My name is Pam, and I was diagnosed the begining of October. It's all been sort of a whirlwind since.
I had decided to see an Opthamologist because of disturbances in my vision, who then hit the alarm button and sent me the next day to some sort of specialist who again hit the alarm button and sent me to Ohio State Medical via the emergency department. Both of whom said nothing more than I had papilledema/ swollen optic nerves. After the drs at OSU poked and proded and scared me senseless, MRI after MRI after CT scan they did a LP to find my pressure 44. The next day (10/06 ) they performed the fenestration and sent me home on diamox. Since then they have increased it twice, and added and increased lasix. My second LP was done 11/19 and my pressure was between 25-27 and now the side effects are catching up. The N.O. I see thinks that the relationship between my pressure being high compared to the amount of medicine Im on is not helpful and I am currently waiting for the phone call from the neurosurgeons office for my consultation. Until then I have opted to lower the meds inorder to control some of the side effects and "tough" it out through the holidays the best I can.
It is nice to know that the "cluster migraines" and all the little symptoms I've had forever and complained about seperately do actually add up, but holy cow. Part of me is still like what.. the.. heck.. just.. happened! Now Im focusing on shunt options and educating myself where thats concerned.
So glad I found this site,