Seeing things that aren’t there

Last week Annmaree and Suzie travelled to Newcastle to talk on “seeing things that aren’t there” or visual hallucinations, often called Charles Bonnet syndrome. 

“Seeing things that aren’t there”, that no one else can see and that are called visual hallucinations.

“Seeing things that aren’t there” is very common in people with problems seeing well. Deafblind people “see things that aren’t there too”.  These things are also called Charles Bonnet syndrome. But today we are just going to call them “seeing things that aren’t real”.  There are many other conditions that cause us to “see things that aren’t there” such as Parkinsons disease, dementia, mental health conditions and delirium for example. What we are talking about is the combination of vision loss, hallucinations and a brain that works just fine in an otherwise well person.

Is it common for people with low vision to “see things that aren’t there”?

Short answer: YES

Long answer: One in every three of us who don’t see very well can “see things that aren’t there”.

As long as we are well, and our brain is working just fine and we know afterwards that the things we see aren’t real, they are not a problem, harmless. And we are not mad or bad or dangerous.  “Seeing things that aren’t there” doesn’t mean we need treatment unless these things we are seeing are scaring us, stopping us from sleeping or happening so often we can’t enjoy our lives.

But “seeing things that aren’t there” can be very disturbing at first, when we don’t know what is going on and why this is happening and what it all means. And there isn’t much knowledge out there about how common “seeing things that aren’t there” for us people with problems seeing well. Not many doctors talk about it to us and there are some other conditions that can cause us to “see things that aren’t there” that can be frightening.

Some examples

Let me give you an idea of what they can be like be telling you about my own experiences. I have been “seeing things that aren’t there” for a very long time.  

When I was twenty, I was walking along the street with my friends and a strange man jumped out at me.

Oh oh sorry sorry. I said.

I thought I had nearly bumped into him.

He was tall.

He had a dark suit on

He wore a white shirt

He had a red tie on like red wine colour,

His suit had shiny gold buttons

Who are you talking to you said my friends.

“That man over there” I said but I looked and there was no one there.

And then I realised:

He didn’t have a face and

He didn’t have any shoes or feet really

Here we have an artists representation of the man in the dark suit :

I was studying to be a doctor and I knew that seeing things that aren’t there is NOT good, so I worried about this.  And because I didn’t want anyone to say I was mad, bad or dangerous, I TOLD NO ONE.

And no one has ever asked me if I see things that aren’t there: no doctor, no nurse, no worker from any of the places that provide support.

I just worried in secret. I hope this man would GO AWAY.

But the man in the dark suit didn’t go away. He kept on jumping out at me:

In restaurants especially if there was a cute person taking me out and there were candles on the table

In dark hallways at night where I worked at the hospital

In streets

In Sydney, Melbourne, Canberra

In London, France, Hong Kong and New York

After I had my first baby I kept on seeing the man in the dark suit so I finally told a doctor I met, who worked with the Deaf and Deafblind communities. I said I am really, really worried that I might be really mad, bad and dangerous and hurt the baby.  He laughed. He really laughed at me and said it is perfectly OK, it’s called Charles Bonnet Syndrome or visual hallucinations or simply “seeing things that aren’t there” and it is really common in people losing their eyesight.

Such a relief. But why didn’t anyone ever tell me about this?

So, the man in the dark suit stopped stressing me so much when I saw him. I saw him a bit less when I was relaxed and was happy, but I couldn’t make him pop up or go away. He did what he liked, when he liked, And no one else could see him.  Just me.

Then one day, a few decades later, when I was very busy and working hard, I woke up in the morning. Looked at my watch, which was analogue and had big numbers and hands that went around.  ELEVEN O’CLOCK. OH NO I WAS very very late for work. I checked my watch again. HUH, it now said seven o’clock. Then I checked again the watch now said three o’clock. AND none of these times were correct. It was actually one in the morning.  Ok I thought I am having a stroke. This is not like the man in the dark suit who doesn’t change. So it must be something different.  Luckily, I had an appointment with a new eye doctor the next day.  I told him about the watch with weird times.  He said you are simply “seeing things that aren’t there.”  So, no stroke. That’s good. But it was difficult managing to get out and about on time when I could never trust my eyes to see the right time. I got used to checking the time on my mobile phone because that was never weird, just the old fashioned analogue watch with a big face and big bold numbers that I wore.

Some months later, I decided I needed something I could wear to detect if I had a fall. I went out and bought a digital apple watch with the loveliest big numbers. And the funny times just disappeared.  I think it is because it is digital and not a round clock face with numbers, I know instantly if see the clock hands and numbers on the edge, it’s not real so don’t worry or pay it any attention.

More recently I was in New York for a meeting and was having drinks in a bar. All of a sudden I saw little palm trees on the walls, in the air, on seats.

My first thought. My drink has been drugged! But then I saw palm trees in the lift and on the road. I realised then. THEY ARE NOT REAL. NOT REAL.  Let me tell you it can be tricky crossing a road when you are deafblind and there are palm trees everywhere.  But they aren’t real. And I am not mad, bad or dangerous.

But not everything is a hallucination. Earlier this year my husband took me for a meal in a posh hotel.  I looked around and saw….. PALM TREES all on one wall. 

