Living with Periodic Paralysis: The Blog

This blog was created and designed to educate the world about Periodic Paralysis a rare, inherited, hard to diagnose, debilitating and cruel mineral metabolic disorder. I have two variants of this condition and my life is filled with constant challenges as I attempt to manage my symptoms to stay alive. My husband and I are co-founders of the Periodic Paralysis Network, Inc. This blog is an extension of our educational and support network at www.periodicparalysisnetworkinc.com .

Saturday, March 30, 2019

I Repeat: No Drugs, People With PP Should Not Even Take Over-The-Counter Drugs

I Repeat:

No Drugs, People With PP Should Take No Drugs, Not Even Over-The-Counter Drugs

This subject comes up every day, every time I add a new person to our Periodic Paralysis Network Support Group. I tell them that we do not discuss drugs because they are out worst triggers and for liability reasons (we do not want to be sued). I tell them that we only discuss them in the terms of how harmful they can be for us. This is because PP is a mineral metabolic disorder. This means that we must keep our body in total balance and drugs cause imbalances for us, among other issues.

We discuss only natural ways to manage our symptoms. This information can be found in other Blog Articles and our books and is discussed daily on the Support Group.

Today, a new member posted about a reaction she had to a simple aspirin. I wanted to respond and remembered what happened to me when I took a simple Alleve/Naproxen, knowing better at the time, but wanted some relief from some extreme pain I was experiencing. I did a little research to remind myself of the ingredients in Alleve and why I thought I had a reaction to it. I was shocked at what I found about the side effects, that are listed for medical professionals, but not necessarily for the consumer. I want to share my response. It is very important for people with Periodic Paralysis. This is just one example of why we should not take drugs. This is just a simple over-the-counter drug! Imagine the issues related to those that are not 'simple' drugs!

My Response:

All of us with PP must be extremely careful of anything we put in our mouth....even a simple over-the-counter Alleve!!

I took an Alleve (Naproxen) once a few years ago when I was in more pain than usual. (I have been in body wide pain since I was a teenager...so my pain was really bad that day...I do not ever take anything for it...I just live with it. Over the years, the prescriptions I tried caused all types of issues from passing out, to ataxia, to paralysis, etc ) I was hoping that it would not cause a problem...within an hour I was in full body, total paralysis lasting for hours. Later, when I was able to move again, I checked the label and noticed that it had sodium in it. I assumed it was the sodium level that was too much.

However, I just checked/researched for writing my response and found the following list of things that can happen from a simple Alleve tablet...just for normal people...imagine what I thought just now as I saw "HYPERKALEMIA" as a side effect of it!!!! And MUSCLE WEAKNESS!!!!! And SOMETIMES FATAL!!!!! No wonder that happened to me!! With ATS (Andersen-Tawil Syndrome) I have problems with low or high potassium or even if it just shifts while in normal ranges!!!

Check it out for yourself...This list is what health professionals see, but not what the general public sees. Scroll down to 4.8 Undesirable effects.

All of us will PP must be extremely careful of anything we put in our mouth...even a simple Alleve!! I don't make this stuff up...I just try to pass the truth along to keep everyone safe!! Those of us with PP should not take drugs of any form including over-the-counter remedies!

https://www.medicines.org.uk/emc/product/5823/smpc

Until Later...

Tuesday, March 26, 2019

Providing HOPE to Over 850 Members Now!!

If you have or think you have a form of Periodic Paralysis please join us on our PPN Support Group. 

https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/

Also, be sure to have a look at our fresh and updated PPN Website.

http://www.periodicparalysisnetwork.com/

Sunday, February 10, 2019

Providing HOPE to over 825 members!!

If you have a form of Periodic Paralysis or think you may have Periodic Paralysis, please feel free to join us on our

Periodic Paralysis Network Support Group!!

https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/

Thursday, February 7, 2019

Happy Eighth Anniversary!!! PPN 2019

Happy Eighth Anniversary to PPN!!!

