Hello to everyone out there from Texas. I'm Krystal. I'm 32 years old and can honestly say that I was diagnosed with IIH by accident. I have had "migraines" since I was 9 and my doctors have always told me that I was just going to have to deal with them. No amount of medication I tried would help. Nothing they did made any difference. Throughout the years, I was tested for everything from epilepsy to MS with no positive diagnosis. Each time, I found myself just praying for an answer, any answer. I was so tired of being in pain every single day with no sign of relief.
Fast forward a few years...I moved to a new town and found a new doctor. He kept seeing something strange in my eyes, but could not say for certain that I had IIH without an elevated spinal tap reading so after that initial reading, he dropped it. A year went by, I had a horrible migraine attack and ended up in the emergency room. The ER doctor did a tap where my opening pressure was 50. She is the first actual doctor that diagnosed me with IIH. From that point on, I have had several confirming taps and my nero-opthamologist also has confirmed it. I had VP shunt placement surgery on June 22, 2010, and have truly felt like a different person since then. I still have bad days, but not like I did. Now I just have to be mindful of the things I do and when I do them. I am confident that the shunt saved my life. Without it, I would not be here today.

Hi Krystal and a very warm to the group. How reassuring to see such a frustrating and worrying journey finally turn into a more positive outcome for you. It must have been so disheartening having doctors who couldn't give you a firm reason for your headaches and pain.

Thank goodness at times for ER, because sometimes they pick up what our own doctors don't. At least through them you finally got the treatment you needed, and therefore got you to the point you're at today.

Yes. It was so very disheartening to have doctor after doctor look at me and tell me that I was crazy. I had one doctor tell me after two visits with him that he could not help me anymore. It was at that point that I ended up at my current neurologist. I couldn't ask for a better doctor, but at this moment in time, I needed a fresh set of eyes to look at me to make my diagnosis.
I know that I am not cured just because I have gotten my shunt, but I am miles from where I used to be. There are days when I end up taking 10 steps back, and I am in a constant struggle within myself to be better than I was before but I know I can be. I just have to make the choice every day to not give up. IIH is not going to win this battle.