How People On Reddit Talk About Epilepsy

As a technologist, I’m fascinated about how people use social media. It’s such a vast space but people find places where they can make connections around any number of topics. Social media has fostered revolutions, saved lives, but also taken them. It enables freedom of expression but also allows an unprecedented level of hatred. Like a hammer, social media is a tool, and it’s up to humanity to use it to build or to destroy.

I read an article that described a language analysis done on comments from Reddit. Reddit is a community website that aggregates content. It also allows members to share, rate, and discuss the content. I thought it would be interesting to see how people on Reddit talked about epilepsy.

Why does it matter?

If you’re reading this post, you may have been lead to it by Twitter, Facebook, or Medium. Maybe you subscribed to the blog. In any case, you are using technology and the Internet to consume information. And there is a lot of information out there…some good, some bad, some supportive, some not. These types of analyses aren’t perfect, but they can provide some interesting insights.

I’m old enough to be able to navigate these platforms and decide what to take and what to leave. While my son is not of Internet age yet, he will be soon. And he’ll be more likely to look to social media for support. The more I know about the different systems, the abler I’ll be to guide him as he explores them.

More generally, though, these types of analyses can be helpful to see what aspects of epilepsy people are talking about. Or, not talking enough about.

What data did I look at?

For this project, I grabbed comments from March 2017 that contained the word “epilepsy“. That gave me 3,046 comments out of about 79 million (0.0038%). Literally, a drop in the bucket, but enough for a simple analysis.

Number of comments by day in March 2017

Here is how the epilepsy-related comments were distributed throughout March.

epilepsy reddit nlp google sentiment

The big spike on March 22 was partly due to a question in AskReddit. AskReddit is where posters ask and answer “questions that elicit thought-provoking discussions”. The spike was the result of responses to the question “What are you sick and tired of having to explain to people?.” I can imagine people living with epilepsy having an opinion on that question.

Which subreddits are the most active?

Next, I wanted to break down the comments by the group they were posted in. On Reddit, the groups are called “subreddits”. Those discussions helped the AskReddit subreddit lead the comment count for epilepsy-related posts. The subreddit dedicated to discussions about epilepsy came in second.

epilepsy reddit nlp google sentiment

What adjectives do people use when they talk about epilepsy?

Besides looking at simple numbers, I wanted to analyze the comments themselves. I ran them through Google’s Natural Language (NLP) API to see what I could learn. NLP takes a sample of text and breaks it down into parts of speech and sentiment.

First, I looked at the parts of speech. Here are the top adjectives most used in conjunction with the word “epilepsy.”

epilepsy reddit nlp google sentiment

What is the sentiment of the comments about epilepsy?

Next, I wanted to add the sentiment piece. The NLP looked at each comment and to try to infer if it represented a positive or negative sentiment. “I won’t let epilepsy get me down” is an example of a positive sentiment. “I have epilepsy and am depressed” expresses a negative sentiment. I wondered if the adjectives used changed depending on the sentiment of the comment, and they did.

For comments characterized as positive, words like “good”, “great”, and “best” were included.

epilepsy reddit nlp google sentiment

For negative comments, “bad”, different”, and “severe” made the list.

epilepsy reddit nlp google sentiment

I also wanted to look at the sentiment across the different groups. The chart below shows the average sentiment of the epilepsy-related comments by subreddit.

epilepsy reddit nlp google sentiment

Again, a positive score reflects an overall positive sentiment of the comments. Interestingly, the big negative score on the chart is for the subreddit “KotakuInAction.” The group relates to the “GamerGate” controversy and other gaming and Internet issues. The thread that contained the epilepsy comments related to the Eichenwald case. That was where a journalist with epilepsy was sent a seizure-inducing twitter message.

What else do people talk about when they talk about epilepsy?

Finally, Google’s algorithm also provides other topics (entities) that are discussed in text. Here are the most common entities mentioned in conjunction with epilepsy on Reddit.

epilepsy reddit nlp google sentiment

Let’s look at January through March…

Since the data was available, I ran a few of the reports for the first three months of 2017, as well, to see if anything changed.

First, here are the number of comments for January through March.

I also wanted to see how different the entities report was over the three months. There was a lot of overlap from the March chart, showing that conversations about those entities are likely normal.

Finally, I also looked at the occurrences of specific references to a handful of positive and negative terms that often come up when speaking about epilepsy.

Looking at the two charts, clearly, references to medication, side effects, and depression were often discussed in the comments on Reddit.

What’s next?

This project was a first look at using natural language processing techniques to analyze social media posts about epilepsy. There are a number of applications for such technology, and it will be interesting to explore more sites and using different algorithms and techniques. If you have any thoughts or suggestions on other ways to look at the data, please leave a comment below.

If you’re interested in doing your own analysis, you can find the source code and other information on my GitHub page. A shout-out to Sara Robinson for her article, which was a guide and huge inspiration.

Halloween, Birthdays, And The Ketogenic Diet For Epilepsy

My son has been on the ketogenic diet for about six months. He’s on the diet because he has refractory epilepsy, which basically means that the half-dozen medicines that he has been on in the last year haven’t been able to control his seizures. The ketogenic diet is what the doctors try when the medicine doesn’t work.

