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Home >> Diet Forums >> psudo tumor

psudo tumor

April said: "I would like to know if anyone here has ever heard of whats called, idiopathic intercranial hypertention or for short psudo tumor? Its when your body produces too much spinal fluid or your bodies ability to get rid of those fluids is shut down. Doctors dont know why but usually women around child bearing age and who are over weight are candidates for this disorder. I have this disorder and it only flairs up when Im over weight. Ive had to have countless spinal tapps. The problem with this disorder is that all the spinal fluid gets trapped in the head causing pressure around the brain and behind the optical nerves. A person left untreated can go blind. Anyone else with this disorder?..................Swimming in own fluid,April :rolleyes:"

April said: "Hi there! Well I went to Seattle Washington to see a specialistabout two years ago and basically he told me to lose weight. Ya, all that $ and he tells me to lose weight. Any way tell her to look up Idiopathic Intercranial Hypertension on the internet. Headaches were one of my symptoms because exess fluid around the brain causes headaches. Theres only so much room in your skull for exess fluid. The doctor told me that they dont know what causes this problem but if it is left unattended a person can go blind, and I mean blind as in not getting your sight back ever kind of blind. Very scary!!! I also noticed that I had a couple gray spots in my vision that didnt go away. But on the bright side when I lost 60 pounds it went into remission. So somehow extra weight has something to do with it. Tell your friend to get in to see an optimologist. They will look at her optical nerves and see if they are swelled. If they are swullen then that is a good sign that she needs to get in to see an Neurologist. Let me know how shes doing, thanks...April"

seminolegurl said: "Hello April, I was diagnosed psuedo tumor cerebri back in 96 as complication to meningitis (not the actual cause). At the time I was in the army and in good physical condition. Drs had no clue how or why I actually got either. The meningitis was misdiagnosed for over a month and ended up in a coma(in and out for 24 hour period). I was in the hospital for 10 days and the day before I was released, I started to notice I was having in double vision. I was immediately seen by a opthamalogist. PTC was discovered. However, I am one of the few that ended up with major long term side effects of the illness. I have been in remission since 97, however, I have short term memory difficulty and some long term memory loss. I also am 20/400 in my right eye due to the permenent damage of macula and optic nerve. My left was 20/15 at the time of illness but has worsened 20/30.(compensating for the other eye). I have others but those are the most prominant. I was sent to several hospitals at that time and was a canidate for a shunt and or optic nerve(?) fenestration. But drs decided against it (THANK GOD) and I have been STABLE since, even with the weight gain of a pregnacy and inability to excersize for several years after words. I am now able to, to SOME extent but you won't see me doing any 5k runs any time soon :) If you would like to talk about it, you can email me or post. I came on this forum just to check it out but I had responed to your post first!"

April said: "Hey nice to hear from someone else who has had this condition. Im not sure why I got blessed with this but right now Im in remmision. I've had several spinal tapps in the past and they were'nt much fun. Im worried because I've gained back alot of the weight I lost and Im afraid it will come back. So I've decided Id better get my butt in gear and lose the weight again. Did you ever see a neuologist? ...April"

rockprincessFF said: "My apologies April, but I've never heard of it. :("

seminolegurl said: "April, Sorry it took so long to get back with you! Yes I have seen several different neurologists.While the illness was active they had me on Diamox(a diuretic) That is some nasty stuff. But since remission I go annually just to see if I am still stable. I know how you feel about the LP's, I have had 15-20 of those things. I think I would rather be torchered(hehe), especially the time I had a Dr. hit a nerve several times in one try. I thought I was dieing. I have not had any lapses, luckly, with my wieght gains, but I understand your concern. Everyone is different. I would not wish PTC on anyone, especially a second time. I am trying to find a couple of websites that really helped me understand what I went through at the time. I think they would be very helpful to you too. Dr.s really know so little of the illness. I'll try to get back with you soon."

