My daughter had scoliosis surgery, successful, then developed syncope and Orthostatic Intolerance. Dealt with that using Midodrine, but soon developed chronic headache. Got dehydrated twice due to stomach problems from medications during the recovery time. Due to the orthostatic symptoms, the neurologist diagnosed spontaneous CSF leak and recommended bed rest. The rods in her back make an MRI virtually useless, so the leak has not been located. The headache does not completely resolve with bed-rest, so it doesn't quite fit the CSF headache profile.
She is taking Midodrine for the blood pressure but nothing phases the headache, so she is not taking anything for it. She has now had a headache for four months with varying severity. She has missed most of her school, but managed to do some work at home. She is better in the afternoon and evening.
She still gets dizzy and fainty or nearly faints, gets sweaty, sometimes due to the low blood pressure, and is especially susceptible just prior to her period. Her headache gets worse after one of these near fainting spells. Also, when she is startled awake, her headache gets severe immediately and takes about 4 hours of bed-rest to calm down to a tolerable state.
She can't work, and can't go to school full time. College is being put off until we solve this problem.
We have a lumbar puncture with nuclear isotope injection scheduled for next week to try to locate a leak if there is one, but don't feel real comfortable having it done if the headache is connected to the blood pressure and not the CSF.
Any ideas?