Charles Bonnet .. Has anyone been diagnosed with Charles bonnet syndrome with relatively good eyesight?

[Giro26]

It all started each time I woke up I would see a huge black blob.. Blind spot in my vision which quickly disappeared upon blinking. This can also be bright white as it fades.

Few months later again in the night.. Alongside the usual blob I started to see letters! Numbers! Patterns! I thought I was going mad. Rang my gp and without actually seeing me.. diagnosed Charles bonnet and advised me to see optician. I had already done this and she said eyes are fine and dismissed the hallucinations saying it's common!

I have been referred to hospital (by my optician) due to constant lid issues. Explained my scenario to the consultant and he has done every test possible and assures me there is nothing wrong with my eyes and seems "highly unlikely" I have Charles bonnet and to talk to my gp about what else could be causing this.

I am currently being treated for corneal inflammation in one eye.

I have trouble with glare and after imaging. Also when looking into the darkness slight visual snow effects.

I have contacted my gp who has still not come back to me.

Is anyone in similar situation?

[Carol_MacularSociety Partner]

Dear Giro26,

Please see our link below on Charles Bonnet Syndrome for discussion with your GP.

macularsociety.org/macular-...

The link below may help you with some practical ideas on how to deal with glare issues.

macularsociety.org/support/...

Kind regards,

Carol

[tallyho]

Ocular migraines can also cause this too you don’t often get a headache with it. Just a thought.

[Giro26 in reply to tallyho]

Thank you for your reply.. I just get this most nights when eyes have been closed..I will mentionto my gp as if it is migraine surely it is not right every night..😳

[Hrosie]

Hello .. I have some of symptoms you describe. I also have AMD in both eyes - one worse than the other. Vision has been maintained in my left eye through Lucentis injections over 4 years. Now stable so injections paused. re Black Blob - I had that for many years before onset of AMD, usually followed by an ocular migraine with zigzag lights (called a scintillating scotoma). I still have that from time to time but usually lasts for about an hour. Over past 12 months I have also suffered from bouts of palinopsia which is seeing of repeat images that persist in my vision after I've looked at certain objects, usually patterned, which can last up to 2 or 3 days before subsiding. I too am sensitive to light & wear a peak to reduce the glare - local sight support branch also provided me with yellow lens overglasses which reduce the glare by cutting out blue light. I've discussed all these issues and asked advice throughout my treatment by opthalmologist at NHS eye clinic I attend regularly but no one as ever suggested they are Charles Bonnet syndrome. I hope this helps you to understand a little more. Regards & best wishes

[Giro26 in reply to Hrosie]

Thank you so much for your reply.

I am wondering whether AMD may be developing. My consultant says eye health is very good though.. I just wear glasses mainly for distance and very close up work.

I am back to see consultant next Tuesday. Will ask again regarding AMD.

I will also ask about the over glasses.

Luckily my palinopsia (thanks for this) does not last for days but is more so a nuisance.

I am sure there must be something they have missed.

[Hrosie in reply to Giro26]

Glad to be of help. The palinopsia is a nuisance but it does eventually go away until something seems to trigger it off again - thankfully only a couple of times a year. Kind regards.

[ess2021]

I'm in a very similar situation to you! It started with the black blobs during the night, which go away with blinking as you mentioned. A few months later, I also started seeing shapes and patterns (no letters or numbers yet!). Same visual snow in the darkness, glare, and after image issues.

Ophthalmologist says eyes are healthy - routine exam, visual field test, and OCT imaging all perfectly normal. Followed up with a neurologist, who believes it could be "migrainous activity," but sent me for a brain MRI to be safe. MRI came back completely normal.

Primary care doctor has never heard of anything like it - seems like no one can really explain it, but no one can find anything wrong either. It's very frustrating.

[Giro26 in reply to ess2021]

Wow.. You seem to be in identical situation to me!! Yes it is soo frustrating.

I would feel more at rest if seen by neurologist too.. I just seem to be getting fobbed off as they cannot find any eye problems. Something must be causing it as it only started about 6 months ago.

Will see what my consultant says next week and post back to you.

Thanks for your reply.

[Giro26 in reply to ess2021]

Hi..I have had my brain scan and all normal too.

