Medical Marijuana: THC & CBD

Medical marijuana is an effective  addition or substitution to many of the medications taken by epileptics to control their seizures.  Epilepsy is super responsive to weed! Many patients suffering from epilepsy have found relief from medical marijuana, especially epileptics who can’t tolerate the side effects of other seizure medications.

Marijuana contains many different chemical compounds known as cannabinoids.  The two most well-known cannabinoids are THC (tetrahydrocannabinol) and CBD (cannabidiol).  It’s well known that the THC gets you feeling “high” (the reason most pot-heads roll a joint), but the effects of CBD has been researched more recently.  Unlike THC, the CBD has a more therapeutic effect and works similar to a mild anti-depressent.

THC and CBD each have many benefits, whether in recreational or medical use. Usually THC is more for recreational use and CBD is used for medical purposes.  For those who benefit from marijuana but don’t want to get high, a high CBD strain is the way to go. A common use for THC would be relaxation, drowsiness, and painkiller.  CBD is more often used for anti-anxiety and anticonvulsant.

The best strain of marijuana to treat epilepsy is one that is high in CBD and low in THC, especially if used for children.  For some people who take high CBD marijuana with little success, a strain with more THC works better and is known as creating an “entourage effect”.  It’s amazing to see all of the ways to take a high CBD strain. Smoking (the most common method), vaporizing, oils (recommended for kids), edibles, lotions, sprays, etc.  Whether you frown upon or accept marijuana as an option for treatments, a high CBD strain has been working very well for seizures along with depression, pain relief, anxiety, and nausea.  Talking to your doctor is a great start. For patients who take multiple medications, taking a natural medication that is possibly more tolerable and helpful will add smiles to their faces!  

RNS- Responsive Neurostimulation

Responsive neurostimulation (RNS) is a new method of controlling seizures by delivering electrical stimulation to the seizure focus from a small implanted device.  Designed by Neuropace in Mountain View, CA, this is the first and only device that monitors and responds to brain activity. The RNS device received FDA approval in 2013. It is considered an adjunctive therapy for patients with drug-resistant epilepsy who are not surgical candidates, or who have already failed surgery other types of surgery such as the VNS.

The system comes with a remote monitor that patients use at home to wirelessly collect information from the neurostimulator and then transfer it to a patient data management system.  The patient’s neurologist can log into this system at any time to review seizure activity.  This helps physicians learn more about their patients’ seizures and improves patient care.

In clinical trials, patients treated with this device experienced substantial seizure reductions in the first year and continued to improve over time.  During a controlled study, 230 patients with RNS were followed over time.  The average decrease in seizures was 44% after 1 year, 53% at 2 years, and up to 66% after 3 to 6 years of using RNS.

Medications

As with most intractable seizure sufferers,  I’ve tried just about every epilepsy medication in the book.  When my doctor suggests a change in meds, the pessimist in me comes out.  Although it has potential to be a positive improvement, I think of the negatives; this could be a huge change in my mood, diet, memory, depression, anxiety, and most of all..seizures..  A change in medication may not seem daunting to some, but for me it’s a lifestyle change.  Looking at a list of all of the medications I’ve tried really puts it into perspective.  

  • Carbamazepine (Tegretol)
  • Clobazam (Onfi)
  • Lacosamide (Vimpat)
  • Lamictal (Lamictal)
  • Lorazepam (Ativan)
  • Oxcarbazepine (Trileptal)
  • Perampanel (Fycompa)
  • Pregabalin (Lyrica)
  • Topiramate (Topamax)
  • Zonisamide (Zonegran)

VNS: Vagus Nerve Stimulator

Approximately 8 years ago my doctor suggested implanting a Vagus Nerve Stimulator (VNS) as an adjunctive treatment for my intractable epilepsy.   Often referred to as a “pacemaker for the brain”, this is a treatment which delivers regular electrical impulses to the brain via the vagus nerve.  Because of my fear of surgery (not to mention any kind of needles!), I was too afraid to go through with it. Finally in 2012, fed up with life, I agreed.  The procedure itself, along with the positive results, excited me. Previously my seizures would bring me a ton of anxiety the next day, laying in bed with a jumbled head and shaking in the sheets.  The day after that I would wake up crying in my sleep, the pillow completely wet with tears. Now that was gone! I’d still have my seizures, but some of the side effects had greatly improved. I was told that the VNS would improve over time.  Unfortunately, I waited. And waited. And waited. After the initial benefits, there would be no more. The seizures were still there, yes easier to recover from, but my optimism dwindled over time.