dreaming or hallucinating?

[Pinkcamelia]

My husband has psp. I’m trying to figure out if he is dreaming or hallucinating. When he is asleep, sometimes he does hand movements, calls out the strangest of things. His voice is bearly a whisper in the daytime. Yet at night he can call out extremely loud that it startles me. He also and makes really strange noises. Could this be the psp progressing.

[Sun-flowerwearer]

Hi

My husband sleeps most of the time but he’s constantly moving his arms up into the air or twitching and his mouth moves as if he’s talking but he doesn’t make any sound. I have read lots of threads that say their loved ones constantly and mumble away . My husband is noiseless but I do think it’s yet another symptom of PSP.

[Pinkcamelia in reply to Sun-flowerwearer]

My husband sleeps a lot too. His voice changed dramatically yesterday. So many symptoms with this condition

[Bergenser]

I recognise this, my husband moves and talks loudly - and sometimes has wide open eyes - during sleeping / dreaming. Sometimes this can become frightening eg when he seems to act out running or fighting - and might grab my hair or my throat while kicking or punching. I believe this is REM sleep behavior disorder (RBD) which occurs in many PSP patients. (14-33% according to CurePSP summary article). This started before his PSP diagnosis (as did other sleep disturbances). I suppose it's "just another symptom" that could occur sooner or later. Melatonin seems to be generally recommended/tolerated to address these issues. Personally I try to ensure that if we watch television in the evening, that it's not something overly intense or aggressive; the dreams seem more pleasant after listening to music or watching something funny, gentle and calm.

Take care 🫂🌻

[Pinkcamelia in reply to Bergenser]

Thank you.

Seems your having it worse than we are.

Take care too xx

[Bertieandpiper]

Hi Pinkcamelia

Is your husband taking any medication like Madopar? My husband has PSP but is still taking this following his previous diagnosis of Parkinson’s. Just recently he has become very fatigued and is going to bed in the late afternoon and sleeping so may miss his last dose of this medication, however I have found that he is sleeping much better, with no episodes of loud shouting or vivid dreams, which were occurring every night usually between 11pm-1am. I’m not sure if it’s coincidence, but plan to discuss with the specialist nurse at his up coming appointment.

Best wishes x

[Bergenser in reply to Bertieandpiper]

Echo this - my husband has recently reduced Co-careldopa (Sinemet, similar to Madopar) and no longer takes a slow release dose overnight - his sleep has become more restful since this medication change. We also give his Citalopram (mild antidepressant) in the evening now (the prescription said every morning so we had to check) and find this improves his sleep. But there are still episodes of intense movement and shouting in his sleep, it doesn't seem to bother him, just me. 🌻

[Pinkcamelia in reply to Bertieandpiper]

Thank you for your reply. He is only on medication for blood pressure/cholesterol. Also inhalers for emphysema. But has been on those for years. No medication at all for the PSP. A couple of weeks ago he had a water infection. But seemed to get over that seemingly well.

Saw consultant on the 14th of this month. Not sue now until November.

Thank you for advice x

[Bergenser in reply to Pinkcamelia]

So - my husband is also on blood pressure medication, and had been taking simvastatin for cholesterol for many years. He had to come off the simvastatin when taking antibiotics for a finger infection. At a recent medicine review we decided to stay off the statins to avoid future drug interactions. Statins were specifically mentioned in James Rowe's article about managing PSP - and the GP agreed that the long term benefit of managing cholesterol levels wasn't so relevant anymore. It's worth having the discussion about simplifying medication...🌻

[Pinkcamelia in reply to Bergenser]

My husband used to have Simvastatin. But when he was put on blood pressure medication they changed it to Artovastatin. Will try to get an appointment with the Gp.. it’s definitely something to consider.

[LuisRodicioRodicio]

Hi Pinkcamelia !!

These are our experiences and our information regarding the problem you pose:

Hallucinations and confusion:

Joluu wrote: “Episodes of confusion and hallucinations have been triggered by infections so my first thoughts are to get him checked by a doctor to make sure there's no infection.”

KatieHelles wrote: “My step-dad has PSP and does have the odd period of confusion thinking that he needs to go to work or play rugby (with some determination sometimes!). This can be part of the condition and passes in time, it can also for my step dad be more likely to happen when he’s tired and overdone things or unwell with a virus/infection so again always good to try and check whether this is happening in the back ground. The confusion usually passes within a few days in our case. General advice would be to go along with the confusion where possible we would call a friend sometimes and they would reassure my step dad that rugby was cancelled today so he didn’t need to get ready. This reduced his agitation a lot as telling him he doesn’t play anymore just increased his distress unnecessarily. Also having lots of familiar prompts around might help him in the home photos objects etc.”

45purple wrote: “Hopefully when settled he will not be as confused just have to remember at his age it’s a big change for him being moved and he won’t recognize the surroundings.”

Outbursts of laughter or crying:

“daddyt” point out: The outbursts of crying, or as in some cases, laughter, are known as the pseudobulbar effect. It's a symptom of CBD (S) and, in my case, PSP. Not all patients will experience it. I'm not aware of any specific medication, but I suspect depression medication might be helpful.

In our case (PSP) we did not have episodes of hallucinations but, at the beginning of the disease, we did have some difficulties sleeping. For 6.5 years and until his death, the doctor prescribed an antidepressant pill in the morning and a tranquilizer-anxiolytic at night, with very good results.

I hope these notes are useful to you.

Hug and luck.

Luis

[Pinkcamelia in reply to LuisRodicioRodicio]

So much to this condition..

Thank you for your reply