Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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Brain & Nervous System
/ Pseudotumor Cerebri Support Group

New to IIH

kphillips
kphillips
It all started off with my vision problem! I'm a diabtic too so i felt maybe my sugar was too high! Out of my left eye there is a dark gray to blk patch that I can't see out of! That was enough to scare the mess out of me! Thank god i made an appointment! Usually when somethin is wrong with me I just wait to see if it goes away..I'm not the dr visiting person! Not this case! I thought inwas going blind! Well I saw the eye doc and he told me that I had papiledema. When he said it was caused from cranial pressure I flipped out! I started to see the neurologist n regular doc..They ordered a MRI along with the Lp..I hated that mess! My pressure was 35..I hope and pray I don't have to get a shunt! I have a very low tollerance for pain! I'm only 28 I don't want to deal with this n my life! I have 2 boys I need to focus on! I have no time to be stressing off of this,but still find time to! Is there a cure for this? Thanks!
deleted_user
deleted_user
Kphillips- you have come to the right group! Welcome. I am sorry you have to be here. To answer your question, no there is no cure for this at the moment. Certain things can work for some, losing weight for some helps, sometimes the meds work, sometimes it goes into remission. There are success stories out there. But they aren't on here, generally they have no need to. Just take a deep breath and try to relax. This group is awesome with any questions you have or if you want to rant. We don't all have the same symptoms, but we are all in this together. Hang in there!
deleted_user
deleted_user
Hello ,
I am glad that you made your way to us . This site will be very helpful to you . A good thing to do is look over past posts for information . Also ... go to www.IHRFOUNDATION.ORG for information and to sign up for the registry . Please remember as one of our members like to note ...there are success stories ! They are just not here on the computer ..they are out living !
deleted_user
deleted_user
Hi K. I just wanted to remind you that youre in control. Its your body, and you have every right to decline any test, procedure, medication, or surgery that youre not comfortable with. Also, knowledge is power. I believe one of the best things a person diagnosed with IH (also called PTC) can do is to read and learn as much as possible about IH and all tests, procedures, medications, and surgeries associated with it in order to make informed decisions about their future health care. Having a better understanding of what youre dealing with also makes it a lot less scary.