Hallucinations ….Charles Bonnet Syndrome

Hello lovely people,

So, in my last blog I briefly mentioned Charles Bonnet Syndrome. This is something I have developed since losing my sight and is a condition that creates visual hallucinations which are created by the brain.

Dr Dominic Fitch, the UK’s lead researcher into CBS, describes it as the retina sending a constant stream of impulses to the visual parts of the brain. As the brain is over stimulated, it sends more impulses when there is no or little sight, which then causes the hallucinations.

The parts of the brain that are stimulated determine the kind of hallucinations you may see. For example, if it’s the colour centre that’s affected, your hallucinations will be of colour or if it’s the ability to recognize faces, the hallucinations will be of faces. If the hallucinations aren’t purely visual and if other senses are involved, such as hearing, smell or touch, then it is not CBS.  

Sadly, there isn’t much information available for CBS. When I first started to experience the hallucinations, I was very scared and I thought it may have been linked to my brain, brought on by the stress and shock of losing my sight. It wasn’t something I expected, and I wasn’t aware that it was quite common in my situation. This really shocked me because I have suffered with eye problems throughout my life, yet this was something I hadn’t experienced in the past. I was quite taken aback by the lack of knowledge of the health professionals when it came to the diagnosis. My eye doctors were not very empathetic, and my GP didn’t appear to have much knowledge on the subject either. I was offered anti-depressants, but this wasn’t an option for me.

So, I made it my mission to find alternatives and I found that meditation really helped me. There are many herbal alternatives also available, CBD oil being one, although there is currently no evidence to prove its success.

I have found a few exercises that do help:

  1. Stand up if in a sitting position or sit down if in a standing position
  2. Clapping your hands
  3. Moving your head from side to side and rolling your neck
  4. Shining a touch under the chin up to the bottom of your eyes.
  5. Walking around
  6. Looking with just your eyes from right to left then up and down
  7. Staring straight at the hallucination

There are many more coping strategies listed on Esme’s Umbrella, an information site that can point you in the direction of help. You can also access Dr Dominic Fitch’s research, and there are support room numbers on there that you can contact. The main one being in association with Ring.

Judith has been doing an amazing job so far and has truly started to create awareness for CBS. Esme’s support rooms have also started to pop up around the UK, you can find these on her website. If there isn’t one local to you, get in touch with your local sight awareness charity and find out if they have one nearby or are willing to start one.

My CBS journey is just beginning. It’s now been nine months since I lost my sight and although the hallucinations are getting progressively worse, I am coming to terms with them. Now that I have a better understanding of CBS and why it is happening, I have found myself coping a lot better. Don’t get me wrong, sometimes it is so difficult and I long for just blackness, but it is a part of me now and I know it will ease as times goes on. There are many different types of experiences, mine are mainly colourful animated images. These can be anything from shapes, cartoon characters to Picasso style faces, scary at times. Some people can experience objects in their paths, some can experience seeing people stood in a room with them. People have also reported seeing double decker busses in their houses and spiders crawling over their bodies. These can all be frightening if you don’t know what they are.  Hopefully, as the research continues, there will be more help available. In the meantime, I will continue with my meditation, as this helps me the most. I find connecting with myself and being at peace helps me mentally with acknowledging the hallucinations and accepting them.

CBS can affect anyone with any eye condition. It affects over 50% of people with sight loss, even from just a 20% loss. So please, if you have a member of your family or friend who has experienced sight loss at any age, and they seem distant at times, scared and withdrawn, maybe ask if they have heard of Charles Bonnet Syndrome. If they are seeing anything that they think isn’t there, then they can get the help they need. Don’t let them suffer in silence.

We need to make as much noise as we can about CBS as it needs more awareness and education so we can help those in need.

Thank you for reading and see you soon

Sending love and light,

Nina x


6 responses to “Hallucinations ….Charles Bonnet Syndrome”

  1. Jolene avatar

    This is incredibly interesting and well written too. Thank you xxx

  2. Joanne avatar

    Nina – really interesting articles about CBS and your journey. Look forward to reading more – you are an amazing inspiration. Jx

  3. Deborah avatar

    Thank you for starting this conversation. Awareness is the beginning. 💛

  4. Lucy Webb avatar
    Lucy Webb

    Wow Nina thanks for this blog you are just amazing I’m
    Certainly learning lots from you. Love you Nina see you soon X love Lucy xxx

  5. Lynne Nicholson avatar
    Lynne Nicholson

    Hi Nina… I just came here from Facebook as Girl Gone Blind linked to your Hide and Seek post and when I got to the end of that very relatable post and saw the title of this post I had to read on.

    I’ve been on my sight loss journey for a wee bit longer than you. I’ve lost most of my sight and the cause was diagnosed just over three years ago it’s coming up to three years since I acknowledged to myself I was seeing things… my exact thought was was “oh great not only my sight, now I’m losing my mind” luckily I had found RNIB Connect Radio and heard a piece they had made about Charles Bonnet Syndrome. I’m lucky in that my hallucinations are the only in focus things in my fuzzy world so now I’m used to them I can use a technique or two to dismiss them. Either by looking away (or closing my eyes) to break the stimulus is the most successful for me… staring at the stimulus tends to intensify the hallucination. My ground floor flat has windows that are next to the ramp from the building’s back door to the car park so I have neighbours randomly walk past when I had net curtains I’d catch movement in my peripheral vision and my living room would fill with a crowd of Kilroy people (the old graffiti Kilroy was here with the face peering over the wall) so I put cafe curtains up which has solved that problem… of course seeing a matador and bull as I return from the shops, or a blue crested dinosaur going upstairs in the library keeps life interesting.

    Now I need to read some more of your posts

    1. Nina avatar

      Hi Lynn thank you for sharing your experiences and glad you are finding a way to cope with your hallucinations. I have definitely found it is a case of coping rather than curing thank you for reading and love the blue dinosaur take care

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