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 .

Sunday, December 10, 2017

25 new members in one month!! 750 members now!!

We at the Periodic Paralysis Network are now providing HOPE, SUPPORT, EDUCATION and ADVOCACY to over 750 members worldwide!!!

We added over 25 members in the past month!! A record for the PPN!!

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

PPN Website: www.periodicparalysisnetwork.com PPN Support Group: https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/

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

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 Book Discussion Group:
We have a discussion board to discuss specifically the issues and aspects of Periodic Paralysis found in our books.

PPN Genealogy Discussion Group:
This group was designed for discussion and research into the genealogy of those families with Periodic Paralysis in the hopes of finding links and perhaps a new way to get a diagnosis.

PPNI Genetics Discussion and Research Group:
The Periodic Paralysis Network Inc. (PPNI) Genetics Discussion and Research Group is designed for discussion and research into the genetics of the many forms of Periodic Paralysis.

The PPN Learning Center and Workshop:
We have web cam or live video group sessions periodically for education, support and discussion. Please watch for announcements and invitations to RSVP.

Periodic Paralysis Caregivers:
The Periodic Paralysis Caregiver Group is designed to assist the caregivers of those individuals with Periodic Paralysis. This could include parents, children, siblings, friends, grandparents or anyone else who is responsible to care for anyone who has any form of Periodic Paralysis. This group is an extension of the Periodic Paralysis Support Group.

PP and Co-existing Conditions:
This group is designed for those who have Periodic Paralysis and other co-existing conditions. The PPN Support, Education and Advocacy Group is geared for discussions about Periodic Paralysis only.

PP Buddies (Support when in an emergency)
This 'PP Buddies Group' is designed for members of the PPN Support, Education and Advocacy Group. Anyone can join who may need help or assistance in the ER or in an emergency and anyone who would like to 'buddy with' or help them at those times. We do not want to see anyone who is frightened or new to PP, have to go through these experiences alone. Using IM, Chat, Skype or exchanging phone numbers ahead of time may be helpful.

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

PPN Author's Page:
Fun posts shared relating to writing and reading books.
https://www.facebook.com/SusanQKnittleHunterauthor

Email: periodicparalysisnetwork@gmail.com

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

Twitter: https://twitter.com/NetPeriodic
(I am not good at Twitter..let me know if you would like to help with this.)

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 © 2013 Periodic Paralysis Network

Friday, December 1, 2017

Periodic Paralysis IS Life Threatening

Periodic Paralysis IS Life-Threatening

Recently there has been some question about the prognosis for those of us with Periodic Paralysis (PP). Some say that they have read that it is "NOT life-threatening." The following articles refute this misperception. Some PP literature perpetuates the misinformation that PP is not Life-Threatening. This is very scary for us. Doctors and others need to understand that we can die during episodes.

This is one article:

Interesting article about PP from 1994...

The most important information in this article is very important but rarely found anywhere...I have mentioned this many times...but I do not think others believe it. We need to be diagnosed and we need to do everything possible to avoid the episodes...

Periodic paralysis: clinical evaluation in 20 patients

Out of 20 patients:

"Although periodic paralysis may be considered a benign disease we found respiratory distress in 5 patients, permanent myopathy in 1, electrocardiographic abnormalities during crises in 4; death during paralysis occurred in 2. Therefore correct diagnosis and immediate treatment are crucial."

https://www.openaire.eu/search/publication?articleId=doajarticles::942a1e1add3399da26a80299d24d3b8f

Periodic paralysis and ventricular tachycardia: Possible role of calcium channel blockers

Pediatric Cardiology January 1996, Volume 17, Issue 1, pp 31–34

“Few patients have been reported with familial periodic paralysis and ventricular tachycardia. The natural history of these cases was unfavorable, with most dying because of a presumed cardiac dysrhythmia. We report for the first time the results of an electrophysiologic study of a similar case and the successful use of calcium channel blockers, shedding light on the possible mechanism and management of these patients.”
http://link.springer.com/article/10.1007%2FBF02505808

Cardiac arrhythmias in hypokalemic periodic paralysis: Hypokalemia as only cause?

Muscle Nerve. 2014 Sep;50(3):327-32. doi: 10.1002/mus.24225. Epub 2014 Aug 12.

“Nine patients died from arrhythmia.”

“Clinicians should be aware of and prevent treatment-induced cardiac arrhythmia in HypoPP. “

https://www.ncbi.nlm.nih.gov/pubmed/25088161

Asymptomatic cardiac arrhythmias in periodic paralysis. - NCBI

“These cases of periodic paralysis with associated arrhythmias have been regarded as exclusively ventricular in origin with poor prognosis.:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1032737/pdf/jnnpsyc00536-0169.pdf

Hypokalemic Periodic Paralysis with Arrhythmia

http://www.nejm.org/doi/full/10.1056/NEJM197202032860507

ANDERSEN CARDIODYSRHYTHMIC PERIODIC PARALYSIS (1972)

A variable prolongation of the QT interval, ventricular bigeminy, and short runs of bidirectional ventricular tachycardia were observed. Sudden death in this syndrome was reported…(1972). http://www.omim.org/static/omim/icons/related-references.png

http://www.omim.org/entry/170390

…………………

Added 1/18/2017

SUDDEN DEATH IN EPILEPSY: RESEARCHERS FINGER POSSIBLE CAUSE http://healthcarevision.co/sudden-death-in-epilepsy-researchers-finger-possible-cause/ “

One had mutations in a potassium ion channel gene, which disrupts the normal firing of neurons; another had mutations in a sodium ion channel gene with a similar function. Both genes are linked to SUDEP in people, and the sodium channel mutation can cause Dravet syndrome,...”

