Medical marijuana vs. epilepsy

Medical marijuana (cannabis) can be beneficial to people with such conditions as cancer, HIV/AIDS, anorexia, migraines, tourette’s syndrome, glaucoma, dementia, and epilepsy, among others. Research on cannabis and on its medical benefits has been done in other countries. Raphael Mechoulam of Israel, who is seen as the guru of research, has identified the molecular structure of cannabis, which has been the basis of other research.

In the United States, marijuana has been classified as a schedule one drug, along with heroin, cocaine, and other banned substances. They are seen as having “no medical benefit.” According to Daniel Ryszka, a registered pharmacist, “we can’t do trials with a schedule one drug.” There is currently legislation pending in the U.S. Senate to designate marijuana as a schedule two drug. This would not legalize all uses of marijuana, but it would acknowledge the accepted medical use of marijuana and it would permit the states to set their own policies concerning medical marijuana. It would also permit medical testing to be done in the United States with medical grade cannabis. Sponsors of the legislation are Kirsten Gillibrand (D-New York), Cory Booker (D-New Jersey), and Rand Paul (R-Kentucky).

Lisa Valle and Daniel Ryszka, who were the presenters at the February 13th meeting of Grand Island’s autism support group, both are parents of children with epilepsy. 

Daniel: My daughter had violent epilepsy. She had five to ten tonic-clonic seizures a day. My little guy never stopped  seizing. 

Lisa: My daughter was given adult-strength medications. It caused asthma. I could give you a walking tour of the old Children’s Hospital.

Daniel: The pharmaceuticals didn’t work. The children were having many seizures a day. I spent 36 hours watching their bodies shake. 

Lisa: My daughter’s dosage were ramped up to over therapeutic levels.

Daniel: This was our reality. The children weren’t living. They were merely existing. They experienced numerous hospitalizations. They were stabilized and sent home.

Lisa: Half of the medications that my daughter was on had never been tested or approved for pediatric patients.

In 2014, cannabis was approved in New York State for medical purposes. As of February 13th, 2018, there were 44,774 individuals in New York State using medical marijuana. It is consumed in various forms, including as a liquid oil, a vapor pen, a topical, as capsules, and as chewable lozenges. Daniel explained that there are no legal combustible formulations. “You can’t smoke it.”

Both Lisa and Daniel said that their children have gone over three years without seizures, since being prescribed cannabis. The children have shown great improvement, although there has also been long-term damage as a result of the seizures and the medication.

Lisa: My daughter’s brain was damaged by 300 seizures a day. She was overmedicated with Depakote, which lowers brain function.

Daniel: My son was drugged and oxygen dependent. He didn’t know that I was there. Now, he is a happy kid. My daughter was having a grand mal seizure when she was getting off of the bus, in front of the whole school.

Daniel: Medical cannabis is not the same as recreational marijuana. It’s an oil or a vapor pen and it can be downloaded to a doctor’s pen to see how often you’re using it. The New York regulations require a maximum of ten mg per dose. You can use it as often as you need. Cancer patients need more of the medication than other patients.

Lisa: Some people can’t tolerate the oil so they use vape pens.

Daniel: Cannabis can’t be covered by insurance or Medicaid because it is a schedule one drug. It has to be prescribed by a certified New York State doctor.

Lisa: The children’s doctor told me that, if you want to use marijuana oil, you’ll have to go to Colorado.

New York State’s medical marijuana program started in January 2016.

Daniel: You get a 30-day supply and you can’t get it early. This can be a disaster during a snowstorm.

Lisa: My daughter is nonverbal. Before she started taking cannabis oil, she was sleeping four hours a night. She was getting up for the day at 2 a.m. Now she is sleeping ten hours per night. My daughter has neuropathy. I can’t touch her.

Dr. Lester Grinspoon, a retired physician and professor from Harvard Medical School, followed patients with autism to see how effective cannabis could be on symptoms of autism. He wrote a book called “Marijuana: the Forbidden Medicine,” and said that the stigma attached to marijuana may be the most dangerous thing. Marijuana is “remarkably nontoxic.”

Why has it been so difficult to get medical marijuana approved by government?

Daniel: Thousands of dollars were spent in Washington, D.C., to block this. I’ve been in practice (as a pharmacist) for twenty hears. I never imagined that I would talk bout marijuana. The plant never harmed anything but people’s profits. Pharmaceutical is a trillion dollar industry. Pharmaceutical companies can’t patent a plant.

Hemp is related to the cannabis plant. 

Daniel: You can manufacture paper and cloth from hemp. You don’t have to cut down trees.

There are problems associated with the distribution of medical marijuana in New York State, in addition to the expense of the medication. 

Lisa: The dosages aren’t always consistent.

Daniel: Standardization is important. The dosages are not 

Lisa: Marijuana can be in your system for twenty days (causing problems with drug testing).

Daniel: There is a problem with people who start cannabis, who are already on pharmaceuticals. Tylenol can interact with cannabis. A pharmacist must be at a facility when the cannabis is picked up. The pharmacist will look for drug interactions. Some of them are fatal.

Lisa: (on the difficulty of obtaining approval to use medical marijuana) You have to fail three drugs before getting medical marijuana.

Where can caregivers and medical marijuana patients find support and advocacy?

Lisa: The Medical Cannabis Connection of New York has, as its focus, patient safety, education, collaboration with providers, patients, and dispensing facilities, coordination with academics, etc. The highest quality oil comes from the flowers of the cannabis plant. MCCONY focuses on patient safety.

Lisa and Daniel’s recommendations and comments

Daniel: There is no drug on the market like this.

Lisa: Think outside the box and be creative. The goal is to improve quality of life.

Daniel: Marijuana can slow down the progression of dementia but it does not reverse it.

Click here to check out MCCONY.

8 thoughts on “Medical marijuana vs. epilepsy”

  1. As someone who also lives in New York State, a couple of comments. The last I knew, there were only a limited number of medical marijuana dispensaries in the state (I live a bit over a mile from one of them). Their hours are limited, and,in fact, the dispensary's sign gives no hint of what can be bought within. And, the windows are such that you can't see in. They couldn't make it harder to use medical marijuana if they tried. WHY? The benefits for certain conditions are clear (and, for what it is worth, my late father suffered seizures as a result of a head injury he suffered in military service during WWII, so I do have just a little knowledge of epilepsy). I don't think it's a miracle drug but it is definitely a useful drug. My opinion about recreational use is a bit different, but that's a topic for another time. Great post, Alice.

  2. This is an excellent post Alice. I learnt so many new things about marijuana. My heart goes out to the parents who have to see their little kids suffer so much. It must be heartbreaking. I don't know much about the benefits so can't comment on that. But I do agree that pharmaceutical companies have made this a big business … And instead of focusing on betterment of patients, they focus more on money making side of it.

  3. I learned a lot, too. It was heartbreaking to read the parents' stories of their children's experiences with epilepsy and such a relief to read about the improvements!

  4. This is so informative. In the old days before Anasthaesia was started, people used to have marijuana to keep the pain at bay. It sounds gruesome, but if it is for a good use, then it should be researched.

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