I wake up nearly every morning totally paralyzed. I cannot move in any way. I cannot open my eyes. I cannot speak. My mouth is open and dry. I have urges to swallow, but I am not able to, so there is choking and an unusual sound in my throat every few minutes. My heartbeat increases and decreases intermittently and beats irregularly. As this happens, my blood pressure also increases and decreases and my breathing may become labored and sometimes stop entirely. These attacks may last from forty-five minutes to several hours. During these episodes I am awake and I am aware of and can hear everything going on around me.

At any time during an episode I may have an irregular heartbeat or I may go into cardiac arrest and/or respiratory arrest and die. Due to this knowledge, each episode can be frightening and frustrating and at times I cry. I can feel the tears running down my cheeks, but can do nothing to wipe them away.

I have an extremely rare, hereditary, and progressive disease called Periodic Paralysis. It can be totally debilitating and is difficult to diagnose. I was 62 , 3 years ago, when I was finally diagnosed, after experiencing symptoms my entire life, nearly dying due to misdiagnosis and wrong medications and after seeing over 30 doctors over a period of 6 years. At least 4 generations of my family have symptoms of this condition. It is a mineral metabolic disorder called an ion channelopathy. It is often misdiagnosed and mistreated, thus causing more damage or possible death to the person with it. There are several types and the type I have, a variant of Andersen-Tawil Syndrome, is the most rare and the most serious type. (Long QT interval heart beats can accompany the episodes.) (Specialist say there are only about 100 of us worldwide but it would appear there are many more than that who are misdiagnosed.)

On a cellular level, triggered by things such as sleep, exercise, sugar, salt, most medications, stress, cold, heat, anesthesia, adrenaline, IVs, etc., potassium wrongly enters the muscles either temporarily weakening or paralyzing the individual. Episodes can be full body lasting hours or days. Permanent muscle weakness may occur over time. If it affects the breathing muscles it can become terminal. 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. Gradual, progressive, muscular weakness can also affect the individual with this condition.

There are no known cures, but there are treatments/drugs for some forms (Hypokalemic Periodic Paralysis and Hyperkalemic Periodic Paralysis) which can be and are successful for some individuals. The type I have, however, has no traditional medications, which can alleviate the symptoms, but by avoiding the triggers and by using some natural methods, the number of paralytic episodes can be reduced and the severity of the episodes can be lessened.

My husband and I have a website ( www.periodicparalysisnetwork.com ) and a discussion board and support group on Facebook to provide hope and assist others with support and the natural methods we have discovered. We get new members almost daily from all over the world (Iran, Ukraine, Turkey, Denmark, Wales, Netherlands, Canada, Finland, Australia, etc) who are seeking help for themselves, their children and entire families and are unable to find it anywhere. We provide ideas on how to find doctors, get a diagnosis, get the proper help in the ER, how to discover their triggers, etc.. We have also written and published the book, “Living With Periodic Paralysis: The Mystery Unraveled”, which is an extension and compilation of all of the above.

4 thoughts on “Living With Periodic Paralysis: The Mystery Unraveled”

  1. I forgot to add that many individuals with various forms of Periodic Paralysis can be diagnosed genetically, most forms are found as deviations in Chromosome 17. However, a large number of us have, as yet, undiscovered genetic codes. We are diagnosed clinically, based on our symptoms.

  2. Beryl Park says:

    Hi Susan!
    I’ve just read your story. I followed a link from Living with Ataxia.
    It’s so important to able to give support and advice.
    I have Spinocerebellar Ataxia. Best wishes. xB

  3. Susan Hunter says:

    Hello Beryl,

    Thanks for contacting me. I do not have a form of ataxia, but I have had ataxia (for quite a long period of time) due to being given the wrong medications. For awile, they thought I had Friedreich’s Ataxia. I understand some of what you may experience. I am sorry that you are experiencing the symptoms of a rare disease also……Hugs to you…..Susan

  4. Sandy says:

    My husband was recently diagnosed with normokalemic periodic paralysis after a local doctor basically accused him of trying to scam the system to get SSDI. At least one of his half brothers has been diagnosed and it seems, based on symptoms, his maternal uncle has it. By the way, the genetic testing showed the defect in the SCN4a gene.

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