…………………

Added 5/17/2017

Hello All,

A few weeks ago I had to wear a heart monitor for two weeks. I finally got the results of it, (ZIOxt) and was not surprised. I have previously been diagnosed with several different arrhythmias. This time two new ones showed up. I had 11 episodes of Supraventricular Tachycardia (SVT). The longest run was 14 beats. I also had what the doctor said was worse than SVT...***Ventricular Tachycardia*** (VT).

The other things that showed up have been recorded previously but no Long QT showed up and there were no Sinus Pause/Arrest with Atrial Escape episodes that showed up like that night in the ER (thank goodness)...so now we know that it was most likely caused by the drugs given to me that night in the ER as we had expected.

I wanted to share these results for a few reasons…to warn once again about the issues of taking drugs...even in an emergency situation. Much thought must be given to the serious effects they can cause those of us with PP/ATS. I am lucky the atrial part of my heart worked as the pacemaker that night or I would not be here today.

The other issue was that as I was researching what these particular arrhythmia mean, I was reminded in my research that these heart issues/irregular beats are the direct result of the PP.

"What causes ventricular tachycardia?

....But in most cases ventricular tachycardia is caused by heart disease, such as a previous heart attack, a congenital heart defect, hypertrophic or dilated cardiomyopathy, or myocarditis. Sometimes ventricular tachycardia occurs after heart surgery. Inherited heart rhythm problems, such as ***long QT syndrome*** or Brugada syndrome, are rare causes of ventricular tachycardia.

***Some medicines-including*** ***antiarrhythmic medicines***, which are used to treat other types of abnormal heart rhythms-can cause ventricular tachycardia. ***Less common causes include blood imbalances, such as low potassium levels and other electrolyte imbalances****."

This means that I have two counts against me with long QT AND electrolyte imbalances...(my mother also had hypertrophic cardiomyopathy)...and here is another reason I cannot take drugs/meds....

My warning is this: ventricular tachycardia is related to electrolyte imbalance...at any time VT can turn into Ventricular Fibrillation, which can be fatal. We need to do everything we can to avoid episodes...to avoid the heart issues. We need to stay in balance in all ways. Change our diets as necessary. We need to know what our triggers are and avoid them, including most drugs, exertion, etc.

PP can be fatal and has been for many people before us, including some members of my family. My own great uncle died at 41 during an episode.

Discussing my options with the doctor, we know that I cannot take any drugs and an ablation is out of the question...so all I can do is avoid the triggers...which I do...but my heart has been damaged from a lifetime of potassium shifting and not knowing it...and all the drugs from the misdiagnoses, etc....so I will take each day as it comes....

http://www.webmd.com/heart-disease/tc/ventricular-tachycardia-topic-overview#1

http://www.webmd.com/heart-disease/tc/supraventricular-tachycardia-overview#1

Added 2/01/2017

If we manage our symptoms well, stay balanced in all ways, etc., we can live longer with a better quality of life but PP can be fatal and we need to understand that. Anytime we go to the ER, hospital, have an IV, use anesthesia, provoke our symptoms to get diagnosed, take drugs, do medical testing, have a colonoscopy, have surgery, are given MRI contrast, have medical procedures, swim alone, over do physically, push ourselves, do not eat right, get ill, get stressed, and more, we risk death by going into a paralytic episode which can affect our heart, breathing, breathing muscles, oxygen levels, cause choking and lead to death.

Added 12/19/2017

There has been some discussion today about doctors wanting to provoke episodes in order to get 'proof' of either "faking" paralysis or actually having Periodic Paralysis.This article will explain why we should never provoke episodes of paralysis. Periodic Paralysis can be life-threatening. We need to avoid episodes at all cost...not provoke them at will for the doctors, research or anyone else...We are an education, support and "ADVOCACY" group. We are here to try to keep everyone safe and alive when dealing with the medical professionals in our lives...Those of us with Andersen-Tawil Syndrome (ATS) or who suspect they may have ATS should even use more care in avoiding episodes and should never allow provoking. We have even more of risk of sudden death due to our Long QT arrhythmia......

Provocative testing can be dangerous and is not a favored first-line method of diagnosis. Potassium challenge tests risk hyperkalemic arrhythmia, even in an acute care setting. ... Both hyperkalemic and hypokalemic periodic paralysis can present with normokalemia during attacks.Apr 21, 2008
Practical aspects in the management of hypokalemic periodic paralysis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2374768/

Hypokalemic periodic paralysis - NCBI - NIH
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3700163/
by H Abbas - ‎2012 - ‎Cited by 3 - ‎Related articles
Hypokalemic periodic paralysis is a rare genetic disorder characterized by recurrent attacks of skeletal muscle weakness with associated hypokalemia which is precipitated by stress, cold, carbohydrate load, infection, glucose ... Provocative testing can be dangerous and is not a favored first-line method of diagnosis.

Practical aspects in the management of hypokalemic periodic paralysis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2374768/
‎2008 - ‎Cited by 42 - ‎Related articles
Apr 21, 2008 - Provocative testing can be dangerous and is not a favored first-line method of diagnosis. Potassium challenge tests risk hyperkalemic arrhythmia, even in an acute care setting. ... Both hyperkalemic and hypokalemic periodic paralysis can present with normokalemia during attacks.