Still having the blob issues in dim light and patterns upon waking . No one seems to have an explanation . You still having problems?

[ess2021 in reply to Giro26]

Hello! Yeah unfortunately this is still going on, though I will say that the frequency has dramatically decreased. For the first few months, this happened every single night, and often multiple times per night. But so far this year, I've gone so much as a month or two at a time with nothing. This past week I've seem them a few days, and a few days I haven't.

In March, I went to see a highly rated neuro-opthalmologist to get one last opinion. He spent a ton of time with me (over 3 hours!) asking me every question under the sun about my medical history, and redid all of the traditional neuro and eye exams. He also couldn't come up with an explanation. He said over the years, he's seen a handful of patients with bizarre, inexplicable visual phenomena like this, and folks just learn to live with it. He said there hasn't been a case he's seen where someone has these issues, then years later has some sort of devastating eye problem or anything like that. In his experience, they've all been harmless (apart from the stress). Since a brain mass was ruled out, he has no concerns from his end. He did note that "dim-light vision" is not well understood, and the majority of patients who have these visual hallucinations have them in dim light.

His takeaway was that short of them defining a new disease for me, there is not much he could diagnose me with outside of migrainous activity. Though I did ask if they do define a new disease for this, that they name if after me Overall this guy has been practicing neuro-opthalmology for like 50 years at a great teaching hospital, spent a ton of time with me, and if he says its nothing to worry about, that might be the best answer I can get. I definitely wish there was an explanation, and more so wish it would just go away, but it's not keeping me up at night or causing much anxiety anymore.

How are you feeling about it?

[Jbenson]

So interested to read the possible link with ocular migraines. I have AMD in one eye and do have the black blob in the right light conditions. About two years ago I started seeing patterns and latterly a Mr Punch type man hanging through the ceiling I just blink it away and have assumed it to be some type of Charles Bonnet syndrome but in the last three years I have started to have migraines auras I think they are know as silent auras there is no warning and no headache. I have never mentioned it at the clinic time is always very tight.

[Giro26 in reply to Jbenson]

I see little cherub faces very occasionally. Like you when I blink they go away quickly.

I have had optical migraine a few times before this all started but tended to be typical one with no headache and zigzag blind spot for about 20 mind until it passed through field of vision.

This tened to be when I was dehydrated.

The blob that occurs at night disappears quite quickly when looking at a light. The Charles Bonnet images seem to be lurking inside blob.. Sounds mad I know...😥

[Jbenson in reply to Giro26]

I have wondered if dehydration might be a contributing factor to my migraines. So thank you for that, that’s a problem easily remedied.

When you tell someone or write down what you see it does make you feel as mad as a box of frogs but when it’s happening it’s just part of the day.

[Ayralin]

I have the black spot at night as I try to go to sleep in my AMD eye. Sometimes it becomes this pulsating rainbow blob that grows spider legs and then scrambles away. Sometimes the blob dances into geometric shapes that are like an old kaleidoscope. Only in the AMD eye. In the UK, you have a support group for Charles Bonnet Syndrome - charlesbonnetsyndrome.uk/ I am in the USA, but it is an informative site!

[Giro26]

I am so sure I have AMD!! I see the spider also.. I have patterns. Numbers and odd letters also.

Yes exactly like a kaleidoscope!

My consultant insists my eyesight does not warrant CBS as my eyes are too healthy! The websites say different..

Feel like no one is really taking me seriously.

Thanks for reply

[Augenstern]

The black blob after awakening has become a "normal " Wet MD in both eyes, when at first the big floating yellow or green visions started I was so petrified , and now I also get the shapes and images of scenes and people. it occurs more after a stressful day or event.My doctor never fully explained it , it was my own research .

It is very frightening , you fear for your sanity ., but once you do some reading or have a caring doctor to explain , it will ease your mind

[oldoakowl]

I have black blobs at night that lessen in intensity when I blink or roll my eyes. They become unnoticeable in bright light.

This is, in all probability, not the cause of the kaleidoscope patterns, but they occur when you take psychedelics. In my pot-smoking days, I loved them. The stronger the dose, the small and more numerous the patterns. It's the brain doing its thing and it wears off after a few hours.

I also see patterns when I play too many match-three type video games. I dream of those patterns too. No spiders, thank goodness!