing a BiPap. I had been STAT flighted, they lost me on the way but brought me back just as we arrived but I flatlined again, they didnt think they were going to bring me back that time, nor the next. During those 2 weeks I had been Heavily sedated, had a blood transfusion, feeding tube put directly into my stomach, I was diabetic and my kidneys had stopped functioning. Diagnosis: ARDS. I fought the BiPap for 2 days before they put in a trech and for the next 12 days it kept me breathing while I was heavily sedated, only awake for approx 1hr a day If I had visitors. I experienced Terrifying Hallucinations up until a day or so before I was put in rehab (Well over 3 weeks) I had to relearn to write, walk, then to swallow and talk. Thankfully once I came off the ventilator I was no longer diabetic and kidney function returned.

I was let go from rehab Way too early (about 17 days) but I was overwhelmed with anxiety and my (now) ex-husband had only come to see me once with my 3 children. Mentally I couldnt stay I Needed my family so they released me once I proved I could walk up 2 steps without falling. Before I left I had so many nurses and even a Dr. come and tell me how they never thought they would see me alive again and what a miracle I was.. Seven weeks later my ex took my kids and left me with a friend. (That is a very simplified story of that time)

It's been 9yrs and I'm still suffering. I have PTSD, Anxiety, Depression, Minor Agoraphobia (all self diagnosed) and more physical issues than I even know about no doubt. I didnt recieved proper care in Any way after I was released. (That was my ex's fault) My body and mind seem to be continuing to break down. I lost my children, my Pride, and at one point my will to live. I used to be very intelligent, went back to college at 29 graduated 5yrs later after having my 3rd child with an Associates Degree in Science and Accounting Technology and a 4.0 GPA. I Loved to learn! My saying used to be: If you're not learning you're not living! Now I simply cant concentrate and feel I've forgotten the majority of what I learned in college. My memory was Terribly affected, so much of my children's lives I simply dont remember, but I can now seem to remember my own in ways I wish I could forget again.

I Just found out about PICS, it's a relief to know there is a name for it and that I am not Alone. However, thanks to this pandemic I am unemployed, been without insurance for approx 4yrs and I dont know what to do. Is there an end to this?? Thank you for reading my story.

REPLY
@afinegirl573

Not sure where to start. I had been in the hospital for 3 day after being diagnosed with pneumonia. I had been running a fever of 103 and started being sick go my stomach. I went to ICU and within minutes was told I'd intubated to make me more comfortable.

I woke up approx. 2 weeks later to find myself tied down and wearing a BiPap. I had been STAT flighted, they lost me on the way but brought me back just as we arrived but I flatlined again, they didnt think they were going to bring me back that time, nor the next. During those 2 weeks I had been Heavily sedated, had a blood transfusion, feeding tube put directly into my stomach, I was diabetic and my kidneys had stopped functioning. Diagnosis: ARDS. I fought the BiPap for 2 days before they put in a trech and for the next 12 days it kept me breathing while I was heavily sedated, only awake for approx 1hr a day If I had visitors. I experienced Terrifying Hallucinations up until a day or so before I was put in rehab (Well over 3 weeks) I had to relearn to write, walk, then to swallow and talk. Thankfully once I came off the ventilator I was no longer diabetic and kidney function returned.

I was let go from rehab Way too early (about 17 days) but I was overwhelmed with anxiety and my (now) ex-husband had only come to see me once with my 3 children. Mentally I couldnt stay I Needed my family so they released me once I proved I could walk up 2 steps without falling. Before I left I had so many nurses and even a Dr. come and tell me how they never thought they would see me alive again and what a miracle I was.. Seven weeks later my ex took my kids and left me with a friend. (That is a very simplified story of that time)

It's been 9yrs and I'm still suffering. I have PTSD, Anxiety, Depression, Minor Agoraphobia (all self diagnosed) and more physical issues than I even know about no doubt. I didnt recieved proper care in Any way after I was released. (That was my ex's fault) My body and mind seem to be continuing to break down. I lost my children, my Pride, and at one point my will to live. I used to be very intelligent, went back to college at 29 graduated 5yrs later after having my 3rd child with an Associates Degree in Science and Accounting Technology and a 4.0 GPA. I Loved to learn! My saying used to be: If you're not learning you're not living! Now I simply cant concentrate and feel I've forgotten the majority of what I learned in college. My memory was Terribly affected, so much of my children's lives I simply dont remember, but I can now seem to remember my own in ways I wish I could forget again.

I Just found out about PICS, it's a relief to know there is a name for it and that I am not Alone. However, thanks to this pandemic I am unemployed, been without insurance for approx 4yrs and I dont know what to do. Is there an end to this?? Thank you for reading my story.

