Was this your first lp? If they couldn't get any spinal fluid out, it just means that your pressure was low/normal at the time. Are your headaches worse laying down or standing up? If standing up, it is a low pressure headache. Stay laying flat, at no more than 30 angle and drink plenty of caffeinated drinks. If worse when laying down, it may take some time for you to feel the effects of the Diamox as far as headaches go. You could ask your neuro too call in an Rx for a 7 day tapered dosage of steroids; that sometimes helps. If you have ice packs, use them around your head and neck. What other symptoms are you having (throbbing, ringing in ears, nausea, etc...,)?

Hope

So sorry, that sounds awful! Did your neuro say if you have swelling of your optic nerves? I am guessing that is most likely since it would be unusual to give a diagnosis of PTC in the absence of that and without a measurable opening pressure (it IS possible, just less likely). Viral meningitis, huh?!

Where are you having all this done? Is it a small hospital, or mostly through your neuro? Has he mentioned sending you to a ophthalmologist or neuro-ophthamologist? This is often done for visual testing since there can be subtle visual changes (or not so subtle) with PTC so it is good to have formal testing.

Most of the time with elevated pressure the CSF comes out more rapidly during an LP but I suppose anything is possible, if your CSF was for some reason obstructed or your pressure was low. Hmm. How did your neuro explain it?

My headache let up a bit after about a week and a half on Diamox. Not absent, but a level I could live with. It fluctuates now (but I am on a very low dose). I've read it can take weeks.

Hope your headache improves soon! Sorry it's been such a rocky time.

Thank you for the tips! He did say he saw swelling of my optic nerves and I have an appointment for a field test on the 29th and for the exam on the 5th. My head is worst when coughing, sneezing, straining or anything that gets my BP up including sex an argument, crying or working too hard on things. The only time I feel nothing is when I am asleep! That was my Third LP. The first time on 4/12 they got fluid just fine but didn't take a pressure, the second time he THOUGHT he was in the right place but finally gave up because no fluid. This last time was under fluoroscopy and he was VERY perplexed that nothing was coming out. My tests were done in a small, frustrating, incompetent hospital!! Most people around here drive to a bigger one if they feel it is serious.

Have any of you tried marijuana for pain? I have a friend that lives in WA and that is what her DR prescribes her, she says it works well.

if they didn't get fluid then they were not in the spinal space and it was no result, so don't let them tell you your pressure is normal; they just don't know. and compared to others on this board, you are still on very low doses of Diamox. go see a specialist at a major university hospital, even if you have to travel.
there are others here who have used marijuana and there is evidence that it does lower intracranial pressure. I think it is a condition for which medical marijuana is justified, however no one knows much about PTC so I bet the neuros don't know this.

you definitely have PTC from your description. the papilledema, plus all the things that make your pain worse are things that cause a valsalva maneuver, which raises ICP. get some better docs. you should be seeing a neuro-ophthalmologist.
how is your sleep? sleep apnea can cause this or make it worse.

Hi MamaEssie,

My goodness, you indeed have had an LP nightmare. I hope you start feeling better soon!

I use marijuana for managing my pain with this disorder. I enjoy consuming thc edibles on occasions and I vaporizer daily. I've found that it not only helps with my pain, but it also significantly helps with nausea. Overall it makes me feel more calm and relaxed, so it's easier to handle the stresses of being ill. Marijuana is the only form of pain medicine I trust because I truly believe in it's medicinal properties. If you live in an area where it is legal and it's something you would like to try, I think it's a great alternative.

-Amethyst