There are limited doctors who understand intracranial hypertension. I was dealing with this process for about a year and a half; diagnosed that is anyway. My condition took a huge change with extreme vertigo, hand tremors,memory issues and a vast array of strange symptoms. Before April 2010, I had lost about 4 whole months. I lived day to day; but if it wasn't something huge, I wouldn't remember it. I had seen several doctors in my area; but none of them wanted to help with fixing the issues. Most told me that because I didn't fit "gold standards" that it was not the route to take and ultimately told me that this was my life and deal with it. It was in July of 2010 that I contacted the Research Foundation. I left a message and figured well, i probably won't hear back. Within a day I had a message on my voice mail with a number to call. I spoke with Dr. Tanne for over an hour and a half. It was such a relief; he validated what I was experiencing and directed me to Ohio State to see Dr Katz. Best phone call ever ! He gave me the key to unlock that huge locked door in front of me.
My daugher has IH and suffered for 5 1/2 years. The IHRF Foundation has been a great asset for us. They have wonderful people that can help us to have a knowledgable person to talk to about what is happening with our daughter. The support team is awesome.