Our Mission Statement: The Periodic Paralysis Network exists to assist individuals who have Periodic Paralysis with support, education and advocacy and by providing a hands-on approach to understanding the disease, getting a proper diagnosis, managing the symptoms in all natural ways, and assisting their caregivers and family members. 

Our Website, other discussion groups/boards, books and activities available through PPN: 

The following are the services and features of our PPN forum:

PPN Website: www.periodicparalysisnetwork.com 

PPN Books: 

"Living With Periodic Paralysis: The Mystery Unraveled" 

"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally" 

Video about this Guide and Workbook: https://www.facebook.com/sqkhunter/videos/10153659957417014/ 

"A Bill Of Rights For Periodic Paralysis Patients" 

"What Is Periodic Paralysis?: A Disease Like No Other" 

Our books are found on Amazon.com: 

https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1 

and our PPN website: 

http://www.periodicparalysisnetwork.com/Bookstore/

PPN Blog: We have over 150 blog articles written about all aspects of Periodic Paralysis. The Blog was created to provide information to all of our members, as well as, family members, friends and medical professionals who want to know more about Periodic Paralysis. http://livingwithperiodicparalysis.blogspot.com/ 

PPN Website Facebook Page: Our PPN Facebook Page is designed to share more general information and articles related to Periodic Paralysis, Chronic Illness and Invisible Illness. It is also designed to share with family members and friends to provide them with a better understanding about PP, chronic and invisible illness. https://www.facebook.com/PeriodicParalysisNetwork 

Email: periodicparalysisnetwork@gmail.com 

Video about Periodic Paralysis: https://www.youtube.com/watch?v=YSRVOkdFRQc 

Periodic Paralysis World Awareness Day Page: This page was created to bring awareness to the world about Periodic Paralysis. We have declared and observe 'Periodic Paralysis World Awareness Day' February 7th each year!   https://www.facebook.com/PPAwarenessDay/

Please check out our PPN Members World Map: Let us know if you want to be added to our map! http://www.multiplottr.com/?map_id=55083 

Thank you all for your support 

Calvin Hunter and Susan Q. Knittle-Hunter ~ Co-Founders, Co-Creators, Co-Managers 

Periodic Paralysis Network, Inc. ~ Sequim, Washington U.S.A. 

All rights reserved. Copyright © 2019 Periodic Paralysis Network ............................................................................................................

Sunday, November 11, 2018

Happy Fifth Anniversary to Our PPN Blog!!

Happy Fifth Anniversary to Our PPN Blog!!

It has been five years since I created and wrote my first article in our Periodic Paralysis Network (PPN) Blog, Living With Periodic Paralysis: The Blog. I decided because our PPN Support Group was open to only those who have PP and their family members, that we needed another format for sharing information about Periodic Paralysis (PP) and for bringing more awareness to this rare, little understood, disabling and cruel medical condition, which is a mineral metabolic disorder.

Since that day, over 150 articles have been written and shared about every aspect of Periodic Paralysis from what it is, to how to manage the symptoms and how to get a diagnosis.

The following was our first Blog article:

Hello All,

Welcome to our new blog!!!! It is our desire to share with the world everything and anything we can about Periodic Paralysis with the hope of educating and supporting others with the condition and educating others who do not have it but would like to know about it, including doctors and medical professionals. I began a blog several years ago and wrote daily for over a year, but it was a closed blog, as is our support group, so only our members could read what I wrote. We have been looking for a way to be able to reach more people with our important information, so decided it was time to create a new blog and open it up to the world!!!! Please feel free to ask questions and share your experiences with us.

We would like to introduce ourselves:

I am Susan Q. Knittle-Hunter and my husband Calvin Hunter. We are passionate about helping others with Periodic Paralysis and sharing information about it. Periodic Paralysis is very rare, hereditary, debilitating, difficult to diagnose, mineral metabolic disorder, also known as an ion channelopathy. I have a form of it and was 62 years old when I was finally diagnosed, 3 (now 8) years ago, after suffering the effects of it nearly my entire life and nearly dying from the wrong diagnoses and incorrect treatments I received.

