"It feels great to feel good again," says Dallas Cristofoli after a year long illness.
Recovering from being sick for 12 months is like coming out of a cocoon, a cathartic revelation that feeling normal is wonderful after living through a year of pain and fear. The recovery is by far the best part of any illness — from the common cold to cancer.
That is if you were sick.
Whistler's Dallas Cristofoli has spent the past few months recovering from an illness that cost her a year of her life, her job and at times, she says, almost her sanity.
Except she wasn't sick. But the drug coursing through her veins, prescribed to offset the symptoms of a disorder she did not have, made her ill. And to listen to her story is enough to make a healthy person feel queasy. It's a tale of one woman's intuition against the medical journals, specialist's opinions and one misplaced diagnosis that has changed her life forever.
Dallas Cristofoli seemingly had it all. After two decades in education she was living in Whistler, had her dream job and was making a difference in a school district she believed had the potential to be one of the most progressive in the province.
Dallas and her husband Rob headed to Maui for the Christmas holidays in 1993. They were taking a well-deserved break from their jobs — his as a math and science teacher at Pemberton Secondary School, hers as the Superintendent of the Howe Sound School District.
Then she collapsed and her world collapsed around her.
She was rushed to the local medical centre in Maui where a doctor performed a CT scan, an EEG and some blood tests. The diagnosis, seizure disorder. Nothing more definitive, no explanation, just seizure disorder.
"I guess that would mean I am prone to seizures," says Cristofoli as she remembers the few days following her collapse. "The doctor said the diagnosis was very quick and I should get home and see a neurologist as soon as possible."
The doctor in Maui wrote Cristofoli a prescription for Dilantin, an anti-seizure drug that has been used successfully in the treatment of epilepsy and other seizure inducing disorders. The moment she returned home she made an appointment with a North Shore neurologist who confirmed the original diagnosis the doctors in Maui had come up with.
Seizure disorder — load up with Dilantin.
Dilantin is one of the brand names for a drug called Phenytoin, introduced into the medical world in 1938 as an anticonvulsant. How the drug works is not exactly known, although it is thought that by promoting the loss of sodium from nerve fibres, this drug lowers and stabilizes their excitability and inhibits the repetitious spread of electrical influences along nerve pathways. In other words, it slows down the brain. And as Cristofoli found out, if you aren't prone to seizures, people with high brain function can have a very adverse reaction to the drug, as the brain basically ends up fighting the drug.
A quick glance at Cristofoli's professional record will show how well her brain works. She graduated from UBC with a Bachelor of Arts in 1967, she emerged from Teacher's College a year later. She married her high school sweetheart, Robert, the same year. He was fresh out of SFU and they embarked on their life together. Born and raised in the Kootenays, Dallas expected to move back there. When she and Rob realized the largest job market was in the Lower Mainland, they chose Whistler over the Kootenays and bought a lot in Emerald Estates in 1971. They were weekenders until Dallas landed the job as Superintendent of the Howe Sound School District in 1992, when they moved here permanently.
"When we bought the lot there was no power in Emerald and over the next couple of years we built our house," she says. The Cristofolis were living in their dream house, they had their dream jobs, but Dallas was almost incapacitated by her illness.
"Now when I look back at it, the neurologist here just rubber stamped the original diagnosis from Maui," Cristofoli says. What she didn't know was the neurologist here based his diagnosis on the CT scan that had been performed in Maui. Later, she learned, the CT scan equipment in Maui was outdated and antiquated. The doctors said they had detected some clouding in the right side of her brain. They asked her if she had ever sustained a head injury. And as she racked her past she remembered a fall off a horse that left her with a bump on the head and a few stitches — over 20 years ago.
That was the piece of the puzzle the doctors were looking for — they now had all the evidence necessary to say she was prone to seizure disorder.
Hindsight is always 20-20, yet even early into the illness Cristofoli says something just didn't feel quite right. She was in perfect shape prior to the moment she collapsed in Maui. She was an avid skier and windsurfer and all of a sudden she felt terrible, every day, all day.
And while Cristofoli's brain was waging a year long war with the Dilantin in her bloodstream her body started to react as well. She lost her depth perception, insomnia wracked her body and she started to lose the ability to move her right arm. Coupled with headaches that felt like a freight train driving between her temples, she was one miserable woman.