Until Later…

Thursday, November 9, 2017

725 Members!!!!

We at the Periodic Paralysis Network are now providing HOPE, SUPPORT, EDUCATION and ADVOCACY to over 725 members worldwide!!!

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

PPN Website: www.periodicparalysisnetwork.com PPN Support Group: https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/

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

PPN Blog:

We have over 140 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 Book Discussion Group:

We have a discussion board to discuss specifically the issues and aspects of Periodic Paralysis found in our books.

PPN Genealogy Discussion Group:

This group was designed for discussion and research into the genealogy of those families with Periodic Paralysis in the hopes of finding links and perhaps a new way to get a diagnosis.

PPNI Genetics Discussion and Research Group:

The Periodic Paralysis Network Inc. (PPNI) Genetics Discussion and Research Group is designed for discussion and research into the genetics of the many forms of Periodic Paralysis.

The PPN Learning Center and Workshop:

We have web cam or live video group sessions periodically for education, support and discussion. Please watch for announcements and invitations to RSVP.

Periodic Paralysis Caregivers:

The Periodic Paralysis Caregiver Group is designed to assist the caregivers of those individuals with Periodic Paralysis. This could include parents, children, siblings, friends, grandparents or anyone else who is responsible to care for anyone who has any form of Periodic Paralysis. This group is an extension of the Periodic Paralysis Support Group.

PP and Co-existing Conditions:

This group is designed for those who have Periodic Paralysis and other co-existing conditions. The PPN Support, Education and Advocacy Group is geared for discussions about Periodic Paralysis only.

PP Buddies (Support when in an emergency)

This 'PP Buddies Group' is designed for members of the PPN Support, Education and Advocacy Group. Anyone can join who may need help or assistance in the ER or in an emergency and anyone who would like to 'buddy with' or help them at those times. We do not want to see anyone who is frightened or new to PP, have to go through these experiences alone. Using IM, Chat, Skype or exchanging phone numbers ahead of time may be helpful.

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

PPN Author's Page:

Fun posts shared relating to writing and reading books.

https://www.facebook.com/SusanQKnittleHunterauthor

Email: periodicparalysisnetwork@gmail.com

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

Twitter: https://twitter.com/NetPeriodic

(I am not good at Twitter..let me know if you would like to help with this.)

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.

Saturday, October 14, 2017

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

Twice in the past week I have seen the inaccurate statement about only 100 people in the world having Andersen-Tawil Syndrome (ATS), the most severe and the most rare form of Periodic Paralysis. First, I read an article published just this week about a father and daughter who have Andersen-Tawil Syndrome and they explain that they are two of those 100 people! Then a few days later I received a request from someone who wanted to join our Support Group. This person is not diagnosed, but suspects the possibility of ATS and shared this with a doctor. The doctor had never heard of it and did an Internet search on a site only for doctors. He told her that she may be one of only 100 people in the world! This information is old, archaic, out of date, misleading and just not correct.

ATS is indeed very rare and there are few people in the world with it, but there are definitely more than 100 people who have Andersen-Tawil Syndrome.

For instance, in France alone, a study was done on people with ATS. Actually, 36 women, from 20 different families, from only 9 hospitals in France and who were diagnosed as carriers of KCNJ2 mutation, took part in the study. That equals 36 people out of 100 who have ATS in just one part of France. I imagine that each of those women had family members with it also...parents and children...so that would bring it up to at least 72 if there is at least one child per family and add the parent that passed it to them...that would be at least 108 cases!!!!!! That would be the least amount among those women.

"We conducted a retrospective multicentre study in nine French hospitals. Patients were recruited only if they were KCNJ2 mutation carriers. Thirty-six patients (female n = 22, 61%) from 20 unrelated kindred ..."

http://europace.oxfordjournals.org/content/early/2013/07/17/europace.eut160.abstract

There are people all over the world with ATS and each person has at least one parent with it (there may be a few spontaneous cases) and probably siblings and children. This is definitely more than 100 in the world.

We know now that ATS is also caused by the KCNJ5 mutation. These individuals must be figured into the equation too and about 50% of those who have ATS symptoms and a clinical diagnosis do not have a genetic mutation and are therefore not included in the count either.

More information to add to this equation:

Someone asked me, not long ago, if I knew how many people worldwide have Periodic Paralysis. I did not have an answer so I had to research it. The following is my best "estimation" based on the information I was able to find.

Orphanet, a consortium of European partners, currently defines a condition rare when it affects 1 person per 2,000. They list Hypokalemic periodic paralysis as a "rare disease".

(Source – Orphanet)

Prevalence rate of Hypokalemic Periodic Paralysis: approx 1 in 100,000 or 0.00% or 2,720 people in USA [about data]

Prevalence Rate for Hyperkalemic periodic paralysis: approx 1 in 200,000 or 0.00% or 1,360 people in USA [about data]

Prevalence Rate for Andersen-Tawil Syndrome: approx 1 in 60,000,000 or 0.00% or 4 people in USA. Source statistic for calculation: "100 people have been reported with Andersen-Tawil syndrome worldwide, Genetics Home Reference" (We already know this is not correct!)

According to this, in the United States there are 4,084 people with Periodic Paralysis. I assume documented, genetically confirmed cases.

But this does not account for those of us who are not genetically diagnosed and these numbers only account for the cases in the United States.