Calvin Hunter and I are the founders and creators of an on-line independent organization, the Periodic Paralysis Network, a private educational, support and advocacy organization, which is patient-safety-related due to the serious nature and potential life-threatening symptoms and side effects of this condition if it is not treated correctly. We have a website with a forum containing 3 distinct discussion groups and we have written and published two books, the only two (now 4) books written about Periodic Paralysis...Living With Periodic Paralysis: The Mystery Unraveled, which is an extension of our website and a workbook...The Periodic Paralysis Guide and Workbook: Be The Best You Can Be Naturally. We work towards the improvement of the quality and safety of patients from all over the world with the various forms of Periodic Paralysis. Our focus is on educational resources to build self-reliance and self-empowerment and to prevent possible harm from improper treatment. Our approach to treatment focuses on the self-monitoring of vitals and the management of symptoms through natural methods. We also offer strategies to understanding the disease, getting a proper diagnosis, managing the symptoms, and assisting caregivers and family members. We have members from all over the world, (Iran, Ukraine, Turkey, Denmark, Wales, Netherlands, Canada, Finland, Australia, and more) 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 and much more.

Periodic Paralysis is often misdiagnosed and mistreated, thus causing more damage or possible death to the person with it. There are several types: Hypokalemic Periodic Paralysis (low potassium), Hyperkalemic Periodic Paralysis (high potassium) and the type I have, a variant of Andersen-Tawil Syndrome (ATS), is the most rare and the most serious type. Long QT interval heartbeats can accompany the episodes. 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. There are no known cures, but there are treatments/drugs for some forms, which can be and are successful for some individuals (but the side effects over time can be and are harmful).

The type I have, Andersen-Tawil Syndrome (ATS), 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. Due to many wrong diagnoses and improper medications, I am severely disabled in a power wheelchair and on oxygen therapy 24/7. I was having episodes 4 to 5 times a day but now, with the natural methods have been able to reduce the number to about 1 or 2 a month (Now once or twice a year) during my waking hours (sleep is my biggest trigger so I continue to have them every night as I sleep) with less severity and for shorter periods of time. Calvin's tireless research discovered these methods and saved my life.

I earned B.S. degrees in Psychology and Special Education at the University of Utah and spent many years as a teacher and case manager working with children and adults with disabilities. Calvin earned B.S. degrees in Behavioral Science and Psychology at Westminster College and the University of Utah. He also holds a M.Ed. degree in Special Education and M.S. degree in Information Technology from the University of Utah and Capella University. Calvin worked in a variety of fields including teaching, corrections and case management.

We are now retired and enjoy the peace and beauty of the forest in our new home on the Olympic Peninsula in Washington. We live with two spoiled cats and plenty of wildlife. We are presently writing our next books and continue to work daily to help others with PP. In his spare time, Calvin enjoys working with wood and tends our organic garden while I enjoy genealogy research and reading historical romance novels. We have three children and five grandchildren.

Please join us often for a new lesson or story related to Periodic Paralysis. Please feel free to ask questions and share your experiences with us.

If you have Periodic Paralysis or suspect you have it and would like to join us on our education and support group, please use the following link:

https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/

For more information please visit our:

Website: www.periodicparalysisnetwork.com

Website Facebook Page: https://www.facebook.com/PeriodicParalysisNetwork

Blog: https://livingwithperiodicparalysis.blogspot.com/

Until later....

Over the past five years we feel that we have been successful in our endeavors to educate the world about Periodic Paralysis. On the day we posted our first article five years ago, we had less than 150 members. Today we have over 800 members from all over the world! Some of them joined us after finding our Blog.

