Who here has pseudotumor cerebri???

[bethaniet586]

I am just curious to see how many people have pseudotumor cerebri on this forum...?

[Henricogirl]

I must be dreaming I have had ptc for a little over a year now And i have never meet anyone who has it. I am so into the docs know nothing it took the best nerologest in virgina 9 mounths to dignos me. Then theres my mom she says this will only last at the most 2 years. Now i know that it is all bull. Im not shore if this happens to any of you but I pass out with ptc they said it was a sudden rise in spinal fluid that causes me to lose concenness it has happend to me almost 20 time this year. Then my mom ask me if I was faking can you belive it she sits with me while I cry bc of the pain and because every time i pass out Im afraid I wont wake up. My parents wont let me take anything stronger then 3 Advil and it does nothing the when I call from school they say I need to stick it out. They have no Idea how much they hurt. If you have any advice on what to say to my parent bc sence I started the school year it has only gotten worse. Im sooooo glad i have finaly found people that understand the headakes just started comeing back so did the passing out. No one I know can really realate to me all my freinds are worried and feel sorry for me bc of the passing out and I have to leave school for the pain. I am really really glad to find people that understand I hate when people feel sorry for me.
-Tori

[TJRasta]

I too have IIH since April 08.  And I get the rare opportunity to share in that "chosen few" status with Anglepark because I too am a man.  "wonderful illness", I can think of a few other names but have actually been known to use that exact one from tme to time.  Welcome aboard!

[Anglepark]

I have had Psuedotumor Cerebri or IIH as we call it in the UK,I refuse to use the term Benign as there is bugger all benign about having it.
Had IIH since Aug07 when I only had Papilledema in the right eye,I now have it in both eyes,oh and I`m a man as well so am one of the chosen few I feel so special to `share` thus wonderful illness with all you lovely ladies.

[galaxymap]

Finally, I had my shunt put in on Monday. I am still taking it easy today resting. The fullness and headaches are gone. The incision sites do hurt a little but only if I move wrong. I think the med staff at the Univ of Utah were awesome! They even helped me find a very nice motel that gave good rates to patients and their families. The only negative to all of this was the massive snowstorms that hit while I was in the hospital. When I took the bandages off it shocked my little boys...I think they will use me for a halloween prop.  I am glad I got it done...the meds had not been effective and my job was being interfered with.  Now, we just have to monitor the shunt...Happy Christmas to all

[BIGBANGTHEORY]

I HAVE HAD PSUEDO TUMOR CEREBRI SINCE 1987 OF NOV. NOT DIAGNOSED AT FIRST. AFTER TEST AFTER TEST THEN I WAS DIAGNOSED. I STARTED OFF WITH THE BLURRED VISION,HEADACHES,NAUSEATED,PAIN AT THE BASE OF THE NECK,WHITE SPOTS IN FRONT OF MY EYES. I'VE HAD LP SHUNTS OVER AND OVER AND OVER AGAIN. FINALLY THEY PUT IN A VP SHUNT IN 1999 AND EVERY TWO YEARS THERE AFTER. NOW DEC.2008 MY SHUNT IS NOT WORKING AGAIN NAUSEATED,DIZZY AND THIS IS JUST THE BEGINNING.

[blondeclb]

ok i was browsing the net and seen ur post so i signed up just to say yes i have IIH and papilledema