Hallucinations Do you know? - British Heart Fou...

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Hallucinations Do you know?

Darkshades profile image
18 Replies

Hi

I just wanted to know if those that have had hallucinations, did you know/remember you’d had them or was you told you’d had them?

I was told quite some time later that I’d been hallucinating (for some weeks after coming out of hospital and at home) but have no memory of them at all

Thank you all - such a great site, so full of knowledge and experiences

Xx

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Darkshades profile image
Darkshades
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18 Replies
Ageingfast profile image
Ageingfast

I would suggest that hallucinations are when you are aware of something you see, that is not real. I had them in hospital and they were lovely. I saw beautiful colours on the ceiling and i saw people who weren't there. Great fun, the nurse had the janitors head, the doctor had the clerks body.

I get nightmares. Horrid. and i get night terrors, which carry on when i am awake.

I know i have had them and i do not fight them.

Best wishes

Colin

Darkshades profile image
Darkshades in reply toAgeingfast

Thanks Colin

(Hmm mines all different- possibly because my op went so wrong 😣 - was in ICU for 6/7 weeks (totally unaware) and in hospital(s) 3 months.

You’ve just reminded me, I did see a bird hanging from something (now know it was the sprinkler system) .. and I pointed towards it and said, what’s that … she’s asking where and I’m pointing to it … and she said there’s nothing there and I thought why can’t she see what I can see (I was worried that it was going to fly at me)

Then things got worse when I got home (though I have No memory of them - but I was calling for someone to come into the room and get the bear out of the room, another time a horse!)

Pollypuss profile image
Pollypuss

Yes I saw hanging flower baskets around my bed a few days after my bypass. It’s quite common apparently to have hallucinations .

Darkshades profile image
Darkshades in reply toPollypuss

But did you remember you had them and did you know it wasn’t real at that time?

Pollypuss profile image
Pollypuss in reply toDarkshades

Yes I knew I had them. I think it was all part of the coming back into reality after the op

Darkshades profile image
Darkshades in reply toPollypuss

Hmm ok thank you for replying 😀 - I didn’t even know I was having them and don’t remember any of it. I was only ‘told’. I thought they were making it up!! One day my husband heard me talking and wondered who to and came up, and actually filmed a bit of what he saw. I was laying on top of the bed totally relaxed and looking happy and was yakking away to … ‘someone/thing’ … there was nothing there!!! But I obviously was seeing ‘something’ because I was talking to it … suddenly I turned, saw my husband standing in the doorway… shot back my head to see if this ‘thing’ was still there which it wasn’t. I then stopped … but I have No memory of it at all.. but can see Me doing it on the recording it was me …

We’ve even tried to hear what I was saying but can’t … I’d love 💕 to know who I thought I was talking to and what I was actually saying.

Perhaps this ‘thing’ told me my husband was at the doorway because my head shot round so quickly

It’s all so strange and bizarre !!!

x

The Hallucinations are the product of the Anaethesia over the long duration you experienced in ICU etc - according to what I was told by the various nurses and doctors post surgery.

In my 6 weeks between the operation and 'waking up' - I lived an entirely different life to what I was experiencing in the real world. I was told I could expect such experiences after waking up and being discharged - but I have been rather fortunate to have avoided them. On the down side, I have no reliable sleeping pattern, and am still dependent on Zopiclone to help me sleep, rapidly approaching a year after the surgery.

When I visited Critical Care the other week, I was questioned about hallucinations and similar experiences, especailly as I had experienced such complications and a long time sedated - similar to you.

However, I can still tell you in detail about those 6 weeks I lived that alternative life, where I spent 2 weeks in Hong Kong, travelling there and back on a BA Boeing 777 - then being treated in a variety of hospitals in France, Kent and Ipswich - none of which really exist - along with other amazing events, good and bad!

You can get help for this situation from your GP and/ or the hospitals Critical Care team who manage your post ICU recovery.

Darkshades profile image
Darkshades in reply to

Oh my god lol - I’m so pleased I’m following you 🥰

You’ve had and experienced such similar things that I have as well.

(But I’ve not been told anything! Well at least that I’m aware of or remember) (and that’s one of the main issues I’m having major problems with - Memory!!! It’s all due to the day of the op and all that went on and went terribly wrong!) it’s only now that I know most of what had happened… because anyone who I saw just repeatedly kept saying, you’ve been ill, very very ill, but had now idea what they were talking about!

It’s only Now 9 months on that I’m finding things out (a lot is very very upsetting 😢)

Now I understand Why the kept asking me day after day the same questions (they were checking my memory!) - it all makes sense now!!

