Charles Bonnet Syndrome: Diagnosis and Care

You’re taking care of your visually-impaired mother. It’s just the two of you, and you’re fixing up some lunch while she’s watching TV in the other room. From the kitchen, you hear your mom talking to somebody. You rush into the living room to find her alone, talking to an empty chair. Okay, this is scary on a few levels, but before you freak out too much, there are scientific explanations. Whenever you or a loved one is having hallucinations, you should absolutely visit the doctor because there are a number of conditions that could be causing them. One of these conditions is called Charles Bonnet Syndrome, or CBS, which causes visual hallucinations. This sounds awfully scary, but it’s entirely manageable.

What Is Charles Bonnet Syndrome?

Charles Bonnet Syndrome is a fairly common condition where people with vision loss experience visual hallucinations. The condition is named after a Swiss scientist who noticed the condition in his grandfather. Bonnet (pronounced bo Nay, not Bon net) would later also develop the syndrome. The Macular Society states that about half of people developing macular degeneration experience CBS at some point.

With CBS, hallucinations tend to be entirely visual, with no auditory symptoms. This means if you see somebody in the room and talk to them, they won’t talk back. Luckily, most who experience the hallucinations will be aware that they aren’t real. Unfortunately, due to stigmatization of anyone who suffers from hallucinations and fear of what the condition could be, it often goes unreported. As we’ll cover later, CBS isn’t to be feared. The hallucinations may startle you, but that’s usually the extent of it.

While startling or even creepy, the hallucinations are rarely outright unpleasant or threatening to the viewer.

Hallucinations from CBS usually come in two forms: simple or complex. Simple hallucinations can appear as repeating patterns, like a grid or shapes in your vision. Sometimes, you may see lights or colors, as well. More complex hallucinations may manifest as animals, objects, and even people. They may move or remain still and aren’t always people you know or recognize. In fact, they may just be forms rather than complete people with features. While startling or even creepy just from the fact that you’re seeing something that’s not there, the hallucinations are rarely outright unpleasant or threatening to the viewer.

What Causes CBS?

There isn’t much known about Charles Bonnet Syndrome other than it being connected to vision impairment. Any condition that weakens your eyesight can eventually lead to this condition, but it’s not guaranteed, either. Currently, the strongest theory as to the cause of CBS has to do with the way your brain interprets visual signals. Normally, your brain receives these signals from the eyes, but when your eyesight is impaired and stops sending those signals to the brain (or sends weaker signals), your brain fills in the blanks. These blanks are pulled from your memory and become the hallucinations you see.

When your eyesight is impaired and stops sending those signals to the brain, your brain fills in the blanks.

There are several factors that can increase the chances of experiencing hallucinations from this syndrome. The two prime factors are vision loss, mentioned previously, and age. Simply, the older you are, the more likely you are to experience CBS. Additionally, social isolation and dark environments can lead to hallucinations. Other than these potential risk factors, not much else is known about what causes CBS.

Is There a Treatment Available?

Since not much is known or understood about Charles Bonnet Syndrome, there is currently no treatment or cure for the condition. That said, coping with the condition is very possible, especially once you report your hallucinations to your doctor and receive a diagnosis. Once it’s established that your hallucinations are coming from CBS and not a mental or psychological condition, the relief may feel palpable. It’s also important that the person experiencing the hallucinations knows that what they’re seeing isn’t real. Reminding yourself or your loved one that it’s just a hallucination and why they’re seeing it (the CBS) can relieve a lot of anxiety that would be caused by hallucinations. The good news is that CBS can improve or go away on its own, and that alone can bring relief.

Since there’s no cure for CBS, coping with the condition is critical, and stress and anxiety can make the hallucinations more common.

We’ve mentioned relief of stress a few times, and it’s for a good reason. Since there’s no cure for CBS, coping with the condition is critical, and stress and anxiety can make the hallucinations more common. The same is true of isolation and fatigue. Socializing and rest can combat stress, isolation, and tiredness, making them both excellent ways to cope with the condition. Also, keeping your eyes healthy and protecting your vision can help ensure the condition doesn’t worsen.

But what if you’re having a hallucination right now? Are there ways to stop them? There are actually a few techniques you can try out. Changing your environment in some way is a very common suggestion. For example, since dark environments are risk factors in CBS, lighting up the room may help end the hallucination. So, actions like turning on the TV, opening a curtain, or even going into a different room may do the trick. Blinking rapidly can sometimes work if changing your environment doesn’t stop the hallucination. You can also try looking from left to right for 15 seconds, resting briefly, and then repeating the motion three or four times. The key is to get your eyes active and send new signals to your brain.

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Hallucinating for any reason can be scary, especially if you don’t know why. While there may be a perceived stigma about hallucinations — that you’re crazy or losing your mind — it’s critical that you talk to your doctor about them and get a diagnosis. There is no shame in accurately reporting your symptoms to a medical professional. If you do receive a diagnosis for Charles Bonnet Syndrome, know that the condition is entirely manageable. And, knowing the cause of your hallucinations is one of the first steps in coping with what could have been a really scary symptom.