Neck & Head Pain - MSA-C

[HOL69]

Hi everyone. My Sister has MSA-C and her illness has progressed rapidly over the past few weeks and months. She is experiencing severe neck pain and headaches. Her neurological doctor has given her botox in her neck which has helped slightly but her headache does not seem to go away. I was wondering if anyone else had some experience of this and if they were given any better painkillers other than Paracetamol & Ibuprofen.

Anything you could share would be gratefully received. It's heartbreaking watching her in so much pain.

Kind regards

[sittingontheprom]

My wife was prescribed ZAPAIN as part of her MSA medication and it helped in her pain management👍

[Whitefeather1]

Good morning, my friend has MSA-P and suffers with this also, she's had several Botox treatments. It eased the pain a bit at first. Her last treatment was in December and it's unfortunately worse than it's ever been. I'm in the process of getting our local hospice involved with her care with the hope that they can manage her pain. Her GP and hospitals ( when she's been admitted) don't seem to know enough about this horrific disease.

I'm sorry I can't give any helpful advice but am sending all hope that your sisters pain eases.

Caroline.

[Helenhooter]

Hi

I found a visit to the osteopath is wonderful for getting rid of tension and tightness in my neck, upper back and shoulders which in turn seems to relieve my headaches. Good luck

H

☺️

[GreenJo]

Hi - we had an appointment with respiratory consultant who said they needed to check his stats overnight to see if he needed breathing support. They did a TOSCA test overnight ( probe attached to his ear and to machine which recorded his oxygen and carbon dioxide) raised carbon dioxide overnight can cause headaches and grogginess throughout day. My husband had raised carbon dioxide (CO2) and now wears a mask at night to increase his oxygen levels. Might be worth checking re headaches. Hope you get some answers for her.

[HOL69]

Thank you all for your responses. My Sister had stopped using her C-Pap machine at night. She has started using it again and the headache has subsided unfortunately the neck pain still continues.