Treating Epilepsy with CBD – Kacia’s Experience with epilepsy
Epilepsy is a neurological disorder that causes seizures. When we think about seizures we typically think about them in one specific way. We think of a person losing consciousness and having violent muscle contractions. These are called grand mal seizures but they are by no means the only type of seizure or the only way a person can experience epilepsy. So, since we talk about treating epilepsy with CBD, it’s important to discuss different types of seizures.
We spoke with Kacia Lee about her experience with epilepsy and how she uses cannabis and CBD to manage her symptoms.
Since there are numerous ways to experience epilepsy as well as seizures it can be difficult to recognize. The following are some ways that Kacia experiences epilepsy but she is still in the early stages of navigating this diagnosis.
Absence seizures typically present like a person who is completely zoned out; the person doesn’t speak, listen, or is not aware of anything around them. You could wave your face in front of them and they would not react.
These types of seizures do not appear to be long-lasting but can occur at any time. Even while the person is in the middle of doing something else like cooking dinner, walking, or writing an email.
Auras/ Focal aware seizures
Focal aware seizures (FAS) are often called auras because for many people they are often an indication that another seizure, though that is not always the case.
People experience auras in many different ways. Kacia typically experiences them as spots in her vision similar to what a person may experience from standing up too fast. Though these auras are generally more pronounced than one would experience from standing up. The spots are generally red and yellow and move around her vision, she notes that it kind of feels like what she would imagine hallucinogens would be like.
Others may experience certain smells such as burnt toast, stiffness in the body, a gut feeling that it’s coming on, etc.
For Kacia, these auras don’t necessarily lead to a traditional seizure but are sometimes associated with zoning out (absence seizures) may lead to stomach seizures.
Stomach Seizures/Abdominal Epilepsy
Abdominal epilepsy is a rare form of epilepsy and is challenging to diagnose because many people with epilepsy experience abdominal discomfort or pain even if there is no seizure activity in the abdomen. Abdominal epilepsy is typically associated with burps, nausea, and stomach pain.
There are other symptoms Kacia experiences that are believed to be connected to epilepsy. The first being overall impacts on her memory (read more about epilepsy and memory from the Epilepsy Foundation).
The second being sleep. Lack of sleep, and sleep deprivation, can lead to an increase in seizures; but epilepsy as well as some anticonvulsant medication can impact a person’s ability to sleep and increase instances of insomnia. (Read more about epilepsy and sleep from the Epilepsy Foundation).
Third, epilepsy, like other health conditions, also impacts a person’s psychological health. Those diagnosed with epilepsy are often impacted by mood disorders as well as anxiety. Approximately 30-35 per cent of people diagnosed with epilepsy also experience depression. (Read more about epilepsy and mood disorders). Treating mental health conditions simultaneously can be challenging as the medications can interact.
Did your doctors take into account anti-depressant when deciding on treatment for epilepsy?
My neurologist knew I was on anti-depressants when he prescribed me my anti-epileptic meds. Occasionally they can work together to help overall epilepsy symptoms.
Note that cannabis and CBD can also sometimes interact so it’s important to speak to your doctor about adding cannabis into your health routine if you’re already taking medication. Read our article on drug interactions for more information.
Finally, for Kacia, there are a few situations that impact her epilepsy symptoms, or simply make it more difficult to function. One is being overstimulated, such as in busy atmospheres or in larger groups. This can trigger her epilepsy as well as make her feel sick. Also, she experiences extreme light sensitivity. After a full long day, going out in the sunlight is challenging as it feels significantly brighter to the point of being unable to go outside. Though she found that grey (and green) lenses help significantly.
Kacia experienced her first seizure approximately a year ago and unfortunately had difficulty with getting diagnosed. Not only did the first doctor say there is nothing wrong with her, but the second doctor didn’t inform her of the diagnosis of epilepsy. To receive the diagnosis she reached out six months later when she hadn’t heard anything.
The impact of Medication
For many health conditions medication is necessary to manage symptoms but most are accompanied by a number of challenging side effects.
Kacia has experienced some of these negative side effects. With the epilepsy medication, missing one day can have long-term negative effects. When she misses one day it makes her feel sick and can increase the chance of her having a seizure. Recently, missing one day resulted in her having to go to the hospital as a result of the pain and stomach related issues. Unfortunately, the hospital staff dismissed her stomach pain as a result of smoking too much weed.
Treating Epilepsy with CBD
CBD has been shown to provide effective relief from seizures and other epilepsy symptoms. In June 2018, CBD, as synthetic Epidiolex, was approved by the FDA for the treatment of seizures. So, it made sense to continue to use the cannabis products that had been working for her in the past.
Kacia was regularly using cannabis prior to being diagnosed with epilepsy and was given the go-ahead from the neurologist the continue as long as it doesn’t appear to have a negative impact on her symptoms.
Using cannabis helps with the feelings of nausea and helps to calm stomach issues. It also helps with insomnia and allows her to get better sleep more often which is important in managing seizures as we mentioned earlier.
What advice would you give to other people diagnosed with epilepsy about CBD?
Kacia advises others to continually advocate for yourself to get health professionals to take you seriously. When it comes to epilepsy that looks different than was we traditionally think of as epilepsy it can be more challenging to get a diagnosis and some doctors may be dismissive. She also recommends getting a second opinion if your doctor doesn’t believe you or your symptoms.
Support groups can be very helpful to make people less alone in their experience. This is also why we want to speak to folks like Kacia about their experience. So people can see they’re not alone and that there may be solutions. Kacia has found some comfort in support groups on Facebook where people share their experiences, ask questions and support one another.
Also, a reminder to folks with epilepsy that even though bathing can be a great method of self-care it’s important to not bathe alone, or at least have some around to check out you.
Is there anything else you feel is important to share about your experience with CBD or Miss Envy products?
Miss envy has always provided me with quality CBD for me in a variety of methods of intake, including; tinctures, Phoenix tears, or capsules. For myself, I have a hard time trusting companies I haven’t tried. I’ve been taking Miss Envy products for the last 5 years with no negative side effects.
I am also curious about microdosing for the help of epilepsy! Luckily there are new products from a company I trust that will be another method of treatment.
Final Thoughts on Treating Epilepsy with CBD
Read more about Treating Epilepsy with Cannabis.
If you’ve had a similar experience with epilepsy we want to hear from you. Have you tried CBD to manage your symptoms? What has worked for you?
Let us know in the comments, tag us in your story on social media or send us an email at email@example.com
If you have another story you’d like to share with us we’d love to hear that too.
Kacia is an artist and graphic designer obtaining a Bachelor of Fine Arts Degree. Her work specializes in a variety of mediums including but not limited to acrylic, charcoal, ceramics, digital imagery and GIFs, pastel, watercolour, and mixed media. By using bright and high contrast colours along with curved line work, she aims to communicate emotion as well as movement. Follow her on Instagram @0netwentysix and check out her website www.0netwentysix.com