Hi Everyone, been absent for awhile and just wanted to check back and say Hi.
Seems like every time I go to the neurologist I get my meds changed, but I'm hoping this next time he will not change anything. I'm doing good on the current regimen.
One thing that really spooks me a little is that I believe I'm have Hallucinations. Here are some examples......
I was sitting on my bed with one of my granddaughters (Jayna) watching television. Out of the corner of my left eye I see one of my kittens coming up on Jayna's side of the bed. I said to her "Is the cat bothering you?". She looks at me and says "What cat?" I look and he's not there and I look over at a chair in the room and there are my two kittens cuddled together on the chair fast asleep.
Another time I saw my Granddaughter eating a banana and I said to her...."I love my banana's dipped in chocolate syrup." "Would you like some Hershey's syrup to go with your banana?" Turns out she didn't have a banana at all. It was an Ice Cream Sandwich.
I have had at least 3 of this kind of hallucination in the last 3 months, maybe more because I don't recognize them as hallucinations.
Weird huh!
Written by
TheresaCurley
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Good to hear from you, TeresaCurley! I have not yet had visual hallucinations, but have had some auditory ones, where I swear there is a radio playing, with some kind of sports show in the background. What I understand is that the hallucinations with PD are not scary, and are actually often pleasant. As long as they are benign, I would be willing to live with them and not worry too much. Seeing a kitty or a grandchild eating a banana would be pretty benign, sort of like hearing the radio that is not there. Or that would be my approach. I hope your doc appointment goes well. No change in meds would suit me just fine. Take good care!
My husband was having hallucinations with his PD and they were of bugs crawling all over him, also saw a lot of cats and Lion. So not very pleasant. They put him on anti physcotic and had him stop his Amantidine which he had been taking for years with no problem, I don't think it had anything to do with it but whatever. He was able to wean off the meds they gave him and is ok now.
Glad to hear he is better, arwenmark. My understanding is that Amantadine can cause troubling hallucinations, but I also am not sure why it would happen at this time. At any rate, he is toff the meds, and doing better. I wish him (and you) well.
Bloating and gas vs continued deterioration of symptoms (increased tremor, worse sleep, constipation etc.). If it has no impact on your symptoms then fine, but otherwise its a no-brainer. As far as I can see it for some people Mannitol might be the best supplement bar none.
I get some gas, but regard it as a very small price to pay.
I get the “radio” hallucinations too. When 1st diagnosed I kept hearing ABBA singing The Dancing Queen. It wasn’t a memory of the song; I actually heard ABBA singing, with musical accompaniment. I thought it hilarious at the time, and experienced it as a comment, coming from somewhere in the back of my head, on my increasingly severe tremors.
The hallucinations have not bothered me any. They are very benign, in fact they have always been something pleasant. I take so many pills I don't want to add anything unless I absolutely have to.
Look up my story on use of high dose niacin for hallucinations. Or google the subject and dr. Abram hoffner’s work on it. 100% successful for my husband who had them for months until he took niacin. His always started with digs in the corner though! Guess he wasn’t a ‘cat’ man.😼
I started taking Niacin about a month ago and have felt so much better. I didn't think it was for hallucinations, but now that you mention it, I haven't had any in quite a while. It has made me happier, more focused, less confused, less tired. If you get some, take it first thing in the morning though, otherwise you could have trouble sleeping.
So happy you got relief. Hoffner dosed with 1000mg 3x daily. One would need to start low, say 100mg 3x and then work up to the point where they stop. Niacin expands the capillaries (why its used to lower the effect of clogged arteries) and often results on what is referred to a ‘niacin flush’. That just means that shortly after taking it, you feel something like a sunburn. This reaction varies with individuals. My husband NEVER experienced it but I did while taking it for cholesterol so all I needed was about 250mg 3x but I didn’t use it on myself for hallucinations.
Hi, Theresa. I haven't had any yet. Maybe they will go away for you. My doctor gave a talk on a new drug that helps hallucinations at a recent support group meeting. The drug dealer was there too. I think they are looking out for people who have them right now.
Dear Teresa , i am so glad to hear from you. I was concerned that something had happened to you. I have missed your posts. Please keep in touch with everyone. It's nice to hear about your grandchildren . From another Nana. Diane J.
Teresa, Hmm, Ice cream sandwich confused with a banana,,,,,,,,No. great worry there. Now if you had seen it as a watermelon,,,,,,,,. It's good to see you posting again. As for the perceived illusions/hallucinations,I find some of them quite entertaining. Here's wishing you well.
I have missed all you folks. I don't know why I stayed away for so long. Summer was horrible. I had to babysit all my 5 grandchildren when school was out because my son could not afford child care this summer. Though I love my grandbabies it was absolute hell to have them here 5 days a week. Then just last month my sister died suddenly. She wasn't sick and she was very active so it was a real shock. She had some kind of attack and could not breath and she died the next day in the ICU. Her daughters either don't know what actually happened or are just not talking about it. Either way they are entitled to their privacy. I find that I'm still in denial. I just can't believe she is not here anymore, though logically I know it's true.
I just visited a new, upcoming star neurological surgeon last week. As I hadn't met him before I decided not to ask him how long he'd been out of short trousers. He was interviewing me for DBS & one of his questions was
'Do you have hallucinations?' I told him I had recently started & he asked for examples. Mine were pretty much like many on this site. I see things on the periphery of my vision, things writhing like snakes from pictures of flowers, things changing form. He discounted all of these & said that they have a medical term for them but NOT hallucinations. Likewise my vivid dreams. I dream in glorious technicolour but mostly positive. When I had a breakdown in the 1990s I had 'night terrors' & he said that was vivid dreaming. Just a small change of emphasis in wording can produce a major shift in understanding it seems.
Hello Theresa, Frirst off I am very sorry you lost your beloved sister, I only have one and couldn’t even imagine losing her. I am fairly new to the site and was just told in November that I have PD. I was put on Amantadine 100 MG three daily and I started having hallucinations in early December . They are both visual and auditory in nature, also I have started screaming and thrashing in my sleep. I will have to discuss these issues with my Neurologist , but I am thankful that I can connect with others in my situation. Please have a wonderful Christmas and a very Happy New Year.
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