Episodes of Paralysis

Hello All,

I had another very rough day yesterday and I seem to have settled into an “abortive attack”. So, as I contemplate my choice of topics to write about today, I have decided to write about what we call “episodes” or “attacks” of paralysis

It is a misconception that everyone with any form of Periodic Paralysis becomes totally paralyzed periodically. The truth is, some individuals with Periodic Paralysis have never actually had an episode of paralysis. They may, however, over time, develop permanent muscle weakness and need a wheelchair or scooter.  For most individuals, the episodes or attacks, are periods of time with muscle weakness or partial paralysis, rather than full-body paralysis. Over time, these may progress to full-body paralysis. Some individuals may have full-body episodes from the very beginning.

An individual may be only partially paralyzed. Only his or her legs may be paralyzed or they may only be weak. Episodes may occur as sudden falls or dropping to the floor. Feet or legs or arms may go numb and tingly. Muscles in the calves may become very tight and painful. An episode may include overall weakness with arrhythmia and fluctuating blood pressure. Walking may suddenly become difficult due to a weak foot.

Each of these attacks or episodes usually has a distinct beginning and end. Each episode is intermittent. They come and go. Most people will be normal between them or their muscle strength will improve between them. Many develop permanent muscle weakness over time.

That being said, the causes of these episodes and the reasons to avoid them are important to note here. On a cellular level, episodes are triggered by things such as sleep, exercise, sugar, salt, most medications, stress, cold, heat, anesthesia, adrenaline, IVs, and much more. Potassium wrongly enters the muscles either temporarily weakening or paralyzing the individual. Episodes may last hours or days. For some, dangerous heart arrhythmia, heart rate fluctuation, blood pressure fluctuation, choking, breathing difficulties, cardiac arrest and/or respiratory arrest can also accompany the episodes. Due to these complications, it is extremely important to avoid the episodes.

After years of episodes of intermittent muscle weakness, and the development of permanent muscle weakness including my breathing muscles, I developed frightening full-body episodes of paralysis.

The following is my description of what it I experience in an episode. It was written in 2010 for my doctor to help him understand:

”Usually, I wake up in the morning and I am paralyzed. I find I can’t move. I can’t open my eyes. My mouth is open. I can’t breathe through my nose. I have urges to swallow but can’t so there is a choking sound in my throat every few minutes. Sometimes my heart will race or beat irregularly, though usually, there is no problem with my heart. My mouth is very dry. I cannot speak

As I begin to come out of it, my mouth will start to get saliva, my eyes will open but I can only see what is in front of me, since I can’t move my head. Sometimes my eyes will jerk around when I first open them, usually jerking up. My body will sometimes jerk a little. Sometimes there is a big breath my body will take.

Sometimes, I will go back into it. My eyes close, I feel very hot and all the symptoms return. Sometimes there will be a few jerks as I go back into it.

During all of this I am awake and am aware of everything going on around me. Sometimes I begin to cry, due to the frustration, and fear. I can feel the tears running down my cheeks.

If I have these at times other than upon waking, the symptoms are the same.  I get a strange sensation of heat body wide, usually beginning in my back. My eyes will close and then my body goes limp. I may have a few jerks as I am going limp. My mouth will open and I am in it…unable to move, speak or open my eyes.

Sometimes, I don’t go too deep. It is all the same but I am able to open my eyes and can speak a little with a tight tongue and tight lips. My mouth is still open, however. I can’t move my body.

Once one of these begins, it may last from several hours or can be as short as about 10 minutes, if it is a second or third one in a row.

It takes about 15 to 30 minutes to many hours to come out of it enough to move a little and attempt speech, though usually several days to fully recover. I am always left with lingering weakness for many hours that can linger into days. Speaking is difficult. Walking is difficult. My arms and hands come back sooner than my legs. I begin to get feeling back in my body. I can move my lips. I begin to breath thru my nose again. It is difficult to speak or move but it gradually comes back. Speech is very difficult; my lips don’t want to move. My tongue is difficult to move. I will suddenly have an urgency to urinate. If, at this point, I get help to the bathroom, I am like a rag doll, especially my legs. My arms flail, like a child just learning to stand and walk; balancing herself. 

For many hours, I remain too weak to do much of anything but sit up in bed or sit in a recliner. I must use my walker or a wheelchair.

I do not know what brings on or triggers these attacks/episodes (we know now). I know that sleep has something to do with some of them, but not all of them. I know that sometimes, when I wake up during the night with an urgency to urinate, I am coming out of one, because I have all of the symptoms previously discussed. My arms and hands and legs are numb and feeling is just coming back. My mouth is tight and dry. Walking is difficult.” (May 28, 2010)

After that time, my episodes got increasingly worse and have lasted up to 7 hours. I have severe issues with blood pressure fluctuation, heart rate fluctuation, arrhythmia, including long QT interval heartbeats, choking, and breathing difficulties. I must do everything I can to avoid them and now I do have some relief from these major attacks.

 
We have discovered ways to reduce the number and severity of the episodes. We share this with our members and it is included in our books. The following is a quick overview and will be discussed in depth on another day:

We do this by a recommendation of evaluating our medications (most make it worse and create horrible life-threatening complications and even death), knowing if we have high or low potassium issues, monitoring our vitals, eating a diet based on our type of PP, discovering our triggers, getting enough rest, learning to relax, ensuring proper hydration, maintaining a moderate environment, learning our exercise limitations, using possible supplements, obtaining friend and family support, and seeking our own mental well being based on education and understanding of the condition and how it affects us.

Despite doing all of this, we still find ourselves in abortive attacks for periods of time. Abortive attacks are periods of extended time anywhere from hours, days, weeks or months in which some individuals are totally debilitated by extreme muscle weakness without going into full paralysis. The previously described common symptoms may begin but the full attack or total paralysis may not occur. The person is left with severe weakness and other symptoms such as extreme fatigue.  It is difficult to do anything physically and it also can affect cognition abilities, such as memory, thought processing and speech and some become very fragile emotionally. The individual may want to sleep and may have no appetite.
 
In my own case the abortive attacks are totally debilitating and actually worse than the episodes of paralysis. When I am in them, I wish I could slip into paralysis and get it “over with”. I have experienced no worse feelings of weakness and helplessness in my life other than being in a full body state of paralysis.

I have included a slide show of an episode I experienced a few years ago. I also have videos of a few and will share if someone is interested in seeing a full-body episode of Periodic Paralysis.

Until later…