When you live and work in sunny California, having migraines is normal.
But soon, I started having episodes where I would briefly lose my vision. I quickly realized this was not a normal migraine. Thank God it was not permanent. I scheduled a visit with my doctor, which resulted in seeing an ophthalmologist. Several tests later he indicated I may have papilladima.The next step was a neurologist and am MRI. In the follow up visit for MRI, the doctor gave me two shots in the back of the head and sent me home with psychotropic medications. The neurologist said it was all in my head. And I was told that my peripheral vision disturbance was just my eyelashes, and he suggested I cut them. (Just pause, and let that sink in.)
The debilitating pain, migraines, and vision disturbances continued. What followed seemed like thousands of visits to the emergency room - with nausea, dizziness, and unbearable pain pulsating in my head and neck. The pressure was so high I couldn’t see, or keep my balance enough to walk straight. I remember crying and feeling so hopeless. I was broken. Doctors would just do the routine ER tests and discharge me with the same diagnosis every time: “stress and anxiety.”
I lost faith in the healthcare system. I felt dismissed, insulted, and hopeless.
I went back to the ophthalmologist. He looked at my optic nerve, and he suggested I may have IIH, idiopathic intracranial hypertension, at which point he referred me to a Neuro-ophthalmologist. I was devastated at this point. I had lost my job - and my medical insurance. My visit with the Neuro-ophthalmologist was very emotional and overwhelming.
After several tests, he said "your optic nerves are extremely swollen. I don’t want you to loose your vision. You need a Lumbar puncture." The following day, I was admitted into the hospital. The doctor asked me if I could stand and take a few steps. He looked at me and said “Don’t worry, I got you. I have an idea what’s wrong with you. We will run lots of tests until we find out what’s wrong and give you the best care.”
I was in so much pain, scared, crying and overwhelmed. When the results came back, a team of doctors diagnosed me with IIH, pseudotumor cerebri. That was the happiest and best news. After two years, I finally knew what was happening to me, and I was not losing my mind. It gave me the validation I needed.
Then the reality hit. I’ve been diagnosed with a disease that has no cure, and its cause is unknown. So the nightmare continues. I lost everything, including my health. My second lumbar puncture gave me more pain than relief.
I followed up with the Neuro-ophthalmologist, and he started me on 1000mg a day of Diamox. He warned me that if the medication doesn’t work, the next step is brain surgery. I left the doctor's office with a lot more tears, and eight-hundred less dollars, for the visit.
It has been a long, scary road. But I have faith, and I am praying for a cure. I never say walk a mile in my shoes. I just say, “just spend 10 seconds in my head, and you're gonna freak out."
But every journey of a thousand miles starts with a single step. And this is my step, on the quest for more answers, and the pursuit of a cure.
Comments