Between 2011 and early 2012, I went through a long phase of depression. And when I started seeing things which were really not there, I really thought I'm going mad. For almost a week, I saw off and on these distorted, formless shapes/objects superimposed on the everyday - unreadable text floating in front of my eyes, on the mirror. I was used to the occasional visual illusions /misperceptions which most of us with SD suffer, but these new kind of prolonged visions were not fun.
I was concerned for my mental well-being, and I decided to seek medical help for my depression. To control my anxiety levels, they prescribed me some anti-depressants during the first consultation. I was so frightened with the thought of some colored pills controlling my life that I didn't take any.
I tried to meditate myself to sleep.
Next morning, I took out my running shoes, and started training again after several years of hiatus. My energy levels were again back to normal in few days. I positively tried to bring some changes into my life.
Everything was going right in my life, and then suddenly out of nowhere I start seeing things again one day. Even thought it lasted for a minute or so, I was really terrified. I went into a state of panic. I asked myself if I'm "really" alright now?
I had read about Charles Bonnet Syndrome (CBS), so I called my retina specialist after a few days when I could think a little clearer. He said it was probably CBS and nothing that I should worry about. He reassured me that it is not psychiatric in nature, but just hyperactivity of the brain to fill the blind spots with something. When it cannot draw on sensation, it draws on memory.
Over time, I've noticed that the days when my eyes are very tired, these hallucinations return. And they go away quickly as well. I've learnt to not associate with my mental health. Although it was hard in the beginning. I prefer not to discuss this with others though (family or friends), as I'm not sure if they will understand.
Recently I read an interesting book by Oliver Sacks titled Hallucinations, where the author argues that having hallucinations does not mean psychosis. In fact hallucinations are rather a "positive phenomena, as opposed to the negative symptoms, the deficits or losses caused by accident or disease, which neurology is classically based on. The mind is not able to tell apart vision from reality as the hallucinations are much more like perceptions. They make use of same visual areas and pathways as perception. [...] In modern Western culture, hallucinations are more often considered or portend madness or something dire happening to the brain - even though the vast majority of hallucinations have no such dark implications. There is great stigma here, and patients are often reluctant to admit to hallucinating, afraid that their friends and even their doctors will think they are losing their minds..". There is an entire chapter on visual hallucinations related to Charles Bonnet Syndrome, where he details several types of hallucinations - text, notation, music that one sees for hours but which cannot be read; misshapen distorted images/objects/faces, misalignment, distortion, inversion of image, etc.
I was concerned for my mental well-being, and I decided to seek medical help for my depression. To control my anxiety levels, they prescribed me some anti-depressants during the first consultation. I was so frightened with the thought of some colored pills controlling my life that I didn't take any.
I tried to meditate myself to sleep.
Next morning, I took out my running shoes, and started training again after several years of hiatus. My energy levels were again back to normal in few days. I positively tried to bring some changes into my life.
Everything was going right in my life, and then suddenly out of nowhere I start seeing things again one day. Even thought it lasted for a minute or so, I was really terrified. I went into a state of panic. I asked myself if I'm "really" alright now?
I had read about Charles Bonnet Syndrome (CBS), so I called my retina specialist after a few days when I could think a little clearer. He said it was probably CBS and nothing that I should worry about. He reassured me that it is not psychiatric in nature, but just hyperactivity of the brain to fill the blind spots with something. When it cannot draw on sensation, it draws on memory.
Over time, I've noticed that the days when my eyes are very tired, these hallucinations return. And they go away quickly as well. I've learnt to not associate with my mental health. Although it was hard in the beginning. I prefer not to discuss this with others though (family or friends), as I'm not sure if they will understand.
Recently I read an interesting book by Oliver Sacks titled Hallucinations, where the author argues that having hallucinations does not mean psychosis. In fact hallucinations are rather a "positive phenomena, as opposed to the negative symptoms, the deficits or losses caused by accident or disease, which neurology is classically based on. The mind is not able to tell apart vision from reality as the hallucinations are much more like perceptions. They make use of same visual areas and pathways as perception. [...] In modern Western culture, hallucinations are more often considered or portend madness or something dire happening to the brain - even though the vast majority of hallucinations have no such dark implications. There is great stigma here, and patients are often reluctant to admit to hallucinating, afraid that their friends and even their doctors will think they are losing their minds..". There is an entire chapter on visual hallucinations related to Charles Bonnet Syndrome, where he details several types of hallucinations - text, notation, music that one sees for hours but which cannot be read; misshapen distorted images/objects/faces, misalignment, distortion, inversion of image, etc.
Here is a link to his Ted talk: http://www.ted.com/talks/oliver_sacks_what_hallucination_reveals_about_our_minds.html
I also came across a comprehensive article on scientific american blog on CBS which may be of some help:
http://blogs.scientificamerican.com/guest-blog/2012/08/09/when-seeing-isnt-believing-charles-bonnet-syndrome/
4 comments:
hello
Thanks for sharing this. My disease is not as progressed as yours yet, but it have begun to experience some visual oddities on top of the predictable loss. A bag of candy on the table becomes a cat, or the remote control I reach for vanishes. I can see how, as my vision worsens, my brain is playing catch-up. I am less frightened of these changes as I read of the experiences of others, so thank you.. Depression has always been a part of my life with or without vision. And although my failing eyesight takes my depression to a new challenge, it is one I will live with. You are not defeated. Did I say 'thank you' ?
Thanks for sharing your story. I am sorry I have not been active here. It is difficult to manage depression when you can't "trust" what you see. Some days I am quite tough and other days I feel like a nervous wreck. It is all part and parcel of living with SD I guess. There are strong moments and then those really dark ones when you just want to turn all the lights out. Even though I try to be objective and find ways to manage my life with SD, but there are moments when I just succumb to depression. We are also not easy on ourselves I think. We do not want to accept what we can't do anymore. A misplaced will to fight back the change. I know that what applies to the sighted world will not work for me. I need to find different ways to "see" things but then I am lazy. And it builds depression.
Angst apart, hope you have found some way to deal with these hallucination and perception problems. Most of the times I think it is okay, but sometimes it just leads to all kind of random accidents that I really hate!
I think i need eye checkup after I read this article
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