What is an Episode?

What does it look like?

Each episode is unique. Although there are similarities, the severity and duration varies. Below are some of the common characteristics:

• Sudden onsite of fatigue (usually within minutes)
• Severe weakness in body
• Inability to move or speak (lasting from 30 seconds to 30 minutes)
• A heaviness that takes over my body (like a weighted blanket being put on me)
• Ocassionally, dizziness
• Ocassionally, nausea
• The weakness leaves as quickly as it arrives (similar to lifting a blanket off my body)

What are signs to watch for?

I usually have time to get myself into a safe place before an episide begins. Below are some of the signs to watch for:

• Feeling more tired than normal
• A task that is normally easy becomes very difficult (eg. lifting a cup or light object, opening a box, walking up stairs)
• I am unable to wiggle my toes
• I am unable to move my eyes up
• Dizziness or loss of balance

How does it affect my daily living?

It doesn’t really affect my day to day living. The episodes don’t usually happen often, and when they do, it is normally retty quick. I still enjoy the same hobbies I did before this condition started. I am very active, and I enjoy walking, hiking, running, paddle boarding, camping, swimming, and even zip lining and rope climbing courses whien I get an opportunity.

It is probably a good idea for me to stay away from solo sky diving, or rock climbing dangerous cliffs wihout a harness… but I am okay with that!

What is Causing the episodes?

In short, we don’t know what is or what is causing it. Every test we have done has come back normal. We know it is not a seizure. Test have also rules out several other conditions. I am hoping that the genetic testing will provide answers.