This post is part of the Epilepsy Blog Relay™, which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!
When you think about epilepsy, you immediately think of seizures. How to stop them, how to get rid of them. That is the ultimate goal. However, in that quest, there is a long journey ahead, which at times seems like an impossible dream. If I sound like Don Quixote, the Man of La Mancha, maybe that’s what it feels like—trying to slay dragons that turn out to be windmills.
Medications are the most common form of treatment and cause a huge range of side effects. Among these are: dizziness, sleepiness, weight gain, weight loss, blurred or double vision, unsteadiness, rash, fever, depression, suicidal thoughts.
The Vagus Nerve Stimulator (VNS) comes with its own side effects and risks: tingling in the neck, hoarseness in the voice, coughing, shortness of breath. It can also cause injury of the vagus nerve and surrounding blood vessels as well as infection during surgery.
The Ketogenic Diet, used mostly for children, is a high fat, low carbohydrate diet which helps control seizures in some patients. Usually, the body uses carbohydrates as its source of energy. In the ketogenic diet, the body is using fat. The fat is converted into “ketones,” and it is the ketones that help with seizure control. Certain types of epilepsy are well controlled with the ketogenic diet.
However, there are side effects (http://www.news-medical.net/health/Ketogenic-Diet-Side-Effects.aspx ; http://www.theketogenicdiet.org/side-effects/)with the diet. Some of these include fatigue, hunger, kidney stones, excessive thirst, high cholesterol, dehydration, constipation, and slowed growth. Therefore, the diet has to be carefully supervised with a pediatric epileptologist and dietician.
Medical Marijuana is a completely different beast. Marijuana is composed of two main parts: CBD (cannabidiol) and THC. The CBD is the anti-seizure agent and seems to help patients with Dravet syndrome and Lennox-Gastaut syndrome. It first got attention because of Charlotte Figi, who had a serious case of Dravet syndrome. After trying medical marijuana, her seizures improved immensely.
However, as with any other treatment, it has to be subjected to research and clinical trials to be approved. The problem with CBD is that the laws on marijuana are inconsistent in the United States. Therefore, it has been difficult to gather reliable data on medical marijuana. There was an open label study of Epidiolex, an oil-based extract of CBD. The results so far are promising, but continuing studies need to be done.
As for side effects that were noted, they included sleepiness, increased appetite, and memory problems. That said, there is still much we do not know about medical marijuana.
Side effects play a big role in our lives with seizures. Often, it feels like you are groping in the
dark, either (1) having seizure freedom but too many side effects or (2) not
yet finding seizure control but no side effects. The goal should be both seizure freedom and
no side effects. It is important to work with your doctor to adjust your
dosages to an acceptable level while trying to achieve seizure control. That is the balance.
Support from family and friends is absolutely necessary. This will help keep you sane.
For now, the journey continues, and as long as I have my Sancho
Panza and Dulcinea by my side, I will remain strong.
Resources
Side effects
Vagus Nerve Stimulator
Ketogenic Diet
Medical Marijuana
NEXT UP: Be sure to check out Positive Epilepsy: The Life, Times, and Thoughts of a Stay At Home Dad (www.positiveepilepsy.com) for more on Epilepsy Awareness. For the full schedule of bloggers, visit http://livingwellwithepilepsy.com/epilepsy-blog-relay/epilepsy-blog-relay-mar-2016-participants.
Be sure to check out the Epilepsy Blog Relay Thunderclap to raise epilepsy awareness. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET. https://www.thunderclap.it/projects/38104-epilepsy-blog-relay-mar-16
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