The diet works by getting the body to use fat as its fuel source, which causes it to produce ketones. How do you get the body to use fat? You change your diet so that it doesn’t have a choice. The ketogenic diet is a high fat diet where 90% of the calories come from fat. It includes enough protein to grow and a minuscule amount of carbohydrates, but the diet is primarily oil, butter, cream, and mayonnaise.

The diet is hard. For parents, it’s labor intensive to measure every part of a meal. There are urine strips and blood draws to make sure the diet is working and not doing harm. For my son, the diet means he can’t eat whatever he wants. He can’t just grab a snack. He can’t pig out. There are no pizza parties, no ice cream socials, and no guilty pleasure of hitting a drive-through. The diet and resulting lifestyle changes are a really tough thing to put anyone through, especially a child, which is why it’s not the first option in a treatment plan.

October happens to be a particularly big month for carbohydrates. The orgy of chocolate and processed sugar that is Halloween comes only a few days after another celebration of sugar and flour, my son’s birthday.

epilepsy keto ketogenic seizure

This year, being on the diet meant that every door we went to and every “Trick or Treat” that my son spoke was for candy that he couldn’t eat. It also meant that the tray of cake my wife brought in to the school for my son’s class was for everyone except the birthday boy.

As impossible as it all seems, my son never complained. He knew that he couldn’t eat the candy because it wasn’t on the “hockey diet”, and he was happy to trade the mountain of candy that he collected for a present. He devoured his special “keto cupcake” (made with soy flour, mayonnaise, and heavy cream) while his classmates ate regular birthday cake.

epilepsy keto ketogenic seizure

I’m not sure I could be on the diet. I’m relatively certain I couldn’t do it without complaining. I’d look at all the people around me eating whatever they wanted, whenever they wanted, and I would feel cheated. Maybe it’s a blessing that this is happening to my son when he is so young, before he has a reference for what he is missing. Or maybe he’s just a strong, special kid, like the many other kids that are on the diet to help control their seizures.

The diet seems to be working for my son. Would I rather he be allowed to shove his hand in to his Halloween bag and get sick eating too much candy on Halloween night? Absolutely. Do I wish that he didn’t have epilepsy, or that he had the kind that can be controlled with one, easy medication? Absolutely. The diet is hard. It’s hard on his body, it’s a hard lifestyle to maintain, and I imagine that it’s hard to feel different from everyone else.

But he does have epilepsy, and he has a complicated kind that doesn’t respond well to medicine. I’m just grateful there was another option.

 

Balancing Seizures And Side Effects

Shortly after my son wakes up each morning, I walk with him in to the kitchen. I open up the basket that sits on the counter and grab his weekly pill organizer, popping open the compartment for the day.  I use my finger to push around the pills and find the morning dose of anti-epileptic medication, pulling out six pills and placing them on the counter. My son, still groggy, rubs his eyes as I fill up a cup with water from the fridge and hand it to him. His little fingers struggle to pick each pill up from the counter, but he gets them all, puts them in his mouth and swallows them with the water. “Good job, buddy,” I say, as I rub his head and walk with him in to the living room.

This is how we start every day. Some days, it’s my wife that goes through the routine, some days it is me. But every day, it’s my son that wakes up and starts each morning with a cocktail of medication, and ends each day the same way.

epilepsy seizures side effects

Borrowing a term from my corporate life, getting onboarded in to the epilepsy lifestyle, one learns that 60-70% of people are seizure-free with the first anti-epileptic drug (AED). If the first medicine doesn’t do the job, there is a less than 10% chance of becoming seizure-free with another AED. After 3 failed AEDs, there is less than a 5% chance of becoming seizure-free with another AED. We’ve tried at least 7 medications, not including the short-term ones that were used in the hospital when my son went in to status or the behavior and sedative medications. With each medicine came a dwindling amount of hope but a compounding list of side effects.

Medication Side Effect
Kepra “Kepra Rage”; behavior
Trileptal Exacerbated myoclonic seizures.
Depakote Stopped along with dilantin because of toxicity.
Dilantin Toxic, sever ataxia, other bad stuff.
Zonegran Behavior, ataxia
Onfi Suspect behavior, attention, balance
Depakote (Again) Toxic (again)
Lamictal TBD

The behavioral side effects are the hardest to endure…watching the chemicals that keep my sweet, funny son’s brain from seizing turn him in to something else. We fed him medication that caused hours of having to hold him down and avoid the spitting and punches and hurtful, angry words in order to reduce the number of seizures he was having.  After two, three, or four hours, he might come back to us and we would watch him cry because he truly couldn’t control what his body and his brain were doing. It’s impossible to explain to a five year old what just happened, so we would hold him, and comfort him, and wait for the next barrage.

In the last few months, partly because we started the ketogenic diet, we have removed a number of medicine from his cocktail, and his behavior has greatly improved. But his neurologist added Lamictal last month to help with an increase in nocturnal seizures and to hopefully wean him off Onfi, which might still be causing some behavioral and attention-related side effects. There should be fewer behavior-related side effects with Lamictal, but getting the medication up to an effective dose takes time…what Lamictal lacks in terms of behavioral side effects, it more than makes up for with physical side effects of introducing it too quickly. Fortunately (knocking on wood), we have yet to see any signs of a reaction, so we will stay the course and hope for the best.