Paranoia

[Denisejoy1]

Hi everyone, I recently saw and commented on a post about hallucinations, well since then it has got worse for my poor Mum. Her strong hallucinations and beliefs have manifested in psychotic paranoia. She genuinely believes very distressing and disturbing thoughts. Her consultant has said it’s not unheard of in PSP but is rare. Poor mum, a rare disease, a global pandemic restricting visits and now a rare symptom. Her medication has been increased and she seems calmer, but I wondered how ‘rare’ this really is. Does anyone else have experience of psychotic paranoia?

Thanks & love to you all

Denise

[AliBee1]

Dear Denise. I am so sorry to hear about your Mum. It must be very distressing for you as well as for her. Have you phoned the PSPA helpline about this as they will be able to help you more than anyone else. I don't know if you are in the UK or not. Has her doctor suggested that there may be something else going on as well as the PSP, such as a form of dementia, as I know that that is often the case. It might be worth asking. I am sorry that I cannot be of more help but just wanted you to know that we are all with you even if only in spirit. Big virtual hug. AliBee

[Hidden]

I too have read some posts about hallucinations on this site. Try searching some of the older posts as they are very informative on many topics. PSP & covid19 are disastrous when mixed together. My heart goes out to you both! Mom never had hallucinations so l cannot share any personal experiences but l do remember some folks wrote the hallucinations started when a new medicine was prescribed. Sending hugs... Granni B

[Hidden]

Larry experienced a little delusion and hallucinations but he usually knew they weren’t real or would believe me when I told him they weren’t real. Your mom sounds like she thinks they are real. Nothing to do but try to comfort her and see about medication for treatment. This could be an episode that passes. That happens as well.

[Denisejoy1 in reply to Hidden]

She believes them to be real and usually the subject of her being burnt or executed so very distressing. Her consultant knew straight away so I wondered how common it really is. PSP sometimes feels like a poor relation to other diseases that have so much more proactive support . Anyway, we carry on regardless.

Best wishes

Denise

[Caro2132 in reply to Denisejoy1]

Mike has had hallucinations but the people he sees are not threatening, he just wonders who they are and why they’re here. He doesn’t talk about them much these days so I don’t know if he still sees them.

[Aurala in reply to Caro2132]

My husbands initial hallucinations weren’t apparent at first but he told me about them, referring to them as such and they weren’t threatening , but scary. Later on, he began having more disturbing ones which were apparent because he became agitated and , at times aggressive. He’d get delusional ( had to get to work from which he’d been retired). He was hospitalized and psychiatry believed it was dementia and that the brain was dying and the situation would only get worse. He was given a lot of psychiatric meds and since they couldn’t seem to get it under control, released him . He would calm down with the meds for a couple of hours at best, but was so drugged . After about a week at home the hallucinations subsided( fewer and less apparent), gradually reduced the meds and eventually they went away. He is definitely alert and with it again. Still can’t figure it. The chaos during that period was indescribable. It lasted from February through April, I’d say. Neurology did not take the lead in the hospital despite my pleas, it was psychiatry. A neurology consultation after he came home from the hospital, encouraged ( actually insisted) on decreasing the psychiatric meds). Maes it very difficult to trust the doctors.

Wishing you luck and hoping that your mother gets some relief.

[Denisejoy1]

This sounds very similar. Mum’s disturbed thinking is always very negative and anxious. For example she believes she is looking after 4 babies and has lost them all, or that she is hiding a 10 year old boy and they will both be shot if he is discovered. She genuinely believes it and becomes distressed and recently has been very aggressive to the care staff, I guess because she believes they are going to hurt her. The neurology consultant has said we are aiming for cognitive serenity and has upped her meds, introducing an anti-psychotic if needed. She is in the late stages of PSP but also 85 years old so perhaps there is a mixed picture with dementia. Poor love, I am not unhappy if the meds sedate her a bit as she is really able to enjoy a good quality of life so I would prefer she is relaxed and not suffering.

Just when I thought it couldn’t get any worse......

[easterncedar]

I can only imagine how terrible this is for you and your mother. My guy had hallucinations and confusion is all, but there have been reports on this site of severe character changes and dementia. The awful fact is that just having psp doesn't mean a person can't get something else, too. One poor soul in NYC was the sole carer for her husband who eventually didn't recognize her at all and became aggressive and angry. She said she couldn't afford to have him in care, even if there was a place that would accept him. I was afraid for her. She just stopped posting here. The health care safety net in the US is a myth.

[Denisejoy1 in reply to easterncedar]

Oh goodness, that sounds terrible. At least in the UK we don’t have to worry about funding our healthcare directly as that would probably push me over the edge!

[Baytalon in reply to easterncedar]

Yes it is a myth...even with insurance. I worry about how I will manage as my husband's decline continues. I could never afford in-patient care, even if there was some place in our area. I have hospice, but their care is limited to a visit with a nurse weekly and home aides who help him shower twice a week. I don't know what I'll do down the road. I will have to try to hire some aides for additional in home care as best I can afford it.

[Baytalon]

My guy had hallucinations. At first, they were or people outside the house....then he thought he saw people in the house. Sometimes they were people he knew...but then they became strangers. I became frightened when he was rummaging looking for a gun. (The only gun he had was a rifle and I long since removed it) Hospice prescribed Seroquel which is usually prescribed for schizophrenia, but is used for hallucinations in later stage PSP patients. He's not had an issue with hallucinations since we got the dosage adjusted (upped from 25 mg to 50 mg) and he no longer has fitful dreams.

[Denisejoy1 in reply to Baytalon]

Thank you, that is helpful as mum has been prescribed the same medicine. She seems a bit calmer this week. Thank you for sharing your experience, I know how painful it is. Take care x

[Bipa]

Denise, my husband experienced hallucinations. It was extremely bad until his doctor prescribed risperidone, an anti psychotic drug. Took a little adjustment as to dose and doctor made the changes. He didn’t guarantee that it will work forever but thus far my husband has been great for three months.

I feel for you and your mother.

Take good care and stay safe💕

[Denisejoy1 in reply to Bipa]

Thank you for sharing your experiences. It is so helpful to read other peoples advice and insight as this is such a difficult time.

With best wishes to you and your husband too.

Denise x

[Ocdmanuk]

Your mum seems like wonderfull women reminds me of my grandmother prayers to you and your mum that she able to receive the help she needs

[Denisejoy1 in reply to Ocdmanuk]

Thank you, your kind words have made me smile x