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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 Implant Activated

 

So my question to you regarding the RNS surgery, “was it worth it?”, is still a mystery.  After the implant was activated a month ago, my seizures automatically reduced in frequency.  Unfortunately that lasted 2 weeks and now I’m worse than I was before the surgery.  I’m having many auras each day (originally I’d have approximately 1 on a seizure day and now around 10 each day), and seizures almost every day of the week.  Because of this I went back to my doctor who is wondering if the device is in the right spot.  What?  After that surgery, it’s possible it was put in the wrong area?  Please say no to that, because just a month later I’m starting to regret this decision.  I realize it takes a lot of time to alter the device, but the look on my doctors face when looking at my results scared the hell out of me!  Any other RNS patients who’ve dealt with the same thing?

Stupid Swimming!

I’ve always loved swimming laps for exercise.  I was on the swim team in high school but at that point I was only dealing with very minor absence seizures and swimming was safe and fun.  Recently (approximately 25 years after high school) I decided I would like to try swimming again.  I wanted to be safe so I brought my mom with me to the pool as my own personal lifeguard.  One day I thought I felt an aura but I wasn’t sure so I kept swimming.  Next thing I knew, I was in the ambulance.  My mom, age 70, saw me have a seizure while swimming and jumped into the pool to save me from drowning.  Multiple things were going through my mind for the next couple of weeks.  I was scared that I could have easily died through drowning.  Also, the guilt that my moms life was at risk because of my stupid decision to keep on swimming.  That aura I felt should have been enough to get me out of the pool.  If  you feel an aura, or even think you do…get out!

RNS Implant Surgery

Last month, April 2018, I had epilepsy surgery.  My seizures are focused in my occipital lobe (the area which affects vision), which is a rare location for epilepsy and potentially dangerous for surgical resection (where they remove a part of the brain).   My doctor suggested that instead of resection, they would try to implant the RNS device.  He gave me an approximate 50% chance that they would even be able to find a safe place to insert it.  The idea of brain surgery alone scared me but with only a 50% chance they’d be able to do ANYthing drove me nuts!

The first surgery involved inserting the intracranial electrodes on my scull for brain mapping.  My doctors said that I had more electrodes inserted than almost all other surgeries they had done.  I was miserable.  I couldn’t eat, drink, talk, watch tv, read.  For 7 days I laid in bed without moving.  Due to potential seizures, I was restrained on the bed with my wrists tied down.

Thankfully, enough information was obtained from my mapping which gave the doctors confidence in a safe location for my implant.  During the second surgery, the grids were removed and the RNS was implanted.  Surprisingly, I recovered from the second surgery very well and was up, eating and talking very well within 24 hours.   I was in the hospital for approximately 10 days total and the first 7 were the worst.  Was it worth it?  We’ll have to see….

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.

My memories erased by my seizures?

Memory loss if very common for people with Epilepsy.  This can be for many reasons such as the type of seizures they have, side effects of medications, the effects of epilepsy on concentration, age, sleep habits, or the effects of epilepsy surgery.  My memory loss saddens me because there are so many wonderful events in my life that I can no longer enjoy; places I’ve traveled, people I’ve met (and their names!), books I’ve read, etc.  People will say, “remember when we went to that restaurant?”, and unless it was recently, it’s very possible that I won’t remember.

Sadly, there is no cure for this, however the best I can do is create memory aids which help with my memory problems.  Some of the things that I use are these:

  • Sticky notes
  • Calendars on my computer which send me reminder emails
  • Associations (trying to remember peoples names by saying “Tall” if his name is “Paul”
  • To-do lists
  • Diaries (which include seizure diaries)

I feel like I’ve lost a huge part of my life and can only hope that those memories aren’t gone forever.

 

Who are you?

Always keep your identification with you in case of emergency.  I highly suggest an ID tag (see brands below) which includes your name, health conditions, medication, allergies, and emergency contacts.  These are often sold as bracelets, necklaces, or shoe clips. Suggestions of medical ID brands:

  • Road ID (I personally use and love!)
  • Medical Alert
  • American Medical ID