Episodes of not being able to wake although can hear

[Rowljo]

my step dad has MSA P. A new symptom has just started happening where he goes unresponsive. It’s often after a sleep. He just can’t come round, can’t open his eyes or talk or swallow. He can hear us though as he can squeeze our hand in response to a question. It’s only just started but each time he does come round eventually. I wondered if anyone else has experienced this and has any advice on what we should do when this happens. Doctors have said it’s just something that will happen and to give it time. Anyone who has experienced it is be grateful to hear from.

[Derkie54]

Hello,

My wife has something similar.

She sometimes has breathing issues during sleep and when we go to see what the problem is we find she is looking at us eyes wide open but completely unresponsive. The next day she has no recollection of this.

She has lots of strange little medical episodes and we now wait for our next hospital appointment, you can't keep calling 111 or ambulances.

Sorry we don't have any suggestions but it does show you how varied the symptoms are between MSA patients.

Derek

[Rowljo in reply to Derkie54]

Thanks for your reply Derek. It’s helpful to know others are just feeling their way through this. I think that’s where we are at, can’t keep calling ambulance and it’s just worse if he gets admitted to hospital. Docs have said to us just to wait it out, keep them calm and not over stimulated. Thanks again

[Derkie54 in reply to Rowljo]

Hello,

You're right when you say :

" that's where we are at "

We adjust to the changes when they come, doing what we can and leaving what we can't.

Not much we can do now, but never mind that's MSA for you.

Merry Christmas to you and your family.

Take care.

Derek

[ozmarlz]

Hi Sorry late to reply but yes we have this a lot and eyes are now becoming a more common issue. I find I am sitting just chatting away and he squeezes my hand and eventually comes back fully around. I've also started asking would he like an audio book and this seems to bring him out of an episode. I have been told it is just another form of being locked (same as not able to throw an item etc) just more extreme. He's always able to squeeze my hand so I know he's in there somewhere

[Rowljo in reply to ozmarlz]

Thanks very much for responding. It’s comforting to know others are going through the same things. Will try the audio books. Thanks Jo

[fixedit]

this happens to me, though not on waking. It tends to be when I’m tired. I can’t move or speak, but I am conscious and can hear. When people sleep, they body is paralysed by their brain until they wake up This paralysis might be messed up by MSA and last for a bit longer than it should. I’m not sure if anything can be done. Such is MSA! Talk to his neurologist.

- Tim

[Rowljo in reply to fixedit]

Hi Tim, thanks for the response. Really helpful to hear someone’s first hand experience. Sorry it’s happening to you too, as you say such is MSA. Talking to the neurologist to see if a change in meds makes any difference. Take care x

[calebsmum]

It might be to do with low blood pressure, my husband’s pupils go huge and he blacks out and then comes round again and it is because his BP is too low