About two years ago, I went for my annual eye exam with my Neuro- Ophthalmologist. I see this specialist because I had a serious head injury when I was a young woman, which left me with 4th Nerve Palsy in my right eye.
At this appointment, I was also told that I had developed Macular Degeneration in my left eye. I had wondered why my vision was deteriorating with extreme blurriness and double vision, and now I knew.
About a month later I began to experience terrifying things after going to bed. I was seeing things that were not really there. The only person I told was Tim. I didn’t even tell my doctor at first. I was so afraid that I had dementia!
The very first night that this happened to me, I saw three grotesque monstrous heads floating near the bed. I yelled for Tim and then I began to command these horrid images to leave in the Name of Jesus! I know this sounds nuts, but feel so strongly that the Lord wants me to tell about these things because it may help others.
Another night I saw a cartoon of Winnie the Pooh (you’ll laugh at this) throwing a football to Tigger! And where did I see this? On the lampshade on the night table!
Some nights I would get up to go to the bathroom and I would see (I thought) our dog, Sadie, laying on the floor at the foot of the bed. I bent down to touch her and she was not there! She was in her bed in the living room where she always slept.
I also saw a grid-like pattern of green dots all over the bathroom walls. I wondered if I was losing my mind, but then I would pray that the Lord protect me and that He would help me find out why these things were happening.
CHARLES BONNET SYNDROME
In my determination to gather information from the internet which might help me understand what was happening to me, the Lord led me to a website all about hallucinations in people who are gradually losing their eyesight.
The website explained what happens with Charles Bonnet and the words were so reassuring that I did not have dementia.
THE DIAGNOSIS
I made an appointment with my neurologist. I see her mainly for my seizures which I got after the head injury. As a matter of fact, I am scheduled tomorrow for an EEG which she does on me annually. She diagnosed me with Charles Bonnet. Many doctors do not know about this syndrome. I’m so blessed that she knew all about it.
I will be posting two videos in which people who are very familiar with Charles Bonnet Syndrome explain far better than I ever could about this syndrome – WHY it happens to many who are losing their vision.
The first is Judith Potts whose mother had CBS (Charles Bonnet) and who went on to direct a Foundation to educate the public about CBS. She named it after her mother – Esme’s Umbrella
The second (my favorite) is a ‘Ted Talk’ by Dr. Oliver Sacks. It is only 18 minutes long and packed with great information.
Brethren, the reason I felt compelled to share my story with you is that I wondered (in horror) about just how many elderly people have been placed into nursing homes because their families were convinced that their loved ones were completely crazy!?
I hope that many will share this post!
COME LORD JESUS!
I’ve watched both video’s and my question is that neither said anything about is – what can be done about it? They are making us aware, as you have, but is there no solution, treatment? I am sharing this but I think others might want to know the answer, if there is one.
There are only things that I can do during the hallucinations, like blinking my eyes or looking side to side to make the images go away. Like I did with what I thought was Sadie (our Golden) I reached out to touch her and the image went away.
I am making people aware so that if they are struggling with this or an older member of their family whose sight is failing and they are hallucinating, they can be assured that they are not losing their minds!!! This should give hope to people and to their families!!
Don’t worry about praying about this. Tim and I are praying and God hears our prayers and answers them. I am BLESSED to have a diagnosis. Can you imagine what I felt like before doctors diagnosed me??? I did think that I was losing my mind and that I had severe dementia. Perhaps you cannot understand because you have not gone through this. But please – allow others who are struggling with Charles Bonnet to have joy in knowing that this happens to many people whose eyesight is failing them, and that they are not losing their minds.
Sue, unfortunately there is no cure for this at this time. Doctors can only offer tools to help me deal with this such as blinking – turning away – looking side to side – turning more lights on in the bedroom – things like that.
If you watched the second video (the doctor) he DOES give the reason why this happens – brilliantly! It all has to do with the brain and how it (the brain) is ‘starved’, if you will, of images (because of the lack of visual images – and begins to project its own images from memory. The Doctor articulates this much better than I can in his video.
I seem to have this in my later years. No, not dreams but seeing faces or objects at night sometimes. I too blink or place my thoughts on other things and go back to sleep. I too call on The Lord to take it away when it seems to be ugly faces. It goes away. This was an eye opener.
I have trouble with my sight but, this may sound weird but, I see fine to get around. My sight is bad with driving so I do not drive. I am 80 & 1/2. I function so I keep going.
I stopped driving about a year ago because of my vision. It is really awful. The seeing double all of the time is very hard. As far as seeing things (faces, etc) that I know are NOT there – I am dealing with it as best I can. I’m glad I am to a point where I can giggle and just look away. I know these things are not real so I’m not ‘delusional.’ If I thought they were real THEN I really have a problem!! lol I’m blessed that I have a diagnosis. I must say that I am quite hurt at how some brothers and sisters in Christ are responding to my syndrome. They don’t believe in my diagnosis. I guess they would rather believe that it’s demons……
I’m sure you are so relieved that you have a diagnosis now!! Praise God! Charles Bonnet Syndrome hits those with vision loss; glaucoma, cataracts, diabetic retinopathy… etc. Yes! I think your closed head injury as a young woman was probably the root of your symptoms. I have only had a handful of patients over the years with this syndrome. I would have been freaking out thinking I may be getting dementia too; since patients with dementia can present with visual hallucinations. My father had Alzheimer’s! He was only 71 when he died. It was so very devastating for my siblings and I. At the end he didn’t even know who we were. My mom died of cancer before my dad. At least with my mom; she knew who we were until the very end. They both loved Jesus and are with our Saviour now! That’s what makes it bearable!! 🙂 It is very sad if anyone is questioning your symptoms! Definitely NOT demons.
On a happier note; aren’t golden retrievers the best!! We had a golden retriever named Zach that died at 10 from cancer. We presently have a golden retriever named Jack that will be turning 15 in May. He is declining, but still so very sweet. My husband and I are hoping that our pets will be in heaven with us. Of course God will figure that all out! We know for one thing, no more tears in heaven!!! 🙂 Come quickly Lord Jesus!! God bless you!! Thank you for all your posts!
Nancy, thank you for your kindness and for not questioning my diagnosis. I would never make this up.