DYSTONIA: Hi Everyone Geoff has started to... - PSP Association

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DYSTONIA

D0ttieL0ttie
D0ttieL0ttie

Hi Everyone

Geoff has started to have seizures, where his back arches and his body stiffens into a board, with some tremors in his hands and arms, even his face becomes fixed.

After a 3 hour episode (no ambulances available) he was admitted to hospital.

Initially he was given IV Diazepam but is now on Procyclidine Hydrochoride orally and intramuscular if in a prolonged seizure.

Has anyone else experienced this and if so, do you have any advice?

Pam

8 Replies
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Oh, Pam, that must be awful to witness, and agonizing for your husband. I can hardly imagine. Is he still in the hospital?

I'm sorry I have no advice to offer, just sympathy and long distance hugs.

Ec

Thank You.

He is home now on meds and intramuscular injections if he has a sustained seizure, I have been given permission to administer the injections if needed. Hmmm

There are past posts on this here:

healthunlocked.com/search/d...

Pam so sorry you are both going through this. Read the previous posts if you haven't already. Thank goodness we were spared this. If he has been put on medication then fingers crossed for you that it will soon work.

Hugs to you.

Marie x

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Sorry Pam that you were given another gift from this dreadful disease.My husband only had a small seizure while we in emergency last go round scared the daylight out of me.Doctor just shrugged it of as of to say no big deal..I belive when they do a quick read on the disease they pretty much right them off,hmm I guess I'm still a little pis**ed at that doc.

Do hope it gets sorted out.

Dee

Thank you Dee. I think it is here to stay but he is on medication and so hopefully he won't have sustained seizures xx

Hi

Mum has developed Epilepsy and had a few big seizures since last year. Hers have not been as long though. She was admitted into hospital for her first one but I've not rung an ambulance again since. It has taken over 12 months to get an appointment with the epilepsy nurse, which we have end of April. Where he is going to show me how to administer emergency medication if prolonged attack. Thankfully not needed it so far.

She is on medication for seizures but we have had to try a few so far to find one suitable. She also has myclonic jerks but not been able to find anything to help those.

I don't have any advice really. The epilepsy UK website is very useful to read up on different types of seizures and how to care for someone.

They are horrible to witness and Mum suffers so badly after one. With each one it has knocked her CBD progression on further.

No wisdom for you Pam, but sending a hug. Seizures ate starting to sound not so rare in PSP after all...

XXX Anne G.

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