Hello all I am wondering if any of your loved ones are having hallucinations my Charlie has to see things that are just not there. He has had MSA for ten years. He can no longer stand or walk, I even had to get an home aid. Anyone have any advice?
Marge
Hi Marge,
I don't have much to offer, just to say that every so many months over the past few years others have inquired about psychosis &/or hallucinations, and inevitably a member with clinical or other expert background says "hallucinations are not a symptom of PSP/CBD - are you sure your spouse doesn't have LBD?"
Still - there’s always a new inquiry about hallucinations... Try the historical posts - you’re not alone. XX
Anne G.
Yes a few times only not often, one was possibly linked to an infection. X
Hi Marg52, my husband had PSP for 8 years, he died October '18, and from what I have read and also straight from the mouths of the medical people, hallucinations are rare in this illness. However, my husband hallucinated from very early on in the illness, not induced by drugs or infection. He saw spiders, snakes, gorillas, polar bears, elephants, small children etc. It was like living in a zoo. I just went along with it even leading out of the room and elephant on one occasion at R's insistence. Now, none of this ever frightened him so as agreed with his neurologist drug treatment was resisted. During his final year his behaviour became unmanageable at times and against my better judgement he was put on an extremely low dose of antipsychotics - that I am sad to say was the beginning of the end for him but I won't go into that. I have posted on here before that I firmly believe that there can be an overlap of neurological illness and whilst my husband displayed symptoms of PSP leading to his 'probable' diagnosis, he also displayed symptoms of Lewybody dementia from what I had researched. All this said, if Charlie's hallucinations are a new thing then best get him checked for infection or whether it could be due to perhaps a new drugs regime. These illnesses are relentless and always seem to come up with yet another symptom to throw into the mix. Wishing you strength to keep on keeping on. Hils.
Hi Marge,
Please check out for infection if Charlie has hallucinations. My husband has PSP for over 6 years. He was having hallucinations for over 10 days. I thought his PSP had advanced and this was a symptom of PSP. Turned out it was advanced state of pneumonia. He is hospitalised for almost a month. He has been on the ventilator for over 3 weeks.
He had walked into Emergency, now I have to take him on a stretcher.
So please hurry and have Charlie checked up for infection
Larry has had hallucinations and delusions. He still knows the hallucinations aren’t real. The delusions he believes. As other are mentioning it could be a symptom of an infection. Have him checked out.
Dad had hallucinations off an on. I know one time it was medicine induced. Early in Dx doctor kept upping the Sinemet dosage and a drug called Rasagiline. Other times later on it was not medicine or infection. He had some very vivid hallucinations.
Ron
Hi Marge
My husband had hallucinations and it was caused by a reaction to medication he was receiving in hospital.
If you check if there is any new medication being given perhaps this is not the one for him.
Opiates were the problem with Les.
It's just an idea as I realised he hallucinated on these but they were for pain following surgery on his back. It may be worth looking into.
Love and hugs
Pat
Hi, my mom that passed in September 2018 with psp had a few hallucinations, cat, snakes, stairs, would get mad at me because I wouldn’t take her upstairs or downstairs whichever she wanted that day. She didn’t have stairs had never had any stairs in her whole life! This wasn’t all the time just a few times in the last 4-6 months. NO infections or meds!
Love Alli
Hello Marge, have just looked at your profile and see that MSA may be a new diagnosis following on from PSP.
There are few posts here from people living with MSA, but I searched for the topic and came up with several posts and blogspots that could be helpful, one documenting life with MSA in Africa.
Since being on this site, I understand that no single group of letters seems to define any one experience of what can be called Prime of Life Brain diseases.
And that they are so rare that it is difficult to find a specialist who understands everything! Research into the knowledge is always ongoing.
You may find others who have also experienced hallucinations. I would agree that they might be related to a specific drug, or an infection, so check it all out.
My husband had what a neurologist thought could be CBD but brain autopsy was not done. He had the odd hallucination which I think was related to infection, or was the result of confusion due to changes in his ability to think and plan logically.
I wish you well on your aweful journey with Charlie.
Kia kaha! Stay strong!!
Hugs
Jen xxx
Hi Marg, my brother in his 9th year psp, he only had hallucinations once caused by medication, there are a few things that can cause that, Levy body dementia, sleep deprivation, infection, some brain conditions, and gosh probably other things, sorry that is happening, hopefully you will find out, take care. Nettie
Yes. These always coincided with a UTI. I believe confusion and hallucinations can indeed be symptoms of UTIs, which can be easily diagnosed and cleared up. Good luck, Amanda.
My husband has PSP and has seen cars and trucks in our bedroom and woke me up to tell me about them,he remembers everything in the morning.lately he has been picking things in the air and putting them in (air) piles.
Dee
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