Post ICU Nightmares / Hallucinations

Posted by Kari Ulrich, Volunteer Mentor @kariulrich, Tue, Apr 30 8:51pm

I was hospitalized several years ago and was in the ICU for approximately 3 days after vascular surgery. Those days were a bit of a blur, and my overall stay at St. Mary’s was 5-6 nights. When I was in the ICU I was having chest pain and ended up on a nitro drip. I remember doctors and nurses talking very softly and I could not hear what they were saying… but I wanted to badly. I was so frightened and I could not seem to communicate my fears. I was constantly fighting the pain medication as I was scared to fall asleep. Again, I just remember feeling like no one was understanding what I was going through. At the time I was having auditory hallucinations…which added to my fear. It was like I could hear a constant loud rock concert and it was not enjoyable. To this day when I am extremely stressed, this sound comes back to haunt me. It does not happen often but when it does the fear is horrible. Would like to hear what others do to cope with nightmares or hallucinations. What have others experienced? I have never shared this, but I felt abandoned by my husband during that stay, he was not supportive- thankfully my best friend sat by the side of my bed til 1 or 2 am in the morning, holding my hand just so I would close my eyes. I became very bitter in my marriage and our relationship and am also wondering if this has happened to anyone? (We are currently separated as of recently… first time I am saying this out loud) Now that I am separated I have the same anxiety as I did in the hospital. Thank you in advance for sharing.

@janegigi @deltakay @jslate @rckj @glinda @muriel66 I think you might be interested in this discussion that @kariulrich started about nightmares persisting after being in the ICU.

Kari, thanks for sharing so openly and some of it for the first time. I, too, am grateful you had a dear friend who understood and was willing to hold your hand so you could get much needed restorative sleep. I had never heard of auditory hallucinations before. You say that stress can bring the sounds back again. Does hearing actual loud rock music trigger you?

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@kariulrich
Hi,
Thank you for sharing, I’m sure it is not easy. I had a similar experience when I went from Maple Grove hospital to North Memorial. I remember them calling a “rapid response”, and nurses arguing if I am ICU material or not. The rest is a blur until I was moved to the Oncology unit (I suppose that’s where they had an open bed). During the time I was in the ICU my mother and son came to visit me. I don’t recall telling them not to visit me, but apparently I did. Having worked in the ICU and all over the hospital I didn’t want my family to see me in that much pain. That’s the only reason, I can think of that I would tell them I didn’t want to visit. My husband came from the UK back to Minnesota to help me before discharge, and at home. He broke down and after all that I had been through, facing my own mortality, I felt the need to comfort him. We have not been married long and it is a struggle on our relationship because I am not the woman he married, and won’t ever be again. I struggle with why I am still here daily. I work in the hospital and have been on leave since my hospitalization. I tried to return to work and it was terrifying to go back into the hospital and have my own patients again. I have nightmares and I can’t seem to cope with what happened to me. I was discharged almost 7 months ago. I see a therapist, my GP, and a psychiatrist. I have to take medications to sleep without nightmares and I try very hard to remove myself from stress. Because I can’t cope. It’s hard to find a good psychiatrist as the first one I saw brushed me off. These have been the things that have given me tools to get out of bed most days. I hope this helps. I also am going to check out the nightmare group that @colleenyoung suggested.

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@colleenyoung

@janegigi @deltakay @jslate @rckj @glinda @muriel66 I think you might be interested in this discussion that @kariulrich started about nightmares persisting after being in the ICU.

Kari, thanks for sharing so openly and some of it for the first time. I, too, am grateful you had a dear friend who understood and was willing to hold your hand so you could get much needed restorative sleep. I had never heard of auditory hallucinations before. You say that stress can bring the sounds back again. Does hearing actual loud rock music trigger you?

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Certain songs trigger the memories but not the auditory hallucination. The auditory hallucination has happened at home when it is completely quite, it is so real I could swear my sons were playing music up in their room, but each time they never have been. I do associate it with stress, however cannot pinpoint what stress.

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@deltakay

@kariulrich
Hi,
Thank you for sharing, I’m sure it is not easy. I had a similar experience when I went from Maple Grove hospital to North Memorial. I remember them calling a “rapid response”, and nurses arguing if I am ICU material or not. The rest is a blur until I was moved to the Oncology unit (I suppose that’s where they had an open bed). During the time I was in the ICU my mother and son came to visit me. I don’t recall telling them not to visit me, but apparently I did. Having worked in the ICU and all over the hospital I didn’t want my family to see me in that much pain. That’s the only reason, I can think of that I would tell them I didn’t want to visit. My husband came from the UK back to Minnesota to help me before discharge, and at home. He broke down and after all that I had been through, facing my own mortality, I felt the need to comfort him. We have not been married long and it is a struggle on our relationship because I am not the woman he married, and won’t ever be again. I struggle with why I am still here daily. I work in the hospital and have been on leave since my hospitalization. I tried to return to work and it was terrifying to go back into the hospital and have my own patients again. I have nightmares and I can’t seem to cope with what happened to me. I was discharged almost 7 months ago. I see a therapist, my GP, and a psychiatrist. I have to take medications to sleep without nightmares and I try very hard to remove myself from stress. Because I can’t cope. It’s hard to find a good psychiatrist as the first one I saw brushed me off. These have been the things that have given me tools to get out of bed most days. I hope this helps. I also am going to check out the nightmare group that @colleenyoung suggested.

