Serene Forest

Saturday, May 11, 2019

Not Everyone With Periodic Paralysis Needs To Be Taking Potassium Supplementation

NOT EVERYONE WITH PP NEEDS TO BE TAKING POTASSIUM SUPPLEMENTATION
Hello All....This is long...but very important!!


ABOUT POTASSIUM

There NEEDS TO BE SOME CLARIFICATION ON THE USE AND NEED OF POTASSIUM IN RELATIONSHIP TO THE DIFFERENT FORMS OF PERIODIC PARALYSIS (PP)...AND METABOLIC ACIDOSIS. PPN exists to provide Support, Education and ADVOCACY to all individuals with the varying forms of Periodic Paralysis.This means we need to advocate for your medical safety.....

I have written much about this...I will try to clarify as simply as I can and add some information from other Blog Articles and Notes from our PPN Support Group...

NOT EVERYONE WITH PP NEEDS TO BE TAKING POTASSIUM.

Unless you know exactly that your levels of potassium are low (at any given moment), you may not need potassium supplementation. Potassium shifts very quickly and can be in normal ranges right after the shift and back to normal by the time a blood test is done. If it us is in normal ranges....potassium may not be needed. Taking potassium when it is not needed it can shift into hyperkalemia...and cause different symptoms and make one worse....pain, cramping, muscle tightness are indications of high potassium. Taking large amounts of potassium can be very harmful, unless it is proven that it is needed. Using potassium readers is the only way to know for sure what the level of potassium is at any given moment...a test taken last week or last month has no bearing on what it is at this very moment. IF YOUR SYMPTOMS ARE WORSE AFTER INCREASING POTASSIUM, IT MAY BE THE INCREASE OF POTASSIUM CAUSING THE WORSE SYMPTOMS.

NOT ALL FORMS OF POTASSIUM ARE THE SAME. THERE ARE DIFFERENT TYPES OF POTASSIUM FOR DIFFERENT ISSUES ACCOMPANYING YOUR SYMPTOMS.


TYPES OF POTASSIUM

When considering which type of potassium to use, it is important to understand the most common types; potassium bicarbonate,potassium citrate and potassium chloride. Potassium bicarbonate is a salty substance with no color or smell and it neutralizes acidity. Potassium citrate is also a salty substance. It is potassium bicarbonate, which has been combined with citric acid for faster absorption. It reduces acidity. Potassium chloride is also a salty substance created from a combination of potassium and chlorine.It will increase the acidity in the body.

It comes in many forms which include, salts, powders, liquid, and tablets. Some tablets may be released overtime or some are easily dissolved. Liquid forms need to be diluted in water.The soluble tablets ad powder or salt forms need to be dissolved in water.Tablets should be swallowed whole with 8 ounces of water after meals.

How does someone know which type and form is best for him or her? We are not medical doctors so we avoid offering advice about the type of potassium supplement to use. That needs to be discussed with your trusted medical adviser. However, that being said, the various forms and types are discussed here for a better understanding and decision-making.

After researching and knowing that I have chronic metabolic acidosis (Most of us with PP do have this), I chose to use potassium bicarbonate because it neutralizes the acidity in my body. I use the salt form because and I can dilute it in water for quick absorption. I take it when my potassium levels are low. I must be careful with the amount I take because I easily swing into high potassium levels.

Although most individuals with Periodic Paralysis will get prescriptions for potassium, some may chose or need to purchase their own potassium supplements. If you purchase your own form be sure to use natural sources of potassium from a reliable natural organic source.

ONLY INDIVIDUALS WITH HYPOKALEMIC PERIODIC PARALYSIS AND THYROTOXIC PERIODIC PARALYSIS MAY NEED TO TAKE POTASSIUM SUPPLEMENTATION. (This should be done with the knowledge, instruction and direction of your doctor.)

Many individuals with Periodic Paralysis take potassium, but many do not, nor should they. It is best to remember that not all people with PP actually need to take potassium supplements.

Many of us shift only in normal ranges. All forms can shift only within normal levels but the ones most prone to this are Normokalemic Periodic Paralysis, and Andersen-Tawil Syndrome (ATS). (Those with ATS shift between low, normal and high depending on the triggers). Those with Hyperkalemic Periodic Paralysis shift into high levels of potassium so if we take potassium it causes us major symptoms and paralysis. Still others of us shift high and low, so we should not take it unless we know we are low and know it for sure and monitor it closely. Potassium is a very individual issue for each of us.

