Blind and Visually Impaired Community
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Is this Charles bonnet syndrome? (self.Blind)
submitted by itsrainingnoodles55
Not sure if this is the proper place to ask this or not, but, I had a severe head injury a year and a half ago and I went temporarily blind for about…somewhere between 10 minutes and an hour? I don’t really remember much.
My vision turned to a grey out in both eyes, and then I started seeing purple fractals once the grey out happened. I lost consciousness, woke up, and was hallucinating yellow, geometric grid lines, purple hazey tints, and could not see anything in fine detail.
For a long time, looking out my right eye, all I saw was a purple and black circle in half my field of vision.
I’ve had an ophthalmologist look at my eyes and told me there’s nothing wrong with my eyes themselves so it’s a brain thing. So I’ve been to multiple neurologists and they can’t find any damage - I had a CT & MRI done of the brain.
To this day I still have the hallucinations. They vary in intensity - some days it’s full on fractals on every surface and some days it’s just colors and waves and lines that shouldn’t be there. My visual acuity is better when I’m not hallucinating.
It oddly is also worse if I’m laying on my back…essentially if the back or my head/base of my skull has any pressure on it, at all, the hallucinations increase in intensity. It’s very strange. Also worse when I first wake up and start using my eyes in the morning. Like they’re still sleeping or something lol takes a minute for my vision to clear up a tiny bit.
I also see trails/images fade slowly after I move my eyes, & I see flashes of light of all colors with eyes open and closed that temporarily blind me (when eyes are open) for a few seconds. It gives me headaches and makes me nauseous.
I finally found a neuro optometrist in my area to check it out but no one has had an explanation for it at all & I just learned about CBS & wondered if anyone here had any more info, or if this sounded like that.
Edit to add - I’m not particularly disturbed by the hallucinations themselves - more so that I have no idea what causes them, what makes them flare up, & if they’ll ever go away. I just want answers lol.
My vision turned to a grey out in both eyes, and then I started seeing purple fractals once the grey out happened. I lost consciousness, woke up, and was hallucinating yellow, geometric grid lines, purple hazey tints, and could not see anything in fine detail.
For a long time, looking out my right eye, all I saw was a purple and black circle in half my field of vision.
I’ve had an ophthalmologist look at my eyes and told me there’s nothing wrong with my eyes themselves so it’s a brain thing. So I’ve been to multiple neurologists and they can’t find any damage - I had a CT & MRI done of the brain.
To this day I still have the hallucinations. They vary in intensity - some days it’s full on fractals on every surface and some days it’s just colors and waves and lines that shouldn’t be there. My visual acuity is better when I’m not hallucinating.
It oddly is also worse if I’m laying on my back…essentially if the back or my head/base of my skull has any pressure on it, at all, the hallucinations increase in intensity. It’s very strange. Also worse when I first wake up and start using my eyes in the morning. Like they’re still sleeping or something lol takes a minute for my vision to clear up a tiny bit.
I also see trails/images fade slowly after I move my eyes, & I see flashes of light of all colors with eyes open and closed that temporarily blind me (when eyes are open) for a few seconds. It gives me headaches and makes me nauseous.
I finally found a neuro optometrist in my area to check it out but no one has had an explanation for it at all & I just learned about CBS & wondered if anyone here had any more info, or if this sounded like that.
Edit to add - I’m not particularly disturbed by the hallucinations themselves - more so that I have no idea what causes them, what makes them flare up, & if they’ll ever go away. I just want answers lol.
thatawkwardcosplayer 2 points 11m ago
I get the same trails / hallucinations but they didn’t happen till after I got wacked with a car. (im good now!) however- im also Schizophrenic which was also affected by my TBI. I’ve definitely noticed more minor hallucinations from my TBI related to both regular vision and skitzo stuff.
Mine tend to flare if I’m stressed or anxious, or even paranoid. Sometimes I don’t even know I’m stressed until the hallucinations start then I’m like “ah fuck- time to take a chill moment.” Im on medication which helps a lot. They’ve helped cut down on all hallucinations. Magnesium RX supplements also strongly helped a lot for some reason?? Could not explain the science to you as I’m still waiting to talk to my doctor abt the changes. Hope this helps a little!
Mine tend to flare if I’m stressed or anxious, or even paranoid. Sometimes I don’t even know I’m stressed until the hallucinations start then I’m like “ah fuck- time to take a chill moment.” Im on medication which helps a lot. They’ve helped cut down on all hallucinations. Magnesium RX supplements also strongly helped a lot for some reason?? Could not explain the science to you as I’m still waiting to talk to my doctor abt the changes. Hope this helps a little!
suitcaseismyhome 1 points 11m ago
Agree about the magnesium I was taking for cancer, and it certainly has been a difference
thatawkwardcosplayer 2 points 11m ago
Magnesium is my absolute beloved. It helped with hallucinations and minor absent seizures. It’s wild how much a simple supplement can help
puchuchita 1 points 11m ago
I have Silent Migraine with Aura and Visual Snow Syndrome, and I would really recommend that you look into these conditions, especially VSS. Please follow the link to read some of the symptoms - they really add up to what you (and I) experience. So far, there is no known cure - but just having a conversation about it with your doctor could steer you in the right direction and maybe give you some answers.
https://www.visualsnowinitiative.org/diagnostic-criteria/
https://www.visualsnowinitiative.org/diagnostic-criteria/
itsrainingnoodles55 [OP] 1 points 11m ago
Thank you for this! I have heard of VSS & that was what I initially thought it was - but to be honest I have my doubts. I do not actually see the “snow” or static at all - nor do I have the increased BFEP or difficulty with night vision. I never see dots in my field of vision, just moving geometric patterns or odd color tints, lines, waves, & colorful flashes that should not be there. It’s more similar to HPPD from what I’ve read about it but it’s definitely not HPPD because I didn’t get it from taking drugs, I got it from a TBI.
suitcaseismyhome 1 points 11m ago
Could also be visual migraine? I get purple and fragments, different from my hemiplegic migraine
My neuro opthalmology team says that issue is visual migraine, but they also diagnosed other issues after long series of testing
Good luck!
My neuro opthalmology team says that issue is visual migraine, but they also diagnosed other issues after long series of testing
Good luck!
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