The following are the titles of our most popular articles followed by the number of views:

Why We Should NOT TAKE DRUGS: Idiosyncratic and Paradoxical Reactions To Drugs
3,188

Periodic Paralysis and Metabolic Acidosis

2, 986

What is Andersen-Tawil Syndrome?

2, 449

Periodic Paralysis and Anesthesia

2,285

Conversion Disorder vs Periodic Paralysis

1,875

Paramyotonia Congenita: Another Form Of Periodic Paralysis

1,367

What is Hypokalemic Periodic Paralysis?

1,285

Permanent Muscle Weakness in Periodic Paralysis

1,259

Exercise Intolerance

1,102

What is Periodic Paralysis?

1,009

The Connection Between Mitochondria and Autoimmune Disease in Periodic Paralysis

992 Why People With Some Forms of Periodic Paralysis Should Not Use Intravenous Therapy (IVs)

919

The following is the List and Links of the PPN Blog Articles

(This begins with the most recent articles and scrolls down to older articles)

What Is Periodic Paralysis? (2) (For Those Who Are Interested And For New Members)

https://livingwithperiodicparalysis.blogspot.com/2018/05/what-is-periodic-paralysis-2-for-those.html

Periodic Paralysis IS Life Threatening

https://livingwithperiodicparalysis.blogspot.com/2017/12/periodic-paralysis-is-life-threatening.html

How Many People Really Have Andersen-Tawil Syndrome?? More than 100!!

http://livingwithperiodicparalysis.blogspot.com/2017/10/how-many-people-really-have-andersen.html

How To Manage Our Periodic Paralysis Symptoms Naturally: Total Balance And Proper Diet

http://livingwithperiodicparalysis.blogspot.com/2017/10/how-to-manage-our-periodic-paralysis.html

Periodic Paralysis: Secondary Causes??? http://livingwithperiodicparalysis.blogspot.com/2017/10/periodic-paralysis-secondary-causes.html

Balance and Periodic Paralysis http://livingwithperiodicparalysis.blogspot.com/2017/10/balance-and-periodic-paralysis.html

Warning About Free Genetic Testing For Periodic Paralysis

http://livingwithperiodicparalysis.blogspot.com/2017/09/warning-about-free-genetic-testing-for.html

Hope And Living With Periodic Paralysis, A Chronic Illness

http://livingwithperiodicparalysis.blogspot.com/2017/09/hope-and-living-with-periodic-paralysis.html

Now providing HOPE, SUPPORT, EDUCATION and ADVOCACY to over 700 members worldwide!!!

http://livingwithperiodicparalysis.blogspot.com/2017/09/now-providing-hope-support-education.html

RARE Champion of Hope Award

http://livingwithperiodicparalysis.blogspot.com/2017/09/rare-champion-of-hope-award.html

Providing HOPE, SUPPORT, EDUCATION and ADVOCACY to over 650 members!!

http://livingwithperiodicparalysis.blogspot.com/2017/03/providing-hope-support-education-and.html

Rare Disease Day February 28, 2017

http://livingwithperiodicparalysis.blogspot.com/2017/02/rare-disease-day-february-28-2017.html

Best Way to Share Awareness of Periodic Paralysis With Others

http://livingwithperiodicparalysis.blogspot.com/2017/02/best-way-to-share-awareness-of-periodic.html

Periodic Paralysis World Awareness Day 2017

http://livingwithperiodicparalysis.blogspot.com/2017/02/periodic-paralysis-world-awareness-day.html

PPN Sixth Anniversary of Providing HOPE!!!!

http://livingwithperiodicparalysis.blogspot.com/2017/02/ppn-sixth-anniversary-of-providing-hope.html

Providing HOPE to over 625 Members Now!!!

http://livingwithperiodicparalysis.blogspot.com/2017/01/providing-hope-to-over-625-members-now.html

Bringing Hope To Over 600 Members Now!!

