Psychosis and PSP

[DALLY123]

Hi everyone, This is my first post here.

My dad was diagnosed with PSP a few months ago after years of suffering with various symptoms and being misdiagnosed.

Me and my family were relieved (and incredibly upset) when the PSP diagnosis came. It was the missing piece of the puzzle. His symptoms made sense now and why things has happened as they did.

My dad's first symptoms, showed up about 6 years ago. These were subtle changes in personality that over the next year or so turned to severe psychosis and resulted in my dad being sectioned under the mental health act. From there it has been a long journey.

Has anyone else experienced psychosis with a family member suffering from PSP, as an initial symptom?

[RosieLadyDaisy]

Yes! Crazy episodes - crying and complaining all night re a pain in my husband’s leg . I went for a shower and when I came out realised it was very quiet. He had climbed out of the lounge window as front and back door were locked and walked to the hospital (leg was fine then??). Cut his back in doing so.

I have videos of lots of episodes of screaming/crying etc. Recently he misunderstood something, got in such a state that he started throwing things, then tried to grab the TV. He then turned on me throwing me on the sofa, sat on my head, pulling my hair and saying he was going to kill me. I managed to call the police who came quickly.

He was on anti-depressants while all these happened - they have now been stopped and I am wtg for a psychiatrist appt for him.

Life has changed immeasurably for both of us and I can’t imagine what the future holds.

[Leosta in reply to RosieLadyDaisy]

OMG, I'm so sorry to hear what you have gone through. My husband has accused me of sleeping with just about every male in the vicinity, but that's nothing to what you've been through. God bless you and keep strong.🙏💙

[lindaD_]

Yes,sadly My husband died in 2018 ,he did such strange things he would accuse me of having affairs with everyone ,that wasnt like him ,he was first diagnosed in 2012 with paranoia and severe depression and was in a mental health unit for 6 weeks after which time he had to go back think it was once a week ,,. He then had to go to a mental health clinic where after a few months said he needed a second opinion . He was diagnosed with psp .Dr cauld see straight away it was psp and he had several scans to confirm .we then had to see nhs dr at hospital ,who he had seen almost a year before and said he didnt have parkinsons this we had to wait for about 5 months because when he said it wasnt parkinsons case was closed ,so we had to start again.All of it is a very long struggle although you know its not their fault some of the things hurt so much.Take care of yourself you have my love,stay strong❤️

[Sadinvermont]

Yes, my ex-husband started seeing unexplained lights "in the hills" around his home, thinking that someone was going to come and turn his electricity off, but could not tell me why he thought that. He also seemed to be afraid to leave his house. He was only 64 at the time and he had a couple of bad urinary tract infections around that time so we thought it might be that. The unfortunate thing is that he ended up several times for periods of time in the psychiatric ward for being catatonic and/or frozen in his ability to walk. I had to beg to have a neurologist take a look at him since he was being treated by psychiatrists in the psych ward. It was complicated because I had no standing as I am an ex-wife and he could not speak for himself. It has been a nightmare, but he is on certain medications now that actually have made him better including Parkinson's type drugs and others so he can speak now. However, the antipsychotic that he was taking made it worse! It also complicated the diagnosis since he was having obvious movement disorder issues.

[LostinHeadSpace]

Hi Dally, I haven't been keeping up with the forum, but had to jump on since there was actually a solution to my husband's PSP hallucination episodes that looked psychotic. He would have full-on hallucinations with sounds, sights, the whole works, plus night terrors that were hard to get him out of. Someone I met on this forum clued us in to the possibility of being a medication reaction, and sure enough, that's what it turned out to be.

In particular, my husband reacts to medications which are processed in the liver using the CYP3A4 pathway, something that is easy to Google for each medication. But here's what made it hard to figure out--he would only react about 7-8 days after being on the medication! When he had a stomach infection (not directly related to the PSP) and they put him on two different antibiotics at the same time, he actually reacted so badly to the medications that he started to lose the ability to move completely that day, but it came back after the meds wore off (that included being hauled to the ER on a stretcher and having IVs all day).

He's also worse if he gets a UTI, but the only hallucination events he's had all correlated with a medication that used that pathway. We got him a med alert bracelet that has a QR code that goes to a web page that explains this. So the good news is that we've found something solvable with this particular symptom, but the bad news is that many medications do use this pathway! Sending you good wishes on figuring things out!

[Artybex in reply to LostinHeadSpace]

Thanks for sharing this. My mum was also sectioned and although she is a lot better now, she is still very suspicious of everyone and is quite neurotic. She completely rejects the fact she has psp.

Do you know if there is any literature about this that I can share with her GP?

Could something like her antipsychotic drugs or even paracetamol be affecting her?

[DaffodilPrimerose]

Yes, sadly many of us have experience of this with our PSP patients. It's the disease, not the patient. It's so important that safety is maintained for everyone and that the episodes are documented and relayed to medical professionals when they occur so appropriate medication reviews can take place.One of the saddest things for me was the waste of their precious speech on nonsense. My PSP person would get bursts of clear and perfect speech when this behaviour surfaced and then sadly when trying to communicate other important basic information at important times, speech was poor. Its just a mystery of this awful disease. As others have said, it was more prevalent during infection times (UTIs).

Stay safe, get the behaviour slowed down with the help of medical professionals and take care.