There are 7 billion people worldwide, so if I figured correctly according to the information above:

7,000=Hypokalemic Periodic Paralysis

3,500=Hyperkalemic Periodic Paralysis

100=Andersen-Tawil Syndrome

*** See below

10,600=cases of documented, genetically diagnosed people in the world have Periodic Paralysis.

But about 40 to 50% of individuals with Periodic Paralysis have no known genetic mutation, so that number should be about double.

So my best calculation, based on the above information, is that 21,200 people worldwide have Periodic Paralysis! This includes at least 200 for ATS! But, this estimate is very conservative. I am sure it may actually be a much higher incidence due to misdiagnosis and under diagnosis. Research would indicate that 200 cases is not even close to the number who actually have ATS in the world.

For instance, recently, some people in our support group received the results of genetic testing. One woman believed she had Periodic Paralysis. Several of her family members were diagnosed with Fibromyalgia and were content with that diagnosis. Just to humor their relative, they also had genetic testing done. ALL of them turned out to have the same genetic mutation for a form of Periodic Paralysis.

This woman had been told two months ago, by the most prominent specialist in the world for Andersen-Tawil Syndrome in Rochester, New York, after traveling at great expense across the country, that she DID NOT have Periodic Paralysis.

Those three individuals would not have figured in the statistics, but now will be counted. This is just the tip of the iceberg!!!!! I believe that the number of individuals with Periodic Paralysis around the world is closer to 50,000 at the very least, but probably many more. And this is true for ATS…well more than 200!

(***This little exercise does not include the cases of Normokalemic Periodic Paralysis, Thyrotoxic Periodic Paralysis, Paramyotonia Congenita or a possible new form...Electrolyte Periodic Paralysis.)

http://livingwithperiodicparalysis.blogspot.com/2013/12/how-many-people-in-world-have-periodic.html

More food for thought about Andersen-Tawil Syndrome and diagnosing:

ATS-like Characteristics of Periodic Paralysis

Andersen-Tawil Syndrome (ATS) is the most rare form of Periodic Paralysis. It accounts for approximately 10% of all periodic paralysis cases. It is characterized by three particular components: periods of paralysis from high, low or normal potassium levels, distinctive craniofacial and skeletal characteristics and long QT interval heartbeat with a predisposition toward life-threatening ventricular arrhythmia. However, affected individuals may express only one or two of the three components and they may be very subtle. Other characteristics and abnormalities are also associated with Andersen-Tawil Syndrome.

Although these characteristics are associated specifically with Andersen-Tawil Syndrome, in a survey of several hundred people with all forms of Periodic Paralysis, results for this category were very surprising. The majority, 92% of the members, reported at least one ATS characteristic despite the fact that only two members were diagnosed genetically and two members were diagnosed clinically. The majority of these characteristics were related to the fingers, toes and facial features. Many of the members shared photos of these anomalies. The photos were stunning. Compared to the photos in the medical journals, our members had much more pronounced curved little fingers and webbed 2-3 toes and craniofacial features.

These findings could not be dismissed as a coincidence. There is a strong possibility that many of the ATS characteristics are quite possibly also seen in the other forms of Periodic Paralysis. Is it possible that these features or traits may have been overlooked in the previous research of patients with other types of Periodic Paralysis?

For this reason, we conclude these traits or characteristics are possibly more in-depth complications and they may be added to the list of symptoms and characteristics for clinically diagnosing all forms of Periodic Paralysis. This may be essential due to the complications some of these features, like scoliosis, dental anomalies, joint laxity, small jaws or issues with executive functioning may pose.

http://livingwithperiodicparalysis.blogspot.com/2013/12/what-is-andersen-tawil-syndrome.html

And so, the information about Andersen-Tawil Syndrome on the Internet needs to be changed to reflect what the truth really is about how many people actually have it. It is rare, yes, the most rare of the forms of Periodic Paralysis, but only 100 cases in the world??? I think not. There are more than 100 cases of ATS alone in France!!! What about the numbers of cases in the rest of the world???

This also demonstrates that most of the information that doctors are finding in their research on the Internet, especially about Periodic Paralysis, is probably also misleading and why we have such a difficult time with being diagnosed.

Until later.....

Friday, October 13, 2017

How To Manage Our Periodic Paralysis Symptoms Naturally: Total Balance, Proper Diet and Avoiding Triggers

How To Manage Our Periodic Paralysis Symptoms Naturally:
Total Balance, Proper Diet  and Avoiding Triggers 

The following is the plan for best managing our symptoms and paralysis in all natural ways. This information comes from research and trial and error. I was not able to handle drugs of any kind and was dying. Calvin saved my life using these methods and ideas and reduced my episodes of severe, full-body paralysis from 4 or 5 a day to one or two every several months, which are less severe and shorter in duration. This information and much more is in our books and other Blog Articles and in our Files. Different aspects of this are discussed daily in our support group. The first part of the article is how to stay balanced in all ways and the second part is about the dietary changes that will make a significant difference.

Part 1
Balance and Periodic Paralysis

I constantly discuss staying ‘totally balanced’ in all ways in order to manage our symptoms…but what does that mean exactly?? The following is my explanation.

Periodic Paralysis is a Mineral Metabolic Disorder, which is also known as an ion channelopathy. This means that the levels of the minerals/electrolytes/ions in the blood can become abnormal or can fluctuate in error depending on several issues. There will be either not enough minerals in the blood or too many minerals in the blood. Many things we call ‘triggers’ can cause this for us including, but not limited to, drugs, IV’s anesthesia, some foods (junk food, processed foods-anything not natural), food fillers and dyes, exercise, exertion, temperature fluctuations, heat, cold, stress, sleep, sodium, sugar, carbohydrates.

