Tag Archives: PNES

5 Things You Never Knew About PNES

Hey friends! How are you? I have been off the radar a little bit because I have been sick with episodes and PNES. Don’t know what PNES is? Be prepared to find out!

1. PNES stands for Psychogenic Non Epileptic Seizures. Across the globe people disagree what to call it- but in North America it is called PNES.

2. PNES is triggered by traumatic events, similarly that PTSD is. These traumatic events can range from childhood to adulthood. In my case I believe it is having serious epileptic episodes that have caused PNES.

3. PNES episodes look like seizures, although they are not coming from the brain. They look like seizures, although are more like a panic attack. When I had my most recent episode, I had a very stressful meeting, and then after I headed to the pharmacy to pick up my prescription. There are a few steps leading into the store, so on one of the steps I “felt weird” and immediately sat down. I started to breathe evenly, because I knew it was PNES. This part is spotty, but I remember gasping for air and my fiance was torn up beside me. I was getting very hot in my Winter jacket, but couldn’t say anything. I also wanted someone to call 911, but again thankfully that was taken care of. I was grasping for words when I could finally start talking, but it was really slow.

4. 20-30% of people with epilepsy have PNES. I remember being so mad when I was diagnosed with it! Not only did I have to deal with seizures, but these weird trauma seizures as well!

5.  It is challenging to treat PNES. For me, I use regular meditation and deep breathing.
According to http://www.epilepsy.com, “For some patients with psychogenic non epileptic seizures, the seizures are a manifestation of trauma, which is also known as Post Traumatic Stress Disorder (PTSD). In order to treat patients with PTSD, the clinician has to take the seizure apart to see what the seizure represents in terms of emotions and memory as well as where this trauma is stored in the body,” Some people use Eye Movement Desensitization and Reprocessing to help their PNES.

Essentially, these days I am working through my PNES. I am super frustrated that my seizures just started to get under control and the PNES is popping up all over the place.


Sita & Jojo


Happy Three Year Anniversary to Life at Full Volume!!!

DSC_0532Hey friends! SO as you can see, I have some pretty exciting news to share: today marks the third year anniversary of this blog “Life at Full Volume!“ I can’t believe how I have managed to consistently keep my blog up to date, and the community that has formed around me, based on my different thoughts and ideas. It makes me happy that I may have made even the tiniest morsel of a difference in someone’s life. Maybe a person living with Epilepsy, maybe a parent, spouse or loved one. Throughout these three years, I hope one person said “aha! I am not alone! What I am going through is totally normal too! Sita is going through it herself!” (The boy is also pretty happy about it too!!)

I am not even sure where to start with regards to how I can thank my loyal followers. Just thank you, thank you, THANK YOU from the bottom of my heart. Taking time out of your busy day to read my blog posts means a lot. You are totally awesome and let’s celebratteeeeee!! Exciting news to come next month!!

Lots of love xox

Seizures and Mental Health; A Twisty Road

keep-talking-about-mental-health greenSo I haven’t talked about this at all on my blog. Mostly because I was embarrassed and had internalized stigma about it. Well, here goes:

    When I went home in 2013 to take a year off from university, my neurologist had diagnosed me as having both epileptic seizures as well as emotionally based seizures, which are otherwise known as Psychogenic Epileptic seizures (PNES). PNES is defined as “attacks that may look like epileptic seizures, but are not caused by abnormal brain electrical discharges. They are a manifestation of psychological distress. Frequently, patients with PNES may look like they are experiencing generalized convulsions similar to tonic clonic seizures with falling and shaking.” (http://www.epilepsy.com/article/2014/3/truth-about-psychogenic-nonepileptic-seizures)

     People are scared to talk about mental health issues due to fear of being stigmatized, or shunned. Not to mention there is so much misunderstand about various mental health issues and sometimes people only believe the stereotypes that they hear about. How would people respond to me if I told them that some of my seizures were responses to psychological distress? Would they be more likely to steer away from me or would they embrace it with open arms? My mind told me that it was definitely the former, not the latter. Our society places a huge value on being autonomous and independent. Being hit with a double whammy of some form of mental health issue on top of a chronic condition was enough to make me weary of others reactions, so I avoided talking about it. Having epilepsy in and of itself is hard enough, so adding one more stigma to the list wasn’t something that I was pumped about.

     I stopped blogging for awhile after that because I was worried that a future employer would find this post and see me as ‘unstable’ and even less desirable as a candidate for a potential job. What does this say about mental health in our society?!

      Hello My Name Is I have been extremely depressed before, and during that period of my life I could barely crawl out of bed. I was having ongoing seizures, was still in classes, and I found that I was able to make it through to Wednesday but then I completely crashed. I stopped going to the gym, and my zest for life in general was gone. Life was meaningless. I cried everyday for a week, yet I convinced myself that I was just having ‘a bad day’. Except a ‘Bad Day’ meant every day. A bad day my ass!! Something’s going on if your energy plummets and you feel sad and have to leave class early due to constant crying. My mom was worried that I would drop out of classes. I just pushed and pushed through it but could I just ‘snap out of it’? (A common myth of people with depression). NO! It was like I had fallen down a hole and was stuck without a ladder.

       Thankfully this depression did not last forever, and although I indignantly refused Anti Depressants, I managed to heal. I’m not totally sure how, but I got through. It wasn’t a question of “snapping out of it”, but over time I felt more like myself. I am more of my usual bubbly self who dances in her room to dance tunes and smiles while walking down the street. Sounds corny, I know but my life is a little corny sometimes. Even my parents could tell over the phone how much better I sounded. Parents are weird like that, hey?

      Anyways, let’s fast forward to November 2013. I did extensive testing to find out more about my seizures, and the doctors concluded that ALL of my seizures were electrically based. So essentially I didn’t have Psychogenic Epilepsy seizures as well as epileptic ones. I was relieved about this, but that’s not the point of this post. I wanted to shed light on how having a double whammy of a diagnosis (Epilepsy and emotionally based seizures) could have really shifted my life around.

      I know for sure that if I truly had a diagnosis of emotionally based seizures only my closest friends and family would know about it. I consider myself to be very open and compassionate towards others mental health issues, even though I have no idea what it’s like to live with it. On the other hand, I am pretty tough on myself and it would probably take a long time to accept it. Exercising compassion towards yourself is difficult, as you know who you are and who you want to be. If you are not who you want to be it can be sometimes be frustrating, difficult, and even infuriating.

     Essentially. I wish there was less stigma about mental health issues in our society so people would actually feel comfortable talking about it. I find that talking about important things that I’m going through really helps me to process how I feel about it. I also wish that mental health issues wouldn’t get thrown around as a joke, like “Oh I’m so OCD today or I’m so Bipolar today.” Some people really struggle and it is not okay to make light of it. Depending on where you live, it can be even difficult to access the health care that you need, or perhaps your family doesn’t believe in mental health issues and are not even willing to help. Can you imagine that? Maybe you already know what I mean, I don’t know. I am sure there are people in the world who are comfortable with talking about their mental health issue, which is amazing. I just wish that it was safer for people to disclose. If my diagnosis of emotionally based seizures was true, I know I could talk the talk, but it would be a hell of a journey to walk the walk. Love you all! xox