UNLESS YOU HAVE A GENETIC DIAGNOSIS, IT MAY NOT BE POSSIBLE TO BE SURE WHAT FORM YOU HAVE UNLESS THE SYMPTOMS ARE CLOSELY RECORDED AND STUDIED. WE HAVE FORMS, CHARTS, ETC. TO HELP FIGURE THIS OUT.

EVERYONE HAS THEIR OWN LEVEL OF POTASSIUM THAT IS NORMAL FOR THEM.

An individual with Periodic Paralysis may have his or her own individual levels of potassium at which symptoms or paralysis occurs. What may be normal ranges for someone may be high for another. Using a potassium reader to discover one’s high, normal and low ranges is suggested, for better treatment.

Our own "NORMAL" levels of potassium vary greatly. Some of us have "normal" levels in the 5.0's while others may be normal in the 3.0's. This depends on many things, but most likely the form of PP that you have and the way it manifest in you, individually. Just because a doctor (who probably does not understand this feature of PP) wants you to be at 4.5..that actually may not be right for you. Your symptoms are your clues...
(The numbers below are related to normal individuals)


YOUR SYMPTOMS ARE CLUES TO WHETHER YOU ARE IN LOW OR HIGH POTASSIUM.
(Some may cross over)


HYPERKALEMIC PERIODIC PARALYSIS:

Hyperkalemic Periodic Paralysis Hyperkalemic Periodic Paralysis, also known as Gamstorp Disease, accounts for about 15 to 20% of all forms of Periodic Paralysis. If an individual has Hyperkalemic Periodic Paralysis he or she becomes partially or fully paralyzed intermittently based on the way the body controls sodium and potassium levels in the cells. It is associated with high levels of potassium (hyperkalemia) during paralytic episodes. When potassium shifts into higher ranges in normal individuals, it is called hyperkalemia. High potassium levels in the blood will occur for anyone and a myriad of symptoms may be experienced and can be dangerous, even deadly. If an individual has Hyperkalemic Periodic Paralysis and potassium shifts into higher ranges, he or she can and will experience a combination of the same myriad of symptoms as well as paralysis and can be equally as dangerous and deadly. When potassium levels are at a slightly elevated level there may be no symptoms. At a moderately higher level, which is usually between 5.5 and 6.5 mEq/L, there may be some symptoms involving muscles, digestion, kidneys, electrolyte balance, the liver and the heart. Potassium levels above 6.5 mEq/L are very serious and usually require medical attention.

Muscles: Fatigue, weakness, pins and needles, tingling or numbness in the extremities, muscle contraction, muscle rigidity, muscle cramps, muscles stiffness, muscle twitching, muscle cramping, reduced reflexes, muscle contraction involving tongue, tightness in legs, strange feeling in legs.

Digestion: Discomfort, nausea, vomiting, stomach cramps, diarrhea, vomiting.

Heart: Palpitations, chest pain, irregular heartbeat, slow heartbeat, weak pulse, absent pulse, heart stoppage, small P waves, tall T waves, QRS abnormality, P wave abnormality, QT lengthening, fast heartbeat.

Kidneys: Breathing problems, wheezing, shortness of breath, fast breathing, feeling hot, low blood pressure.

Liver: The brain function becomes affected: Irritability, sleepiness, confusion, seizures, and loss of consciousness.

Paralysis: Episodic muscle weakness, episodic partial paralysis, episodic total paralysis.

Laboratory blood changes: Elevated blood potassium, serum sodium level elevated, Serum CPK (creatine).

Laboratory urine changes: Elevated urine pH level.


HYPOKALEMIC PERIODIC PARALYSIS:

Hypokalemic Periodic Paralysis Hypokalemic Periodic Paralysis, also known as Westphall Disease, is the most common form of Periodic Paralysis accounting for about 70% of all cases. If an individual has Hypokalemic Periodic Paralysis he or she become partially or fully paralyzed intermittently. As already stated, the paralysis results from potassium moving from the blood into muscle cells in an abnormal way. It is associated with low levels of potassium (hypokalemia) during paralytic episodes

When potassium shifts into lower ranges in normal individuals, it is called hypokalemia. Low potassium levels in the blood will occur for anyone and a myriad of symptoms may be experienced and can be dangerous, even deadly. If an individual has Hypokalemic Periodic Paralysis and potassium shifts into lower ranges, he or she can and will experience a combination of the same myriad of symptoms as well as paralysis and can be equally as dangerous and deadly. When potassium levels are low, which is usually between 2.5 to 3.5 mEq/L, the following symptoms can occur: tiredness, pain in the muscles, cramping, upset stomach, constipation, lightheadedness, depression, mood swings.

