Cranial GCA

Hello Margaret,

Yes, I was diagnosed with what we call GCV, or Cerebral Vasculitis here in America. Looking back i can see a lot of missed symptoms but the one that got me diagnosed was suddenly losing my hearing on one side. This happened along with some blurry vision on the same side and dull pain in and around my face. I saw my primary Dr, who sent me to an ear specialist the same day, a hearing test was done and i was told i had almost complete loss of hearing on right side. it was nit expected to return as showed up as nerve damage. I was prescribed steroids and within 2 days hearing returned. I was stunned, and was told to complete the steroid pack. Once steroids completed , after about a week hearing was gone again, so they knew what it was, and i was put on full time high dose steroids while we sorted it out.

This was all about 2 years ago. Basically the gradual symptoms i missed and sure see now are the dull ear aches that come and go, as in ten minutes at a time. Face pain, often one sided. Pain when taking the first bite of food, this is really painful and shoots up your jaw. Also, i have a bit of vision loss on the same side as ear issue.

Also in hind sight they believe a stroke i had a few years back was due to this as well. I am still on steroids but a lower dose, every time i have gone off this seems to raise its ugly head. i just have to keep it in my mind that the frustration of the steroids and their weight gain and sleeping issues are still better than losing my vision, hearing or another stroke.

I hope i have helped and not scared you, i just wish i had known more, i have been going at this alone and in the dark it seems. i had never heard of it and still do not know anyone who has heard of it or has it. good luck!

Cranial GCA is what most people refer to as GCA - all in the head region.

https://academic.oup.com/rheumatology/article/56/4/506/2631560

If you look at Figure 1 in this paper you can see the areas vasculitis affects: PMR is the green ovals, upper legs and arms, LVV (large vessel vasculitis) is mainly the trunk and into the upper limbs) and cranial GCA is the head and neck.

Cerebral vasculitis MAY be a bit different.

Yes, you are correct . I did forget to mention that about 3 years prior to all of this beginning, i had been diagnosed with MPV,, so, micrscopic poliancitis vasculitis. It manifested itself as the classic rash looking blood leaking on my legs. That too was extremely difficult to control and get rid of. Once again, all of these things can be very subtle and slowly build and mask as other things that make you not run to a doctor.

So are you are getting neck stiffness as well?

I have been told that you don't even consider reducing your steroids until all symptoms are gone. It does not sound as if you are symptom free? But then i am not your doctor, and if that's what your doctor told you to do of course you do it.

This is such a frustrating illness. Sounds like we have very similar paths!