PSP Association
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Hallucinations and PSP?

Hi everyone. I am a caregiver for my dad who was diagnosed with PSP 6 years ago. We live in the US and my dad recently started hallucinating (talking to people who weren't there, reaching for things in the air, seeing things on the walls or floor, etc). He was admitted to the hospital and they ran all imaging and tests which were normal so they are saying it is delirium associated with PSP. Has anyone experienced this with a loved one? They started him in an antipsychotic medication, Seroquel.

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So sorry for your troubles, Lisamarie. My guy hasn't had anything like that, or not to that extent, but sometimes does have trouble separating dreams from reality. I hope the seroquel helps. Hang in there. Love and peace, Easterncedar

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There was recently a discussion about that. I believe I said that my husband was not having full blown seeing things or talking to things. but he would try to sleepwalk. And talk in his sleep and I think it was early fall or maybe Summer we had this very conversation on this site...you might check on old posts. In fact I just read where Seroquel worked very well.

Good luck

AVB

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How can we find previous discussion on hallucination and Seroquel subject? Thanks.

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Type seroquel into the search bar top right corner of this page. :)

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Hi, if ur dad is having hallucinations after 6 years of diagnosis, it seems it's probably a slowly progressive variant.. And it is common for pts to develop such hallucinations.. Just try calming them down and don't argue. Support is all that can help in such situations.

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Hi Lisa, my husband also was diagnosed 6 yrs ago with psp and six months ago he started hallucinating badly by looking at me in such terror, crying and shaking with screams even though he can't speak but when crying and screaming those noises come out. We ask him yes and no questions and he will nod his head for no side to side barely and for yes he opens his mouth as he can even move his fingers to use as jestures for yes n no. He hated me he couldn't even stand to look at me was very hurtful to think that he was thinking whatever it was that was so bad about me, i was always in tears just hurting cause of what he was goung through his mind about me. But one day he did the same hallucinating episode (i called them) to his favorite caregiver then to our daughter at that point i realized it's not me that he really can't control what is going on. So i decided 45 days ago to take him off of a depression med that he had been taking for 4 yrs called Prestique and three weeks ago it all stopped. Plus he takes and has been taking Nuedexta which is a med prescribed ever since diagnosed with psp that helps with alertness, crying and laughing that med is something i think all psp sufferes should defintely have it works great. So so much more to the hullucinations and angry bout, but just wanted share. I wish you the best with your dad. Please feel free to ask me anything and anytime bout my experience with my husbands psp progession. Take care.

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Our neurologist has been asking if C has hallucinations since a fewmonths after initial diagnosis in March 2013. As far as I know he doesn't, or hasn't yet. However, he has also been taking Seroquel as a sleep medication for over two years now and it works, maybe it is also suppressing hallucinations?

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I have heard/read about hallucinations developing in some cases further into the disease progression, but my husband had hallucinations as a side effect of one of his meds. We were giving him Atropine drops under his tongue to help with the excess saliva, and at the higher doses, he started hallucinating. We dropped his dosage and the hallucinations cleared up fairly quickly.

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Dear Sawa,

As far as I know, sage tea, pineapple juice and black grapes deacrease excess saliva in psp patients

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Hi Sawa, My husband is into his 8th year with this dreaded illness, P.S.P, he too was given Atropine eye drops to stop drooling, he too had major hallucinations, was in hospital for 3 days from it, he also has had hallucinations, from M.S.Contin, and Lyrica, Sinemet caused massive spasms. It is amazing the side effects from some meds. Cheers Marg H

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Have you eliminated the possibility of a urinary infection?

It was what caused these symptoms in my husband.

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My mum had this recently. I don't suppose you've started using the patches that go behind the ear to prevent drooling have you? That's what caused it for my mum, literally came on overnight and went away again the moment they stopped using them.

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No we haven't used the patches. That is really interesting. I'm glad your mum is improved after stopping the med.

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The only time Brian had hallucinations was when he was using the hyoscine patches. It did take a couple of days to get out of his system but hasn't had any since we stopped the patches. Janexx

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Dear Lisamarie,

Sorty for your dad.

Has he took any medications? Some medications give rise to this kind of side effect for some Psp patients

I heard that Seroquel helps hallucination

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I can relate. My husband has been told he as CBD since last summer. On Oct. 10 this year he started to not recognize me as his wife or our home as his home. It is so painful for me and I am trying to keep him focused. However, I see little results. He is also on seraquil and at first it seemed to help but he as regressed the past week. He thinks I am a helper and he sees others as well. I am heartbroken and I don't know how to handle this. Doctor tells me to just go along and let him believe whatever he says. I have a hard time doing that and so we often get mixed up in an argument. He has lost all feeling for me as his wife, although is very armorous to this helper and I feel as if he is betraying me. He will start something and then act scared and say, no no my wife will come in and see us, etc.

HELP please.

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Hi, my Father has had PSP for 8 years. He has very similar symptoms and often does what we call painting on the ceiling, with the back of his hand. I have never thought of them as hallucinations but I guess they are. My guess is they are due to exhaustion as he always has broken sleep.

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Hello Lisamarie,

Yes my brother definitely had hallucinations and the time scale seems the same. He was in a Nursing Home and quite scared the carer by what he was convinced was real.

