Hi All, I've posted on this site a couple of times and the group have always been extremely friendly and helpful. At the risk of repeating myself, just to recap - I suffered an MTBI 12 months ago and am now receiving treatment for post concussion syndrome, with tinnitus, fatigue and vision problems being the main issues. I've also had some sleep issues, which I understand are also very common with PCS. More recently Ive developed a peculiar sleep problem and I just wondered if anyone else has had similar experiences? :- Shortly after falling asleep at night (usually always within first half an hour) I've started experiencing what I can only describe as really dark sleep hallucinations, which mostly follow the same pattern - I 'wake up' with either a visual or audible hallucination, or sometimes both, these have included seeing a dark figures by the bed, seeing spiders and other odd creatures, seeing shapes on the walls and ceiling, hearing noises e. g hissing sounds,ppl shouting plus I get the feeling that something or someone was trying to hurt me, along with the feeling of dread that something bad was about to happen. All the while I am unable to move, however I am aware during them that the things I'm seeing are not real but it's still very scary. They last around 30 seconds to a minute usually then I just seem to snap out of it, and wake up fully.
Ive never suffered with anything like this before and tbh at times I have thought I might be going out of my mind!
I've recently had my first neurologist appt so am hoping they can maybe shed some light on what's happening but just thought I'd share it with u to see if any similar experiences out there?
Many Thanks, Bb
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Hi Marnie, thanks for your reply. I've just read that link - and can identify with every one of the symptoms! It sounds very much like it could be this condition. Thankfully I do not have these hallucinations at any other time apart from when going to sleep, so hopefully it's harmless however I'm hoping to get it checked out properly as part of my neuro appts. Many Thanks again, best wishes Bb.
For example amitriptyline can cause nightmares and hallucinations. Melatonin and trptophan can also cause nightmares.
Because the brain is injured medications may be more prone to unexpected effects, and we do tend to be more sensitive to medications.
If you get no joy at the neurologists, you may benefit from talking to a neuropsychiatrist as well, as they know the brain and the various medications well.
Do reach out to Headway if you have it where you live.
Hi Leaf, thanks for your reply. Yes I'm currently taking 15mg mirtazapine, which I've been on for around 4 months after switching from a other AD due to suffering side effects (not sleep related). I have wondered if the medication could be contributing to the sleep hallucinations however as I've been on them for over 4 months and it's only been the last month or so I've had these issues so not sure. I do take them at bedtime tho (as recommended) so yes maybe that could have an effect as u say. Thanks a lot for this Leaf, I will mention it at my next neuro appt hopefully get to the bottom of it! All the best Bb
Can't sleep so looked up mirtazapine, one of the side effects is hallucinations.
I tried to post a link to the M a y o Clinic website that talk about it, but for some reason this site thinjs that means I am sharing personal information.
Hi leaf100, really? I had googled it but I didn't find any references to hallucinations - I will check that mayo clinic website, thanks a lot! Last night's screenshow was moving egyptian hyrogliphics on bedroom wall, very strange! I will speak with my gp again see if can switch to another AD, I was put on these ones to help me sleep - which they do but not without these unwanted side effects, it seems. Many thanks Leaf100, much appreciated, best wishes Bb
You are welcome, Bb. I did another search and found it mentioned on the webmd site as well, maybe this site wouldnt think I am giving away my name if I use a link to itwebmd.com/drugs/2/drug-1370...
I got a few references by seacing on 'mirtazapine hallucinations'
Sometimes the search engine you use changes the result, as can your location. I used the default android one. Swiss Cows is also really good - you don't have to wade through all the ads like you do on google, and ot does not sell your data. (Yes, Swiss Ciws is an odd name for a search engine.)
Also, discussing side effects like this with a pharmacist is always a good idea. They know more about medications than the gp and it may behe lpful for your gp if you can report what the pharmacist said, who may also be able to suggest a different family of drugs, or at least identify all the drugs in the same family. There are seemingly lots of different drugs our there, but many of them have the same sourec or use the same mechanisms, and they call these families. So, it may be likely you would have this issue with all in the same family. In reality there will eb some relatively small number of families, say or so, that treat the sleep issue - being aware of this can save you some time trying ones at random that are not helpful.
The hallucinations ard not good as they indicate too much of something bukiding up in your brain. Long term this is not good, even if you feel the trade off is worth it for now. You really do need to consult your doctor. (I am so good at putting that off, myself.)
