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

I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my secondary adrenal insufficiency). I didn’t know about PICS until I read about it here but I have all the symptoms plus fear of reoccurrence, which is not unlikely. I don’t have a specific question but am looking to feel better and in more control of my fears. I understand what is going on but that doesn’t always diminish the symptoms. I traveled from my home on the east coast to Mayo in Rochester and received wonderful care, including treatment plans to minimize a reoccurrence. So far, 10 months without hospitalization, which is a record for what has been a 10 year chronic/acute illness. I am hopeful but always concerned about another life-threatening episode. Any feedback would be helpful. Thank you.

I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my secondary adrenal insufficiency). I didn’t know about PICS until I read about it here but I have all the symptoms plus fear of reoccurrence, which is not unlikely. I don’t have a specific question but am looking to feel better and in more control of my fears. I understand what is going on but that doesn’t always diminish the symptoms. I traveled from my home on the east coast to Mayo in Rochester and received wonderful care, including treatment plans to minimize a reoccurrence. So far, 10 months without hospitalization, which is a record for what has been a 10 year chronic/acute illness. I am hopeful but always concerned about another life-threatening episode. Any feedback would be helpful. Thank you.

I hope to get some help, I have been getting a lot of pressure in my head which doctors says I have pressure headaches but they don't go away, it just sits there not moving....feels like a rock laying and waiting for me to miss up.
I have trouble concentrating and I'm also in college on line, and with this problem I have to get off the computer till the pressure subsides. Then I have days that I forget where I put something. Example: I would lay my glasses on my desk, and they won't be there, and after I'm done looking for them, they would be in front of my computer.
This becomes a nuisance, and I can't remember anything that happened after 2012, any thing before that I'm good, now I have to right everything down.
Can someone help me to figure out what's the cause of this.

I hope to get some help, I have been getting a lot of pressure in my head which doctors says I have pressure headaches but they don't go away, it just sits there not moving....feels like a rock laying and waiting for me to miss up.
I have trouble concentrating and I'm also in college on line, and with this problem I have to get off the computer till the pressure subsides. Then I have days that I forget where I put something. Example: I would lay my glasses on my desk, and they won't be there, and after I'm done looking for them, they would be in front of my computer.
This becomes a nuisance, and I can't remember anything that happened after 2012, any thing before that I'm good, now I have to right everything down.
Can someone help me to figure out what's the cause of this.

I’ve been searching for a support group for ICU Psychosis (that’s what my doctors labeled it) and feel relief finding this group. February 4, 2016 I fell very ill. I don’t know to this day if I had flu or just became dehydrated. I had suffered two TBI’s back in 2013/14 so my brain was a mess to begin with. I have also suffered with depression in my life however I was doing well.

I was so sick at 3 a.m. on February 4 and my husband finally said we were going to the ER. Admitted with acute renal failure. I was already hallucinating from severe dehydration and was in acute respiratory and brain failure as well. Sigh. Some days I really wish God had taken me on that day as my life changed abruptly during hospitalization. I was placed in a coma and intubated for 12 hours. I came to on my way to the ICU and I was completely disoriented and though I was being pumped full of medication for electrolyte balance I was not given any pain medication. I was taken off all of my medications which was very difficult. I also smoked at the time so add that to the withdrawal of my regular meds I was now going through nicotine withdraw. I was transferred to general ward after three days. It was there that I became paranoid and started having the most wicked hallucinations to the point where I ripped a line out of my neck and all other lines in my arms. I guess I was violent and screaming but I really don’t remember. I felt badly though because somewhere inside I knew this was not me and I had the sweetest roommate who was moved to another room immediately. The doctors decided to do a series of tests for such medical conditions like menengitis. I was left for two days in a terrible state of hallucinations while I had spinal tap and other tests done to rule out medical conditions. My husband finally said that the doctors had to do something other than keeping me in restraints while I screamed at everything and everyone including him.

