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.

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Love,
Sita & Jojo

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Dear Diary: Confessions of a Millenial

Hey bb’s,

20180204_155752.jpghave run into a problem recently and I feel it needs to be addressed.

I was talking to my mom on the phone today, and she said it was fine that I quit doing something that I was pursuing. But here’s the thing: Why did I need HER permission to do something?

First of all, I am a 27 year old woman. Why do I need to ask permission to do something in life? I feel as though we need to hear  voices of others before we proceed in life. (This is not everyone, but I have noticed it in life). Why do I need permission to take a self care day? To not go to something I was invited to? My friend pointed out that it has to being good, being a woman, and to not trust yourself.

This is stunting us from becoming adults here! Especially as an individual with a disability, I need to be an adult so I can advocate for myself. My parents aren’t going to be around for me forever, and my partner can’t be there for me at every beck and call.

If we constantly ask for permission for something that we need to do, there is going to be an entire generation of people running around needing permission to make the next move in their lives.  I am not saying every person in the Millennial generation is like this, but I feel that it is prevalent!  When I was a teen, and still sometimes today, I will sit down with myself and give myself pep talks. When I was 17, I sat myself down in my room and said”okay, go away for university. All of your friends are leaving. It is better to have left then be left”. What happened to me giving MYSELF permission?!

I am going to work on it…if it’s an issue for you too, work on it with me too.

Peace.

Love,

Sita & Jojo