Not Quite Like The Rest...

I am 22 years old and I was diagnosed with iih almost 2 months ago. I work at an eye doctor so when my vision began to feel funny, I had her look at my eyes and she noticed my discs were swollen so she got me an appt with a local specialist that day. They were wonderful and got me an MRI scheduled that day as well. They then referred me to a neurologist who I see regularly. I am taking Diamox like most of you, except I only take 500mg a day. I have the tingles but that's my only real side effect. My doctor has also prescribed me 2 medications for weight loss. Between the meds (Phentermine and Zonegran) and diet and exercise, I have lost almost 25 pounds and most of my symptoms have gone away. I feel amazing. I was and still am overweight so I still plan to continue losing weight in hopes of preventing the symptoms from returning soon.

I also received a lumbar puncture but had no complications with that either. My pressures were definitely high enough for my Dr. to diagnose me but I had no headache or pain afterwards.

I also have no headache as a result of my iih which I know makes me lucky. I really feel as though my weight loss has been a huge component of my healing process!
22-25, F
2 Responses Jun 24, 2012

You are so blessed to have found out as soon as you did! Not many are as fortunate. It only took me the 3 months from the time my symptoms started to get diagnosed, so I feel very blessed as well. I am on Diamox, 500 a day also. I was not too much overweight when symptoms started 168 but have since put on almost 15 to 20 lbs. just because I spent the whole summer almost bed ridden. About a year ago tho, I was at my highest weight of 207, so the weight fluctuating around could not be helping my situation. I just need to maintain my goal if I can get there and stay there...Then maybe the symptoms will get better....Glad you are doing well :) Kim

Thats great. I had a hard time losing weight because I had so much pain. I was taking the diamox 4 times a day at 250mg. It sounds like you caught it early and that's great. I had to share my story about starting the body by vi because that took the pain away. I was just doing it to maybe lose weight. So to have no pain, and to be taken off all meds, and to have lost over 60lbs. It's amazing. So I would recommend if you continue to have pain to try this. My neuro is actually looking at it as a treatment. If you even want to see or check it out you can but my goal is to atleast share what it did for Oh, Congrats on your weight loss. This disease really makes you be responsible for your body. I wish you the best of luck on your recovery. =) Jamie