IH and Me
I went to what I thought was a routine eye exam (with my 4 year old son in tow, he wears glasses too) on Tuesday [March 4 2008]. The optometrist FREAKED OUT and started talking about brain tumors and MRIs and spinal taps in the middle of my exam. I did have an MRI that day, and a day and a half later, was told that it was 'clear.' I was then scheduled for a spinal tap that Friday morning. At that point, I had no idea what was going on with my own body, but according to local doctors, it's this pseudotumor cerebri thing... I had been going to my PCP for headaches for a few years—and was being given migraine meds (which did NOTHING) and thought I might be having some hormonal issues...but then the eye exam revealed papilledema, and everything sort of fell into place. According to Dr. W, the opthomologist, the nausea, vomiting, diarrhea, headaches, blurred vision, etc, were all symptoms of either a tumor (which we know now I don't have) or IH...
After a harrowing couple of days wondering what we would find out, Friday, and my first lumbar puncture, finally arrived. I don’t think I’ve ever been as happy to see a needle. The doc said my opening pressure was 51, which, as he said was more than twice what was considered normal for my 'size.' (He said normal was 18.) They drained two huge tubes of fluid (no idea how much exactly) and said that would help with the headaches for a while. They put me on Diamox (1000mg/day) too...and they said I need to lose 10-20 pounds. I asked if he knew of any studies showing significant improvement with weight loss, and he said he'd ask his colleague--apparently he didn't have extensive experience w/PTC but this other guy in the clinic does, so--and he'd get back to me on that. They did 'officially' diagnose me with PTC...well, the doc said 'beigin (sp?) intracranial hypertension'...but I dislike that name.
I have been blessed with a team of doctors who, while they may not be the foremost experts on IH, are doing their very best to fight for me and doing everything they can to meet my needs and make me feel better. They are always there for me when I have a question, which is often. As it is a learning health facility, there are interns everywhere. I feel like I should allow any and all of the interns and students who want to either see the papilledema or ask me questions to do so—if for no other reason than that they will have *something* to call to mind should another IH victim come to them for help later on. Who knows? They can’t learn if they don’t see/hear it.
As time goes on, and I begin to get a little more used to life with IH and Diamox, I find out new things about myself, like my newfound sensitivity to temperature changes, strong odors, bright or flashing lights, and other sundry and irritating things. Losing weight seems like a bit less of a battle since I can no longer drink soda (to which I was formerly addicted in a bad way), cannot really eat much at once, and most things I shouldn’t eat (like sugary syrups) taste like they’re filled with minuscule bits of metal or some other foul and chemical flavor.
Just like anyone else, with IH or without, I have good days and bad days…I just measure them a bit differently. On good days, I don’t have pressure spikes that cause my personality to change in an instant, I don’t feel like my body has been taken over by an alien being, and I don’t feel useless. I can speak in complete sentences and even remember where I am going or what I am doing for more than three minutes at a time. On bad days, I lash out at loved ones or even strangers for no real reason, eat everything in sight or nothing at all, cry for no reason and smile in the next breath, even blank out altogether, impugning my own intelligence. On any given day though, I love both my sons unconditionally, adore my husband, and do my very best to do all the things I did before IH chose me. I am still me on the inside, even when it doesn’t show much on the outside. I will still fight tooth and nail for any cause that stirs me, including my right to adamantly refuse to accept that my weight is the only reason for my IH diagnosis.