I was diagnosed with pseudotumor cerebri (intercranial hypertension) in 2001 when I was 15 years old. Since then, I have lost a significant amount of weight (80 pounds), and the combination of that and taking Diamox alleviated all of my symptoms. My ophthalmologist deemed my psuedotumor as being in "remission" in 2002.

I am now 21, and last wednesday woke up with a horrendous headache, nausea, dizziness, and some visual problems. These symptoms scared the beejeebies out of me (reminded me of what I had had in the past), so I went to my PCP. He said it was probably just a migraine, gave me a shot of toradol, and recommended I see my ophthalmolgist as soon as possible because of my history. I saw my eye doc the next day and he at first said I probably just had a migraine..I have no history of migraines though. Then he looked in my eyes, and saw that I had papilledema (optic nerve swelling). He then did a visual field test, which showed an enlarged blind spot in both eyes. This really concerned him because I had seen him 6 weeks prior for my yearly exam and all my tests came back clear. He is concerned that my pseudotumor may be back.

I had an MRI done this morning and am awaiting the results. I had another MRI done back in April of this month and it did show a pineal cyst (1.5cm x 0.9cm). None of my docs seemed to be concerned about this finding though. My questions are: has anyone with pseudotumor cerebri ever had the condition come back after years of being symptom free? and could the pineal cyst be causing my symptoms?

Thanks in advance!

Megan

I don't want to freak you out, hopefully it is just a migrain, but the symptoms you are having could be consistant with a tumor. You're on the right track by getting the MRI of your head and getting that possibility ruled out, hopefully you'll have good results. Good luck to you and God Bless, let us know what happens if you can.

Alrighty, here's an update. My pseudotumor is back...with a vengeance! I went to my ophthalmologist yesterday and he did another visual field. It was alot worse than it was last week (almost all of the peripheral vision in my left eye is gone), and my optic nerves were more swollen than last week. Good thing was that the MRI came back clear. My doc was very concerned with the progression of the symptoms, and he wanted a lumbar puncture as soon as possible. I had that done this morning and my pressure was 31. When I had this before, the highest my pressure was was 32. So they drained a bunch of CSF off and left me with a pressure of 15. I am hoping I don't get a post-lp headache...they are the pits!

I am now just waiting for my ophthalmologist to call and tell me where we are going to go from here...I am guessing he'll put me back on the Diamox. I hate taking it b/c of the side effects. What I can't understand is why the pseudotumor cerebri would just come back all of a sudden, after going 5 years being symptom free. Anyone got any ideas?

Megan

Are you seeing a Neurologist or Neurosurgeon all the while this is going on? they might have some good insight for all this.

I did see a neurologist years ago when I had this problem, but my ophthalmologist is very knowledgeable about this condition, and is following me now. I did see a neuro-ophthalmologist at Emory Univerysity in Atlanta in 2001 and she felt that my local ophthalmologist could follow me. If I ever need a shunt or anything like that, then I would see a NS.

I actually just got off the phone with my ophth. and he is starting me back on the Diamox to try to keep my pressure down and keep my vision from deteriorating any more. I have a follow-up appt. with him for next Tuesday and he is going to repeat my visual field exam.

This might seem off topic, but it just came to mind because I know that diabeties can play into vision loss as well, might be worth checking out if you feel suspicious of it.