Cramps, unable to move and falls

[Honghua]

Hello,

I wondered if anyone experiences this?

My husband is now getting painful cramps in his neck, they can travel down his spine.

His head gradually sinks forward and is too painful to raise up.

He looks "vacant", is unable to talk and looses all balance.

If he is standing he will fall but it also happens when seated., in the shower even on the loo.

He says he is aware of what is going on but can't respond.

These episodes started back in November, only a couple but are now daily, three or four a day.

They can last up to 45 minutes and are scary to watch.

Occasionally they look like a seizure. He is being sent for an EEG.

Yesterday I squawked again, at the hospice nurse who told me to call the GP.

She said she would talk to a colleague and call back.

Diagnosis by a GP who hasn't met him or seen what's happening is dystonia and take Baclofen ! Just ignoring the fact his blood pressure drops so low I can't measure it when this incidents happen.

Again have any of you experienced something like this?

[Paul_and_Sue_Wood]

Hi

This sort of set of symptoms of MSA is regularly talked about.

Get in touch with the nurses at MSA trust as they may be able to give you a lot of guidance to alleviate some of the symptoms.

Be aware these symptoms can lead to falls and accidents, which in turn can make the symptoms worse.

Be safe

Paul

[Honghua in reply to Paul_and_Sue_Wood]

Thanks for your reply.I manage to catch the falls , most of the time.

It just means I can never leave his side.

I've been in touch with everyone maybe next time I can try Ghostbusters!

[Orla789]

Yes I have Z. Your poor husband, they are so painful. I was getting cramp in my legs snd feet in the evenings and over night. I am pretty resilient normally but made me cry out, They tried baclofen to no avail . Now on 2-4 mg of diazepam which works a great ad also helps my mood and sleep. Of course it is addictive but that is a low dose and I have no undesirable side effects such as respiratory depression. I also have neck and shoulder pain from tortiollis , the drooping forward of the head and it’s relieved that somewhat too. Of course every msa patient is different and yo must be advised by your dr and msa nurse. I think I am further down the journey than your husband and I don’t think I’ve got long to go, so addiction is the least of my problems. I hope you find a solution

[Honghua in reply to Orla789]

It's so rotten for you! If the diazepam works, take it.

Thank you for replying, it must have been a huge effort

[Diane831]

It really sounds like low blood pressure events and looking at the MSA Trust fact sheet or speaking to one of the nurses will give you a guide to some home management tricks. But drinking enough fluids and being ready to put his feet up onto a stool or chair as soon as it starts happening helps. I used to lift Geoff’s arms up too and get him to move his fingers around if I caught it early enough. It is just part of the autonomic system involvement and as others have said, it can change at different parts of the MSA journey! What joy!!!

[Diane831 in reply to Diane831]

msatrust.org.uk/

[Honghua in reply to Diane831]

Hi I'm convinced its tried into the blood pressure drop too.But the doctors but want to reach for a prescription pad without even seeing him.

Thanks

[Diane831 in reply to Honghua]

Just by the way, Lifting the arms up is a bit counterintuitive and only works if they are still aware enough to join in with the movement and getting the blood moving, otherwise it might makes the faint worse!! It worked for us though.

[Honghua in reply to Diane831]

Thanks we will give it a try.This afternoon's episode lasted an hour, filled by a fall in the bedroom when he insisted on taking his lying and standing BP. Joy🤔