Living with Intracranial Hypertension A.K.A Pseudotumor Cere

[vampirebabe2009]

I was diagnosed with this April 1st 2011 .. and no i am not kidding about the date, i had my second lumbarpuncture done that day (my first lumbarpuncture had been during my first hospitalisation back in october and though opthamalogists agreed it was intracranial hypertention, the neurologist was not sure and shrugged it off as stress headaches despite the high pressure) the pressure turned out to be 49. This started in august and people think i am okay but no-one sees the pain i go through

[Luvthesummer2011]

i have this to. i was diagonsed when i was in 6th grade, i thought i just had migraines as my mother did. before i new it my vison was getting bad. doctors had me rushed to get lumbar puncutres. my pressure was the second highest a child my doctor has seen. i went on medication. i lost 20 pounds. i went on remission and then was recenlty told o go back on medication because its come back. this suck its a horriable disease. i wish iw asnt 17 going through this

[mariantony100]

i had this i had to have brain scan an lumba puncture an take tablets the hospital said it caused by obese an caffine can be a big factor i changed my whole diet went to the gym iv lost 40lbs my eye sight bk to normal an i get no headaches the hospital discharge me last month

[MsPrettyCute]

I have this disease too. No one understands what I go through, because I don't look sick. If only they knew the pain.

[mrsondesko]

i have pseudotumor i found out in 2002 i must of had it for awhile becouse i was almost blind i had headachs off and on for years before that day in oct of 2002 dec 2002 i had my first shunt put in still no relief may 2003 my second shunt put in still no relief i was getting spinal taps once a week that would help for a day then the headachs would come back i was taking diamax and topamax i was also on pain meds and nothing was helping

[Halloweeniegirl42]

I was fortunate enough to be diagnosed with PTC early enough that if I lose weight I may be able to save my eyesight. I lose my vision sometimes and am fortunate only to have mild/short headaches. I've actually applied to be on the television show The Biggest Loser to help raise awareness for this rare condition. More people need to know what we go through!

[Angiepangieful]

Thanks for this video, its just so nice to know i'm not alone. Had this on and off for three years it's driving me nuts doing my 'head in literally', plus they made me feel sooo fat and i was only a size 14, it was embaressing how dare they ask for my weight! I'm now a siz had baby weight to lose, but i still have this condition so in my case it was a lod of bull that it was weight as i'm slim. On diamox and hate it, tired, outve it a lot. Pins and needles are sore at times but can hndle that.

[mwsimms]

Pseudotumor Cerebri since 1980 and a shunt since 1991. Great video. Thanks

[SJ2469]

Also a sufferer, hoping for a cure. This made me completely disabled.

[ALPRG]

I know the pain all to well. I have this also. I found out in 1997! I hope that some day I will not have to be in any pain any more! Keep up that geart work!

[ALPRG]

I have it also.cool video

[saveusrecycle]

I have IH as a result of Accutane useage. I suffer on a daily basis. I've had this terrible disease for 6 years now. It's horrible and some times I just don't want to go on living. No one understands the pain and pressure. I just pray they'll find a cure. Thanks for the awareness.

[nikkiblu78]

many of us feel your pain... Always know you are not alone ..... Wishing you a pain free day ... xo i Know it can be hard at times... and when ever im having a bad day i always try to look for the gift ..... i am then grateful that this is ALL i have ... millions of people are far worse off than me .... and when i think about them the pain in my head does not seam so bad.... i hope you find your gift..... xoxo....

[saynotobreastimplant]

I just got diagnosed with psuedotumor. I too was on isotretinoin. I cant belive an acne drug destroyed my life. I was on it 7 yrs with horrible migraines i was having. I never knew it was the medicine. I am so angry. Can we sue? I have csf leaks all over my skull cause the psudotumor went undiagnosed for so long

[saveusrecycle]

The added IH as a possible side affect from Isotretonin. Roche has covered themselves. I was so young taking it and had no idea. My father was one of the first persons ever to use Accutane when it first came out in the 70's for acne. He too suffers from spinal fluid leaks. That med was the worst mistake of my life. Now we suffer. I thinks it's too late for that.

[nikkiblu78]

great video - the more awareness the better .. hopefully we will find a cure one day ...