I am so sorry you are going through this. Issues wifh drug side effects arr really common, and some seem more prone than others. They will have a term for that yoj can use with medical prifessionals, here in Canada it is 'senstive ro medications'. It may be different where you live.
Thank you for y9ur best wishes, best wishes to you, too.
Hi Leaf, thanks a lot for your reply and for the very good advice, and apologies for late reply.
I spoke with a good friend of mine who is in the medical profession and he confirmed what you said regarding hallucinations, he reckoned was to do with an increase in dopamine caused by the meds, he's also suggested I spk with gp about changing meds so I'm going to do that. Had another one over the weekend, not nice.
Have just been reading your conversation with Leaf. Sorry you're getting these. I think it could be drug related too - I had the most extraordinary vivid dreams when I was on Amitriptyline and Duloxetine.
Hi Jen, thanks for your message. Yes, I think it must be the meds too, I've been on mirtazapin for around 4 months now, prior to that I was on Sertraline for around 10 months. I switched on my gp's advice as I was having some unwanted side effects, however it seems these ones are now causing even worse symptoms. Ive never kown anything like it, like you I'm having really vivid dreams but also these biz are sleep hallucinations where my eyes are open but I'm still asleep- extremely odd and very unsettling. I've had spiders on the walls, security cameras coming out of the ceiling, new doorways appearing in the windows, a le itating bed, moving hyrogliphics on the walls and most disturbing of all a dark figure which appears at the end of the bed and tries to attack me. I know its not real when it's happening- I even shouted as much at the figure one night and it disappeared! All very odd. I'm going to spk to my gp again - I want to come off them entirely really but know I'm not ready for that yet unfortunately.
In other news, I'm still waiting for my neuro mri results, 4 weeks and counting...
I hope you are well, thanks again and best wishes Bb
Thanks Jen, I'm on 15mg - which gp has told me is the lowest dose, so maybe he is keeping it low due to the bi as u say. Good job really as I'm bad enough on this dose! Cheers and best wishes, Bb.
Jen, I hope u are well? Just to let u know I had my mri results back today, and it showed no evidence of brain injury - which is a massive relief! Neuro said results support the diagnosis of PCS and has referred me on for cognitive tests. Think I'd convinced myself so much that the scan would show something up im not sure exactly what to do now!, - if know what I mean. Anyway, just thought I'd share the good news with you 😀. Best wishes, Bb
Glad it's ok and there's no sign of a bleed Bb 😊 it's pretty normal after concussion to have a clear CT and MRI, and a load of symptoms - but it's really good there's nothing else going on. Glad it's made you feel better too. Also it's really good to get your neuropsychology cognitive tests, so you'll see what that shows up. Glad you're seeing some movement now, sounds like your neurologist is on the ball.
Thanks Jen, yes feels like a weight has been lifted tbh. It doesn't make any of the symptoms magically go away obviously (I wish!) but at least now hopefully I have some clarity and a way forward, with the cognitive checks etc. In other news I've just started a very gentle tapering off the meds (with gp approval) hoping to be off them by end of Jan all being well. Had a few attempts previously to come off them but always ended badly (with a crash!) I'm going to go much slower and steadier this time, fingers crossed. Hope ur enjoying your weekend, I'm on tidying up duties for my sins.. 😂 All the best, Bb.
Hi Bb 1878. I've had all of these too, have written many posts on 'visual weirdness' both external vision and internal, like waking dreams. I was not on any medication at all. It stopped after I got my visual processing issues corrected. Your visual centres come alive when you go to sleep and if they are damaged it causes waking dream issues, ie hypnagogia and hypnapompia. Much of this is recorded under 'narcolepsy' a sleep disorder, but with that you are falling asleep all the time, basically you are conscious while dreaming and it can project to look as if it's outside. It's nothing to be afraid of. I found that relaxing and letting it flow changed the visual effects to pleasant ones like mystical imagery and space imagery. I actually miss it now it's gone, such a phenomenal experience. It's a similar effect to psychaedelics and lucid dreaming experiences.
