Papa mean your pressure is normally high. Pressure fluctuates during the day and believe it or not, positional (standing up or lying down). You can have IH without a tap being high every time. What was your opening pressure?

Ok, I didn't realize that! I'm learning so much here. He said it was 16. I don't have an official PTC diagnosis bc we were waiting on this tap and now I'm concerned there's a different reason for the papilledema. Maybe he'll have me do another LP at a different time?

If the paps do not improve I would insist on another. How did they do your tap? Lying flat on your stomach or on your side rolled up in a ball?

He had me lie on my stomach to place the needle and then rolled on my side to take the fluid. Thank you for talking to me. I was convinced that I have PTC/IIH bc of my symptoms---and that's what my neuro-opthamologist suspected as well. I was shocked when he said 16! Now I'm doing my 24 bed rest in a panic about what else could be going on!

that is weird. he is supposed to get the OPENING PRESSURE meaning right as the needle goes in. so, did he measure the pressure with you on your stomach or on your side? if it was on your stomach, he needs to add the length of the needle. which is normally 6 cm. so, that would place your ICP at 22 if he neglected to add the length of the needle. also if fluid dripped out while he rolled you from stomach to side before he attached the manometer, then this was not an opening pressure and would have been falsely lowered. personally I cannot imagine having to roll with a spinal needle in my back, that is just WRONG. the needle could have moved during that process, too. I would ask for this to be repeated by a real neuro-radiologist under fluoroscopy. I don't think it matters which position they use, as long as they do it correctly for each position. rolling.....that sounds wrong to me.

Hmmm well that is good to know. I go see my Neuro-Opth today so I guess I'll explain to him how it was done and see what he says! I have no idea at what point he measured the pressure. I asked sometime near the end of the procedure. I can tell you that my head hasn't hurt at all since then!

Tada, This head relief officially means the Dr. is indeed a moron and you suffer elevated pressures.

yes, document this obvious response to the LP! and bring that Higgins paper with you everywhere.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3899735/
to show the docs that regardless of what they think, you have a disorder of elevated ICP.

one thing you can do. do you have lower leg swelling? 77% of us do. my cardiologist gave me Lasix for that, and lo and behold it treated my headaches and brain fog! it is a med used in PTC. so there are other ways to get it.
if you have auditory hypersensitivity, ringing in your ears, or dizziness, go to an ENT and ask for an otoacoustic emissions test to look for damage to your cochlea. get them to diagnose you with Meniere's disease, which is caused by elevation of pressure in the endolymph in the inner ear. (I'm sure this is related to PTC but they are all clueless. endolymph is contiguous with CSF) the treatment for Meniere's is.....Diamox.

hopefully the neuro-ophth will treat your papilledema regardless and this will treat your other symptoms too.

Thank you all for your words of wisdom!! My doctor informed me yesterday that there is inflammation in my CSF that's causing the paps. Now we're on a hunt to find out why I have inflammation. Someday I'll know what's going on with my body!!! I just wanted to thank you all for your time and help! :)

OBSTRUCTIVE SLEEP APNEA.

and unless you go on a major hunt for it to find it and treat it in a way that does not increase your ICP (CPAP causes problems), you may not find it and your docs won't buy it. I was treated horribly by doctors when I started this journey, told there was nothing wrong with my sleep study or my airway. well, a couple years later they are all eating crow because jaw surgery for OSA put my PTC into remission. Dr. Larry Wolford in Dallas TX saved my life.

http://www.ncbi.nlm.nih.gov/pubmed/11874748
if you read this paper, they discuss several patients whose paps improved after treatment of OSA, who did NOT have elevated ICPs while awake. they had ICP spikes during apneas while asleep.

OSA causes inflammation.

if you want to prove it to yourself, get yourself an aveoTSD tongue retaining device. once I was able to keep this in my mouth all night long, my life changed, and I stopped listening to stupid doctors because I knew what the problem was even if they didn't. I think it works because it pulls your tongue off your jugular veins to allow CSF to drain and it treats the OSA without causing a valsalva which just increases ICP (CPAP does this, and BiPAP to a lesser extent).