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@deltakay I am so appreciative that your shared your experience as I can relate to your struggles with your relationship, and not being the women he married. I did not want visitors at the time either I did not want my boys or my dad to see me in pain, but I wanted my husband there during the time I was having chest pain, thankfully my close friend came, it was the biggest blessing. I have seen a therapist, several in the past…sometimes it just gets tiring complaining about illness. I also have trouble sleeping, but with the opioid crisis physicians are Leary about sleeping meds and anxiety meds too so they have been taken away, or cut in half. I practice very good sleep hygiene but even with that it can be difficult to sleep. I was blessed with pulsatile tinnitus along with regular tinnitus…the ringing and swooshing never stop. Sleeping is difficult. Hang in there, it is so good to talk about this openly.

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@kariulrich

@deltakay I am so appreciative that your shared your experience as I can relate to your struggles with your relationship, and not being the women he married. I did not want visitors at the time either I did not want my boys or my dad to see me in pain, but I wanted my husband there during the time I was having chest pain, thankfully my close friend came, it was the biggest blessing. I have seen a therapist, several in the past…sometimes it just gets tiring complaining about illness. I also have trouble sleeping, but with the opioid crisis physicians are Leary about sleeping meds and anxiety meds too so they have been taken away, or cut in half. I practice very good sleep hygiene but even with that it can be difficult to sleep. I was blessed with pulsatile tinnitus along with regular tinnitus…the ringing and swooshing never stop. Sleeping is difficult. Hang in there, it is so good to talk about this openly.

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I understand completely what you mean by auditory hallucinations. I mentioned them to my neurologist and he said they were like echoes from the ICU and that it could take up to a year for my brain to heal from having been placed in a medically induced coma. Still doesn’t make them any less terrifying, lol. I had ICU delirium, so the oddest things will be triggers for me. I now stay home with my two very young sons (5&3) and it’s a battle. I feel like my husband just doesn’t get it. He says he does, but then his words and actions don’t match. I don’t want to be left alone in the evenings because my husband came at 6 at night at the hospital, then left about noon the next day. After he left, while I was paralyzed with Critical Care Myopathy, I was stuck for hours alone and they didn’t give me one of those buttons that you can bump up against to call a nurse until I was moved into the Special Care Unit a month later. So that left me scared and alone for hours without the ability to call for help. It sucked. Not to complain about him, it was my call to ask him to stay with me during the night instead of the daytime (I never slept at the hospital, and despite it being a Critical Care Unit, they didn’t mind him sleeping there). Oh, I guess I should note that I’d been flown to a hospital about four hours away from home by then. Anyway, point is I hate being alone now, but Hubby comes home from work and disappears to the sunroom for hours to “detox” from his day at work and I generally don’t see him until time to put the kids to bed. I’m only 9 weeks or so from discharge, I’m still coughing up phlegm from damaged lungs, and my arms and muscles still hurt with whatever autoimmune disorder they found while they were poking around doing tests (UAB is a teaching hospital and I was there forever and nearly died on them four times, thus I became a perfect guinea pig). Long story short, I also sort of understand the tension you must feel with your husband and I am so sorry. I did feel supported while I was in the hospital, but the second we got home, it was like I was dropped quicker than a sack of rotten potatoes, which hurt because I thought we’d had this bonding experience through this horrific thing we’d just been through. It just made it ten times worse to think back on being in the hospital.

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That is what happened to me when I got home from this major surgery….my husband took time off work to help me, but he retreated down to his office until bed time, occasionally asking me if I needed something. I sat in a chair alone trying to heal, and would just sit and cry. I felt so helpless. I know they need time too..
But this was different this was being abandoned in my own home. I thought maybe I was being too needy, but when I look back it was not me being needy. I started to write down my fears during that time, to process what I was going through. When I read back my words years later it breaks my heart. Thank you @jslate for sharing about your auditory hallucinations….sounding like an echo…What your neurologist said makes complete sense to me. Also when you said words don’t match actions…YES!!!! I am sorry you had to live through so much trauma. Please know that your experience has helped me greatly to feel less alone.

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@kariulrich

That is what happened to me when I got home from this major surgery….my husband took time off work to help me, but he retreated down to his office until bed time, occasionally asking me if I needed something. I sat in a chair alone trying to heal, and would just sit and cry. I felt so helpless. I know they need time too..
But this was different this was being abandoned in my own home. I thought maybe I was being too needy, but when I look back it was not me being needy. I started to write down my fears during that time, to process what I was going through. When I read back my words years later it breaks my heart. Thank you @jslate for sharing about your auditory hallucinations….sounding like an echo…What your neurologist said makes complete sense to me. Also when you said words don’t match actions…YES!!!! I am sorry you had to live through so much trauma. Please know that your experience has helped me greatly to feel less alone.