Hi pinkvision, thanks for your reply - thats very interesting reading your previous posts on this subject - i hadnt realised sleep hallucinations/waking dreams could be caused by the TBI itself, rather id thought it was down to the meds Im on as it only really started a couple of months ago, and my TBI was 12 months ago now. I am trying not to let the experiences get to me now, although when it first started it was very disturbing and the hallucinations had a real bad feel to them - like something was trying to hurt me. Theyve calmed down a bit now (mostly) and more recently ive seen less intimidating things like moving hyroglyphics, movie reel type pictures on the wall etc. I will mention this at my next neuro appt as this has not previously been mentioned by either my gp or the neuro that they could be down to the tbi. Thanks a lot and best wishes, Bb1878.
Not sure it's a good idea to mention it at all. I did and the GP just stared at me without a clue of how to respond. I told my neuropsychologist who went wide eyed and mildly shook her head as if to say 'don't go there.' She did that for a reason, gladly I shut up and that was the end of it. I've looked further into it and it does need to be approached with caution. It's also classed as a psychotic episode, basically it means they have no idea about it and just give it a classification.
My suggestion would be to get your visual processing tested by an optometrist, look at the BABO website and find someone near you. Phone and ask if they have experience with brain injuries before spending money. Ah yes you can't get this on the NHS who only look at occular vision but not processing in the brain. If you are in the south east however try to get a referral to the South Maudsley health authority because they do have specialist visual testing. There's a link in my posts (from this year).
It will eventually go and you will miss it, maybe.
Hi pinkvision, ah yes I see your point- i don't want them thinking I'm losing my marbles! I will take a look at that BABO website, cheers for that. I'm not sure I'll miss the dark figures, spiders or the levitating bed.. but maybe some of the nicer ones I will!Thanks again, Bb.
Sorry should have mentioned that because these issues started after taking medication rather than after your BI then maybe you should mention it and see if it's that causing the effects. (The irony of course is clear to see)
Will do, thanks. I'll be contacting BABO tommorow to check what services are available in my area, hopefully they maybe able to help with my vision issues, I'm surprised my gp or optometrist hasn't mentioned this to me, given all the 'standard' eye checks I have had have come back normal - but I'm still struggling on a daily basis. Cheers and best wishes, Bb
Hey, I suffer from psychosis on top of a tbi. I don't take anything other than 10mg arapiprozal which is an a-typical antipsychotic but still experience the weird dreams and hallucinations. Going to try getting a SAD lamp (natural spectrum light) for the morning and see if that helps. Good to experiment and see what works I guess all the best x
Im not familiar with the SAD lamp you mention, hopefully it will help you with your situation. I keep the bathroom light on now during the night as the hallucinations always seem worse when the room is in darkness. I'm due a follow up neuro appt in the next couple of months and hopefully a referral for cognitive and psychological tests so I'm hoping will find out more about what's been going on. Im also going to try a behavioural optometrist for my vision related issues.
Medication wise Im on 15mg of mirtazapine at the moment and I think this may well be contributing to the hallucinations (although i cant be sure). Im hoping to do a slow tapering off the meds over the next 3-4 months if all goes well so will have more of an idea then i think if they were the cause of the hallucinations, or its something else.
Yes, I've had quite a few fantastic hypnopompic hallucinations all because I hit my head 😊 (nearly four years in).
Mine are when I get up to pee in the middle of the night, though sometimes they do hang on in the morning when I get up and I am unable to pull myself out of sleep. They are in between my vision, I can see beyond them but not between me and them, it fascinates me.
Thankfully they are always full of colour and happiness, never dark and haunting! I've seen some awesome things, geometrics are 🤯 but animals are 👌 I love it when they happen - not so fun walking into the wardrobe trying to figure out what's going on 😆 but they are one of my favourite things about PCS 😊
Hi Feebie8, thanks for your message. I had to re-read my original post as it was a little while back 😂. My hallucinations have calmed down mostly now, I think the meds I was on 12 months ago were definitely giving them a darker menacing edge! More recently I haven't had experienced them as much but when I I do they are truly unreal, patterns on the walls, wierd and wonderful colours, very very surreal! Mine usually occur within prob the first hour of sleeping, and when they start I can end up sitting there watching them for what seems like ages but I'm guessing it's just a few seconds in reality. They are certainly one of the more 'friendly' features of PCS, compared to the many others which we all suffer! Can I ask how long u have been living with PCS? I'm 2 years in August, following a head bump at home. My life hasn't been the same since but I'm still learning things all the time, I wrote an article this week actually on my experiences of living with this condition and what ive learnt, it's on the forum. Anyway, thanks again and best wishes, Bb
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all the best x
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