Every day.

[Anthrdayanthrheadche]

For the past 8 months I have been living in an awful hell. I wake up with a headache and go to bed with one. It radiates from the sides of my head. I have been thinking that it was muscle related. So I have been seeing a oral surgeon who made me a splint. But it hasn't helped. Now I'm noticing when I push on the spots they really hurt... it isn't a muscle though! I can trace them and they feel like veins. Please help me. Could this be vasculitis?

[bowler]

Hi

I'm sorry you have had such bad headaches, I have a form a vasculitis [ Giant cell Arteritis ] which causes very bad headaches, I assume you have had all blood tests done to rule this out ?

[Anthrdayanthrheadche in reply to bowler]

My gp took a sed rate test which was only 1. He thought that might be it. I am only 24. He referred me to a neurologist who put me on gabapentin. He didn't say what he thought it was.. just that we will try a bunch of medications until one works. No improvement yet.

[bowler in reply to Anthrdayanthrheadche]

The sed rate looks good, although some people can still have GCA with a normal b/test, however at 24 that is a bit young to have GCA, but not impossible, I hope you soon get sorted, I know what its like to have bad headaches.

[PMRpro]

My immediate thought was GCA - but you are a bit young for the classic version. However, there is a rare version which is found in young patients. Is the sore area around your temples?

I really don't approve of the idea we'll try everything and find something...

Ask your GP to refer you to a vasculitis expert - and if there isn't one handy, try a rheumatologist. However - not knowing where you are makes a real recommendation a bit difficult.

[Anthrdayanthrheadche in reply to PMRpro]

The area that's sore is the entire temporal region. It stems from the temple. I live in Jacksonville Florida. I was very disappointed in the neuro telling me we will try things until something works. I feel like no one is listening to me.

[PMRpro in reply to Anthrdayanthrheadche]

Sorry - don't know about experts in the USA, someone could have recommended places to go in the UK.

However - there are Mayo or Cleveland clinics in Florida i believe and a few years ago someone with a rare vasculitis was singing the praises of a doctor called Lee at the Mayo in Jacksonville. Worth a look maybe?

[cdenoncourt in reply to Anthrdayanthrheadche]

I live in Jacksonville, FL too. I have Giant Cell Arteritis. I go to the Mayo Clinic rheumatology department and believe I get excellent care. You can go to their online site and request an appointment without a referral. The site also lists the insurance they accept.

Keep looking for answers and I wish you well.

[Anthrdayanthrheadche]

I'm going to look into that doctor and clinic! Thank you!

[Hidden]

There is a USA Vasculitis charity which has lists of Dr's

vasculitisfoundation.org

I have to say that headaches are very common and Vasculitis is rare. Do you have any other symptoms at all as it would be unusual to have Vasculitis presenting with just headaches?

[Jackie1406]

Hi, I had headaches for a while, which got worse. I then had numbness down my left side & was admitted to hospital & was diagnosed with cerebral vasculitis! You should get checked out. Good luck.