Lose Weight or Lose My Vision (IIH)

Ursa_Median

I know I have been needing to lose weight for a while. Despite that my blood stats all look decent, I know that long term excess weight has risk factors... Long term- So there has never been a huge push for rapid weight loss [until this last month].

During the month of Feb ’18 I developed vertigo which then became progressively worsening vision (my eyes just couldn’t seem to see things at a distance properly) and frequent to non-stop headaches. A succession of very quick referrals linked me to a neurologist at the beginning of March. Brain scans came back normal, but a lumber puncture showed an extremely high level of cerebral spinal fluid. Apparently the pounds that I accumulated during my first half of my grad studies was enough to cause or trigger a fluid/pressure build up in my brain. I was diagnosed with a rare condition* that occurs most frequently in overweight females in their child bearing age.

My medication is a diuretic that helps stabilize the condition, but ultimately weight loss is the best way to reduce and potentially eliminate symptoms. If my weight and this condition is not managed my optic nerve can become permanently damaged and can potentially result in blindness. I am not going to let that happen. Here are my stats:

SW: 177
CW: 171.2
GW1: 165
GW2: 149
Ideal W: 130


*If anyone else has also been diagnosed with Idiopathic Intracranial Hypertension, I would be very interested in learning about your weight loss strategy, symptoms, and side effects of the meds! Thanks,


'Nikita'

Hollthulhu

Hi there, I also have recently been diagnosed with IIH (day after Xmas '17). I've had all the symptoms for many years, but doctors never took it seriously until I started reporting pain with my eyes (which possibly isn't related). They also diagnosed me with ESS (empty scella syndrome).

I take Diamox, and have been since January. I no longer like the taste of any carbonated drink, and find the bubbles to be very sharp, like needles. Spicy food seems a little more spicy, too. I also continue to suffer from tingling and pins/needles sensations in my legs and arms (mostly my feet). It is mostly just very annoying, but sometimes painful. Sometimes I get very dizzy. Other symptoms I have recently acquired include muscle weakness, muscle spasms (my legs spasm almost all day), and heart palpitations. I have been trying to get my doctors to test me to see if my nutrients are out of whack, but they are reluctant to do so. It's very frustrating. Lastly, I've noticed some symptoms that might indicate I've formed a kidney stone, which is no fun.

I have always had issues with my weight all my life, and I'm not sure losing it will fix my IIH symptoms, but it's worth trying. I am morbidly obese, at roughly 295lbs, 5'6". Being on Diamox and having IIH present its own issues with weight loss, as one can gather from the side effects and symptoms. Before my diagnosis, I was going to go on the popular keto diet, but I feel that is a very bad idea, after doing some research and putting my current health problems into the equation.

I really do not like taking Diamox, but it has greatly reduced my headaches, migraines, and vision trouble. I still have eye pain, but I've had every kind of doctor I could think of to look into it, (my primary, nuerologist, optometrist, nuero opthalmologist, and otorhinolaryngologist) and all are stumped.

I wish you the best of luck! Holly