Potassium levels below 2.5 mEq/L affect many functions of the body including the muscles, digestion, kidneys, electrolyte balance, the liver and the heart.

Muscles: fatigue, pain in the joints, muscle weakness, muscle weakness after exercise, muscle stiffness, muscle aches, muscle cramps, muscle contractions, muscle spasms, muscle tenderness, pins and needles sensation, eyelid myotonia (cannot open eyelid after opening and then closing them).

Digestion: Upset stomach, loss of appetite, vomiting, constipation, diarrhea, bloating of the stomach and full feeling in the stomach, blockage in the intestines called paralytic ileus.

Heart: Anxiousness, irregular and rapid heartbeat, angina, prominent U waves, inverted or flattened T waves, ST depression, elongated PR interval.

Kidneys: Severe thirst, increased urination, difficulty breathing, too slow or shallow breathing, lack of oxygen in the blood, sweating, increased blood pressure, metabolic acidosis.

Liver: The brain function becomes affected: Irritability, decrease in concentration, lack of clear thinking, confusion, slurring of speech, seizures.

Paralysis: Episodic muscle weakness, episodic partial paralysis, episodic total paralysis episodic flaccid paralysis (limp muscles, without tone).

Laboratory blood changes: Increased number of neutrophils in blood, increased number of white blood cells in the blood, reduced number of eosinophils in blood, increased number of lymphocytes in blood, low blood sodium, low blood potassium, elevated Serum CPK (creatine).

Laboratory urine changes: Excess protein in urine, excess sugar in the urine, excessive acetone in urine, and presence of renal casts in urine.

An individual with Periodic Paralysis may have his or her own individual levels of potassium at which symptoms or paralysis occurs. What may be normal ranges for someone may be high for another. Using a potassium reader to discover one’s high, normal and low ranges is suggested, for better treatment.

Factors, which can trigger attacks, are: Excessive carbohydrates, alcoholic beverages, sodium/salt, viruses, certain medications, epinephrine, cold, anesthesia, excitement/fear, exercise, and rest or sleep (all phases).

Attacks of paralysis may be reduced by: Eating high potassium foods, staying warm, staying well rested, staying hydrated, avoiding drugs that decrease potassium levels, avoiding known triggers such as stress, exercise, carbohydrates, and salt. Some off-label drugs, which can be effective for treating the symptoms, are available for some individuals with Hypokalemic Periodic Paralysis but they should be used with extreme caution due to serious side effects.

YOUR SYMPTOMS MAY BE FROM METABOLIC ACIDOSIS OR METABOLIC ALKALOSIS NOT A DROP OR INCREASE IN POTASSIUM.

Because Periodic Paralysis is a MINERAL METABOLIC DISORDER we are prone to chronic Metabolic Acidosis (too acidic or Metabolic Alkalosis too alkaline). Our symptoms may actually be due to this not actual potassium shifting.

SYMPTOMS OF METABOLIC ACIDOSIS:

"Some of the more common symptoms of metabolic acidosis are muscle weakness, bone and muscle pain, headache, chest pain, tachycardia, heart palpitations, abdominal pain, rapid breathing, shortness of breath, confusion, drowsiness, a lack of energy and paralysis for persons with Periodic Paralysis. If metabolic acidosis becomes severe it can lead to shock (a lack of an appropriate flow of blood in the body) or death. However, the symptoms of metabolic acidosis are sometimes not very obvious or specific, depending on the cause. It should be noted that in some individual’s metabolic acidosis could be mild and ongoing (chronic).

In chronic metabolic acidosis an individual’s bones and kidneys are affected. When potassium shifts in the body, calcium carbonate from the bone is released. This causes a loss of the bone crystals leading to osteoporosis. When the kidneys are affected and this can be seen by the formation of kidney stones. "

So it is especially important to maintain that 70/30 balance and it can be done with a pH diet. We may eat some of those things that are more acidic, just remember to keep the 70/30 balance.


