PSP seizures?

[FrazRin21]

Hi all,

I’ve not posted for a while but things have changed recently with my Mum and I was wondering if others had experienced anything similar.

Mum goes into a kind of seizure, like she is in a deep sleep but totally unresponsive and when she starts to come round she is still not “with us” for a while, fixed eyes, no communication.

I’m wondering what we should expect next, will these seizures get longer? Could the end be that she doesn’t come out of one? In the last week a couple have lasted up to an hour’ish.

Any similar experiences you are happy to share would be appreciated.

Thanks

[Helen119]

Hi. My husband has seizures but they are full n siezure like epileptic fits, but he also stares with fixed eyes and cannot respond for a while, I think that is moreLike freezing. Just like when his legs stop working, but this is something else freezing, so he can’t respond.

Love and hugs to you xxx

[FrazRin21 in reply to Helen119]

Thank you for your reply, big love and hugs to you too 🤗 xx

[Alib2408]

Hi, my dad can go into a very deep sleep and nothing will wake him…. At all! He also sometimes gives a fixed stare when he appears to look straight through you… think this is common with PSP… so sorry you too are on this awful journey… big hugs x

[FrazRin21 in reply to Alib2408]

Thank you, sounds very similar, at least I can let me Dad know it’s not uncommon. Big hugs back to you 🤗 xx

[LuisRodicioRodicio]

Hi FrazRin21!I have these informations about seizure and PSP:

"The seizure, spasm or catatonic episodes appear sometimes (not all cases) between 6 and 10 years from the first symptom of PSP.

Complete loss of control of arms and legs. Spasm/stiffness/seizures, They are not really seizures, they just freeze for a few seconds when they first stand. My advise is to just stand there and hold/hug the patient or, if you can, have them sit back down and the episode will pass in a some moments.

- Sporadic episodes that can only be categorized as catatonic in nature. Blankly stare, unresponsive to sound, touch or other stimuli. Gripping or holding anything at the time of the event, not release it and if one tried to take whatever it was from his grasp, would struggle to keep it. These episodes lasted anywhere from 10 minutes to 30-45 minutes in length. When come out of the catatonic state and have no memory of the event".

Hug and luck

Luis

[FrazRin21 in reply to LuisRodicioRodicio]

Thanks Luis, great info as always 😊 xx

[Railfan]

I experience episodes of a seizure like episode about 3 times a day or sometimes slightly more. My Neurologist believes they are PSP related Myoclonus Jerks but wants me tested for seizures anyway. I can describe them as something similar to your entire body stretching after taking a nap but instead of moving everything outward in the stretch, your limbs and even your torso is pulled inward. This is accompanied by a very slight tingling sensation as if you pressed your tongue to a 9 volt battery. My Neurologist has started me on Topiramate for it. He is gradually increasing the dosage and right now I believe I only have one episode a day now.

However, like others have said, I can be seen gazing with my mouth open and hard to rouse. A couple of things to add to the other observations is that sometimes I can be startled when I come out of it. During it I also sometimes have wakeful dreams. Not Hallucinations. I've experienced Hallucinations on high dosages of Carbidopa Levodopa and these dreams while awake are not them.

[FrazRin21 in reply to Railfan]

Thank you Railfan. Great info which I will share with my Mum and Dad. Sending big hugs to you 🤗 xx

[oilman1]

My wife doesn't have any seizure type incidents but she does seem to be freezing up more now. As I am sure you have noticed, everyones symptoms are somewhat similar but also different. Tough disease.