A little over one year ago, I was diagnosed with a rare neurological disorder known as idiopathic intracranial hypertension (IIH for short).
At the time, I was having dizzying, blinding spells up to 20 times a day that were lasting anywhere from 20 seconds to a minute. They had started several weeks (maybe even months) before…but had just slowly built up in intensity. I think that since they had built up so slowly, it took me longer to realize “THIS IS A PROBLEM”. My awesome opthamologist (Dr. Bradley Kwapiszeski at Heart of America Eyecare) is the one that immediately recognized my symptoms and set me on the right path to get properly diagnosed and rule out anything else it could be so I could get proper treatment. Had I waited much longer to seek treatment, I could have been left permanently blind.
IIH causes increased cranial pressure in the way of raised cerebral spinal fluid (CSF), which in turn puts pressure on the optic nerves, which was causing my bouts of blindness (it makes my brain think it has a brain tumor). This pressure also leads to intense, long-lasting headaches (we’re talking weeks and months of feeling like your head is constantly in a vice…and on top of that, ice-pick headaches that feel like someone is stabbing you in the face). My lumbar puncture that was done to confirm my diagnosis had a reading of 31mm of cerebral spinal fluid. A normal reading is 10-15m. I was more than double – that was how much pressure I had on my optic nerves and on my brain at that time.
IIH has no cure and there are no specific medications for IIH. Doctors just pretty much wing it. Many people with this disorder have shunts placed in their heads to drain the fluid off if medication doesn’t work. There are nutritional guidelines to help lower fluid (limit vitamin A, sodium, alcohol, lose weight, etc), but oftentimes even these guidelines don’t help (and again, it’s more of that whole “just winging it”). We’re all just playing it by ear and hoping for the best.
After nearly six months of trial and error with different medications, and a visit or two to the hospital, I finally found a cocktail that worked for me. This condition drained me dry of my energy, my personality, and my life. I pretty much missed the last half of 2014. There were weddings I didn’t get to attend, an entire summer with my children I felt I didn’t get to enjoy, and if it hadn’t been for Ryan moving out here right after I was diagnosed, I don’t know how I would have made it through the first few months – I wasn’t able to physically take care of myself for at least the first month (I know a lot of people remember “Zombie Hilary”).
Even after getting the right cocktail down, I was still very weak. My right arm had practically become nothing but a dangling limb sometimes due to a combination of medication and the disorder itself. I couldn’t do basic tasks on my own (Ryan helped me do my hair, cut food up for me, etc). I had no energy and I was tired all of the time.
And then at work, everyone got into a fitness kick and brought in Sean and Kendra from Freight House Fitness. I joined up with several other co-workers and have LOVED it. Along with completely overhauling my way of eating (saying goodbye to processed and fast foods and hello to more fresh, organic foods) and going to Freight House during my lunch hour I’m starting to feel healthier – and stronger! – with each passing day (and I’ve lost more than 15 pounds so far to boot!).
I don’t have full use of my arm back (but it’s pretty close!), I still get headaches (although rarely!), I’ve learned that I can’t sneeze with reckless abandon (CSF leak anyone?), the whooshing sound that I’ve had in my head since who-knows-when I now know is not something everyone has (it’s the sound of the extra fluid in my head), and I’ve gotten used to the cloudy brain fog that the pressure causes (not being able to remember simple things/names/words). I know a lot of fancy medical terms that I didn’t know a year ago. I have a condition that has a special awareness day and month and a fancy ribbon (and is a mouthful to say)…BUT…I still feel better than I have in a long time. And more importantly – right here, right now – I am SO HAPPY!
Ryan, my family and friends have been amazing and so supportive throughout this entire ordeal. I’m in several support groups for IIH and it saddens me how many people get no support from their loved ones and friends. It makes me feel very blessed and very lucky to be surrounded by this super awesome family (Ryan included!) and incredible friends. It’s been one heck of a long year. If someone had told me while I was mid-zombie mode last year that I would be feeling like I am today, I wouldn’t have believed it. One year down…now, about that cure…
BeansLite 