Again like you, I Was living an ‘alternative’ life (that I actually believed was real!) and that explains Why when they asked their repeated questions … asking did I know where I was, couldn’t ever recall the hospital name (now easily remember) .. and they then asked did I know where the hospital is, and without Any hesitation, I replied yes!!! … NORWAY !!!!

(In my ‘ alternative’ life, the students had moved me to Norway because they feared for my safety and that the doctors weren’t doing things correctly)

Like you, spending 6 weeks in a held sedated state, when I ‘awoke’ I believed it was either the next day of the operation or possibly 2 days after because I had read, that you can spend 2 days in ICU. So when someone asked me did I know the days date… so I worked it out that it must be around the 9th October (2020) so I was shocked when they said it was /** NOVEMBER!!! ???

I thought they were lying, and If it were true, where on earth had I been all this time?

There was only one time that I was ‘aware’ I was in ICU, because someone whispered in my ear ‘cough’ and felt some relief. To think I joined this group prior to my op and first posting was about being ‘Intubated’ and petrified (if I knew then what I now know,, intubation was the least thing to of worried about) … but on here had said, it’s a bit uncomfortable but they then tell you to ‘cough’ as they take the tubes.

Pollypuss profile image
Pollypuss in reply to

I haven’t been able to sleep a whole night for ages and my memory is most odd. I keep getting flash backs of incidences that happened way back. Some maybe things I buried ages ago and forgot about. No I’m definitely not the person before the bypass . My memory was better before. I’ve also lost my confidence about driving on the motorway, which is so annoying

Darkshades profile image
Darkshades in reply to

Just feel the need to come back in on your comment Brand because it’s so relative to me and what happened. I got a follow up call from the ITU (Feb 2021 (op October 2020) I was in as they wanted to know how I was getting on. I could tell she was reading from a tick box ✅ list and asked me if I’d had any hallucinations and I relayed to how funny I thought it was that I answered that the hospital was in “Norway”… I’d always knew it was in London!!! … (I had known prior that it’s quite common to have hallucinations from having the op as it’s not natural for someone to physically touch your heart and it does/can affect the brain. So I obviously didn’t understand what hallucinations were, hence my post. I did say to her that I didn’t really know what had gone on but I think it was because I coughed and ripped open what they had done requiring another operation and she replied “well that’s not entirely true”. She said she’d send me a letter of what happened of which I received in April this year. When I read it I was absolutely Horrified at what had happened… no explanation as to why but just had on this day, this was done, this day that happened and so it went on.. I just shoved it away in the drawer thinking they don’t know what they are talking about 😡. BUT on my other thread where you replied as I was confused about something, someone private messaged me and said that their thoughts on the matter … where … this and went on to list a sequence of events … well as I started to read it, I thought I’ve seen this somewhere before … got the letter back out from ITU and Bang! There it was Exactly the same Order of events … so I know that this to be exactly true. The thing is for all this to happens means they Were Negligent and actually at some point my husband was told something which now I understand it Was their negligence that caused this. I had to go to A&E last Friday and was told something as I misunderstood something and they explained it … again Bang!!! the info they told me just endorsed what had happened and looking up more info on what caused it … Bang!!! again … it explains so much as to why this has happened… I don’t know what I’ll do with all this info, because I know I can’t change what happened but I could possibly prevent this happening to anyone else! But will still have to live with the consequences of their actions … at the moment I do not know if they will be permanent or not, and that from what I’ve read can take up to a year to know what you will be left with. I know they’ve told me that it could be 1-2 years recovery and that’s just from the physical aspect.

I know you probably think what is she banging on about and not making sense to you. I can’t stress enough how invaluable this site is and the people who respond (like you) You’ve helped me so much you’ll probably never know. I also now understand that when I was moved to a rehabilitation unit in a hospital more local to me, when a doctor said to me that my heart is in a worse state now after the operation to what it was before!! I thought what are they talking about, I’ve just had an operation to correct it - it’s now all making so much sense now 🙏🏻

Funny you mentioning France as that’s just reminded me … I too was in France, to the order of the “White Nuns” to die!!! 😰 and just remembered I’d also told them my husband lived in France 🤷‍♀️

Did you too, have to have a tracheotomy? I only found I had weeks and weeks later as I happened to see a dressing on my throat. I can see on my letter the date they did it and the date it was removed

Closing now (I can hear you say Thank G*d)

But again just want to thank you

in reply toDarkshades

My ‘hospital’ in France was actually in the French EuroTerminal Eating Area (if there is such a thing). We could here the trains arriving and departing in the tunnel beneath us and we had the arrival and departure boards to view (apparently this was a complex that had been built and not used, hence it was used for recovering patients). Think of the eating area in a MotorWay Service Station, but with ICU beds in it - and that is what it was like.