Doctor put me back into a coma and intubation for two days. I came too once again back in ICU. I was still hallucinating but not as badly as before. Moved back to a general ward and finally discharged on February 16. By this time I had pneumonia in my right lung. It was a harrowing time. I’ve never been the same. I can’t seem to get over the memory of the hallucinations and sometimes they come flooding back while I’m going about my day. I’ve pretty much become dependent on my husband as I can’t drive well and I don’t want to go out at all. The psychiatrist gives me pills. Nothing works. I did stop smoking and lost 60 pounds so guess that’s the silver lining. I am forcing myself to go out today not because I want to but because I have to make myself work through these terrible emotions. I’m now terrified of dying as I came so close. I never had a fear of death.

I know my circumstances were not as severe medically as some medicatl conditions that I’ve read here and I’m truly sorry to be such a wimp but I feel like I’m losing my mind. I sometimes don’t know if I’m dreaming or if this is real life. I did drink a lot to make the bad go away but it only made things worse so I don’t do that anymore. I have ptsd but I think because I’m 62 that the doctors don’t really care. My husband is this totally normal man who loves me and tells me to just get over it but of course no one understands if they have not gone through this. I know I’ll never be that kind and gentle person I was before. I miss some of the old me. Memory is shot. Can’t form words. Mind always racing.

Thank you for letting me ramble on. I’m going to go out now and try to make it through yet another day.

I have had multiple ER to ICU admissions with adrenal and septic shock (infection overwhelming my secondary adrenal insufficiency). I didn’t know about PICS until I read about it here but I have all the symptoms plus fear of reoccurrence, which is not unlikely. I don’t have a specific question but am looking to feel better and in more control of my fears. I understand what is going on but that doesn’t always diminish the symptoms. I traveled from my home on the east coast to Mayo in Rochester and received wonderful care, including treatment plans to minimize a reoccurrence. So far, 10 months without hospitalization, which is a record for what has been a 10 year chronic/acute illness. I am hopeful but always concerned about another life-threatening episode. Any feedback would be helpful. Thank you.

I’ve been searching for a support group for ICU Psychosis (that’s what my doctors labeled it) and feel relief finding this group. February 4, 2016 I fell very ill. I don’t know to this day if I had flu or just became dehydrated. I had suffered two TBI’s back in 2013/14 so my brain was a mess to begin with. I have also suffered with depression in my life however I was doing well.

I was so sick at 3 a.m. on February 4 and my husband finally said we were going to the ER. Admitted with acute renal failure. I was already hallucinating from severe dehydration and was in acute respiratory and brain failure as well. Sigh. Some days I really wish God had taken me on that day as my life changed abruptly during hospitalization. I was placed in a coma and intubated for 12 hours. I came to on my way to the ICU and I was completely disoriented and though I was being pumped full of medication for electrolyte balance I was not given any pain medication. I was taken off all of my medications which was very difficult. I also smoked at the time so add that to the withdrawal of my regular meds I was now going through nicotine withdraw. I was transferred to general ward after three days. It was there that I became paranoid and started having the most wicked hallucinations to the point where I ripped a line out of my neck and all other lines in my arms. I guess I was violent and screaming but I really don’t remember. I felt badly though because somewhere inside I knew this was not me and I had the sweetest roommate who was moved to another room immediately. The doctors decided to do a series of tests for such medical conditions like menengitis. I was left for two days in a terrible state of hallucinations while I had spinal tap and other tests done to rule out medical conditions. My husband finally said that the doctors had to do something other than keeping me in restraints while I screamed at everything and everyone including him.

Doctor put me back into a coma and intubation for two days. I came too once again back in ICU. I was still hallucinating but not as badly as before. Moved back to a general ward and finally discharged on February 16. By this time I had pneumonia in my right lung. It was a harrowing time. I’ve never been the same. I can’t seem to get over the memory of the hallucinations and sometimes they come flooding back while I’m going about my day. I’ve pretty much become dependent on my husband as I can’t drive well and I don’t want to go out at all. The psychiatrist gives me pills. Nothing works. I did stop smoking and lost 60 pounds so guess that’s the silver lining. I am forcing myself to go out today not because I want to but because I have to make myself work through these terrible emotions. I’m now terrified of dying as I came so close. I never had a fear of death.

