stressed..

I know I vent on here a lot it's kind of my safe space anyways. I just wanted to share my story so maybe someone could offer some insight.

i have always been overweight, since I was 10 years old

fast forward to when I'm 24 I got pregnant gained only 20 pounds but it was enough to give me a crazy illness. I was only 12 weeks pregnant when it started... I mean I had a headache for the whole 12 weeks but I thought it waS from stress... then I started loosing my vision, I mean like it would just go black for a few seconds maybe 10. I would get double vision, half my face went numb... I thought I was a crazy pregnant women lol. turns out I have a medical condition called idiopathic intracranial hypertension. which is when your body makes too much spinal fluid (csf) and it puts pressure on your skull/eyes. I've already had two surgeries for this both in hopes to save my vision. December 17th I had optic nerve fenestration which two weeks after we realized my eyes are still bad and this surgery didn't work.(they cut a piece of your optic nerve to let fluid run off your eyes) then two weeks ago they tried to place a stent in my head which didn't work. this illness I have they believe weight loss can help some. if I don't loose weight fast enough save my vision, I'll be forced to get a shunt... they will shave half my head place if and hope it works

I've known many people to need revisions some have had 10+.

I want to try and loose as much weight as I can but time isn't on my side. I see my neurologist in two weeks time for him to decide our next step. shunt or wait for gastric and hope I don't go blind 

I know it's impossible for me to loose the 100 pounds quickly alone(and keep it healthy) 

I have my first appointment with the nurse in 3 weeks for gastric. I hope it goes well and I can meet requirements.

I need to change my life this path I'm on is no good for my health. I don't need anymore health issues.I'm ready to get healthy and fit and be a 'normal' 25 year old! lol

i just needed to vent, I'm scared for a shunt surgery. I really want to try this first, but time isn't on my side.

thanks for listening to me ramble :) 

The likelihood of you getting fast tracked for surgery in time for you to lose the weight that quickly is not good.  Even with meeting the BMI requirement and 3 comorbidities, passing all of my pre-op meetings and requirements, my surgery was 18 months from referral to surgery.  Most bariatric centres offer an Optifast program (which although not ideal,  may be an option) that would be supervised and allow you to lose a lot of weight quickly.  You could ask to remain on the waiting list for surgery, but be losing weight in the meantime.  You would probably have to pay for the Optifast yourself (most of us did).  If you are lactose intolerant, they may allow you to use the cheaper Carnation instant breakfast.

If you are in the GTA - you may want to get in touch with Dr. Peter Goldfarb who offers Optifast http://www.optifast.ca/

HI Breuxo, 

While you wait you could try the Doctor Point program which is covered by OHIP. It is basically a doctor supervised program with regular follow up appointments/weighing. You eat low carbs, low fat, low sodium. It could be a good start while you wait for bariatric surgery.  Fingers crossed maybe you could lose enough wait to go into remission.  Have you had spinal taps for some relief? I wish there was something that could bring you quick relief. Once I was in remission I was extra careful about what medications I took, cut out as much aspartame as possible, avoided any processed food, and made sure I drank a lot of water. Nothing ever helped the headaches. 

I remember how terrible I felt every day so I really feel for you. I remember it felt like someone slammed my head against the wall. I was always nauseous. I would hear constant sounds in my ears like a bird cooing. My peripheral vision was blurry. I was terrified at the thought of getting a shunt or surgery. I am happy that it settled enough that my vision improved. I just lived with the headaches and nausea.

I think the Dr.Poon program would be a great start you would lose 2.5 - 5 pounds per week if I remember correctly. It is easy to regain once you stop but it would be good to get the surgery too. If you are up to it get out and walk a lot or swim. I found exercises that involved a lot of head movement raised the pressure in my head. 

I was diagnosed in 1997 or 1998, early 20's,  5 foot 2 and 170 lbs at the time.  I have fair skin, blue eyes and blonder hair. Apparently short, fair skin, and overweight are common with IIH.  I am curious if that describes you? 

Good luck and take care.

I am 5"6 very fair skin though. 

I have had spinal taps my pressure last time was 57. but I suffer from low pressure headaches for a week I cannot stand so we are only doing them if we need too. 

I meant Dr. Poon not point. 

I meant Dr. Poon not point. 

I hope you all realize I was just venting I don't expect to get surgery tomorrow. I'm hoping my neuro will be ok with me waiting for it. being hopeful I hope to have surgery next winter sometime. clearly if I can't wait and need a shunt I will go for that. just letting off steam.