It took me 2 or 3 days to finally accept that I was in fact in Basildon Hospital and not anywhere else - and this followed FaceTime calls to my wife and daughters on numerous unplanned occasions (in my other life i was prevented from seeing or talking to any family).

As for the tracheotomy, I had to have an emergency one because when I had the stroke, it twisted my tongue, which caused it to swell and block up all of my thought - prevent me from breathing, eating or drinking. I have since seen a picture of me with the tracheotomy and speech box attached whilst in ITU, it was taken for my wife and daughters benefit. I had been posed for the picture and ‘smartened up’. When I woke up - the dressing and plasters over the wound caused by the tracheotomy stopped my head from looking down - it had only been removed a few days before I woke up.

Darkshades profile image
Darkshades in reply to

Ha ha ha! - you are making me remember some other things (memory in my case is very important (see my other reply to you) though things can sound funny to others and even ourselves, they're not really.I see you mention Basildon Hospital - my local hospital is paired with it (I so wish I had gone there), but when this all started back in Feb last year 2020 the paramedics took me to Queen's Hospital in Romford as they had a better cardiac/stroke unit who are paired with the famous London Heart hospital :(

Because of Covid no one was allowed visitors as we know but in my 'alternative life' my husband and one of my sons got around this by getting jobs as porters in the hospital so they could see me (bear in mind this hospital was in *Norway, and non of us can speak Norwegian lol, no problem, they all spoke English) - one day I saw my husband walk passed the open door and I called out to him and he didn't hear me so I remember that I thought I must shout to him........... used all my energy and might and shouted out to him.

In the real world, a nurse called my husband to tell him that I'm calling for him!!!!

(I'd actually called out) When he told me this, I knew exactly where about's I was in my 'alternative life'

in reply toDarkshades

Interesting they said Romford had a better rep than Basildon - there were patients in there from all over the country who had specifically asked to be treated at Basildon because of its reputation...

Thanksnhs profile image
Thanksnhs

Hi at one point I thought my bestie and my two boys were outside the ward with a pram! Trying to rescue me and take me home and the nurse wouldn't allow them, the door handles were morphing into to different shapes but the worse one was my room was full of flies that a neighbour I don't get on with put through the window, I was on the first floor, it was a horrible experience, I hope never to be repeated, afterwards I felt for the poor nurse trying to cope with me shouting and wanting another room char

Darkshades profile image
Darkshades in reply toThanksnhs

Did you realise you were doing it at the time ? (Because I didn’t) but you mentioning flies reminds me of the ‘bird’ I saw (sorry if I’ve already said this somewhere already, but my memory is shot to pieces) … I was actually talking to a nurse and then I spied something on the ceiling and asked her what it was and she said where? So I pointed at it and went there!!! I could then recognise it was a bird desperately trying to hold on to something. Of course she couldn’t see anything and I’m going, there, there and couldn’t understand Why she couldn’t see it. Eventually I couldn’t see the bird anymore so sort of put it out of my mind. As I’ve said, the ‘hallucinations’ unbeknown to me were getting worse when I was finally released after 3 months and back home, but the one I vaguely remember was that I woke my husband up to tell him our son (34) was hiding under our bed, hiding from the police who I could see them waiting outside in a police car 🚓

It’s all so very bizarre! Some are very distressing and scary so much so we can recall them so clearly even now. When I’ve told people about them, they’ve gone “oh yeah, I had this bad dream once” etc … and I have to tell them that it wasn’t a dream per se … it Was ‘real’!! - no one can understand unless they’ve experienced it … I’m waffling again

Thank you for taking the time to reply

X

Thanksnhs profile image
Thanksnhs in reply toDarkshades

Hi so much worse than any dream, unfortunately I remember a lot of them, I seemed to realise that door handles couldn't move and I just sat and watched them, bending straight and then upwards, so weird but I definitely thought the flies were real I fell asleep and fortunately when I woke up I couldn't see them anymore phew! I also thought the nurses were discussing my private medical records with said neighbour I was so sure I could hear them and as for the pram jeezo no idea, just so glad when they went away and I got moved back to the ward, I think it was the worst thing that happened to me in the hospital, and I had transplant char

Darkshades profile image
Darkshades in reply toThanksnhs

Unfortunately for me, having OHS was the worst decision I’ve ever made and truly wish I hadn’t had it! From what happened that day of the op had such a chain reaction of events I’m now far worse than I was before.

Over the last couple of days I feel things have gotten worse and have just literally called my cardiac nurse and they are coming to see me today

Thanksnhs profile image
Thanksnhs in reply toDarkshades

I am so sorry to hear that, I really hope they can help you it must be awful, keep us posted on what they say and what they are going to do about it take care char

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