http://livingwithperiodicparalysis.blogspot.com/2016/11/bringing-hope-to-over-600-members-now.html

Over 575 Members!!

http://livingwithperiodicparalysis.blogspot.com/2016/09/over-575-members.html Our

Newest Book: "What Is Periodic Paralysis?: A Disease Like No Other"

http://livingwithperiodicparalysis.blogspot.com/2016/09/our-newest-book-what-is-periodic.html

Congratulations Periodic Paralysis Network!!! Over 50,000 views!!!!!

http://livingwithperiodicparalysis.blogspot.com/2016/07/congratulations-periodic-paralysis.html

550 Members!!!

http://livingwithperiodicparalysis.blogspot.com/2016/07/550-members.html

Over 525 Members!!

http://livingwithperiodicparalysis.blogspot.com/2016/05/over-525-members.html

This is good news and bad news!!! We now have over 500 members!!

http://livingwithperiodicparalysis.blogspot.com/2016/04/this-is-good-news-and-bad-news-we-now.html

Rare Disease Day Photo

http://livingwithperiodicparalysis.blogspot.com/2016/03/rare-disease-day-photo.html

What is Periodic Paralysis?? For "Rare Disease Day"

http://livingwithperiodicparalysis.blogspot.com/2016/02/v-behaviorurldefaultvmlo.html

Happy 5th Anniversary PPN and Periodic Paralysis Awareness Day!!

http://livingwithperiodicparalysis.blogspot.com/2016/02/happy-5th-anniversary-ppn-and-periodic.html

Periodic Paralysis Awareness Campaign!!

http://livingwithperiodicparalysis.blogspot.com/2016/02/periodic-paralysis-awareness-campaign.html

475 Members!!! http://livingwithperiodicparalysis.blogspot.com/2016/01/475-members.html

Average Number of Paralytic Attacks Per Year?

http://livingwithperiodicparalysis.blogspot.com/2016/01/average-number-of-paralytic-attacks-per.html

Normokalemic Periodic Paralysis Update

http://livingwithperiodicparalysis.blogspot.com/2016/01/normokalemic-periodic-paralysis-update.html

Periodic Paralysis World Awareness Day February 7, 2016

http://livingwithperiodicparalysis.blogspot.com/2016/01/periodic-paralysis-world-awareness-day.html

Periodic Paralysis And Co-existing Medical Conditions

http://livingwithperiodicparalysis.blogspot.com/2016/01/periodic-paralysis-and-co-existing.html

450 Members!!!!

http://livingwithperiodicparalysis.blogspot.com/2015/12/450-members.html

Happy Second Anniversary For Our PPN Blog!!

http://livingwithperiodicparalysis.blogspot.com/2015/11/happy-second-anniversary-for-our-ppn.html

Permanent Muscle Weakness (Revised)

http://livingwithperiodicparalysis.blogspot.com/2015/10/permanent-muscle-weakness-revised.html

Invisible Illness Week!! Periodic Paralysis Awareness!!

http://livingwithperiodicparalysis.blogspot.com/2015/09/invisible-illness-week-periodic.html

Our Latest Book: "A Bill Of Rights For Periodic Paralysis Patients" the first in our A.S.E.A.Series

http://livingwithperiodicparalysis.blogspot.com/2015/09/our-latest-book-bill-of-rights-for.html

"New" Drug For Periodic Paralysis $163.80 For One 50mg Tablet!! (Revision)

http://livingwithperiodicparalysis.blogspot.com/2015/09/new-drug-for-periodic-paralysis-16380_17.html

Over 425 Members Now!!!

http://livingwithperiodicparalysis.blogspot.com/2015/09/over-425-members-now.html

The Truth About The “New” Drug For Periodic Paralysis: It Is Not New

http://livingwithperiodicparalysis.blogspot.com/2015/08/the-truth-about-new-drug-for-periodic.html

A New Drug For Periodic Paralysis? Helpful Or More Of The Same?

