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

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

More:

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…