Schmims1 said: "[COLOR=DarkGreen]Hi everyone, I was diagnosed with BIH/pseudoyaddayadda almost 4 years ago. For those who aren't sure what it is and are curious about it there are (incredably) quite a few sites with very accurate (at least up to the present) information. Normally the symptoms present themselves in overweight individuals, women esp... but can be caused but other things as well. Mine occured apparently as a result of using the birth control pill. (Caused some of the veins in my brain to clot...not nice!) The headaches varied from a heavy/clouded feeling in my head to phenomenal migrains that even demerol couldn't cure. my stomache would also flip (like when you are in an elevator), I heard a whooshing in my ears, like the heartbeat you hear during an ultrasound, numbness/tingling in my face and extremities, vision problems (odd whitish shapes in front of my eyes that wouldn't last long/blackened vision when I stood up too quickly) among a ton of other random and frightening things. I advise anyone who has been told that they have it/thinks that they might have it to have a spinal tap done to measure the pressure and discover the cause. A CT scan wont show anything but an MRI (usually with the Dye) might help. No joking, this is a horrible thing to go through, with possible permanant vision impairment. I have been in "remission" now for about a year and am now just wondering if I am having some of the symptoms again... maybe, maybe not... Oh yah, the "cure" for me was a medication that is normally given to extreame mountain climbers, to slow down the production of spinal fluid...that an a couple of sp/taps. (not fun, but worth it) Good luck to you all... Jennifer"

helplesscase said: "No, i've never heard of it either."

UniqueMystique said: "A friend of mine has been told that her migraines are the result of a 'psuedo tumor'. She's been told that there's nothing that can be done for her...just to suffer through the headaches. They've never done taps on her or anything. She's extremely overweight too. I'd like more info if you have it, April. It might help her. :)"

UniqueMystique said: "She has seen a neurologist....he told her that her migraines were because her brain 'thought' there was a tumor and her body is trying to fight it....hence the migraines. I will pass this information on to her though....this might be something that they overlooked. :) In case there are those that don't know what "pseudo" means, it means "false". So in other words....there is no real tumor."

spectrachic311 said: "I've heard of it, but I didn't know people could get it. It's pretty common in certain breeds of dogs. Most of the time people wouldn't know the dog had it and a lot of times the dog would go blind and/or have problems with equilibrium, etc. And probably doggie migraines as well :) The main thing that's always suggested is to keep them at an ideal weight so they don't aggravate it. It sounds like a painful disease though. It's kind of good motivation to keep the weight off, I suppose."

ddakanana said: "Hi, I too had a similar experience. I was told that I had viral meningitis, given a series of spinal taps. I had not fever, no stiff neck,ect.. the only indication was the headache from hell. I have often wondered if I ever had the meningitis as all. After months of suffering. I draged myself to the computer, by this time, I was seeing a nero and taking percocet by the handful. So it was not as easy feat. I happened across a site explaining PTC. I knw that that is what I had. Although I only told me hisband. I was fearful that my doctor would think I was crazy, I felt like they suspected drug addiction as it was. Then, I had a really bad night. and my husband took me to the hospital. It was an ER Doc that came back after another spinal tap and a look at my eyes that came through the door and ask if I had ever heard of PTC. I was so relieved, It awful when your are "happy" to have a disease, but after so much suffering, you become desperate for an answer and for treatment. That was february of 2004. My first headach came around October 2003. I was given 80 ml of oxycotin per day and diamox. I have had some instances where I had a headache that tylenol would not fix and my vision became blurry. Each time I took the diamox and it went a way. About 3 months ago it happened, and I was at work... I panicked. I left work in tears and came home for my diamox. I have it in a pill keeper on my key chain now. Because this disease is unknown to most and often occurs in overweight people. No one understands or seems to care to try to understand the devastation that it brings on a body. It was comforting to read stories about others that have it.... To April... have you ever entertained the thought that it was PYC all along and NOT meningitis?"