Frequently Asked Questions About Periodic Paralysis

(Personal Interviewer)

Hi Susan, 

Below I listed some questions for you. I read a few of the articles available profiling you, so if it’s all right, I’ll skip most of the background questions I had. Instead, I’d love if you could discuss the following: 

1. Diagnosis is a huge problem for people with PP. You were misdiagnosed with many things, including MS for ten (!) years, as I read. What do you think were one or two key things that you or someone else did that helped you get the correct diagnosis of Andersen-Tawil, finally?

There were three main factors that helped me to finally get my diagnosis of Andersen-Tawil Syndrome.

First, I created a family chart, which included pictures and medical information from several generations of my family members, alive and dead. I did this by sending out a medical questionnaire and spoke with my family members. I was amazed when I received them back with all the medical issues that fit the characteristics of ATS and that everyone thought was ‘normal’ and that each had been suffering in silence. I also created a file with all of my medical records and tests results and photos of my own characteristics. I made charts to monitor my symptoms and vitals. I included as much information about Andersen-Tawil Syndrome as I could find.

Second, I searched until I found a doctor willing to listen, to search through my information and to work with me.

Third, I ‘hit him between the eyes with the facts.’

2. Do you recall your worst paralytic episode? What was it like and what did you do to alleviate it?

My worst paralytic episode lasted for over seven hours. That is from my first symptom (heavy eyelids) and slipping into the full-body episode within minutes, until I was unable to open my eyes and move my mouth. It took several more hours to come out of it totally and I remained very weak and in bed for several days until I was able to get back to my ‘normal.’

I was unable to do anything to alleviate it or the symptoms. Once they begin, there is nothing that can be done for my episodes except to live through them. My husband monitored my vitals and made sure I was comfortable and warm, etc. He spoke to me telling me the results of blood pressure, heart rate, etc. I was awake and alert during the entire episode. At times I was in pain from cramping muscles.

I could not open my eyes or speak. I could not move in any way. I had heart arrhythmia (not sure exactly which ones at the time but I do experience long QT and ventricular arrhythmia and I could feel the waves of palpitations as they increased and decreased), fluctuating tachycardia and bradycardia, breathing difficulties…even stoppage at times, low oxygen levels, choking, blood pressure fluctuation, and more. These all came in waves. At times I was in pain from cramping muscles.When in an episode, I listen to the TV if it is on. It helps to keep my mind occupied and it gives me a sense of time. Sometimes I use guided imagery to help myself relax when my heart palpitates or if my blood pressure or breathing becomes distressed. This episode was extremely frightening for me and frustrating to live through as the hours passed. Before this one, my longest episodes were about three to four hours.

The best way to manage my episodes of paralysis (and for anyone who has PP symptoms) is to identify what causes them and then avoid those things. But, they still can happen, but not as severe or for not as long, hopefully. This will not stop the progressive permanent muscle weakness that sets in, however.

3. What advice might you give to someone who has weakness or paralytic episodes and encounters disbelief from doctors, or even family?

This is a difficult question to answer. I have members joining our Periodic Paralysis Network Support Group asking me this question everyday. It is something we all deal with, including me.

I would have them do the same thing I did in the first question, set out to prove the diagnosis with all of the information they can collect about themselves and the particular form of PP that they probably have. Then I would have them purchase one or two of the books I have written, especially The Periodic Paralysis Guide and Workbook: Be All You Can Be Naturally, and What Is Periodic Paralysis?: A Disease Like No Other and present them to those people. Both were designed to assist with getting a diagnosis and helping doctors and family members to understand Periodic Paralysis.

4. Has your care and management changed much since you were diagnosed in 2011? If so, has it changed for better, worse, or is it mostly the same?

Seven years ago one of the doctors who diagnosed me gave me a drug that at the time was one of two off-label drugs used to treat PP. I nearly died from it and had no real answers of what to do if one could not tolerate the drugs. After researching it we discovered the truth about those drugs and how they really harm most of us with Periodic Paralysis, if not at first then over time. My condition continued to decline with the daily episodes as described above. My husband researched how he could help me to reduce the episodes and save my life. He found all-natural ways and we tried them using trial and error.

It was not long before I was improving in many ways. Six months later I was doing so much better. And I finally reached a point where I was once again functioning and my episodes of paralysis had decreased to one or twice every few months. I still had many issues from my misdiagnoses for over 50 years and from drugs I should never have been on, but I was able to create the Periodic Paralysis Forum and began writing our books.

My medical care changed in that doctors finally believed the diagnosis, but told me they could do nothing for me since I was unable to take drugs. I have found a doctor who provides me with ‘supportive’ care and lets me take the lead on what I may need.I continue to use all-natural methods for my own care and see my doctor once a year for lab work and follow-up. I monitor my own vitals daily, I am on oxygen therapy and I must use a power wheelchair due to exercise intolerance and gradual permanent muscle weakness.

I continue to have issues with my heart and blood pressure. I spend most of my day sitting in a recliner resting as I manage the Periodic Paralysis Network Support Group and Forum.

There is no cure for Periodic Paralysis but our natural methods help us to manage our symptoms and do lessen the frequency and duration of our episodes.

5. You worked to build up your own support community, especially through the PPN it seems. What does it mean to you to know and connect with others who have a paralytic condition?

When I was seeking help, after I realized I had a form of Periodic Paralysis, I did not find the kind of help I needed. The largest of the Periodic Paralysis groups, did not allow people without a ‘genetic’ diagnosis to join their listserv. They did have another group that I could belong to that had a feature in which a person could ask questions of doctors. I was so frightened at the time and needed help and answers to serious questions like, “When should you call 911 when in an episode?” I asked that question and several others and am actually still waiting for someone to answer me nine years later!! 

After I got my ‘clinical’ diagnosis (based on symptoms) of Andersen-Tawil Syndrome, others in that group scoffed at me and told me I could not possibly have that diagnosis. They did not believe it because it was not a ‘genetic’ diagnosis (I later did get a genetic diagnosis). I was treated very poorly. I tried another group and got much the same treatment there.

After much research, trial and error and having learned as much as we could at the time about Periodic Paralysis, my husband and I decided that we needed to create our own support group and help others in a way that we were not helped. We wanted to be there with answers to questions as people were asking them. We wanted a group that anyone could join whether they had a diagnosis or not. We wanted a group that allowed individuals with genetic and clinical diagnoses. We created the Periodic Paralysis Network. Since that time we have a forum with over 1,000 members. We have six different discussion groups related to Periodic Paralysis, a website, a Facebook page, a Blog with over 175 articles related to Periodic Paralysis and we have written four books, the only books written about Periodic Paralysis.

It is amazing to know that I was dying nine years ago and today we are now providing hope through support, education and advocacy to over 1,000 people and their families who have this very rare and debilitating medical condition. We share our drug-free, all-natural methods and provide plans for getting a diagnosis, discovering triggers and so much more. We are changing lives daily.