Hi,

I was wondering if anyone else had been diagnosed with pseudo tumor cerebri / intracranial hypertension? And how it's affected your weight loss? Or, if after losing weight it got better ? (as all the doctor's seem to insist)

I was diagnosed in 1992, and have noticed some change in symptoms as my weight fluctuates, but not too much!! Sometimes I wonder about what doctors think they know....


Thanks!
Naia

Last year, before they finally figured out I have epilepsy (which I had just been dealing with for over 9 years)...they thought I might have PTC. The thing is though, only one of my optic nerves has any change and it isn't the stereotypical bulging that you'd get with PTC but just a "blurring". Have they re-done your spinal tap to check your spinal fluid pressure...it may very well have changed. Being overweight and eating tons of protein are apparently two of the biggest causes. Being pregnant doesn't help either I guess. Do you know what your spinal pressure was? Mine was just below the 20 it is supposed to be for PTC. It should be better now since I'm a bit thinner...though not as much as I'd like to be.

A neurologist who is the director of the epilepsy department of the best hospital in Oregon said they used to prescribe urea and it worked like a dream at getting it to go away (they'd flavour it orange apparently). Not sure I'd like that treatment, and I don't think they do it anymore, but there must be something other than just losing weight you could do to help. Sorry...when we realized it was epilepsy and not PTC I didn't exactly research it anymore.

I had this years ago. They put me on Diamox (a diuretic). We lowered my lithium dose from 2100mg/day to 600mg/day because it was mentioned that the psuedo tumor cerebri could be a possible side effect of the lithium. (I have bipolar.) Lithium also causes weight gain. So I dropped about 30lbs when the medication was reduced. Between less lithium & losing weight, it seems to have gone away. Every once and awhile, I'll get that type of headache, but overall it is gone.

Good luck with it.
Amy

I'm interested in this, can you explain more about this.
I have inflammatory orbital psdeuotumor of the left eye, lacrimal glad and optic nerve. I'm wondering if this is connected. I had a cat scan and they mentioned that briefly but said I didn't have it...

What i understood about it was it was increased pressure in my cerebralspinal fluid. It was diagnosed by measuring the pressure in it by having a spinal tap. Diamox was the particular diuretic they prescribed. I know they said weight could affect it. When my doctor decrease my lithium (which also could contribute to the syndrome), my weight dropped about 25lbs-30lbs, and it seemed to have gone away.
Amy

Yes, what it is, is too much spinal fluid. That puts pressure on your optic nerve, brain, all that stuff. It is called PTC because the symptoms mimic brain tumors in many ways. Like oreokitty (love that name, had a cat named oreo, she was best friends with a wild blue jay amazingly enough...they played all the time) said, the way they diagnosis it is first to look and see if you have a real brain tumor. If you don't, they do a spinal tap and measure the pressure of the spinal fluid as it comes out...like checking a tire pressure. If it is over 20 (I don't know what the measurement is...pounds per square inch I am sure it is NOT ) which is too high...you need to get it down.

If it is high and you can't get it down with losing weight and a diuretic, they may have to put in a shunt.

I was diagnosed a few years back with PTC disease at a routine eye exam at a walmart. Well, they told me they thought I had a brain tumor and I couldn't stand it I went straight to the ER, and thats where I got my official diagnosis. I couldn't be controlled with medication, so I had to have a VP shunt. Seems like the heavier I got the worse my symptoms got. (Headaches, passing out) Last Oct (2007) I had to have my VP shunt replaced and July 15th 2008 I had lapband surgery and I've now lost almost 60 pounds in 3 months. I wish it didn't take a scary brain condition to make me handle my weight.

Hi there, I was diagnosed with it a few years ago. I had a headache everyday for 3 years. They said that even though I didn't have the effects on my eyes, my spinal pressure was always high. For awhile I was getting a spinal tap every 3 months. They also had me on topamax. I haven't had a spinal tap in a year now, but I've been doing good and since I've lost weight and gotten healthier I've had no problems.