New Diagnosis

By KateDekoski



As those of you in the closed online support group may remember that on July 5th I spent a whole day being evaluated at a headache specialist’s office. The diagnosis they gave me at the end of that very long day was Benign Intracranial Hypertension, and even though I didn’t know anything about it I got excited because a doctor was recommending treatment that would allow me to have less headaches and a more normal life. A life like I used to have, it was a long road to get to diagnosis I had been having symptoms for so many years and everything was attributed to my shunt.

New Hope

The diagnosis of Benign Intracranial Hypertension gave me so much hope, I was validated! What I was feeling was real and better yet there was a treatment I could start! I had to wait for my Neurologist to prescribe the meds because the specialist I had seen was just a consult and thus they did not prescribe me any meds. So when I finally saw my Neurologist at the end of July I started Diamox 250mgs BID. Here I am about two weeks after starting it and I feel so different. My headaches aren’t as bad or as often. I still can’t lay flat on my back but maybe in time, GOALS! I feel like I have been given a second shot at this little thing we call life!

New Life

I feel like I have a new life, even though I am still working on getting the rest of my body in order. Just saw a new doctor the other day and we have a plan of attack to figure out what is going on with me… Anyway that’s small potatoes compared to how I feel right now and if the other stuff doesn’t get totally figured out right away I’m completely fine with that. It’s just so good and so amazing to have my life back from what it had been where most days were spent in bed trying to survive my days. I’m so happy those days are gone and now I can be me, or rediscover who that really is…




(For more information on Intercranial Hypertention, see the National Eye Institute at:


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