For those of us with varying forms of Periodic Paralysis, when a trigger is introduced in our bodies, the minerals shift and it causes many symptoms, most notably, periods of paralysis. These can be either partial or full-body. Therefore it is important for us to stay balanced.

First, this means we must keep the electrolytes/minerals in balance. These include:
potassium (K+) Use potassium meter to monitor levels.
magnesium (Mg++)
sodium (Na+)
chloride (Cl-)
calcium (Ca++)
bicarbonate (HCO3-)
phosphate (HPO4–)

Second, other things that need to be well balanced:
Sugar/glucose: Use glucose meter (blood), follow a diabetic diet and eat smaller amounts more often to prevent sugar highs and lows.
pH/acid/alkaline: Use pH strips (urine and saliva), follow a pH or alkaline balanced diet.
Hydration/dehydration: Drink plenty of water, but not too much. Low or high levels of water/fluid affect mineral levels.
Salt/sodium: Salt can be a trigger, use low sodium foods with care, the salt in those foods is replaced with potassium for flavor so will increase potassium levels.
Body temperature: Use a thermometer. Fever can create symptoms. Heat and cold also causes symptoms.
Vitamins: Any vitamin imbalance can create symptoms.
Exercise/exertion: Too much exertion or exercise sets our symptoms into motion, it is important to know your own limits.
Blood pressure: Monitor with a blood pressure wrist cuff. Blood pressure needs to be kept at normal levels. This can be done with diet and staying balanced.
Oxygen levels: Monitor with finger pulse oximeters, below 95% the cells begin to be starved causing damage. If blood pressure is up or down, oxygen may be needed to avoid damage. Low oxygen levels prevent the cells from working properly and it affects the brain, heart and energy levels.
Heartbeat: Monitor with finger pulse oximeters and blood pressure wrist cuff. If heart rate is too slow the heart has to work harder and the brain and other organs are not getting the oxygen they need and if the heart is beating too fast the organs and other tissue is being deprived of oxygen.
Carbohydrates: Too many carbohydrates in a meal affect HypoKPP, but HyperKPP needs more carbohydrates in the diet.
Sleep: A lack of sleep causes chemical imbalances in the body and affects insulin levels, among other issues.
Stress (good or bad): This causes adrenaline to rise, which lowers potassium levels and also affects insulin levels.
Drugs/medications/over-the-counter: Avoid at all cost. These will cause serious imbalances in many different ways, depending on their composition and our form of Periodic Paralysis and co-existing conditions.

If we can keep our bodies in balance, we can minimize our symptoms and improve our quality of life. It is a constant battle and not easy but the results are well worth it. We equate it to constantly walking a tightrope. This form helps to monitor the above issues in order to stay in balance. The following article will give more information about how to monitor your vitals.

Monitoring Vital Signs For Individuals With Periodic Paralysis:
https://livingwithperiodicparalysis.blogspot.com/2013/12/monitoring-vital-signs-for-individuals.html

Part 2
Diet and Nutrition
Make Healthy Lifestyle Changes (From Workbook)
Lifestyle changes are difficult at first, but the results are well worth the effort. I have regained my life in most ways by avoiding the triggers of my paralytic episodes and by changing how and what I eat.

Many of us with various forms of Periodic Paralysis cannot get medications and/or cannot take them. A few years ago I was basically dying due to this fact. Calvin and I researched and experimented and discovered the best way to reduce my periods of full body, total paralysis lasting hours at a time and occurring four to five times a day and all night, was with a pH balanced diet, also know as an alkaline diet. We added supplements and I avoided all of my triggers except sleep (have to sleep) and began to use oxygen for my exercise intolerance.

By the end of 6 months, my episodes were reduced to 1 or two a month and I had lost 25 pounds, my A1C levels were down to normal ranges and my cholesterol levels had been reduced significantly. I was able to function more normally and continue to be much better than when I started the diet three years ago. Now that I have become balanced, I find I have needed to add a bit more salt, sugar, carbohydrates and fats and am able to cut back on the supplements.

We have adopted several sayings when it comes to eating:
“Eat to live rather than live to eat.”
“Eat from the farm and not the factory.”
”Eat 70 percent alkaline and 30 percent acidic.”

The 70/30 eating rule is the most important of the group. We have it posted on our refrigerator along with the acid and alkaline ratings of particular foods.

Periodic Paralysis is not curable but we believe it is manageable, in part, by the things we consume and the things we avoid. Highly acidic chemicals and food can trigger potassium shifting. The relationship between potassium shifting and metabolic acidosis is quite real and should be taken very seriously in order to avoid life-threatening complications. The goal is consume much more alkaline and much less acid.

Eat a Proper pH Balanced Diet
“Eat to live rather than live to eat”
When Calvin discovered I had metabolic acidosis and was unable to take any medication, he began to search for ways to save my life. He had discovered that the pH balance in my body was unbalanced with too much acidity. He set out to increase the alkaline in my body. He found a website with a chart containing the pH balance of the most common foods. With the chart in hand, he hurried to the store and bought as many of the foods containing alkaline he could find, mostly vegetables. Then he found our juicer and made a vegetable and fruit drink for me every morning, he prepared fresh vegetables for my lunch and made a fresh salad for my dinner. He cut out almost all foods with acidity. It was difficult for me so he decided to eat the same diet with me. Soon I was doing better. I grew stronger, the attacks of paralysis decreased in number and severity and by the time six months had passed, we both lost twenty pounds and our cholesterol levels were decreased and sugar levels were down in the normal ranges.

