Three years ago today was one of the scariest nights of my life.
I was sitting in an ER room looking at my husband Tim. Earlier that day we had been told it was a possibility that I had a brain tumor. So after a failed lumbar puncture resulting in a successful one under Fluoroscopy, a CT Scan and hours of waiting on empty stomachs we were relieved to hear that it was only this condition called Pseudotumor Cerebri or Intracranial Hypertension.
It started with small things. Loss of vision if I stood up too fast and this whooshing in my ears when I lay down to sleep at night. They told me that if I could lose weight that I could send it into remission and I would be saved the headaches and increased vision loss. I was prescribed medicine that was to help with the headaches, whooshing and vision problems and as of today have 4 prescriptions my IIH and its symptoms.
I broke my foot in the summer of 2011 and instead of losing weight gained about 20 pounds. This really affected my IIH. My vision started getting worse and by the winter of 2011 I had to have surgery so that I wouldn’t go blind.
Thankfully my Optic Nerve Sheath Fenestration was a success and my vision is the same as it was before my diagnosis.
I continued to try and lose weight to send my IIH into remission but even with my vision saved, the headaches progressed and it became more and more difficult to even walk my usual 45 minutes at work.
My weight loss staggered and in December of 2012 I decided that I did not want to have VP shunt surgery. It was too invasive, I had seen too many people that I cared about in the IIH community have negative and life threatening side effects from it and that it was not worth it for me personally.
I decided I would have weight loss surgery instead. It would take care of so many health issues, but most importantly it would set me on the path to send my IIH into remission. I would continue my efforts to lose weight on my own until my surgery and work with my neurologist to ease my headaches.
I have seen my neurologist and the new medication I am on for headaches makes me pretty nauseated so I have now been prescribed another medication to take for the nausea. Unfortunately the side effect of that medicine……is headache.
The new medication helps enough that I can walk a full hour at work and am not in as much pain constantly as I was before. I am hopeful that this will allow me to continue losing weight and lessen my symptoms more and more every week.
I see more and more people being diagnosed with this condition and have even seen rumors that former senator Hillary Clinton may have also been diagnosed. I hope for her sake it is a rumor but for the IIH community and research it would be a huge boost in research and grants.
That being said, I do not wish this condition on any one. Even when I lose weight there is no guarantee that I will go into remission and I will live with this for the rest of my life. We have to be strong and make sure not to let it define us but push through and just do the best we can with what we’ve been given.
Three years down, a lifetime to live.