Hi Everyone,
This is very tricky. We are prone to CSF leaks (we have weak dura). I would have to say that most of these leaks are secondary to either trauma or high intracranial pressure.
Now, once you have a good leak, you could become hypotensive. Making it even more complicated, the symptoms of cranial nerve compression are identical in both cases.
IMHO, the best way to tell the difference is by playing detective. First, on your MRI, do you see a partially empty sella (or empty sella)? That won’t occur if your pressure is low. Now look at your other symptoms. High intracranial pressure will usually result in dizziness, vertigo, motion sickness, you can sometimes see and even HEAR your pulse when the pressure is high, and you’ll experience a worsening of symptoms with valsalva (straining). If you blow up a balloon and things get much worse, I would think high pressure. The type of headache that occurs with high pressure is also a bit different. It usually occurs at the base of the skull, and radiates down your neck to the tops of your shoulders. Do you have that type of headache? That is almost ALWAYS due to high pressure. A high pressure headache is the same (or even better) when you get up and move around. If your pressure is low and you become vertical, you will wish you were dead. Those of us who developed CSF leaks after LP’s will attest to that. If all else fails, I’d ask your doctor about a trial with Diamox. Usually around 250mg at night time will give you incredible relief by morning. And if you get up and your head is killing you? Drink lots of fluid with salt and glucose and lie back down. In 3-4 hours you should be fine.
Oh, the endocrinology gone wild? BEEN THERE! Do you have Part 2 of The Driscoll Theory (click on it on the home page. You can download it directly to your computer). Most of us still have wack hormones, even with our pressures lowered. But CCSVI putting pressure on the vagus nerve can cause the hypothalamus/pituitary/adrenals to go funky. Then if you throw in our inflammatory cytokines and mast cells, our endocrinology can go all over the place. At first, I was hoping it was all high pressure causing the hormone fluctuations, but I’m leaning more toward the vagus nerve causing most of our hormonal issues (although after starting Diamox, my periods returned. Mixed blessing, there!)