Just Diagnosed With Pseudotumor Cerebri, And I Am Scared.

I was diagnosed today during a routine eye exam. I have been dealing with headaches for years, and a pounding in my ear that no one could ever tell me what it was from. Now I know, and I am super scared. I am overweight, and the doctor told me that he wants me to lose weight and see him in 6 months. If the optic nerve is still swollen after losing weight, then he wants me to go a neurologist and have a spinal tap done. When I heard spinal tap I almost fell to the floor. He also said if my headaches or vision got worse to see him immediately. I have never even heard of this disorder before today, and was just really surprised when he told me about it. I have a question for everyone that is dealing with this - does losing weight actually make this go away? I was going on a diet anyway, and will do it regardless, but I just want to know how it will help me when it comes to this. All I have seen on the internet is that losing weight will prevent it from forming. But what about people that already have it? I just can't imagine having a spinal tap done, that makes me so scared to even think about it. But I have noticed that my left eye has been getting worse and the headaches are more frequent. Not to mention the pounding in my right ear is getting louder and louder. I guess I should also mention that I have no health insurance. That makes it that much harder. I know I am rambling now, just really concerned right now. Any response would be great!
dreamhopelove414 dreamhopelove414
22-25, F
2 Responses Sep 25, 2012

Hey there,
I have had ptc for almost 9 years. When I was first diagnosed with it at the age of 16, I was so healthy, not a pound overweight and very active. Since then, I've gained quite a bit of weight unfortunately from my two pregnancies and last year I lost 60 pounds. During the last 9 years my symptoms have never gotten better. When I had lost 60 pounds I thought for sure that it was going to make a huge difference but it did not. So just from my personal experience, my weight has had no impact on my ptc what so ever. I'm scared too now at this point in my life. I don't have any health insurance, I've since moved cities from where I was originally diagnosed and I haven't seen a neuro in sadly 5 or more years. My symptoms are getting worse and that with a ton of stress and depression I know is causing me much more severe migraines. I still suggest losing weight as you plan to, because you never know what will make the difference for you.
Good Luck!

PTC IS SCAREY BUT DO NOT WAIT 6 MONTHS TO SEE A NEUROLOGIST I WILL TELL YOU WHY THE PRESSURE CAN KEEP GOING UP AND YOU WILL HAVE MEMORY LOSS I DO. I ALMOST DIED 12 YEARS AGO FROM THE PRESSURE BEING SO HIGH NOT TRYING TO SCARE YOU BUT I WOULD GO SEE ONE SOONER WEDNESDAY I WAS TOLD IT WAS RETURNING I SEEN MY EYE DOCTOR HE CONFIRMED AND HE SUGGESTED I GET BACK IN WITH MY NEUROLOGIST THIS WEEK COMING UP. TO MUCH PRESSURE AND YOU CAN ACTUALLY GO BLIND.
SORRY ITS IN CAPS BUT I WANT TO GET MY POINT ACROSS PTC IS NOTHING TO PLAY WITH