SYMPTOMS OF METABOLIC ALKALOSIS:

Confusion (can progress to stupor or coma)
Hand tremor
Lightheadedness
Muscle twitching
Nausea, vomiting
Numbness or tingling in the face, hands, or feet
Prolonged muscle spasms (tetany)


THERE ARE DIFFERENT TYPES OF POTASSIUM FOR DIFFERENT ISSUES ACCOMPANYING YOUR SYMPTOMS.

(See above)


Until Later...

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!



Until Later...

Tuesday, March 26, 2019

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 Books:
"Living With Periodic Paralysis: The Mystery Unraveled"
"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"
"A Bill Of Rights For Periodic Paralysis Patients"
"What Is Periodic Paralysis?: A Disease Like No Other"
Our books are found on Amazon.com:
and our PPN website:
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:

For more information please visit our:

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)

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

 

"Living with Periodic Paralysis: The Blog" Happy First Anniversary!!

http://livingwithperiodicparalysis.blogspot.com/2014/11/living-with-periodic-paralysis-blog.html

 

Prognosis

http://livingwithperiodicparalysis.blogspot.com/2014/11/prognosis.html

 

Bravelets Cause!!

http://livingwithperiodicparalysis.blogspot.com/2014/11/bravelets-cause.html

 

300 Members!!!

http://livingwithperiodicparalysis.blogspot.com/2014/10/300-members.html

 

Periodic Paralysis Awareness GoFundMe

http://livingwithperiodicparalysis.blogspot.com/2014/10/periodic-paralysis-awareness-gofundme.html

 

"This is Not an Acceptable Way to Make a Diagnosis" Guest Blogger

http://livingwithperiodicparalysis.blogspot.com/2014/10/this-is-not-acceptable-way-to-make.html

 

Conversion Disorder Again?? Really??

http://livingwithperiodicparalysis.blogspot.com/2014/10/conversion-disorder-again-really.html

 

Why haven't they done genetic testing?

http://livingwithperiodicparalysis.blogspot.com/2014/10/why-havent-they-done-genetic-testing.html

 

The Incorporation of Periodic Paralysis Network, Inc (PPNI)

http://livingwithperiodicparalysis.blogspot.com/2014/09/the-incorporation-of-periodic-paralysis.html

 

GeneticTesting Should Be For Any Mutation Close To The Relevant Gene

http://livingwithperiodicparalysis.blogspot.com/2014/09/genetictesting-should-be-for-any.html

 

"Why Do You Need A Diagnosis?"

http://livingwithperiodicparalysis.blogspot.com/2014/09/why-do-you-need-diagnosis.html

 

Someone who understands (Guest Writer Maureen)

http://livingwithperiodicparalysis.blogspot.com/2014/09/someone-who-understands.html

 

Pain and Periodic Paralysis

http://livingwithperiodicparalysis.blogspot.com/2014/09/pain-and-periodic-paralysis.html

 

275 Members!!

http://livingwithperiodicparalysis.blogspot.com/2014/09/275-members.html

 

Our Members Around the World!!

http://livingwithperiodicparalysis.blogspot.com/2014/07/our-members-around-world.html

 

All patients should be treated with dignity! Guest Blogger: Maria Pinzon

http://livingwithperiodicparalysis.blogspot.com/2014/07/all-patients-should-be-treated-with.html

 

250 Members!!!!

http://livingwithperiodicparalysis.blogspot.com/2014/07/250-members.html

 

Exercise Intolerance

http://livingwithperiodicparalysis.blogspot.com/2014/07/exercise-intolerance.html

 

Types of Potassium

http://livingwithperiodicparalysis.blogspot.com/2014/07/types-of-potassium.html

 

Open Letter To Doctors by Guest Writer, Carolanne

http://livingwithperiodicparalysis.blogspot.com/2014/07/open-letter-to-doctors-by-guest-writer.html

 

Beware Of "Off-Label" Drugs

http://livingwithperiodicparalysis.blogspot.com/2014/06/beware-of-off-label-drugs.html

 

"This Book Lead To My Genetic Diagnosis Of Anderson-Tawil Syndrome II": Book Review by Guest Blogger Tammy

http://livingwithperiodicparalysis.blogspot.com/2014/06/this-book-lead-to-my-genetic-diagnosis.html

 

