Has anyone experienced Charles Bonnet Syndrome with MS?
 

I have been experiencing vivid hallucinations for about a year - I've kept this problem a secret from all of my doctors and my spouse because I've been so concerned about what it might mean. I am fully aware that the visual hallucinations are not real - nevertheless, it's distressing.

I finally got up the courage to start looking for reasons for these hallucinations online and I stumbled across a link to Multiple Sclerosis and Charles Bonnet Syndrome, a condition wherein the patient is not suffering from psychosis, knows that the visions are not real, has visual impairment due to optic neuritis or a lesion on the brain affecting visual accuity. It has been reported in patients suffering from macular degeneration, multiple sclerosis, and a few other conditions. It is nevertheless quite rare.

Well, SNAP! Maybe I'm not crazy. Has anyone else experienced this problem? If so, how did you start the discussion with your doctor to try to make certain that you weren't stamped with a Crazy Person sticker immediately?

There was a longtime member of MS World forum who had visual and auditory hallucinations due to her MS. She was an extremely intelligent person, and had always had a very technical job in her career but with SPMS MS the symptoms included these and she often posted about it.

I'm glad you posted about this whoopdedeaux :hug:

I've heard of another syndrome, "Alice in Wonderland", that reminded me of hallucinations.

I occasionally have something occur that is like the "Alice in Wonderland syndrome". I don't have optic neuritis, or problems/lesion on the optic nerve. I am, however, a life-long migraine sufferer.

I'll see patterns on floors/walls/clothing etc 'shrink' together - kinda like when Alice drinks the potion and gets tiny, you know? Everything sucks in together.

At first I was just breathless and frightened when it happened, but now I know it's likely migraine, or perhaps the MS, doing it.

Not fun, but it's less scary I find when you can find documentation of it.

Had kind of the same thing dimples had. I was in the bathroom watching the hinges on the door slide down and get wavy.

I have seen things during a flare that I KNOW didnt happen and I KNOW were not there, but I never said a word to anyone. :eek:

Although it sounds awful to say that I'm glad to see others experiencing the same phenomena, it really does allow me to shrug off some of my worries. I've been so concerned about this for so long that I was really afraid to even Google for more info since I was afraid the end result would be, "You're bonkers. 'Nuf said".

The most interesting and reassuring site I found was an 18 minute lecture on the Syndrome by Oliver Sacks, the neurologist portrayed by Robin Williams in 'Awakening'. The system is telling me that I have too few posts on record and I cannot yet post links within my messages. If you are interested, go to ted.com and search for speaker Oliver Sacks. The lecture is entitled "What hallucination reveals about our mind".

dmplaura, I'm heading off now to look up Alice in Wonderland Syndrome. If I had a choice, I'd much rather fit into that dx just for the pleasure of watching the doc's face when I said, "I think I have....".

For what it's worth, Dejibo, Dr. Sacks stated in his online lecture that he believes as few as 1% of the people experiencing these "lucid hallucinations" ever tell anyone about it.

I intend to open up the discussion with my PRIMARY doctor next week, only because he's the one I trust the most right now. Nevertheless, I intend to go to the appointment with printed material about Charles Bonnet Syndrome so the appointment doesn't spin off into a psych exam referral.

i've not heard of this link to MS myself, but i know it doesn't make you crazy.
i would confide in your dr or check with an opthamologist.
there must be a physiological reason and it's not mental.

don't keep this to yourself. it may be a sign that you need to look for a cause.

Sometimes I wake up from dreams/sleep and see something. I try to pick it up and it's not there. I realize right away that I was hallucinating. I just laugh at myself and wake up more..:D

It would never occur to me to mention this to a Doc, unless it was happening a lot and during the day, when I was fully awake.:eek:

It seems like MS makes us more attuned to everything our brain does. These things are probably perfectly normal but we latch onto it as if we're going nuts... I don't think we are going nuts, we just have MS.:mad: