My Stupid Brain Thing

*** DISCLAIMER ***
I am not a doctor. None of the following information is to be taken as medical advice. This is simply an account of my personal experiences.

Timeline

• 6 June 2011: I meet with an optometrist after breaking my only pair of glasses. After a routine eye exam, the optometrist refers me to an ophthalmologist for further testing. "Elevated optic discs" and "possible brain tumor" were all I took from the conversation.
• 9 June 2011: Several tests are conducted by my ophthalmologist; unable to make a conclusive diagnosis, she refers me to a neurologist. "Brain tumor" and "papilledema" are the key words for this meeting.
• 13 June 2011: First meeting with my neurologist. Sends me for an MRI which comes back clean. NO BRAIN TUMOR.
• 15 June 2011: neurologist performs a lumbar puncture to confirm the diagnosis of Idiopathic Intracranial Hypertension (Pseudotumor Cerebri). My opening pressure was 32. I began a course of Diamox (1000mg-1250mg daily).
• July 2011: follow-up with my neurologist shows minor improvement in my bi-lateral papilledema, continued treatment with Diamox. The side effects of the Diamox are almost unbearable and after months of barely tolerating it, I decide to take charge of my own treatment.
• 10 October 2011: After months of conducting research, reading every medical journal, article, educational paper, personal testimonies, blogs, etc., I decide the only way I was going to get better is to lose weight. My first day of exercising was exactly one week before my birthday, it was a gift to myself. That first workout: ten minutes on the elliptical (it was all I could manage).
• 3 November 2011: follow-up with my neurologist, I have lost 8 pounds at this point. Doc informs me that weight loss is the only way to guarantee I'll get better. I resolve myself to lose as much weight as possible. Goal: 110 pounds (no timeline). I came to this conclusion taking into account my starting weight (292.0) and a decent BMI for my height with a final goal weight of 180 (I'm 5'9" with a curvy build).
• February 2012: I introduce running on the treadmill into my exercise routine. After several injury-filled weeks, I have to stop running temporarily to heal. Follow-up with my neurologist shows that the Diamox is affecting my kidneys and putting me at risk for metabolic acidosis; my daily dose of Diamox is slashed and Lasix is added to the mix.
• April 2012: I have successfully lost 50 pounds!! Almost halfway there :)
• 3 May 2012: Routine follow-up with my neurologist yields exciting news: doc is comfortable enough with my progress that she feels confident in saying that I could stop taking the meds by the end of the year. She also says, with continued weight loss, I could cure myself.

IIH on Wikipedia

Idiopathic Intracranial Hypertension (IIH), also known as Pseudotumor Cerebri (PTC), is a neurological disorder that is characterized by elevated pressure inside the cranium. Its symptoms mimic that of a brain tumor: headaches, nausea, vomiting, vision changes. If untreated, IIH can cause vision loss, though it can be reversed with proper treatment. This condition is most common in overweight females of childbearing age.

Increased pressure in the area surrounding the brain puts added pressure on the eyes, specifically the optic discs and optic nerves. Swelling in the optic nerves is known as papilledema; it can vary in severity, but it's almost always seen in those suffering from IIH.

Several grades of papilledema. At the onset, my worst grade was a 2, now my eyes are mostly normal.

Despite the word "tumor" in the name Pseudotumor Cerebri, IIH is marked by the absence of any tumors -- MRIs must be clean in order to consider the diagnosis of IIH in a patient.

All clean! Note: not my brain.

A final step in diagnosing IIH is the lumbar puncture, also known as a spinal tap. Opening pressures above 30 are considered to be "elevated" and are a sign of increased intracranial pressure. 20 is optimal, 25 is acceptable for overweight persons. My opening pressure was 32.

No, not this Spinal Tap

My story is a unique one: I barely noticed the symptoms of IIH when they were there, I did not seek out a neurologist on my own, and I probably could have continued to live with this condition without it seriously affecting my life. Others are not so lucky. This condition is characterized by serious headaches, often debilitating; although I suffered from headaches now and then, it was never anything I couldn't handle with Tylenol and rest. Nonetheless, I am eternally grateful to all the doctors who have treated me over the last year and for giving me the motivation to lose weight and make a better life for myself. No one knows what causes IIH and there are no known cures, but serious weight loss has proven to be the best resolution to the symptoms associated with this condition.

So join me on my quest to kick the meds, lose the weight, and discover the rewards of healthy living.