Hello, today is my first day here, and this is my very first post. I guess I'll start with a little about myself. I'm 5'9 370lbs(ish), a wife, and a mother of 2. A daughter who's 10, and a son who's 9. I'm a stay at home mom, not so much because I want to be but right now I don't have much of a choice. I've never been a thin person, but this is the heaviest I've ever been. I started really gaining weight about 3 yrs ago because I got sick. At the time I weighed 330 and I was dealing with ovarian cyst and it made life extremely painful for a while, so working out and even walking hurt like crazy. I spent a yr going back and forth to the doctor to get treated and finally ended up having a hysterectomy in July of 2010. Although I kept my ovaries the problems with the cyst seem to stop. I'd started working out again, and had begun to lose quiet a bit of weight.

By Feb of 2011 I'd dropped down to 287 and was starting to get my workout rhythm back. Sadly in May of 2011 I started to get really sick again. This time it was from blinding headaches. I found out I have a condition called Idiopathic intracranial hypertension. Basically it means the I have to much cerebral spinal fluid around my brain. Although not a fatal condition there is no known cure, and it causes a whole slew of other issues, one of which is horrific mind splitting headaches. So I was hospitalized for a week following diagnosis and then sent to a neurologist to start treatments.

By the end of the summer my weight had gone back up and my health had taken a drastic downward spiral. Medication treatments for my condition weren't working and the headaches had gotten so bad that I could barely function. By mid Nov I was sent to see a neurosurgeon to discuss surgical options. It was decided that he'd put a shunt in to help drain the fluid better and maybe help stop the headaches and other issues. So in Feb of this yr I had my shunt placed.

I'm now 2 1/2 months post op, and trying to get the weight off. Up until recently I was fine with everything, including the weight gain, because I knew it was beyond my control. Lately though it's just been one thing after another, and it's really starting to affect me. Constantly having old friends and family telling me how "big" I've gotten, or how "thin" I use to be. Or being told that maybe if I worked out more I wouldn't be sick.

I've stopped going to my doctor because the surgery didn't help and I still have horrific headaches. Before I got sick I use to work out 3-5 times a week and had a very active lifestyle. I danced, I bowled, and I went out with my friends.

Now I'm lucky if I get invited to go to a movie.

Hi, happy Tuesday. good on you that you decided to open up yourself like you did. That shows strenght to me and thanks for doing it. I am sorry to hear about your headaches, does it affect you when you start to do most activities like working out? Or is it all the time? Have you ever tried using resistance bands for exercising? What relieves the headaches? You should get a journal and start to right down things that you might be doing that might bring on the headaches frequently. It must be very deblitating, stress probably does not help either, are you on a proper nutrition plan/diet? I am not a doctor, but I have a couple in the familiy and dating a Trainer. So I'll ask him about ways to not aggravate your body to spur on a headache. I have a quote that I love. " It says when in doudt and worried, do the courageous thing" I think something like that, you are courageous for opening up about your self and for that reason I know you'll be ok

Hi, thanks for the welcome. The headaches are an on-going thing, there isn't really a "trigger" for them, they just are. There are things that they think can cause increased pressure in my head, but I've pretty much stopped those things. Certain medications, a high volume of vitamin A, head trauma, those types of things.

I work out despite the pain, mostly because I'm just tired of everyone telling me I'm fat and that all I need to do is lose weight and I'll be fine. The condition with my head, I've had since childhood, but because it's symptoms are often misdiagnosed as migraines, fatigue, stress, and a ton of other things, no one really paid attention. It took me landing in the ER and almost collapsing for them to think to check for it. At first they thought I had a stroke or a brain bleed because of how it all happened.

Hi fallenangel, I know it's a little late coming but I really hope you'll come back to this post and find me here. I had my lumbar puncture yesterday. Check out my diet blog. I've got IIH too. This is such craziness. We've gotta connect and support eachother. I'm looking to see if there's a weight loss forum for us, if not then let's get one started... I've been googling pseudotumour cerebri, iih, ih, since the neurologist said it with so much certainty on April 30 and we are out there. .. we just need to connect a little better.

i have ih too! im 23 and was diagnosed in october 2010. i fortunately havent needed a shunt yet but my eye doctor is pushing for an optic nerve fenestration since my eyes have changed 6 times in a little over a year. its nice to meet people who also have this condition

Hi b Rex, glad you posted! I've been on holidays. How is your summer going? It sure is hot here, 34 and I'm not used to that. I have my follow-up appointment with my neurologist tomorrow morning after all the testing, that's exciting I suppose' I've list about 20 pounds.(since end of March which is actually a month before I met him - we found out my mom had cancer and she decided to go sugar-free among other things so I figured I could do that too and that's when I joined this site).I'd already been struggling with binge eating, emotional eating, and overeating for like forever but last winter was the first time my FACE actually got fat and I decided to go on a diet . I had no idea it was also related to what I thought was time for new glasses!! I thought everybody saw stars!! I've been seeing stars since. .. well. .. the first time I remember was 12 years ago!

Hi. I just did a search on iih and found this thread. Hope you are doing well! I was just diagnosed with iih on Tuesday. My symptoms aren't too bad compared to others I've read about. I started getting vision problems this fall. I see a flashing dot once in awhile, I had tunnel vision a couple times for a minute or two. I've had some headaches but not too bad. My eye doctor saw that my optic disc was slightly swollen. Long story short, had an MRI (no tumor), had lp with pressure of 28 and was diagnosed.

Doctor wants me to go straight to getting a shunt put in . I was shocked. My symptoms aren't even that bad. I want to try diamox and diet first. I actually know someone with iih. She had almost exact same story as me but her doc put her on diamox and diet. She's now in remission. I'm going to switch to her doctor.

Sorry for long story.... I'd love to get a support group going on this site, but I wasn't sure how many of us are on here.