hi =) i'm sorry you're in so much pain and feel completely lost and hopeless. keep searching for the right doctor ... they are out there. if you believe your symptoms are consistent or similar to PTC a Neuro-Opthamologist can best help you. I'm not too sure what you meant when you said "there were no markers for it in my MRI [so] he is doubting [PTC diagnosis]. As far as I know and in my experience with PTC, having a negative result for an MRI is a good thing. Initially, MRI/MRA/MRV and CT scans were used to rule out other conditions and/or causes of my symptoms. When I was initially diagnosed it was papilledema present in both eyes (swelling of the optic nerves), ruling out brain tumor/brain hemorrage/and meningitis and then finally a lumbar puncture that i achieved imnediate relief in my head from that diagnosed me. Everyone's experience is different and my experience has since changed, but there's always hope and there's always help. xo

Ditto what tpearce said. A negative MRI as far as showing a CAUSE of the IIH is part of the diagnostic criteria for IIH. Take a look at the modified Dandy criteria.

http://www.ihrfoundation.org/intracranial/hypertension/info/C72/

Have you had a lumbar puncture to check your cerebral spinal fluid (csf) pressure? That's the one thing that can diagnose IH. Some doctors are reluctant to do it unless the other dandy criteria are met.

BTW... not everyone shows evidence of IIH in their MRI. Some do, some don't. I have an empty sella; not everyone does. Many people's optic nerves' changes can be seen on an MRI. My optic nerves are fine (no papilledema!) and there's not extra space around the nerves. My ventricles are narrowed but not drastically like found in some IIH patients, or not at all as found in others. Some people's venous sinuses look compressed on the MRI, other's don't. (Mine are small though I don't remember the exact words used - is that the same as compressed?) Anyway, certain signs might be seen but not everyone has those signs. A negative MRI finding isn't a reason to discount IIH as a possibility.

Sinus problems can cause intense headache, nose, ear, and eye pain. If it's in your upper sinus you may not even feel "stuffy." Just miserable. And if you are really clogged you may not even be blowing anything out your nose. Do you have allergies, or have you had that cold/flu that's been going around this year? All the strains are real bears.

There are lots of different types of headaches. Cluster headaches can feel like a knife through your eye. Check these out;

http://www.headaches.org/educational_modules/completeguide/cluster.html

http://en.wikipedia.org/wiki/Headache

There are neurologists who specialize in nothing but headaches. They are usually able to figure out what's going on rather quickly.

If it turns out you don't have IIH, be ever so GLAD. The main effects are a lifetime of pain, and possibly blindness. There is no explanation or cure. Just draconian drugs or surgeries that often don't work. It's a rare "orphan disease" with very little research. I bet you're thinking a diagnosis right now would be nice (and it would), but I'm praying for you that it's not this one.

In the meantime chin up. The doctors sometimes fumble around for awhile. Or a great while. But eventually they figure it out. If only we were all computers with source code to simply debug it'd be easier.

Sorry. It stinks and can be so frustrating. Of the two neuro-ophthamologists I've seen, one of them did seem to really want to see some evidence (i.e. empty sella) on my MRI. It seems not all of them care about the modified dandy criteria for diagnosis - argh. I'm curious how your doctor would explain your optic nerve swelling, then? Given that sign in conjunction with your headaches it seems silly to throw out PTC. Has the Diamox started helping yet? Hang in there, it can be a tricky diagnosis to have made, many of the stories on this board attest to that.

Thank you everyone for your advice!! I called a major medical school that is close enough and made an appt. July 9th!! At least I am on the list to be seen eventually. They put me on the cancellation list as urgent! I see an ophthalmologist on Monday and maybe she can help also. In the meantime I need to learn how to deal.

Did you get the paper report and mri disc?

No Mary- thanks for reminding me I need to ask for that! I have had 3 lp's done BADLY and none of them have managed to get a pressure. The last one (laprisclpically) I had to get a blood patch after. UGH!! I have my eye exam is tomorrow morning so we will know more then!! I really do appreciate all your advice!!

Please make sure you get it for your records. Lots of times there are incidental findings on them that are never mentioned to you and are of inportance to your health and how you feel, and will dictate your care. For instance after years of being treated like crud from Drs being told nothngs wrong and Im nuts, my mri revealed cerebral tonsil herniation which at the time was being termed as Arnold Chiari Malformation. After seeing out of state specialists it was determined the high pressure herniated the brain and treatment should be directed towards pressure, not surgery for herniation. That surgery is a doozie, funny thing is in 4 years the neurosurgeons treating this now recognize chronic untreated high pressure herniates the cerebral tonsils more often than they thought, and will not kill you as was what was told to me in 2010.