While attending a visit with one of my diagnosing doctors, we told him about the diet and how it had helped me. He said that we were now, “Eating to live and no longer living to eat”. He was so right!

What we had discovered was the body has a natural pH balance. It is 70% alkaline and 30% acidic. Any deviation from this may cause an imbalance. Any imbalance in the body causes stress and may trigger symptoms or paralysis. If the body becomes too acidic, metabolic acidosis may occur. Too much alkaline in the body can also be a serious problem causing dehydration. With this in mind, each meal eaten should contain 70% alkaline food and 30% acidic food. There are several good websites on the Internet with charts listing foods high in acidity and high in alkaline. These sites also have instructions for how to follow the diet and recipes for preparing healthy dishes. Links to these sites can be found on our website Periodic Paralysis Network.

Unprocessed Foods
“Eat from the farm; not the factory”
The best way to follow a pH balanced diet is to remember to, “Eat from the farm; not from the factory”. This is because most junk food and processed foods are packed with substances, which are acidic or naturally more acidic. Meat is also a more acidic food. Another way to remember how to shop in order to keep the body pH balance is to stay out of the center isles in the grocery store. The good and healthy foods are always on the outer lanes of the store.

That being said, it is best to remember the word “balance”. It is easy to be afraid to eat too much alkaline and forget to eat the 30% acidity. With that in mind, and remembering an individual’s triggers, some food with acidity is permitted.

Organic Foods
We suggest that when purchasing the food for the pH balanced diet it should be organically grown and processed as much as possible. There are several reasons. The most important is to avoid additives, hormones and pesticides, which can possibly be triggers. If not triggers, they may cause illness and indirectly be triggers for paralytic attacks.

Most cows and cattle (and other animals we eat) are given hormones and antibiotics, unless organically raised. The dairy products and meat from these animals will contain a certain amount of them. If antibiotics or hormones are triggers for an individual, he or she may not be aware that those will be found in the milk, cheese or meat they eat. Without realizing it they may be ingesting them, thus creating episodes of paralysis and not knowing why.

Distilled Water
The same thing applies to our drinking water. The hormones, antibiotics and other medications passed from humans and animals into our water supply are remaining even after the water is purified. Individuals with Periodic Paralysis may not realize they are actually ingesting these medications, hormones and antibiotics in drinking water. For this reason, we suggest using a distiller to process drinking water. It is the only way to have pure drinking water, unless the water is from a good well, which has been tested and found free of all contaminants.

Nutrient Extractor
Extracting nutrients from natural food sources is much more affordable and convenient today with the use of a nutrients extractor. NutriBullet is the kitchen tool we use to turn raw vegetables, fruits, nuts and seeds into liquid drinks that help optimize metabolism, overall health and pH balance on the alkaline side.

Balance
“Balance” is the most important word in our plan. If just one thing is out of balance, it can mean the difference between life and death in some cases. Besides the 70/30 balances in our diet, the other elements in our body must be in balance also, especially the elements or minerals (sometimes called electrolytes). This is due to the fact that Periodic Paralysis is a mineral metabolic disorder and when the minerals are out of balance, paralysis will occur. Some of these elements are calcium, magnesium, sodium, potassium, chloride, and bicarbonate.

That being said, however, salt (sodium) may be a trigger for paralytic episodes for most individuals. Due to that fact many of us avoid it like the plague. If we do not eat any salt then our body will get out of balance and episodes of paralysis or other symptoms may develop. So we must carefully ingest some sodium for that balance.

This also includes natural sugar and some fats and oils. These are also needed in our body, but care must be given to how much we eat of them in our diet and which types. Natural sugars in fruits would be a better choice than white processed table sugar. Olive oil is a better choice than vegetable oil. Monounsaturated fats and polyunsaturated fats are a better choice than saturated fats.

I discovered these things the hard way. After many months of not eating salt, sugar, carbohydrates and fats and oils, and experiencing great improvement with almost no paralytic episodes, I suddenly got very ill and began to have more episodes of severe paralysis. I became extremely weak and overall quite ill. After researching it, I discovered I was probably suffering from too much alkalinity and an imbalance of electrolytes and my body needed some sugar and some fats. I decided that I needed to carefully re-introduce these things back into my diet, one at a time to monitor for problems. I began to feel better, the paralytic episodes decreased and I regained my strength. I am still very careful, but I now enjoy better balanced diet. “Balance” is the key!

The pH Balanced Diet
”Eat 70 percent alkaline and 30 percent acidic.”
We are often asked to describe the pH balanced diet discussed in our book living with Periodic Paralysis: The Mystery Unraveled, also known as the alkaline diet. Before discussing this diet we must first explain that there are different diets typically recommended for Hypokalemic Periodic Paralysis and Hyperkalemic Periodic Paralysis. The diet recommended for Hypokalemic Periodic Paralysis is basically a low sodium, low carbohydrate and high potassium diet. The recommended diet for Hyperkalemic Periodic Paralysis is basically a high carbohydrate, low potassium and low sodium diet. For all types of PP fasting should be avoided and care should be taken to avoid dips or increases in sugar levels. It is important to remember, however, that Periodic Paralysis is a mineral metabolic disorder and our bodies can easily become out of balance. So keeping the above diet guidelines in mind, we must also keep our pH levels in balance.

