Mother IIH but tests are normal

In Feb of 2009 my mother tripped on a rug and fell on a coffee table.  She landed on the edge against her chest.  Her husband said that she arched her head back in probably a reflex to keep from hitting her head.  Ever since then she has had orthostatic headaches.  At first when she would stand the pressure would build from the base of her skull, up the middle and then circle her head. It was so severe that she had to sit down.  Upon sitting the pain/pressure would subside.  Of itself that would sound like classic CSF leak.  However, when she would stand again, the paid would be gone.  As the weeks progressed though, her headache would come and go no matter what position she was in.  Sitting or standing.  She dealt with the headaches and just thought she would have to live with it.

This past Sunday, March 29th, 2009 she complained of black spots in her right eye and a curtain like effect.  I thought either stroke or retinal detachment so we came to the ER.  They ruled out stroke but had her admitted.  She was diagnosed with papilledema by an opthamologist.  The neurologist that has taken her case was stumped.  We have done MRI of the head, MRA, CTV, lumbar puncture (opening pressure was 18), and just did an MRI of the cervical spine

I have to think it is something vascular as it seems the pain or pressure is positional of her head.  If she is facing forward she is fine, but if she turns her head to the side or up and to the side, the pressure headache begins.  First at the base of her skull, then up the middle (along the center vein on top of her head?)  then down to above her nose.  Isn't that all along veins?  Could it be that when she turns her head a certain way that it blocks the vein and creates backup pressure of some sorts.  I have asked to have the CTV done again but while she is turning her head up and to the side but felt like the neuro thought it wouldn't be worth it.  Any ideas?  Right now she is most worried about her eyes and permanant damage.

[markneb]

Update.  Opt is reaching now.  Thinks it could be toxoplasmosis or an infection on a heart valve???  Infectious disease doc thinks there is no way.  They are doing an echo just to check.  She is in otherwise healthy condition.  Good BP, no fever, no cough, no other symptoms that would make you think she is "sick".  They seem to be hung up on the thought that it may be some sort of cancer because of her history of cancer, but cytology on CSF came back normal, all MRI are normal, no tumors or abnormal growths.  I almost feel like saying, can I pick a test?  They obviously are just reaching now.,