tremors shaking jerking

[Mustafa128h]

Hello psp family

so my dad has psp, now is peg fed, and has urethral catheter. stopped talking, very rigid most of the time, sometimes he has these shaking episodes, they happen every other month, thank god they arent a regular thing, but recently it seems like it is happening more than before. His body is kinda of jerking and you can see his arms shaking. the shaking becomes quite intense and his back sweats a lot, his shirt becomes totally wet on the back. my question is does anyone know what might bring on these shakes? is there a certain trigger ? because it doesn't happen usually

the meds he is on are, lanzoprazole, mucodyne, glycopyronium, metformin, stalevo, rotigotine patch, oxybutnin, sodium docusate and movicol

we give either lorazepam or oramorph to help him settle down in bed, once he has settled il either give him zopiclone or some cbd/thc oil to sustain his sleep

we also give effervescent paracetemol in his water during when his is asleep which helps bring his body temp down and relieve any pain he may be in

herbal stuff i give is sea moss (for mucus), cranberry extract sometimes (for UTIs), coconut oil, hisbiscus or peppermint tea (for utis and digestive health)

so knowing the above any ideas what could trigger it ?

many thanks in advance, praying for you all x

[ep12345]

Hi,

No help as such but just wanted to reach out as my mum has just had this for the first time last week. She is advanced PSP also. It does say that you can get tremors with early onset PSP but it’s strange as she hasn’t had this before.

Following with interest & wishing you well

[AJK2001]

Sorry I can't offer any insight other than suggest you keep a diary of what he eats, bowel movements, exercise, people he sees etc & see if a pattern emerges. Only other suggestion is talk to a pharmacist & see if there could be an interaction between his meds. Sorry can't be more help.

[Tweetybird21]

Hi,my Mum had myoclonus and in the last year she had a few seizures but I don't know if that's what your Dad is experiencing. Could you maybe take a video of the shaking the next time it happens and then show it to the neurologist and ask for their advice? My Mum took Piracetam and then Keppra once the seizures started which seemed to work but your Dad seems to be on a lot of medication already and like AJ said, it could be the meds interacting. x

[Mustafa128h]

thank you for your replies everyone

the things that i suspected it may be are

1. sleep deprivation

2. build up opiods or some other medication

3. sometimes he takes his rotigotine patch off and it may go un noticed that he removed it

4. recently his catheter balloon had a tear in it and came out most likely due to bladder stones, so nurses came and put in a new catheter, i wonder if it started after that, could be a UTI however urine is draining fine and no obvious signs of an infection

just really wanted to get to the bottom of this, because everytime this happens it really ruins his pattern and brings on other new symptoms

i.e normally we do some sit and stands, even do a tiny walk in the living room by helping him distribute his weight on to each foot, this gets the mucus moving and stuff, but as soon as these tremors come on we can no longer do physio and then whilst he is suffering with the shakes his mucus starts to build up too so kinda like a catch 22

as you all know managing all the standard symptoms is hard enough and then when you have to deal with shakes it makes it a whole lot more complicated.

the only way to make him comfortable during the shakes is to give him more lorazepam than we normally do and then just try to sustain his sleep as long as possible till the shakes go away by them selves, this usually takes 2 to 3 days, but its horrible over sedating him but its either that or living with the shakes.

his arms are twitching a lil still im hoping by tomorrow it would have gone, but now i just need to do everything i can to prevent it from happening regularly in the future

[Dorothysdaughter in reply to Mustafa128h]

My mom would shake when she was overtired, but it was hard to figure out. It was just when her body could not be as alert, it would sink in

[Railfan]

I have Myoclonic Jerks that affect my whole body. Everything tightens up and pulls inward toward my core. I shake a bit outwardly but inside it's is if I am receiving a very mild electric shock like I put a battery to my tongue but it's the entire body. During this time it I seem unable to speak and I'm in a light fog. I'm aware of what is going on but I cannot control my mind or body. I have found no specific trigger. This has increased to 3 times a day before I was put on medication. I am on Topamax (Topiramate). It doesn't stop it but episodes are about a month or so apart now. This Topamax is also helpful for the Dystonia I was having in my left foot. It's multiple purpose which means fewer pills. A plus in my book.

[Patienan]

I take zopiclone at night to ensure that I have a good night’s sleep and have done so for a number of years. There have not been any side effects, but I have to admit to being something of an expert insomniac.