http://livingwithperiodicparalysis.blogspot.com/2015/08/a-new-drug-for-periodic-paralysis.html

Bill of Rights for Periodic Paralysis Patients

http://livingwithperiodicparalysis.blogspot.com/2015/07/normal-0-normal-0-billof-rights-for.html

Scandinavian Periodic Paralysis Support Group

http://livingwithperiodicparalysis.blogspot.com/2015/07/scandinavian-periodic-paralysis-support.html

Identify And Eliminate The Triggers Of Periodic Paralysis: Part Two

http://livingwithperiodicparalysis.blogspot.com/2015/06/identify-and-eliminate-triggers-of_24.html

Identify And Eliminate The Triggers Of Periodic Paralysis: Part One

http://livingwithperiodicparalysis.blogspot.com/2015/06/identify-and-eliminate-triggers-of.html

Trying To Balance My Life-Periodic Paralysis! Guest Blog Article from Julie Nielsen Cabitto

http://livingwithperiodicparalysis.blogspot.com/2015/06/trying-to-balance-my-life-periodic.html

Periodic Paralysis and Depression

http://livingwithperiodicparalysis.blogspot.com/2015/06/periodic-paralysis-and-depression.html

Over 400 Members!!!!!

http://livingwithperiodicparalysis.blogspot.com/2015/06/over-400-members.html

Doctors Not Being Held Accountable: The Periodic Paralysis Diagnosis By Guest Blogger Maureen McCutcheon

http://livingwithperiodicparalysis.blogspot.com/2015/04/doctors-not-being-held-accountable.html

375 Members!!!

http://livingwithperiodicparalysis.blogspot.com/2015/03/375-members.htm

A Poor 'Product' That is Being Called 'Medical Care': By Maureen McCutcheon

http://livingwithperiodicparalysis.blogspot.com/2015/03/a-poor-product-that-is-being-called.html

How To Get A Periodic Paralysis Diagnosis: “Hit Them Between The Eyes With The Facts”

http://livingwithperiodicparalysis.blogspot.com/2015/03/how-to-get-periodic-paralysis-diagnosis.html

Periodic Paralysis and "Post Traumatic Medical Stress Disorder" (PTMSD)

http://livingwithperiodicparalysis.blogspot.com/2015/03/periodic-paralysis-and-post-traumatic.html

Phishing Scam Using Our Book...Please Beware.....

http://livingwithperiodicparalysis.blogspot.com/2015/02/phishing-scam-using-our-bookplease.html

Periodic Paralysis and the EMG (CMAP)

http://livingwithperiodicparalysis.blogspot.com/2015/02/periodic-paralysis-and-emg-cmap.html

350 Members!!

http://livingwithperiodicparalysis.blogspot.com/2015/02/350-members.html

Happy Periodic Paralysis Awareness Day and Happy Fourth Anniversary for PPNI!!!!

http://livingwithperiodicparalysis.blogspot.com/2015/02/happy-periodic-paralysis-awareness-day.html

Compilation of Articles Written About Drugs and Periodic Paralysis

http://livingwithperiodicparalysis.blogspot.com/2015/02/compilation-of-articles-written-about.html

325 Members!!

http://livingwithperiodicparalysis.blogspot.com/2014/12/325-members.html

The Survey Results: Part One

http://livingwithperiodicparalysis.blogspot.com/2014/12/the-survey-results-part-one.html

The Connection Between Mitochondria and Autoimmune Disease in Periodic Paralysis

http://livingwithperiodicparalysis.blogspot.com/2014/12/the-connection-between-mitochondria-and.html

Genetic Mutation Overview

http://livingwithperiodicparalysis.blogspot.com/2014/12/genetic-mutation-overview.html

Our New Book!!! The Periodic Paralysis Guide And Workbook

http://livingwithperiodicparalysis.blogspot.com/2014/11/our-new-book-periodic-paralysis-guide.html