Changing Lives Naturally

http://livingwithperiodicparalysis.blogspot.com/2014/06/changing-lives-naturaly.html

 

Paramyotonia Congenita: Another Form Of Periodic Paralysis

http://livingwithperiodicparalysis.blogspot.com/2014/05/paramyotonia-congenita-another-form-of.html

 

New Discoveries

http://livingwithperiodicparalysis.blogspot.com/2014/05/new-discoveries.html

 

200 Members!!

http://livingwithperiodicparalysis.blogspot.com/2014/05/200-members.html

 

A Reply to a Conversion Disorder Diagnosis by Guest Blogger Maureen

http://livingwithperiodicparalysis.blogspot.com/2014/05/a-reply-to-conversion-disorder.html

 

The Challenges of Periodic Paralysis by Guest Writer

http://livingwithperiodicparalysis.blogspot.com/2014/05/the-challenges-of-pp-by-guest-writer.html

 

Plagiarism

http://livingwithperiodicparalysis.blogspot.com/2014/04/plagiarism.html

 

Periodic Paralysis vs Cancer

http://livingwithperiodicparalysis.blogspot.com/2014/04/periodic-paralysis-vs-cancer.html

 

Standard Healthy Eating Is Not Best For Individuals With PP

http://livingwithperiodicparalysis.blogspot.com/2014/04/standard-healthy-eating-is-not-best-for.html

 

The Periodic Paralysis Network

http://livingwithperiodicparalysis.blogspot.com/2014/04/the-periodic-paralysis-network.html

 

Periodic Paralysis Network Diagnosis Project Part Two

http://livingwithperiodicparalysis.blogspot.com/2014/04/periodic-paralysis-network-diagnosis_8.html

 

Periodic Paralysis Network Diagnosis Project

http://livingwithperiodicparalysis.blogspot.com/2014/04/periodic-paralysis-network-diagnosis.html

 

Our Diagnostic Rights

http://livingwithperiodicparalysis.blogspot.com/2014/03/our-diagnostic-rights.html

 

The Five Stages of Loss in Chronic Illness

http://livingwithperiodicparalysis.blogspot.com/2014/03/the-five-stages-of-loss-in-chronic.html

 

Clinical Diagnosis vs Genetic Diagnosis

http://livingwithperiodicparalysis.blogspot.com/2014/03/clinical-diagnosis-vs-genetic-diagnosis.html

 

Rare Disease Day!!!

http://livingwithperiodicparalysis.blogspot.com/2014/02/rare-disease-day.htm

 

Rhabdomyolysis

http://livingwithperiodicparalysis.blogspot.com/2014/02/rhabdomyolysis.html

 

Over 150 Members Now!!!

http://livingwithperiodicparalysis.blogspot.com/2014/02/over-150-members-now.html

 

Metabolic Acidosis and pH Balance

http://livingwithperiodicparalysis.blogspot.com/2014/02/metabolic-acidosis-and-ph-balance.html

 

Periodic Paralysis and Anesthesia

http://livingwithperiodicparalysis.blogspot.com/2014/02/periodic-paralysis-and-anesthesia.html

 

Some Forms of Periodic Paralysis are Worsened by Diamox

http://livingwithperiodicparalysis.blogspot.com/2014/02/some-forms-of-pp-worsened-by-diamox.html

 

No Tourniquet Please!!!

http://livingwithperiodicparalysis.blogspot.com/2014/02/no-tourniquet-please.html

 

Happy Anniversary to US!!!

http://livingwithperiodicparalysis.blogspot.com/2014/02/happy-anniversary-to-us.html

 

The Truth About Diagnosing and Treating Periodic Paralysis

http://livingwithperiodicparalysis.blogspot.com/2014/02/the-truth-about-diagnosing-and-treating.html

 

What is Normokalemic Periodic Paralysis?

http://livingwithperiodicparalysis.blogspot.com/2014/02/what-is-normokalemic-periodic-paralysis.html

 

My Story: How I Got My Diagnosis Of Periodic Paralysis

http://livingwithperiodicparalysis.blogspot.com/2014/02/my-story-how-i-got-my-diagnosis-of.html

 

What is Periodic Paralysis?

http://livingwithperiodicparalysis.blogspot.com/2014/02/what-is-periodic-paralysis.html

 

A Message To Our Non-English Speaking Members

http://livingwithperiodicparalysis.blogspot.com/2014/01/a-message-to-our-non-english-speaking.html

