Hello everyone. I’ve posted a few times but never formally introduced myself to this amazing and compassionate group of caregivers and warriors.
I’ve had aPSP diagnosis for the last two years with symptoms at least two years prior. In the last year eight months or so I’ve developed a heightened reaction to sudden noises as well as becoming more sensitive to noise in general.
If there is a sudden, unexpected loud noise around me I will immediately stiffen and freeze. Then between fifteen seconds afterwards the muscles will begin to relax but I lose control over them and will slowly slump in the chair or if standing and don’t get to a chair, to the floor. It may take up to ten minutes to be mobile again and I’m quite tired afterwards. And there are occasions that after the muscles begin to relax, the core muscles will then begin to clench and release repeatedly.
Has anyone else experienced something like this? My neurologist at UCSF in the US. is very experienced and said that he will see five or six PSP patients a day when he is in clinic and has not ever encountered this.
Does anyone here have or are familiar with any similar experiences?
Thanks everyone. Blessings to all.
Written by
Burtz
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My father has PSP and is noise sensitive, he sometimes responds angrily if there is perception that someone is to blame, like someone slams a door. He was noise sensitive before his diagnosis orig in 2018. His legs also give way suddenly and he can fall to the floor in a controlled manner, however its not a reaction to the noise thing so I cannot help you. Stay safe though. Best wishes.
I don't have any experience with what you are describing but did you know there is a PSP forum very similar to this one that is US based? It's on smart patients.com, then join the PSP group. Someone on there may be able to help with this.
There is a certain seizure that can happen with PSP patients. So I wonder if the sound of noise triggers one? My loved on where she just has a blank stare and it normally last from 5 minutes to 15 minutes then when she is out of it she is very confused about what happened... we were told this was very rare but so is this disease. Best wishes
I found something that might help you. Look up Hyperekplexia. It may be what you are experiencing.
There is a part in the brain called the reticular formation. I understand it is like a central switchboard and when it gets stimulated it can trigger seizure like episodes. My husband with PSP has vasovagal syncopal episodes ( fainting when I stand him up to transfer him) and these episodes trigger a tonic (stiff) seizure like episodes. I read that the reticular formation is triggered which causes the seizure like episodes.
I’ve had a strong reaction to unexpected noises for awhile. I freeze and shriek. It’s become an issue for me here in assisted living in the US because staff come and go in and out of my room anytime they need. I keep my door locked to keep out wanderers and each staff member has a key but the loud knock on the door to announce their entry makes me twitch every time.
Additionally I sleep til mid morning and when staff come in early to shout “good morning” at me, waking me from a deep sleep that’s so hard PSPers to get, I’m not in the slightest bit pleasant.
My solution has been to hang a hotel-style doorknob note that reads “Don’t poke the sleeping bear!” I remove it when I get up. It’s helping.and staff are learning to enter quietly at other times.
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