Jump to this post

Hi @afinegirl573 and welcome to Mayo Clinic Connect. I think many people who have been in ICU and have experienced after effects are relieved, like you to learn about post intensive care syndrome. Were you told about PICS from a provider or did you discover it here?

You may be interested in reading more about PICS in @andreab's blog series "Breaking it Down" in the PICS blog https://connect.mayoclinic.org/page/pics/

Afinegirl, are you in counselling? Do you have professional guidance to deal with the PTSD, anxiety and depression?

REPLY

@colleenyoung @rosemarya
It’s been a long time since I’ve posted but I’m hoping some of the group may remember me. This is Rhoda. I have had multiple ICU stays with Addisons Disease and Addison Crisis and sometimes sepsis. I take hydrocortisone for the Addison’s and was weak but more stable for awhile. Three weeks ago I was diagnosed with type two diabetes, insulin dependent and have had one ICU stay and two other hospitalizations for a combination of low blood sugar and addisonian crisis. I’m overwhelmed and scared. I have a terrific endocrinologist at Mayo but live on the East coast. Despite fairly good local hospitals, Endocrinology for Addisons and its interaction with diabetes doesn’t seem great. I read on the NIH website about the interaction and their articles say that I will have more lows and be less likely to recognize them, due to the lack of cortisol as a supportive and warning system. I am blood testing 5 times a day.
I am afraid to sleep due to fears of a low in sleep that wouldn’t wake me. In fact, the ICU visit was precipitated by my husband being unable to wake me. Also seems like increased Addisonian crisis episodes. PCP here thinks body is not yet used to lower blood sugars. My initial values for diabetes were terrible, fasting blood sugar at 496, A1C 11.8. Data indicates I have only been diabetic for two months, it’s now three weeks from the diagnosis. PCP bringing down blood sugar slowly to avoid shock. I am a very compliant patient, doing everything that is being asked. I have signed up for diabetes site here but haven’t seen anything yet for new diabetics or comorbid conditions. Any thoughts would be appreciated. Hope all is as well as as can be expected for all in the group and elsewhere. Thank you, Rhoda.

REPLY
@rckj

@colleenyoung @rosemarya
It’s been a long time since I’ve posted but I’m hoping some of the group may remember me. This is Rhoda. I have had multiple ICU stays with Addisons Disease and Addison Crisis and sometimes sepsis. I take hydrocortisone for the Addison’s and was weak but more stable for awhile. Three weeks ago I was diagnosed with type two diabetes, insulin dependent and have had one ICU stay and two other hospitalizations for a combination of low blood sugar and addisonian crisis. I’m overwhelmed and scared. I have a terrific endocrinologist at Mayo but live on the East coast. Despite fairly good local hospitals, Endocrinology for Addisons and its interaction with diabetes doesn’t seem great. I read on the NIH website about the interaction and their articles say that I will have more lows and be less likely to recognize them, due to the lack of cortisol as a supportive and warning system. I am blood testing 5 times a day.
I am afraid to sleep due to fears of a low in sleep that wouldn’t wake me. In fact, the ICU visit was precipitated by my husband being unable to wake me. Also seems like increased Addisonian crisis episodes. PCP here thinks body is not yet used to lower blood sugars. My initial values for diabetes were terrible, fasting blood sugar at 496, A1C 11.8. Data indicates I have only been diabetic for two months, it’s now three weeks from the diagnosis. PCP bringing down blood sugar slowly to avoid shock. I am a very compliant patient, doing everything that is being asked. I have signed up for diabetes site here but haven’t seen anything yet for new diabetics or comorbid conditions. Any thoughts would be appreciated. Hope all is as well as as can be expected for all in the group and elsewhere. Thank you, Rhoda.

Jump to this post

@rckj, so good to hear from you. I can imagine that you would fear going to sleep. But we need to sleep. Here are a few related discussion in the Diabetes group. Perhaps there exists one that you may wish to take part in.
– Secondary adrenal insufficiency https://connect.mayoclinic.org/discussion/secondary-adrenal-insufficiency-1/
– Possible Adrenal Issues https://connect.mayoclinic.org/discussion/possible-adrenal-issues/
– Trouble with everyday realities of diabetes https://connect.mayoclinic.org/discussion/trouble-with-everyday-realities-of-diabetes/
– What to eat when you have diabetes, heart and kidney issues? https://connect.mayoclinic.org/discussion/what-to-eat-when-you-have-diabetes-heart-and-kidney-issues/

If none of these addresses the things you would like to discussion, I encourage you to start a new discussion in the Diabetes/Endocrine System group https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/

REPLY
Please login or register to post a reply.