If you or someone you know is struggling with vision challenges, particularly macular degeneration, it turns out that certain individuals may experience hallucinations that can be confusing, scary and unexplainable. It may make some people feel like they are going crazy when in reality it is a side effect of their disease.
Sometimes symptoms of disease can be misleading. Lyme’s disease, for instance, which is contracted from a tick bite may be diagnosed as rheumatoid arthritis due to its symptom of joint pain. A patient with Lyme’s can end up on the wrong drugs for long periods of time masking the disease while it advances even more.
In fact, according to the conclusion of a study published in the British Journal of Medicine it was stated that,
“Our population-based estimate suggests that diagnostic errors affect at least 1 in 20 US adults.”
Macular degeneration and other vision diseases could have the side effect of seeing things that aren’t there. This is called Charles Bonnet Syndrome.
Charles Bonnet Syndrome
Charles Bonnet (Bo-NAY) Syndrome (CBS) is,
“a condition that causes vivid, complex, recurrent visual hallucinations, usually (but not exclusively) in adults and older adults with later-life vision loss.” (VisionAware).
It is estimated that between 20-30% of people suffering from macular degeneration, particularly age-related macular degeneration (AMD) as well as those afflicted with cataracts or glaucoma experience CBS.
Charles Bonnet, the Swiss naturalist and philosopher (1720-1793) whom this syndrome was named after, first discovered its presentation in his 87 year old grandfather. The man, who was nearly blind from cataract development, continually reported vividly “seeing” people, animals, architecture and more. Bonnet documented these symptoms not only experienced by his grandfather but other psychologically intact people who struggled with vision loss as well.
Sometimes called “phantom vision” CBS is believed to be similar to “phantom limb” syndrome where amputees experience sensations and even pain where their limb once was. When visual cells are impaired, as in macular degeneration, there is what is called cell compensation. Cell compensation is believed to be the body’s ability to manifest images in an attempt to create something for its host to see. In essence, this is a neurological mixup that can be nothing short of frightening for some if they do not know what is happening.
“The brain is a mash-up of stored visual memories. When visual cells in the brain stop getting information, which happens when your rods and cones stop working, the cells compensate. If there’s no data coming in, they ‘make up’ images.”
Fear Begets Silence
CBS was once thought to be a rare occurrence but it turns out that many more people afflicted with vision loss experience it but don’t report it due to the fear of suffering from mental illness rather than vision loss side effects.
This is an account of CBS by a Canadian man named Jack Hunter who suffers with glaucoma, cataracts and macular degeneration as reported by Daily Mail:
“I saw what appeared to be a woman, and she was mopping the floor. All I could see was the profile of a woman standing there and one hand was going in and out negotiating the broom. And the more I tried to turn my head to see, I saw less of it. And if I really looked hard, it disappeared altogether. I wouldn’t say I was afraid. I was a wee bit concerned.”
CBS does not have any correlation with mental illness and the more those suffering from AMD and other vision loss know this, the more they may be put at ease.
The Lighthouse Guild comments on the importance of distinguishing CBS from mental illness:
“[Individuals] who perceive these visions know they’re—mirages, of sorts. That is, the images are illusions, not delusions. The difference is that a person with delusions is convinced that what s/he sees is real. [People] with Charles Bonnet Syndrome may initially second-guess themselves but ultimately accept that their perceptions have no substance.”
Make It Go Away
If you or someone you know is experiencing what may seem like CBS symptoms, there are some techniques that can be done to manage these hallucinations.
- Open and close eyes several times
- Rapidly move eyes up and down and back and forth
- Look or walk away from the hallucination
- Stare at the image until it disappears
- Turn on a light source
- Distract yourself from the image
- Walk into the image
- Yell at the image
CBS hallucinations are more likely to occur when an individual is alone and in a low light atmosphere.
If you are experiencing unexplained images talk to your doctor first to rule out other afflictions that may mimic CBS. These include migraine episodes, epilepsy, brain tumors, dementia, Parkinson’s disease, or mental illness. Once you are negative regarding these you’ll know that it is probably a symptom of your macular degeneration or other vision loss challenge where you can use these recommended ways to manage it. If you suffer from age related macular degeneration, then be sure to buy good macular degeneration vitamins and take them everyday.
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