I know my circumstances were not as severe medically as some medicatl conditions that I’ve read here and I’m truly sorry to be such a wimp but I feel like I’m losing my mind. I sometimes don’t know if I’m dreaming or if this is real life. I did drink a lot to make the bad go away but it only made things worse so I don’t do that anymore. I have ptsd but I think because I’m 62 that the doctors don’t really care. My husband is this totally normal man who loves me and tells me to just get over it but of course no one understands if they have not gone through this. I know I’ll never be that kind and gentle person I was before. I miss some of the old me. Memory is shot. Can’t form words. Mind always racing.

Thank you for letting me ramble on. I’m going to go out now and try to make it through yet another day.

I’ve been searching for a support group for ICU Psychosis (that’s what my doctors labeled it) and feel relief finding this group. February 4, 2016 I fell very ill. I don’t know to this day if I had flu or just became dehydrated. I had suffered two TBI’s back in 2013/14 so my brain was a mess to begin with. I have also suffered with depression in my life however I was doing well.

I was so sick at 3 a.m. on February 4 and my husband finally said we were going to the ER. Admitted with acute renal failure. I was already hallucinating from severe dehydration and was in acute respiratory and brain failure as well. Sigh. Some days I really wish God had taken me on that day as my life changed abruptly during hospitalization. I was placed in a coma and intubated for 12 hours. I came to on my way to the ICU and I was completely disoriented and though I was being pumped full of medication for electrolyte balance I was not given any pain medication. I was taken off all of my medications which was very difficult. I also smoked at the time so add that to the withdrawal of my regular meds I was now going through nicotine withdraw. I was transferred to general ward after three days. It was there that I became paranoid and started having the most wicked hallucinations to the point where I ripped a line out of my neck and all other lines in my arms. I guess I was violent and screaming but I really don’t remember. I felt badly though because somewhere inside I knew this was not me and I had the sweetest roommate who was moved to another room immediately. The doctors decided to do a series of tests for such medical conditions like menengitis. I was left for two days in a terrible state of hallucinations while I had spinal tap and other tests done to rule out medical conditions. My husband finally said that the doctors had to do something other than keeping me in restraints while I screamed at everything and everyone including him.

Doctor put me back into a coma and intubation for two days. I came too once again back in ICU. I was still hallucinating but not as badly as before. Moved back to a general ward and finally discharged on February 16. By this time I had pneumonia in my right lung. It was a harrowing time. I’ve never been the same. I can’t seem to get over the memory of the hallucinations and sometimes they come flooding back while I’m going about my day. I’ve pretty much become dependent on my husband as I can’t drive well and I don’t want to go out at all. The psychiatrist gives me pills. Nothing works. I did stop smoking and lost 60 pounds so guess that’s the silver lining. I am forcing myself to go out today not because I want to but because I have to make myself work through these terrible emotions. I’m now terrified of dying as I came so close. I never had a fear of death.

I know my circumstances were not as severe medically as some medicatl conditions that I’ve read here and I’m truly sorry to be such a wimp but I feel like I’m losing my mind. I sometimes don’t know if I’m dreaming or if this is real life. I did drink a lot to make the bad go away but it only made things worse so I don’t do that anymore. I have ptsd but I think because I’m 62 that the doctors don’t really care. My husband is this totally normal man who loves me and tells me to just get over it but of course no one understands if they have not gone through this. I know I’ll never be that kind and gentle person I was before. I miss some of the old me. Memory is shot. Can’t form words. Mind always racing.

Thank you for letting me ramble on. I’m going to go out now and try to make it through yet another day.