The most important thing to remember is the 70%-30% part of the diet. This means 70% alkaline and 30% acid. Then you must factor in the organic and natural issues. There are many websites that have charts, recipes and menus for the alkaline diet also known as the pH diet. The 70/30 is the balance between acidity and alkaline that our body must maintain to keep us alive and well. If we are too acidic or too alkaline we become ill as discussed earlier.

The foods with the most alkaline are fresh green vegetables, grasses, sprouts, peas, beans, lentils, spices, herbs and seasonings, and seeds and nuts (mainly almonds). Foods that are more acidic (eat sparingly) are meat, fish, poultry, dairy products, eggs, grains, and legumes.

Balance is the important word when it comes to putting a meal together and for snacking. We also need to remember the sugar, salt (sea) and oil/fat content of the foods we eat. Do not entirely eliminate them just use sparingly. Processed foods have these things and chemicals so eat as fresh and organic as possible.

I cannot eat gluten and try to use dairy products sparingly, so my diet is even more restricted. I eat a great deal of raw vegetables and salads.

A salad will contain greens, tomatoes, avocados (at each meal if possible) cucumbers, carrots, celery, sprouts, mushrooms, peppers, nuts (almonds), seeds (pumpkin and sunflower) all about 70% and then I add a few things like, a few bites of chicken or beef or pork, maybe some cheese, a few olives and olive oil and vinegar or lemon (30%).

I use a NutriBullet and add a mixture of 30/70 including nuts and seeds and coconut milk.

In my refrigerator I have a mixture of shredded fresh beets (purple and/or golden), carrots, turnips, rutabagas and parsnips. When I want a snack or even for breakfast, I put some in a bowl and add some oil and vinegar and eat it just like that or sometimes I add some nuts, raisins and dried coconut with some low fat sour cream (organic). I also put some on my salads.

I buy many vegetables and have them washed and cut and in containers ready to grab when I need or want a snack.

For my dinners, I usually eat a big salad, or a 70/30 meal. 70% vegetables (which can be cooked but best if raw due to becoming more acidic when cooked or processed) that can be a small salad, sometimes some sweet potato or regular potato (with butter; it is neutral pH) a few bites of meat/fish/poultry. I do occasionally make a casserole type meal keeping in mind the 70/30 rules. Stir-fry dishes are easy to make into a 70/30.

My biggest problem is trying to do breakfast at 70/30. Oatmeal or brown rice is not the best but I add nuts, seeds, coconut and dried fruit or fresh berries. A nice salad for breakfast is another option.

Occasionally I add some of my favorite acidic things in a (or to a) meal as part of the 30%. This way I do not feel deprived. I can eat some things I enjoy and I am not missing out on what everyone else or Calvin is eating.

I will use pasta (brown rice or corn or a mixture of both) to make spaghetti and then eat more of the sauce and vegetables or a salad. In that way I do not feel cheated or left out.

You can basically eat whatever you want that is not a trigger as long as you use the 70/30 rules. It is just incorporated into the 30% part of the meal.

Many wonderful and delicious recipes can be found on the Internet under “alkaline diet recipes” or “pH balance diet recipes.”

The following are links to articles related to diet and Periodic Paralysis:
http://livingwithperiodicparalysis.blogspot.com/...

http://livingwithperiodicparalysis.blogspot.com/...

http://www.rense.com/1.mpicons/acidalka.htm

The weekly diet chart should be an aide with meal planning. The alkaline diet takes some time for planning, purchasing and preparing the food. It is best to have it all done ahead of time and ready to easily grab as needed. Be sure to allow yourself enough time for these things in order to avoid or reduce stress.

Besides shopping in specialty stores and cooking from scratch, you may also decide use things like a sprouter for seeds and beans, or a food dehydrator. You can even choose to grow your own organic garden!

Part 3

The third and final part of managing our symptoms and paralysis includes discovering our triggers or the causes of them and then simply avoiding them. The following links are articles about how to figure out those triggers or causes.

Identify And Eliminate The Triggers Of Periodic Paralysis: Part One
http://livingwithperiodicparalysis.blogspot.com/2015/06/identify-and-eliminate-triggers-of.html

Identify And Eliminate The Triggers Of Periodic Paralysis: Part Two
http://livingwithperiodicparalysis.blogspot.com/2015/06/identify-and-eliminate-triggers-of_24.html

Until later.....

Wednesday, October 11, 2017

Periodic Paralysis: Secondary Causes???

I was asked the question, “Can Periodic Paralysis (PP) be caused by other or secondary causes such as vitamin deficiency, vaccinations or toxic exposure or is there always a genetic or inherited cause?”

My answer is:

For those of us with the varying forms of Periodic Paralysis (a mineral metabolic disorder, also known as an ion channelopathy,) the cause is almost entirely/exclusively genetically related. Secondary causes, in my mind, do not exist but others believe they do. I believe that those people actually have/had the genetic mutation but nothing introduced in their life set it into motion until the vaccination, illness, toxic exposure or more that they believe caused it. Those things are/were triggers that set symptoms/paralysis into motion, but the predisposition, a genetic mutation, was already there (inherited, we are born with it). As far as I know, there is no proof that there are secondary causes for PP. There are definite genetic mutations related to the known forms of PP. There are several other medical conditions called 'differential diagnoses' that have similar symptoms like Sjogren's, Bartter Syndrome, Conn Syndrome, Multiple Sclerosis, Hyperaldosteronism and these must be ruled out before a diagnosis is confirmed.