Oh dear palm trees are here again I told him.  He looked up and laughed, then got his phone out and took a photo. He enlarged this so I could see it. And there were REAL palm trees on the REAL wallpaper. So this was REAL. 

Why do we see things that aren’t real?

We don’t know as much about “seeing things that aren’t there” as we should.  There are several theories but the two best theories are:

1. The brain is making stuff up because our eyes are sending less information and fewer pictures to it. So it just throws out random pictures which we see as hallucinations or things that aren’t there
2. The neuro matrix theory. The neuromatrix is a web of connected cells all over our brain and this fires off random pictures which we see as hallucinations

Some researchers have done MRI scans on people’s brains when they are seeing things that aren’t there and found that different parts of the brain light up depending on the type of hallucination. But this isn’t something most of us can do as our hallucinations are unpredictable and often ‘out of hours’.

What kinds of things do people see?

Hallucinations usually last for seconds or minutes but can last much longer and may interfere with daily life or sleep.  They can be pretty scary, but most of us get used to it. A few people can’t sleep properly or the things they see are very scary such as seeing a devil or someone with missing parts of their face. The things we see that aren’t real can be still or they can move. They can be black and white or in colour.

So, what can we do about them?

Firstly, and most importantly we can teach doctors and nurses and people who work with us and our families and ourselves, about this. We need to let everyone who is losing their sight know earlier, before hallucinations so we can worry less, get seen earlier and get the reassurance and support we need.

 It is so much better if we know about the chance of “seeing things that aren’t real”  BEFORE we see them. They are very common and most people never tell anyone about what they see, which makes them worry when they don’t need to. This is one of the jobs we are doing in our project at the university, we are making sure we teach people about how, with vision loss (and dual sensory impairment) “see things that aren’t there.” We put this information in our books, in our presentations and here on the website. More information can be found at the Charles Bonnet syndrome foundation:  www.charlesbonnetsyndrome.org

Next, we have to see our doctor, tell them we are “seeing things that aren’t there” but we know they aren’t real and get checked out. Not all doctors are aware of the condition and its frequency so we might even have to educate them too.

And then, we have to do what we can to keep our vision as good as it can be. We need to see our eye doctor regularly. We might need to get any cataracts taken out if they are making our vision worse. We might need treatment for our macular degeneration or diabetic eye disease. But often there isn’t much we can do as a lot of sight loss is not fixable.

After that, we must take good care of ourselves and our health so that we are not too stressed. Stress can make hallucinations appear or get worse. My palm trees came when I was jetlagged and tired.  Sometimes bright lighting helps, my man in the dark suit doesn’t pop out when it is very bright. He seems to like dark places.  We need to be as well as we can be, as being sick can make another type of “seeing things that aren’t there” happen: called delirium and it is more serious. I will explain this later on.

We also need to keep ourselves connected to family and friends and keep up with hobbies, interests and current events.  It is important that we are not lonely at home. “Seeing things that aren’t there” is more common in people who are very lonely or isolated.  But the good news is that if we have a bit more social activity this can make the hallucinations happen less often.  So, taking good care of ourselves is important. As we lose our sight we might need more help from others and support organisations, and we might need someone to drive us places and help us navigate social events. We need society to do its bit too, by making sure there are accessible ways for us to get information such as large print, audio description or braille. These can help us be and stay connected with what is going on around us.

What about if the things we see are upsetting or frightening?

Less than one quarter of people have scary , horrible things that they see that aren’t real. Sometimes hallucinations may be frequent and interrupt sleep.

Firstly: make sure you see the doctor and check that there is no other cause. Often some reassurance goes a long way. Making sure we are all well supported with the people around us, useful devices and home modifications to maximise our safety and easy getting around is important too.

Then for the severe cases where we can’t sleep, can’t manage our lives there are a few medicines we can take. We need to stress here that there are no evidence based guidelines as to which type of medication might work best for which person. It is a matter of trial and error using drugs such as benzodiazepines, anti psychotics, anti epilepsy medications or antidepressants. But it is important to see and talk to the doctor so that they can help us get more support and more information and supervise any treatment.

What does it mean however, when we “see things that aren’t there” and we are not well? We are sick or hurt or in pain?

This is unfortunately very, very common especially as we get older. You don’t need to have sight or hearing loss to experience this. “Seeing things that aren’t real” when you are sick or hurt   is  called DELIRIUM.  This is when we have had a fall, an illness, a fever, strong pain relief medicine, an anaesthetic, our brains can be affected for a little bit until we are better from the cause.

My children love to tease me about the time I saw PINK FLUFFY CLOUDS after an operation when I was on strong medicines. Apparently I said to the children when they came to visit

Oh look! there are pink fluffy clouds on the ceiling.

I was quite certain these were real. The doctor stopped the medicine and the clouds went away.   So it is important when we are sick and “seeing things that aren’t real”, our families take us to see a doctor and get us sorted out .

The important things to know

The  combination of vision loss from any cause, hallucinations and a brain that works just fine.is common and occurs in one in three people with low vision.

For most of us reassurance, getting checked out, being supported well and staying socially connected will help us manage. Treatments are available for the few who need this.

What we need to do is talk about the things we see, and to increase the awareness of our health care providers about the condition of benign hallucinations also known as Charles Bonnet syndrome.