Average Number of Paralytic Attacks Per Year?

Hello All,

Yesterday I received an email from a registered nurse researching some things about Periodic Paralysis. She had a question for which she could not find an answer anywhere.

This was her question:

Is there is an average number of attacks that patients with periodic paralysis experience per year?

This is my answer:

Thank you for contacting me. I am curious as to what context you are going to use this information??

You will not find this information anywhere that I know, because there is no such thing as an average number of attacks that someone with Periodic Paralysis has in a year. This is due to many factors, but the main three are that there are several different forms of Periodic Paralysis and within each of these forms, the symptoms and paralytic episodes can be very different for each person, even members in the same family. The second is because the causes behind the symptoms and paralytic attacks, which are called triggers, cause different symptoms and different types of paralytic episodes. The third factor that makes a difference is how well the symptoms and paralytic episodes are controlled. Everyone is different and many things can and do change over time for each person.

The episodes or attacks of paralysis are also very different. They may be full-body, which includes inability to move at all (eyes shut, no ability to speak, heart arrhythmia, blood pressure fluctuation, heart rate fluctuation, breathing issues…including cessation of breathing, low oxygen, choking and the possibility of death). The person can always hear what is going on, despite looking asleep or unconscious. The episodes can be any variation from this down to one leg or arm going numb or only the left side being affected, etc. They can also be flaccid or be total constriction of the muscles causing great pain. There may be ataxia or headaches, cramping or vision issues and more. Periodic Paralysis is more than periods of paralysis. These episodes may last for hours or days or may only last for a few minutes.

Triggers include drugs of any kind…including IVs, anesthesia, insulin, antibiotics, hormones, adrenaline/epinephrine, contrast dyes, anything over-the-counter…exercise, rest after exercise, exertion, stress…good and bad…weather changes, cold and heat, dehydration, menstrual cycle, foods, food additives, food coloring, processed foods, salt, sugar, gluten, carbohydrates, sleep…all stages…infections, influenza and much more.

If someone has discovered their triggers and then avoids them, and is following a p/H balanced diet and is managing their symptoms they may not have any episodes at all, unless occasionally they may accidentally get introduced to something else that may cause an episode. Some may continue to have episodes, despite doing everything correctly.

Some may never have an episode of any type, but instead have gradual permanent progressive muscle weakness PMW. Most all of us develop permanent progressive muscle weakness over our lifetime, especially those who were not diagnosed and treated in a timely manner.

To explain further, I will use myself as an example. Before I had a diagnosis, when my episodes became full-body, as described above, they became very severe lasting hours at a time. This happened four or five time a day and most of the time I was sleeping at night. This went on for months and months and no doctors understood what was happening or how to help me. We (my husband and I) finally figured out what I had and how I could help myself. All drugs were stopped, I got oxygen therapy, my husband began to feed me a p/H balanced diet, we discovered my triggers and avoided them. After a few months my episodes decreased to one or two a month, which were much less severe and shorter in duration. Several years later, I now have episodes only one or two every few months, however, permanent muscle weakness has nearly totally debilitated me. I am unable to do much more than sit in a recliner all day and must use a power wheelchair.

Over my first forty years or so, I had medical issues beginning as a child, all things easily explained away as other things, that I did not realize were partial paralytic episodes. Years of testing and wrong and unneeded drugs and medications due to wrong diagnoses changed/covered my symptoms and harmed me. It took over fifty years before I finally got my diagnosis of Andersen-Tawil Syndrome.

The average time it takes to get a diagnosis for Periodic Paralysis is twenty years. A great deal of damage can and is done during that time to the organs in the body, especially when misdiagnosed and improper drugs and medications are prescribed.

So, as you can see, there is no way to answer your question with a number. We are all different and our episodes are very different.

If you would like to know more please feel free to contact me.

I hope this is helpful.

Sincerely,

Susan Q. Knittle-Hunter

Managing Director

Periodic Paralysis Network

Until later…