Between 1993-2001 my health was okay. I had problems but nothing that impeded my ability to go to school or work. I preferred late morning or afternoon shifts instead of mornings, I had several bouts of systemic yeast infections, I had lots of issues with food sensitivities, and most winters I got bronchitis at least once. Fibromyalgia wasn’t a word recognized by the general public at that time so I simply told people I had a sleep disorder.
In 2001 I changed jobs and started working at a marine hardware store around VOCs from industrial paints and resins. My desk was in the marine paint storage area and the off-gassing was overwhelming. That winter I started getting giant (3 inch) hives every time snow touched my skin. It was painful, disconcerting, and a puzzle to doctors.
In 2003 I moved away from snowy Alaska to the more temperate Oregon Coast. My apartment had evidence of minor water damage in the past but it wasn’t anything I worried about. Shortly after moving I was diagnosed with minor hypothyroidism and put on Synthroid. A year later I was diagnosed with tachycardia. In 2007, after nearly a year of extreme fatigue, I was diagnosed with sleep apnea. By the end of 2008 I had problems controlling my Fibromyalgia symptoms. I didn’t react well to standard or experimental treatments so by mid-2009 I had to take short term medical leave in order to get a handle on my pain and fatigue.
In the midst of my dealing with another major Fibromyalgia flare the people in the apartment next to mine were evicted. The apartment manager found water damage and mold throughout the first floor of the apartment from a leaking washing machine. Mold was growing at least a half inch up the walls and not only did the carpeting have to be replaced, so did the subfloor.
I was off work for almost 3 months and it took another 3 months for me to control most of the pain, fatigue, and sleep issues that accompany Fibromyalgia with the help of a Naturopathic Doctor, an acupuncturist, a massage therapist, and my own intuition. Going back to what the MD in Alaska told me in 1993 about the link between unrefreshed sleep and pain gave me something to focus my energy on improving and it worked. By December I only experienced increased pain and fatigue during the week before and during my menstrual cycle.
Then the headaches started. They were unlike any headache I’d experienced before. Not migraines since they originated at the top of my head. My head would even get hot to the touch from them. I thought they were thyroid headaches at first since my mom has similar headaches when her thyroid levels are unbalanced. I returned to my primary care physician and switched back to Synthroid instead of the T3/T4 compounded thyroid med my ND put me on in June.
By March 2010 we knew something was seriously wrong. Migraine meds didn’t help and pain meds barely touched the pain. The headaches kept increasing in intensity until the left side of my face and my left arm went numb and it felt like bugs were eating my brain. An MRI was ordered and, after it came back as normal, my PCP sent me to an ophthalmologist. After waiting for hours to see him, he diagnosed me with Pseudotumor Cerebri/Intracranial Hypertension. There was too much fluid in my skull and it was pushing on my optic nerves. It could cause blindness as well as all the symptoms of a brain tumor. It was March 26th, 2010.
I attempted to work with a constant headache and while on pain meds. It was stressful and difficult but I was able to split my lunch hour into two half hour segments so I could lay down and rest for a short time in the afternoon. Then on April 15th I started stuttering. It sounded and felt like I had had a stoke. By the end of the next week it got so bad I couldn’t speak at all without it feeling like something was stabbing me in the brain. I left work on my lunch break on April 23rd and never returned.