Cristofoli's sister is a pharmacist and her brother is a doctor and both of them were telling her to get a second opinion because the possibility for seizures after a head injury decreases with time. "If I was going to have a seizure after the fall off that horse it was going to be within two years, not 25 years later."
So she started researching Dilantin, head injuries and things were just not adding up.
"All the while I was telling myself and my doctor, ‘This is not right, I'm not getting any better, actually, I'm getting worse,’" she says. "It's amazing the way the medical profession can be so closed. Every time I came back with more research on Dilantin, they would tell me I should be getting better. It's amazing how they try and tell you that the drug should be working… the whole thing kept getting dumped back on me like I was the problem. When you hear that for long enough you start to believe it."
The nausea, headaches and insomnia started to affect her job and Cristofoli resigned as Superintendent of the school district, not only had the Dilantin robbed her of her dreams through insomnia, it had now robbed her of her dream job.
"It may have been too quick of a decision (to resign), but I felt I wasn't doing the district a favour by trying to work while I felt so bad and I thought if I quit everything and just relaxed maybe the drug would work and I could get on track," she says.
After resigning in April of 1994, she "literally spent May and June on the couch" and still wasn't feeling any better. She tried to get back to work doing some part-time consulting and it just was not getting any better. The paralysis in her right arm was so bad she had to physically lift her arm up to grab things, her depth perception made it hard to go down the same stairs she had descended thousands of times since 1971, she wouldn't drive because of her fear of having another seizure and the headaches were increasing in intensity and frequency.
Finally, Cristofoli made a decision to quit taking the 400 milligrams of Dilantin she had been dropping every evening before bed for an entire year. Shortly after, she got an appointment to see Dr. David MacDonald, the associate director of the epilepsy program at Vancouver General Hospital. For the first time since she passed out a physician asked Cristofoli what she had done the day of her seizure. She told him she had a cup of coffee in the morning, a walk a swim and a beer. Dr. MacDonald, who trained at the Mayo Clinic, asked her if she had slumped over or went rigid when she had the seizure. It looked like a slump.
He told her he wanted to do another CT scan and perform some EEG tests, but it looked like she was a perfectly healthy woman who didn't take in enough fluids and passed out in the heat of the Maui afternoon. Cristofoli had spent the past year on a drug that was not only unnecessary, it was downright destructive. Cristofoli's brain was used to working 70-80 hours a week, making high-pressure decisions and giving directions. When the Dilantin tried to suppress that brain activity her brain fought back. While the battle was raging, her body suffered. But finally, the war was over.
"It was such a relief to finally have someone ask me questions rather than tell me what was wrong with me," Cristofoli says. "Ten days to two weeks after I had been off the stuff (Dilantin) my brain returned, I could feel it starting to unfold. Physically I wasn't recovered, but just making logical, sequential decisions became easier."
One hellish year after the misdiagnosis Cristofoli was back on planet earth, home from a weird zone called Dilantinville. A place where things don't make sense, fatigue is perpetual and piercing headaches are part of everyday life.
She's now working part-time out of her house, connected to the rest of the educational world via fax, phone and the Internet, designing professional development programs for educators around the province. Head-hunters and school districts have been calling and offering her work, but that would mean leaving Whistler, something she and Rob are not prepared to do. It would also mean she might not be able to spend as much time with the best thing that came out of Dilantinville. A six-month old miniature Boston terrier named Max, who she loves dearly.
"With the amount of time I used to spend away from home working I thought it was not fair to get a dog," she says as Max runs about the floor nipping at whatever enters his puppy field of vision. She says she would not have been able to leave Dilantinville without the patience and support of her husband and family.
She's not angry at anyone about her trying ordeal, she just wants to pick up the pieces of her life almost derailed by a drug that has helped millions of people and carry on.
"I'm not the kind of person who is going to spend a whole bunch of time and energy trying to make someone pay for a mistake they made. I'm feeling a heck of a lot better and that's all that matters," she says with renewed vigor. "If a door shuts in my face I don't stand and kick at that door, I go find another door and open it."