Psychogenic Non Epileptic Seizures – Work and Stuff

Little bit of a break down, but after I made this video I started feeling better and did a little yoga with a few friends.

A few days later my co-workers were talking about how some video games trigger seizures. Talking to the woman who sits next to me I said, “yeah the only seizure I’ve had from a screen was at a concert where there was a huge LED strobe light, I went right over back wards.”
She kind of laughed because I was and said, “yeah I’ve never had a seizure.”
I said, a bit more seriously, “Yes, I have a seizure disorder.”
She replied, “wow, I’m sorry. Can you drive?”
I told her a bit about not driving far and how it’s really great I can walk to work. She seems satisfied then changed the conversation to diabetes. I have no idea why – maybe diabetes is easier to talk about then seizures?? Anyway, at lease one person at work knows.

Kind of felt good to get it off my chest and I realized it’s only as big a deal as I make it.

Energy and Fatigue

Let’s face it the seizures suck, but most of my battle has been with fatigue. It’s the first warning sign that a seizure could easily be triggered. I explain fatigue this way…if a lion started chasing me and I was tired, I could still run. If I were fatigued, even if a lion was chasing me I could not run. I started taking these supplements a couple weeks ago and I’ve noticed a big difference in my energy levels. I just worked a 7.5 hour day with a 15 min break, came home and did laundry, cooked dinner and ate a big meal…and I still have energy. I’m tired, but I’m not fatigued. I also started working at a health food store and I get discounts of food and lunch…so I’ve been eating super healthy, local, organic, raw foods. I think it’s making a difference. I did hit a “wall” a couple hours before my shift was up, the place was slammed and I thought, “uh oh, just breathe.” Perfect recipe for a seizure, but I pulled through. What? Crazy. Just like I would have before I got sick. 

Note: my app keeps crashing when I try to attach the photo of the supplements. They are called “Energize & Balance” Brenda Watson’s Vital Woman, Renew Life. I am familiar with all the ingredients except the last four. The ingredients are:

  • Yerba Mate
  • Korean Ginseng 
  • Ashwagandha root
  • Green Trea Extract
  • Rhidiola Root
  • Gotu Kola 
  • Cayenne
  • Bitter Orange extract
  • Banaba leaf
  • Quercetin
  • Horsetail
  • Protease 8,000 HUT
  • Protease, Acid Stable 30 SAPU
  • Amylase 1,000 DU
  • Lipase 150 FIP

No Visible Bruises: Domestic Violence and Traumatic Brain Injury

This is a very informative article about how abuse cases are handled in emergency rooms and with police. It’s normal to do a CT scan and watch for symptoms that include headaches and seizures from, say a sports related injury, but not common to do the same with a women who might come in who had been attacked and strangled.

“What researchers have learned from combat soldiers and football players and car-accident victims is only now making its way into the domestic-violence community: that the poor recall, the recanting, the changing details, along with other markers, like anxiety, hyper-vigilance, and headaches, can all be signs of Traumatic Brain Injury…“We’re really good now … if a kid comes in with an athletic injury, or someone’s been in a car accident, about working people up for post-concussive syndrome,” Campbell says. Such symptoms include vision and hearing problems, seizures, ringing ears, memory loss, headaches, and blacking out. “But somehow, we’re not as good with victims” of domestic violence, she says. “We’re not saying, ‘O.K., did you lose consciousness for those bruises? Have you had prior strangulations and/or head injuries?’ So we need to do a better job of applying that protocol to abused women.”

Read The Full Article Here


Addiction and Psychogenic Seizures

Ooo, interesting TED talk about addiction.
My yoga teacher has a very different approach to addiction, from the Yoga Sutras it talks about attachments and aversions. Everyone has them so everyone is kind of like, a little addict but we all have a different drug of choice. My drug of choice is to get sick, I just start seizing, it’s a way my body shuts down so I don’t have to feel pain. But I think addiction is an attachment to something usually in the future that we find sweet and comforting. Aversion is usually something from the past that we will do anything to not have to feel again, in extreme forms PTSD.
My yoga teacher says the key to severing attachments and aversions to past and future are staying compassionate to self and being extremely CURIOUS. You say, “isn’t it interesting that I ______________.” so interesting. And you make friends with that “negative” part of you, and you say, “Hello, I love you. Even if you are scared and make me seize.”

Fatigue and PNES

I have a hard time explaining my fatigue to family and friends. While I may not have a seizure every day, the fatigue is there everyday. I say, “It’s not like being tired, if I were just tired and a lion started chasing me, I could still jump up and run. When I am fatigued, I would not be able to jump up and run.”

It doesn’t leave much room for spontaneity. I have a new man in my life, and he called me recently at night and said, “come up to see me!” and I tried to explain that I‘d used up all my energy for the day. He didn’t understand and was hurt at first, until I gave him some reading material on PNES.

I liked this article. It’s about people with lupus, but I really resonated about how I have to schedule my days out. “People with lupus have to parcel out their daily activities and tasks because they often aren’t able to do everything they want or need to do. To illustrate this, a spoon is removed from the bunch for every daily task completed to show the choices that must be made by a person with lupus. I still use my ‘spoon theory’ with family and friends as they ask me how many spoons I have left…”