Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Kay, so I have a question for all of you who have had this for a few years!
I was just diagnosed this summer, and I think that currently it's a fairly mild case. I was having headaches, dizziness, all that junk daily and so we started the process to find out what's wrong. My OP was 33, which the neuro said was only slightly high (I'm 5 foot 7 and 140 lbs, so pretty in shape - i don't know if that's a basis for where your OP should be). I was started on diamox, 750 a day, but that wasn't working well enough, so after 2 weeks she double it. So now I'm at 1500 a day and it seems to be working pretty well. The headaches are way less frequent and aren't AS bad as before. I'm currently off at college until december (meaning I don't see my neuro until then since I am across the country from her).
So here's the big question I have: When you go back and see them, do they usually do another LP if the meds seem to be working? Or do they only do them if you are not improving?
Thanks!
I was just diagnosed this summer, and I think that currently it's a fairly mild case. I was having headaches, dizziness, all that junk daily and so we started the process to find out what's wrong. My OP was 33, which the neuro said was only slightly high (I'm 5 foot 7 and 140 lbs, so pretty in shape - i don't know if that's a basis for where your OP should be). I was started on diamox, 750 a day, but that wasn't working well enough, so after 2 weeks she double it. So now I'm at 1500 a day and it seems to be working pretty well. The headaches are way less frequent and aren't AS bad as before. I'm currently off at college until december (meaning I don't see my neuro until then since I am across the country from her).
So here's the big question I have: When you go back and see them, do they usually do another LP if the meds seem to be working? Or do they only do them if you are not improving?
Thanks!
Welcome to the group!!
I agree with everything frstsite has said. To explain a bit further;
A normal opening pressure in a healthy person would be between 13-15, it can be higher in someone who is obese.
Most neuros start the count at 20 for diagnostic purposes.
So, you having a 33 count is quite high and definitely means its IIH/PTC.
But don't worry too much about how high it is. Its all very random I'm afraid. people with high op may not even suffer hds and so forth.The most important thing is to keep a very close eye on your sight.
Have you see a Opthamologist yet? This is so so important as it is the eyes that suffer the most damage.
They will be looking for Papilledema, paps for short. That is swelling of the optic nerves. This is caused by the extra csf that we have too much of, pressing on the optic nerves.
The meds, Diomax should help to reduce the excess.That is the hope anyway!
As for repeat lps.I am totally against them. I and my neuro believe that it should only be use to diagnoses and maybe to see how things are going down the line. They are dangerous on so many levels, causing scar tissue damaging the spine, contributing to Chiari Malformation, and they bloody well hurt!
I do hope the higher dose of Diomax does he trick and you continue to feel better.Cath.
So, no, you do not need another one. Your eyes will tell the story, safely and with very little pain.