Stacy Wilson has suffered from severe seizures since she was 4 years old.
All those years of tonic-clonic (formerly known as â€œgrand malâ€) seizures have taken their toll on the 45-year-old Grantville residentâ€™s body. She now has chronic arthritis in her shoulders, and disc problems in her back.
â€œIâ€™ve beat my body to death over the years,â€ Wilson said. When she has a seizure, there is normally no warning, and she often falls into furniture.
She wears a medical alert button around her neck. â€œSince I fell and broke my teeth, and I had a couple of seizures where I quit breathing, my husband decided that since Iâ€™m by myself, I need it. Iâ€™ve had to use it twice.â€
The seizures have also taken a toll on her brain. â€œIâ€™m really bad about repeating myself â€“ Iâ€™ll tell you the same story 50 times,â€ she said. â€œIâ€™m very forgetful.â€
Last year, Wilson got involved in the push to make cannabidiol, a component of marijuana, legal for those with seizure disorders and other illnesses. While THC is the component of marijuana that is responsible for the high, cannabidiol, or CBD, has been found to have numerous medical benefits.
When Georgiaâ€™s Low THC Oil Registry went live, Wilson’s neurologist was ready and waiting to send in her certification.
When Wilson went to pick up her card from the Vital Records office in Carrollton, the lady in the office â€œwas so excitedâ€ to give it to her. â€œI guess I was the first one. She was just tickled to death.”
Wilson ordered a 100ml (3.4 ounce) bottle of CBD oil, with 0.03 percent THC, from Palmetto Harmony, a company in South Carolina. Palmetto Harmony is one of three companies shipping the oil to Georgia. The bottle cost $160.
She started taking the oil twice a day. And the results were nothing short of amazing. During the two-and-a-half weeks she took the oil, Wilson didnâ€™t have a single seizure. But that was only a part of what CBD oil did for her.
â€œMy husband said not once, from the first dose, did I repeat myself on anything,â€ Wilson said.
â€œIâ€™m surprised that it made such a drastic improvement mentally. I was focused. Iâ€™m always scatterbrained and forgetful and I wasn’t.â€
Because of her arthritis, Wilson takes pain medication. When she was on the CBD, â€œI was down to one pill a day as opposed to four or six.â€
â€œI had more energy. My body wasn’t aching all over like it usually is.â€
But once that $165 bottle was empty, everything went back to the way it was. â€œTwo days after I stopped it I had two major seizures. I broke two of my teeth out.â€
Because the oil is so expensive, Wilson hasnâ€™t been able to afford another bottle.
Bringing down the price is one of the reasons that advocates for CBD want in-state growing and manufacturing of low THC oil.
Advocates have recently formed the new Georgians for Freedom in Healthcare coalition. The new group includes patients and parents as well as doctors, an herbalist, and a scientist who has spent years studying marijuana, Wilson said.
While Georgiaâ€™s new law, which passed in the 2015 Georgia General Assembly session as House Bill 1, allows oil with up to 3 percent THC for children and up to 5 percent for adults, only the oil with 0.03 percent can be shipped. Oils higher in THC must be smuggled in from Colorado.
Wilson would like to try oil with a higher THC content. â€œThere are a lot of patients that could really use something that is a little bit higher in THC,â€ Wilson said. She said she has a friend who uses a higher-THC oil as a â€œrescue medicationâ€ for his daughter. â€œThey say it stops her seizures immediately â€“ they put a couple of drops under her tongue and thatâ€™s it. She comes out of it.â€
In the meantime, Wilson is going to look into using essential oils, particularly frankincense, to help with her symptoms. Sheâ€™s pretty much exhausted her options with traditional medicine. Wilson has a vagus nerve stimulator implanted in her chest. But it doesnâ€™t help. Sheâ€™s not a candidate for â€œepilepsy surgeryâ€ on her brain because she has seizures that affect both sides of her brain.
Things got really bad in 2014, when the Wilsons visited their son at the Air Force Academy in Colorado Springs. She had the worst seizure of her life. When she came out of it she didnâ€™t recognize her husband, Andre, or son Jake. When she got out of the hospital following that incident, Wilson was put on a new anti-seizure drug. The drug causes suicidal thoughts in about one of every 500 users. Wilson started having horrible dreams and stopped taking the medication. Her doctor wanted to try another medication but â€œI told her I wasnâ€™t going to start it. Iâ€™m going to start the cannabis oil.â€
â€œIâ€™ve asked the doctors many questions â€“ is there anything they can do for my wife? The answer is always â€˜no,â€™â€ Andre Wilson said. He wishes the CBD oil was affordable. And he thinks maybe Stacy could come off of a lot of her medication if she could be on the CBD oil regularly.
â€œI canâ€™t comprehend why theyâ€™re making such a big deal about it,â€ Andre said about allowing in-state cultivation.
CBD oil didnâ€™t have those kinds of miraculous effects for teen Maggie Callaway of Newnan. But it did help. Maggie and her mom, Beth, moved to Colorado last fall to try the CBD oil. It didnâ€™t stop Maggieâ€™s seizures, but things still seemed to be better. But life away from their family was hard, and the Callaways quietly moved back home in May.
The plan was to keep Maggie on the oil. But it wasnâ€™t to be.
Things just werenâ€™t the same here in Georgia. Maybe it was the heat, the humidity, the air quality. Whatever it was, when they gave Maggie the oil â€“ the same oil she had taken in Colorado â€“ she started seizing.
Jason Cranford, a native Georgian who produces the â€œHaleighâ€™s Hopeâ€ CBD oil in Colorado, suggested a â€œreceptor reset.â€
â€œMaybe after seven or eight months her body needed a break,â€ Beth said. So they waited a few days, and tried again. â€œWe did that for five to seven days. It turned into 10 days, into two weeks, and every time we would reintroduce the oil we would have seizure issues,â€ Beth said.
They do still use the oil on occasion â€œonce her behavior starts indicating that she is ramping up into seizure mode.â€
In that case, â€œit takes the edge off of it,â€ Beth said.
â€œI wish I could say things are great. This is just what we deal with. Nothing is an easy fix,â€ Beth said. Theyâ€™ve recently discovered that Maggie now has scoliosis â€“ brought on by all those years of seizures.
â€œWeâ€™ve sort of taken a tangent away from the oil and weâ€™re trying to work on the scoliosis,â€ Beth said.
Sheâ€™s not giving up on the CBD oil. â€œWould I discourage anybody from trying it? I absolutely would not,â€ Beth said. â€œWould I go to Colorado again? Yes. Itâ€™s just not working for her here.â€
In addition to passing HB 1 in the 2015 session, the Georgia legislature also created the Georgia Commission on Medical Cannabis. The commission is made up of legislators, medical professionals, law enforcement, and others, and has been meeting for the past several months to gather information about medical cannabis.
The most recent meeting was held Wednesday. At that meeting, the commission heard from a neurologist, a pediatric hematologist/oncologist, and a gastroenterologist, as well as a woman with multiple sclerosis who is advocating for in-state cultivation, and a representative from the Medical Association of Georgia.
The commission is set to make recommendations at the start of the 2016 legislative session.
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