I am not sure what they gave him if anything but it was only occasionally he told me including seeing our parents in the room.

Love

Pollyannajo

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Pollyannajo, My husband had hallucinations of seeing his Dad too, he has been gone for 40 odd years, this illness is a shocker

Cheers MargH

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My husband does this when he 'cat naps' it can get really elaborate. When I ask "are you awake" he usually comes out of it.

He has wound string, looked for stuff in the freezer and wondered why it was warm ( that would be because it was me!) buttered a scone...all sorts.

We have child locks on the car as he sometimes tries to open the doors! He doesn't sit behind the driver, either, because he leant forward and pulled my son in laws hoodie strings!

He does have frontal lobe damage, and I know that there is a form of dementia called lewey bodies, that is associated with that area of the brain and involves hallucinations. I think that is what they say Robin Williams had. I suppose it depends which parts the tau protein in PSP is being deposited.

We decided not to go for meds as he couldn't have his sleeping tablet if he took them, and he can't sleep without that.

The joys of PSP. We try to laugh it off, I once got smacked in the face when he was 'playing rugby' mmm, very convenient if I had been annoying..( only joking )

I hope this helps x

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Hello... My dad had the same issue with hallucitions about 2 years ago. He was hospitalized and was put on depako and seruequel and it has helpled, some times dad will reach for things that are not there but dad is in last stages of PSP. He is mostly bed bound and doesn't talk much. Healso just had a GJ feeding tube placed 4 weeks ago. We have had so many problems with the J section cloged. Also elderly should not more than 12.5 mg of serequel and they never found out why dad was hallucinating said it was most likely due to PSP. Hope this inf. helps, take care.

Mconnie

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My husband started out with see people who weren't there. At first it did startle him, then after he got used to it, he expected to see people. The hallucinations changed to animals, then to bugs (those bothered him the most because usually they were crawling on him.) now occasionally he sees shapes. Our neuro. was not surprised he had hallucinations, although he did ask if the people looked different. My husband said they were all small. Not sure what significance that brought into the picture. He wasn't on any medication that would have caused those at the time. Our first Neuro. said the hallucinations were a result of his brain dying. I never told my husband that part. Although at first the images were very starting, to B, he always knew they really were not there. It seems there are all sorts of not so fun things attached to PSP. I hope the medication helps your dad.

We are also in the U.S. - Missouri.

Lynn O

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Hi my husband has had several episodes of this in the last few months seeing and speaking to people who are not there or have died years ago.he also pulls a his covers and keeps touching my arm.It usually starts when he is coming down with an infection.

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My husband had dreadful hallucinations soon after diagnosis but after 6 months, when he came off medication to reduce saliva, they stopped immediately and never returned. Check the side effects of any medication he is on.

X

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Thank God for this group! You have made my mom and I feel SO much better. We now know we are not alone in this battle and my dad's symptoms are common is so many of your loved ones. Thank you from the bottom of my heart. Hugs and prayers to all of you. Lisa...Charleston, SC, USA

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Totally agree Lisamarie30, this group is amazing, helps so so much. Hugs to everyone here, it definately helps to know that we are all experiencing similar things

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Hallucinations seem to be common with PSP. My wife has them frequently and is so stubborn (another common trait with PSP). But when they are most severe, she's often had a UTI. I bought my own urinalysis test strips so I can check her urine without running it over to her doctor all the time.

Ketchupman

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My mother had hallucinations when we increased her sinemet. This was a common side effect from the med. She had nightmares of my father (who was her biggest fan) doing terrible things to her. We decreased the meds and she had a nightlight from then on as she was afraid to be in the dark.

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Hi Sugardart, My hubby had sinemet and had massive spasms from it, also has a Salt Lamp at night which helps too as he doesn't like to be totally in the dark, having said that he has to have the room darkish as his eyes hurt from the light

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my mum used to say she could see cats in her room but it did not seem to bother her unduly

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Saw this post belatedly. You may have since found the answer in your dad's case. If so, others may find this caution useful.

In classic PSP, the most common cause of hallucinations is one or more meds prescribed by doctors who know little or nothing about PSP. And anti-psychotics are in most cases among the worst adverse-side-effects offenders. Neurologists who are the most experienced and knowledgeable about PSP refrain from prescribing ANY meds whatsoever (as in my late wife's case). In fact, she once popped a single minimum-dose ambien, widely considered "the safest sleep aid" out there, and within minutes, it launched her into 24 hours of hallucinations.

Also, hospices here in Virginia (and elsewhere in the country) as of about 2007, were instructed to dispose of all haldol and other anti-psychotics from emergency "comfort kits" stored in the refrigerator for PSP patients.

Hopefully, your dad is doing as well as can be since then. Was he referred for a second opinion to a PSP-aware neurologist at a major medical center? Dr. Stephen Reich and his team at Johns Hopkins in Baltimore confirmed the original diagnosis for us. Confirmed years later in autopsy of her brain tissue at the Mayo brain center in Florida.

All the best, ChristianEd58

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Is the medication working?

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Hi Lisamarie. My husband has psp and terrible hallcinations but it isn't listed in usual symptoms. There are five imaginary people in his room every night and he sees writing and images on walls.

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