Sorry to hear that was the diagnosis but it sounded all too familiar to me. Did they find it via swelling of her optic nerves? I hope your entire family is educating themselves on this so they can assist her. There is hope as I told you in my earlier posting my sister is now routinely checked every year but doing much better. Her blood pressure still fluctuates due to work, kids and everyday stress. If your sister follows the doc's orders(provided it's a good doc) then I'm sure she'll progress. It takes about a year for it to subside after incorporating permanent lifestyle changes. Another tip for her absolutely no alcohol or caffeine (as little as possible) until she progresses. Alcohol increases brain swelling(buzzed feeling) and caffeine is a stimulant that will only compound her condition. It's been 6 years for my sister, she still has her Starbucks just decaf!
I just wanted to give an update for anyone else who has similar symptoms. My sister was diagnosed as having Intracranial hypotension syndrome.
She might consider a neuro-opthamologist.My sister suffered the same symptoms, upon a routine eye exam they found Idiopathic Intercranial Hypertension. Essentially this was from mildly high blood pressure for an extended period of time. She was in her late twenties, 2nd pregnancy when it worsened. She had routine LP's(spinal taps) to relieve the pressure sometimes weekly. When she began having vision problems she realized it was time to assess her overall health, weight and blood pressure. She proceeded with gastric bypass after her 2nd child was born and the symptoms quickly disappeared. She was not obese, just about 80lbs overweight. Something to think about hope it helps. I've had meningitis twice myself so the LP's lab results would be representative of meningitis or encephalitis. Please ensure they've checked for West Nile Virus and Lyme's. I recently found out that my initial 1999 viral meningitis was actually a case of West Nile Virus acquired from a mosquito bite near the coast of VA. Good Luck ;o)
She might consider a neuro-opthamologist.My sister suffered the same symptoms, upon a routine eye exam they found Idiopathic Intercranial Hypertension. Essentially this was from mildly high blood pressure for an extended period of time. She was in her late twenties, 2nd pregnancy when it worsened. She had routine LP's(spinal taps) to relieve the pressure sometimes weekly. When she began having vision problems she realized it was time to assess her overall health, weight and blood pressure. She proceeded with gastric bypass after her 2nd child was born and the symptoms quickly disappeared. She was not obese, just about 80lbs overweight. Something to think about hope it helps. I've had meningitis twice myself so the LP's lab results would be representative of meningitis or encephalitis. Please ensure they've checked for West Nile Virus and Lyme's. I recently found out that my initial 1999 viral meningitis was actually a case of West Nile Virus acquired from a mosquito bite near the coast of VA. Good Luck ;o)
130/95 is high. Maybe her BP has nothing to do with her headaches (although I had a headache when mine was that high once), but she should still try to get it down. If she can't do it with exercise and diet (that could take a while) then maybe she should ask her doctor (a different one) about a medicine for it. It's not a good thing to have chronically elevated high blood pressure.
I would get a second opinion from another neuro. It's possible that something has been missed. I always thought an inflammation in that area was caused by some sort of infection.Has she had a spinal tap? What kind of lab work has been done? Has lyme disease or bacterial meningitis or even ecephalitis been ruled out?