Pseudotumor Cerebri Support Group

Good luck Crystalle, I hope this works, my fingers are crossed and prayers on top of that. So glad you are all ready feeling some improvment, Blessings, Jazzy

Thanks Jazzy!!! U R always so sweet and lift up so many ppl on here. I have tried it all and this was last, so here goes...
I pray this helps. I am loving my time between the neck pain and headaches. My quality of life is already improved and you realize that it is NOT NORMAL to be in pain daily, despite how some doctors may make you feel. Thanks again Jazzy!!!!

Crystalle
I've lost around 75 to 80 pounds now.. My symptoms have gotten better, I wouldn't say I am cured quite yet but I believe it's because of the way I lost weight. I felt anorexic for months, diamox of all medications had that effect on me. I went for my physical this year after losing a great deal of weight and I had not lost the body fat. It's crazy.. I am half the size, I appear tone yet I still have about 40% body fat. I am now working on the body fat, eating lean meats etc.. I do believe weight loss can help with this illness if not completely cure it. I know my hormones are all over the place and weight loss helps with that. So... I expect to have a ptc free future, just like you.

I wish you luck
make sure to exercise so you can lose that body fat too. =)
Betty!

Hi crystalle, I just wanted you to know that a family friend of mine was dx. with PTC and she lost weight and her PTC went into remission. So that said, never give up hope, but either way you will feel so much better and improve you health over all. I'm in awe of you, Rock it out! Blessings,Jazzy

Betty and Jazz, you guys are so uplifting!!!! I am so happy to hear both stories. I want to be a success story on here, especially when we hear so many sad ones here. I have a shunt, did the diamox, nothing works. I just want a pain free life. My NS sucks, my Neuro. rocks. He helps best he can with the nerve blocks. I guess with those and weight loss, hopefully i won't be worried as to if this shunt is working like it should or not.
I walk a mile at lunch. with a 10 month old, that is all i can get, but i am so proud of that. I know that weight loss doesn't help everyone with this awful disease, but i hope it can help some and if some one reads about my udates and it helps, it will all be so worth it. THANKS YOU GUYS!!!

Hey

do you feel better since you started walking?

Crystalle
I was just reading about how fat affects our hormones and all the reasons why. I will skip all the details unless you want to read it yourself then I will locate the link.
Basically estrogen is the problem. And by eating alkaloids you can combat the over production of estrogen, (which is one link to ptc, researchers think).
Garlic, broccoli, cauliflower, cabbage, onion and Brussels sprouts contain an alkaloid called Phytonutrients.This is suppose to combat the "over production" of estrogen. High fiber diets have also been proven to decrease the estrogen levels.

I don't know if this will help ptc or not, but I am most certainly going to add these foods to my regular diet. Too much estrogen is not a good thing regardless if you have ptc or not. =)
Here's to getting well soon.
Betty!

Did ur ns put u on steroids if so did it delay ur lap band surgery

I have been walking for sometime and yes, it really does help. I have lost about 30-40lbs and i know walking was a big part of that. Most of the weight loss was before the surgery though. The surgery is gradual and i did a very strict diet to shrink my liver. CONGRATS loosing 80 lbs!!!! that is HUGE!!!

i am afraid that i doubt the too much estrogen since i rock side burns LOL! (I have wondered if i have PCOS) If anything i figure I have too much male hormones. I suppose too much estrogen could happen though. Weird, everything is weird.

CARYNW
Sweetie, My NS has done NOTHING since slapping in my shunt 3 years ago. He has never checked it, nothing. That is part of why i had this surgery. No other NS will touch me and so I am trying to remedy my symptoms best i can. I felt that by loosing weight, maybe i can eliminate some of my symptoms. My NS feels that as long as there is no papeledima (SP?) there is no need to check my shunt. So nope, no steroids for me.

Crystalee
The side burns made me laugh, I needed a laugh today.
To be honest I am not positive it's estrogen, but as I was reading I ran across a few things I have gone through since being diagnosed with ptc. I had a mammogram done which led to two biopsies, Thank God I was only found to have a couple of fibroids. But that is a symptom of too much estrogen. Being told that and being told ptc could be caused by hormones just makes me go hmmmmm. I have other signs of too much estrogen also. My gyno wanted to put me on natural progesterone to level it out because she believes I am producing too much also. Of course I didn't even ask the NO I've already been told hormones are the worst thing you can do for ptc.
It can't hurt for me to try it. I also know I need to get some sort of exercise in besides yoga to balance my hormones and to help with losing body fat. If only I felt like doing it. lol

Good luck with your weight loss =)
Betty!