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Oh honey, please don’t feel alone. I think there is a private message feature here somewhere and feel free to message me anytime. I understand completely, I really do—that feeling of wanting them to come be with you of their own volition. It’s awful. There’s something about the vulnerability of healing that simply strips us to our barest selves, and when we’ve done this with someone we’ve given our heart to, it’s such a fragile thing. There are no words for it. Or nearly none.

While I was under (coma, delirium, what have you), Hubby put headphones on my ears and played audiobooks for me. My mind did all manner of bizarre things with that, and then once I was ‘woken up,’ it took me several days to come to but I experienced delirium in the meantime and thus had all kinds of hallucinations, some of which were auditory. Now, while I’m doing housework or even lying down trying to rest or practicing my strength training, I’ll hear a voice or something that I know is either from an audiobook I heard, or some of the music that was played for me, and every now and then I’ll hear the ventilator. That’s the worst. That’s the sound that gives me the worst of the nightmares.

I’m so sorry this lead to separation for you. I’d love to talk to you more. It sounds like our experiences were at least somewhat similar. How are you sleeping right now? How long ago was your surgery?

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I have had two vascular surgeries the last one was about 3 years ago and each I one spent unexpected time in the ICU before going to a unit. Although my surgeries were successful, the recoveries were exceptionally long. I find it very interesting that during your coma you were played audiobooks, and you hear them to this day. Have you ever done any research on auditory hallucinations? My sleep is a weekly battle, however, I do find I have fewer insomnia days now that my husband is out of the house than I did when he was here. When I married my husband (second marriage) I moved my two boys here to a small town so that he would not have to relocate for work. I was excited to raise my boys in a small town. After a year and a half of marriage, I was diagnosed with vascular disease. My diagnosis definitely changed me, but it made me a stronger person. Now that my symptoms are managed and I am doing better we just seem to be at different places. I will say I have not been as supportive of him during times when he was ill. I would get so angry when he complained about a symptom that ended up to be nothing. Maybe due to the fact that I did not feel supported as I should have been. I did talk about this with therapists. I just find myself empty when it comes to supporting him. I have nothing left to give. Not sure if this is making any sense what so ever! LOL, I admire that you are investing in yourself with strength training/exercise.

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@kariulrich

I have had two vascular surgeries the last one was about 3 years ago and each I one spent unexpected time in the ICU before going to a unit. Although my surgeries were successful, the recoveries were exceptionally long. I find it very interesting that during your coma you were played audiobooks, and you hear them to this day. Have you ever done any research on auditory hallucinations? My sleep is a weekly battle, however, I do find I have fewer insomnia days now that my husband is out of the house than I did when he was here. When I married my husband (second marriage) I moved my two boys here to a small town so that he would not have to relocate for work. I was excited to raise my boys in a small town. After a year and a half of marriage, I was diagnosed with vascular disease. My diagnosis definitely changed me, but it made me a stronger person. Now that my symptoms are managed and I am doing better we just seem to be at different places. I will say I have not been as supportive of him during times when he was ill. I would get so angry when he complained about a symptom that ended up to be nothing. Maybe due to the fact that I did not feel supported as I should have been. I did talk about this with therapists. I just find myself empty when it comes to supporting him. I have nothing left to give. Not sure if this is making any sense what so ever! LOL, I admire that you are investing in yourself with strength training/exercise.

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I was just released from the hospital late Feb, and the things I’m hearing aren’t strong. They’re…like my neurologist said, echoes. It’s almost like something in the room triggers a memory and my brain brings up that audio clip, a word or a couple of indistinct words, yet because my brain isn’t fully healed from the trauma of being under yet, I can’t tell the difference between what’s coming from outside of my brain and inside. It freaked me out at first, but he assured me that it’s not altogether unheard of and that we’d reevaluate in a year. It doesn’t happen as often now, but in the first month post release it was all the time. He doesn’t expect it to get anything but better. And he’s an incredible doctor, so I’m not worried. He also attributed some of it to PTSD.

No, haven’t thought to research it. Honestly been struggling to figure out how life with what looks like SLE and two little ones is gonna look like, and then trying to recover without ongoing PT (had inpatient but we have no insurance so everything ended once I was released). I’m sorry to hear about your vascular disease. That sounds super painful!

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Since a hospital stay in 2015, I suffered from delirium. Delirium is very highly undiagnosed. Why do I not hear about it here?

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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.

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@lgpierson

Since a hospital stay in 2015, I suffered from delirium. Delirium is very highly undiagnosed. Why do I not hear about it here?

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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?

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@abbyweston

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.

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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?

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@colleenyoung

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?

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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.

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