Need someone to point me in the right direction to get help

Two year's ago I woke up and the left side of my face and left arm/hand were uncoordinated, weak, mildly numb and "pulling" - not drooping.  There was a metallic taste on the left side of my tongue.  No pain.  MRI w/ contrast showed, what some think is, a telangiectasia close to the center of my brain on the right side.  Major symptoms lasted for a week or so but have lingered to one degree or another since then.  Headaches of varying severity have been increasingly occurring and unresponsive to a variety of migraine meds, seizure meds, and high blood pressure meds that treat migraines.  None of the narcotics, that I have only taken a few times, have touched the pain.  

This last episode has lasted three weeks with a variety of big headaches - on both sides of the head, not pulsing, sometimes stabbing.  There is constant pain on the top of my head that feels like my head will burst open from pressure.  The facial "pulling" and arm/ hand weakness are periodic during the episodes.  Also, the new symptom is my right eyelid is drooping - it feels like someone is pushing it down.  When I have these episodes I have trouble finding words and have some confusion and a slower thought process.

Other than this I am a happy, successful, and healthy 46 year old woman.  I've got a great relationship with my family doc who is trying to address the pain while looking for the root cause.  Neurologists have been a lot less helpful.  The first one told me I had either an inoperable brain tumor or a stroke.  The second is a stroke specialist who has not shown much interest in tackling the problem.

Last MRI was Oct '08.

[buffyw410]

A couple more details that may be helpful.  The thing in my head may be an AVM.

I do not have any visual disturbances w/ headaches.  I am mildly light and sound sensitive.  Symptoms are worse when I am up and around.  Exercise makes me really hot and dizzy.

Thanks in advance for your help.

[opinmin]

Have you tried seeing a Vascular specialist/Vascular surgeon?  I would go in that direction.  Dump the Neurologist and the Stroke specialist; not doing anything for you.  

Secondly, repeat the MRI and obtain an MRA of the brain/head.  

It sounds definitely vascular in nature to me.  

Keep us posted.

[buffyw410]

Going for MRI/MRA w and w/o contrast today. Also doing blood work to look for vasculitis. Family doc recommends going outside of Cincinnati to find neurologist after striking out twice here. Thanks for the support after a long and painful three weeks.

[opinmin]

Keep us posted.  Sounds like your on the right track now.

[buffyw410]

Three radiologists took a look at my three MRI, MRA pics. They made a diagnosis that I think fits - cavernous hemangioma.  Now the trick will be to find a neurologist to follow me.  Easier said than done here in Cincinnati.  

Still nothing will touch this dumb headache!  Narcotics have the opposite affect on me - no pain relief and up all night if I take them.  Ugh.

[opinmin]

I think you will need a Neurosurgeon, not just a Neurologist in your case with a Cerebrovascular specialist on board.  Have you looked for someone in the Dayton area or is it too far for you to travel?  I am from Ohio originally; Akron/Canton area.  

Have you tried NSAIDS for the h/a?  They are non-narcotic.