Pseudotumor Cerebri
 

:grouphug:Hello Everyone, I am new to the group, I was just diagnosed with pseudo tumor cerebri and I still a couple days ago and still can even get it straight in my head, don't understand it completely a lot to learn, I am confuse, afraid, feel lost, doctors have not answers and all I read from other people is more negative than positive, I know life will change and I need to face this with strong positive thought and do anything and everything possible to make my life easier, is not the end of the road here, so hopefully you guys can teach me, I don't want to get depressed it was scary enough to be blind for 2 days and not have no one to understand me or doctor to give me the right direction or guidance on what to do for a moment I felt I hated myself for what I had done to myself over the year, blame, guilt and shame , I am trying to figure and accept how am I going to deal with this, I need to know what can I eat, what to avoid, what to expect, I am learning every single new thing and the feeling with this medication I get nervous, I don't know if is ok or not, maybe I am panicking for nothing, please help can you share your experiences with me. Once you are diagnosed you cannot be cured?

Nice to meet you!!
 

Hi Babyslilian,
Welcome to the NeuroTalk Support Groups!

As well as checking in at the Forum that Darlene has left you, you may want to try the whole forum Search.

The Search feature is near the top of the page in the row under the NeuroTalk Logo.

I just did a search there for "Pseudotumor Cerebri" and there are many posts. Not all of them are recent but there may be some information there that may be of help to you.

I wish you all the best.

I have pseudotumor cerebri (intracranial hypertension) too. I actually got a VP shunt put in a week ago. I felt better for a few days, but the past couple have been pretty miserable with headaches and being nauseated.

Because I'm new to this too, I don't have much figured out. I was put on diamox, but it didn't work. I've had four LPs already his year (and that was true a month ago). LPs were the only thing that helped with the pain and vision and hearing issues. Now I have this shunt and my hearing and vision are ok, but my headache is simply horrible.

I'm wishing you a painfree day!

Hi to you as well, amii91581.

Welcome to the NeuroTalk Support Groups!

:Wave-Hello:

Hello. I have been diagnose with pseudotumor cerebri over 23 yrs, I was fine since 2007, since I had been diagnose with sleep apea and sleeping with a CPAP. When your brain is missing oxygen it swells the brain cause the retention of wather. But now since 2007 it's again starting with pressure on my inner left ear, numbers on the right side of my face, with vertigo episode. The ORL say I am ok with vertigo, but I have severa headheachs, numbers my whole face, my vision is not has bad then when I was frist diagnose at 23 yrs. I now have arthrosis in my neck, cervicales and hernias. I am seing my optho-neurologist next thusday to see about the optic nerves not being affected and the neurologist on March 25 for numbers, dizzness etc...I have been since oct 12, 3 times on disabilty, cannot work anymore on the computer, cannot concentrate, severe heachaches, dizznes, it's very scarry. I do not have a shut, yet which I was trying to avoid all of these years, I am scare for nerfs damage. i FEEL VERY GUILTY because I am severly overweight 100 pounds at 5'2, maybe I shoud get the operation for the lapband for my stomack to help with the weight loose.

Great to meet you!!
 

Hi my good friend just experienced the same thing in the last 6 months and found out it had some strange correlations. If you would like to email me? I have a couple questions.
T2U

Hello & Welcome!!