Periodic Paralysis is far too rare to just happen due to exposure to something. My other thought is that it really is not Periodic Paralysis unless it is genetic, although only 50% of the mutations have been found and may never be found in this lifetime. Symptoms may be similar but it is not PP unless there is a genetic component, whether it has been found or not. So in my belief, due to my research, PP is not secondary to anything. There are many triggers, however, that may set a predisposed PP into motion. Vaccination, illness, toxic exposure, drugs of all kinds, infectious diseases, IV's, anesthesia, steroids and so much more may be the initial trigger for the first episode/s and symptoms, but they are not the cause....not for true Periodic Paralysis...The only cause of Periodic Paralysis is a genetic mutation (whether it has been found or not).

Criteria For Making A Genetic Diagnosis:

The following are the typical genetic mutations for most of the known forms of PP:

Hypokalemic Periodic Paralysis is caused by abnormalities in the SCN4A, KCNJ18 and CACNA1S genes.

Hyperkalemic Periodic Paralysis is caused by abnormalities in the SCN4A gene.

Andersen-Tawil Syndrome is caused by abnormalities in the KCNJ2 gene and the KCNJ5 gene.

Normokalemic Periodic Paralysis is caused by abnormalities in the SCN4A and CACNA1C genes.

Paramyotonia Congenita is caused by abnormalities in the SCN4A gene.

Thyrotoxic Periodic Paralysis is caused by abnormalities in the KCNE3, KCNJ18, SCN4A and CACNA1S genes. (most cases are not linked to these genetic mutations...most are from malfunctioning thyroids)

S= sodium channelopathy
K= potassium channelopathy
C= calcium channelopathy

If genetic testing that is totally unbiased and unlimited is negative for PP, it only means that the person has a form has not yet been discovered or recognized. It does not mean that they do not have PP.

Until later.....

Added June 24, 2024:

Three newer discovered genetic mutations for Periodic Paralysis!!!

ATP1A2 mutation,

MCM3AP mutation

RYR1 mutation

Monday, October 9, 2017

Balance and Periodic Paralysis

Balance and Periodic Paralysis

Hello All,

I constantly discuss staying ‘totally balanced’ in all ways in order to manage our symptoms…but what does that mean exactly?? The following is my explanation.

Periodic Paralysis is a Mineral Metabolic Disorder, which is also known as an ion channelopathy. This means that the levels of the minerals/electrolytes/ions in the blood can become abnormal or can fluctuate in error depending on several issues. There will be either not enough minerals in the blood or too many minerals in the blood. Many things we call ‘triggers’ can cause this for us including, but not limited to, drugs, IV’s anesthesia, some foods (junk food, processed foods-anything not natural), food fillers and dyes, exercise, exertion, temperature fluctuations, heat, cold, stress, sleep, sodium, sugar, carbohydrates.

For those of us with varying forms of Periodic Paralysis, when a trigger is introduced in our bodies, the minerals shift and it causes many symptoms, most notably, periods of paralysis. These can be either partial or full-body. Therefore it is important for us to stay balanced.

First, this means we must keep the electrolytes/minerals in balance. These include:

potassium (K+) Use potassium meter to monitor levels.

magnesium (Mg++)

sodium (Na+)

chloride (Cl-)

calcium (Ca++)

bicarbonate (HCO3-)

phosphate (HPO4–)

Second, other things that need to be well balanced:

Sugar/glucose: Use glucose meter (blood), follow a diabetic diet and eat smaller amounts more often to prevent sugar highs and lows.

pH/acid/alkaline: Use pH strips (urine and saliva), follow a pH or alkaline balanced diet.

Hydration/dehydration: Drink plenty of water, but not too much. Low or high levels of water/fluid affect mineral levels.

Salt/sodium: Salt can be a trigger, use low sodium foods with care, the salt in those foods is replaced with potassium for flavor so will increase potassium levels.

Body temperature: Use a thermometer. Fever can create symptoms. Heat and cold also causes symptoms.

Vitamins: Any vitamin imbalance can create symptoms.

Exercise/exertion: Too much exertion or exercise sets our symptoms into motion, it is important to know your own limits.

Blood pressure: Monitor with a blood pressure wrist cuff. Blood pressure needs to be kept at normal levels. This can be done with diet and staying balanced.

Oxygen levels: Monitor with finger pulse oximeters, below 95% the cells begin to be starved causing damage. If blood pressure is up or down, oxygen may be needed to avoid damage. Low oxygen levels prevent the cells from working properly and it affects the brain, heart and energy levels.

Heartbeat: Monitor with finger pulse oximeters and blood pressure wrist cuff. If heart rate is too slow the heart has to work harder and the brain and other organs are not getting the oxygen they need and if the heart is beating too fast the organs and other tissue is being deprived of oxygen.

Carbohydrates: Too many carbohydrates in a meal affect HypoKPP, but HyperKPP needs more carbohydrates in the diet.

Sleep: A lack of sleep causes chemical imbalances in the body and affects insulin levels, among other issues.

Stress (good or bad): This causes adrenaline to rise, which lowers potassium levels and also affects insulin levels.

Drugs/medications/over-the-counter: Avoid at all cost. These will cause serious imbalances in many different ways, depending on their composition and our form of Periodic Paralysis and co-existing conditions.

If we can keep our bodies in balance, we can minimize our symptoms and improve our quality of life. It is a constant battle and not easy but the results are well worth it. We can be the best we can be, naturally, by following the above ideas. We equate it to constantly walking a tightrope.

This form helps to monitor the above issues in order to stay in balance.