For most of my life I was “normal”. I hadn’t ever experienced muscle weakness or paralysis during childhood. No one in my immediate family had even heard of Periodic Paralysis. Many of them still do not know.
It started with severe asthma at 13. Gradually, other issues such as GERD, extreme fatigue, and severe allergies started popping up. All of it kept getting worse and worse until the first symptoms of Periodic Paralysis began. It’s hard to say when exactly when. I remember being in and out of school during this period of time. Not exactly sure for how long. Everything sort of blurs together after a while, it doesn’t feel like that was almost 10 years ago. There are bits and pieces that I can remember clearly. The first episode of full body paralysis is something that I’ve never been able to forget.
I was about 15. It started gradually, like everything else. In the beginning it was just difficult to get up and moving early in the morning around 6am. It was hard to even stay awake at that time of the morning. I remember falling asleep in the floor one time because it was just so hard to stay awake. Gradually, it got to the point where I couldn’t hear my alarm clock anymore because I would be in such a deep sleep. I would set multiple alarms as loud as it could possibly go and was still unable to hear any of it. My mom would have to wake me up in the morning because I could no longer wake myself up at that time anymore. It became more and more difficult until she was barely able to get me up anymore. That’s when the paralysis started.
One morning I woke up and realized I couldn’t move. My eyes refused to open. My lips refused to move as to speak. The muscles in my neck were too weak for me to even turn my head in the slightest. There was nothing. All of my senses still worked, but my muscles refused to do what I told them to. It was terrifying.
I didn’t tell mom at first even though I usually come to her for almost everything. I just wasn’t sure how to. As silly as it sounds, I thought that she would be angry with me. Of course I couldn’t keep it a secret forever as it was extremely difficult to wrap my own head around and deal with. I reached a breaking point and told her everything. She was my rock then and she still is now. I don’t know what my life would be like without her and I am extremely grateful for an amazing mom like her.
Since then, these episodes of full body paralysis only happen in early morning hours. After a while the paralysis will gradually wear off. This can take minutes or hours. Afterwards I have what are called abortive attacks. They can happen at anytime. When this happens, the left side of my body becomes much weaker than the other side and I have mytonia in my left leg. I become exhausted and extremely fatigued. This can last from minutes to hours to days to even a week or two. Over time the abortive attacks happened more frequently and last for longer periods of time.
*For others with HKPP they do not have paralysis only in the mornings. They are able to function at any time of the day, as far as I am aware of. Since sleeping/waking is a trigger for me it causes the paralysis.
My freshman year of high school I experienced the paralysis and abortive attacks just about every morning that I was able to attend school. There would be months where the abortive attacks would get better and other times where it would get worse again. My health fluctuated a lot so I missed a lot of school. I became depressed and developed anxiety which in turn caused me to became more ill. It took us at least 2 years to find a doctor who was able to understand everything that was going on. Luckily I eventually ended up in the right place where I was diagnosed, Duke. All of the doctors visits were an experience in and of itself. It was hell to be honest.