Reversible Cerebral Vasoconstriction syndrome?

[GlenAlva]

Hi, I am new here and sending this post on behalf of my neice who is currently in Hospital with severe headaches. She is 37 years old. They think it might be Reversible cerebral vasoconstriction syndrome which is quite rare. Does anyone on this site have or know of the condition or should I be on a different site? She is feeling understanderbly anxious at the moment.

Many thanks

[vivdunstan Volunteer]

It's different from vasculitis that this board deals with, but sometimes it can be confused for vasculitis in the brain (which I have, and have lived with since 1994). Diagnosis is difficult. But the key thing is that the treatment protocol is very different.

I would suggest that you read

my.clevelandclinic.org/heal...

and also

americanmigrainefoundation....

I don't know where you live, but it's likely a support group or board for migraine or headache sufferers is likely to be more helpful. Or at least could point you in the right direction.

[GlenAlva in reply to vivdunstan]

Dear Vivdunstan,

Many thanks for replying to my question - I do so appreciate you doing that. Is it a form of migraine then? I will read the articles now and look for a support group in Norfolk where my neice lives, although she is in hospital in London at the moment.

Many thanks again

Much appreciated

[vivdunstan Volunteer in reply to GlenAlva]

I'm not a medic, but from what I've read I do believe it is related to migraines in some respects. Certainly more closely than to any form of vasculitis. Yes it's also a problem with the blood vessels, but it's a different disease process, and so causes different symptoms and needs very different treatments.

I did recently read a fairly recent academic book about vasculitis, and in particular I focused on the chapter looking at cerebral/CNS vasculitis which is the disease I have. That chapter mentions RCVS as something that can sometimes be confused for vasculitis. So RCVS was fresh in my mind when I saw your question.