 

Dysautonomia and Periodic Paralysis

http://livingwithperiodicparalysis.blogspot.com/2014/01/dysautonomia.html

 

Isolated Diastolic Hypotension and High Pulse Pressure

http://livingwithperiodicparalysis.blogspot.com/2014/01/isolated-diastolic-hypotension-and-high.html

 

What is an Ion Channelopathy?

http://livingwithperiodicparalysis.blogspot.com/2014/01/what-is-ion-channelopathy.html

 

Permanent Muscle Weakness in Periodic Paralysis...Continued

http://livingwithperiodicparalysis.blogspot.com/2014/01/permanent-muscle-weakness-in-periodic_12.html

 

Permanent Muscle Weakness in Periodic Paralysis

http://livingwithperiodicparalysis.blogspot.com/2014/01/permanent-muscle-weakness-in-periodic.html

 

What is Hypokalemic Periodic Paralysis?

http://livingwithperiodicparalysis.blogspot.com/2014/01/what-is-hypokalemic-periodic-paralysis.html

 

The Effects Of Periodic Paralysis Cannot Be Minimized For Most Of Us

http://livingwithperiodicparalysis.blogspot.com/2014/01/the-effects-of-periodic-paralysis.html

 

Periodic Paralysis and New Years Resolutions January 1, 2014

http://livingwithperiodicparalysis.blogspot.com/2014/01/periodic-paralysis-and-new-years.html

 

Happy New Year!!!! December 31, 2013

http://livingwithperiodicparalysis.blogspot.com/2013/12/happy-new-year-december-31-2013.html

 

Monitoring Vital Signs For Individuals With Periodic Paralysis

http://livingwithperiodicparalysis.blogspot.com/2013/12/monitoring-vital-signs-for-individuals.html

 

Why People With Some Forms Of Periodic Paralysis Should Not Use Intravenous Therapy (IVs).

http://livingwithperiodicparalysis.blogspot.com/2013/12/why-people-with-some-forms-of-periodic.html

 

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

http://livingwithperiodicparalysis.blogspot.com/2013/12/idiosyncratic-and-paradoxical-reactions.html

 

Finding a Doctor Who Cares

http://livingwithperiodicparalysis.blogspot.com/2013/12/finding-doctor-who-cares-december-19.html

 

Periodic Paralysis and Metabolic Acidosis

http://livingwithperiodicparalysis.blogspot.com/2013/12/periodic-paralysis-and-metabolic.html

 

What is Hyperkalemic Periodic Paralysis?

http://livingwithperiodicparalysis.blogspot.com/2013/12/what-is-hyperkalemic-periodic-paralysis.html

 

Hope For Individuals With Periodic Paralysis

http://livingwithperiodicparalysis.blogspot.com/2013/12/hope-for-individuals-with-periodic.html

 

Conversion Disorder vs Periodic Paralysis

http://livingwithperiodicparalysis.blogspot.com/2013/12/conversion-disorder-vs-periodic.html

 

What is Andersen-Tawil Syndrome?

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

 

What is Sotos Syndrome?

http://livingwithperiodicparalysis.blogspot.com/2013/12/what-is-sotos-syndrome-december-8-2013.html

 

How Many People in the World Have Periodic Paralysis?

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

 

Avoiding the Pitfalls of the Emergency Room

http://livingwithperiodicparalysis.blogspot.com/2013/12/avoiding-pitfalls-of-emergency-room.html

 

Periodic Paralysis and the ERThe Narrative

http://livingwithperiodicparalysis.blogspot.com/2013/12/periodic-paralysis-and-erthe-narrative.html

 

When to Call For an Ambulance

http://livingwithperiodicparalysis.blogspot.com/2013/12/when-to-call-for-ambulance-december-3.htm

 

Triggers

http://livingwithperiodicparalysis.blogspot.com/2013/12/triggers-december-1-2013.html

 

Pharmaceuticals Are Not the Answer For Some Rare Diseases

http://livingwithperiodicparalysis.blogspot.com/2013/11/pharmaceuticals-are-not-answer-for-some.html

 

Periodic Paralysis and Balance

http://livingwithperiodicparalysis.blogspot.com/2013/11/periodic-paralysis-and-balance-november.html

 

Periodic Paralysis Diet

http://livingwithperiodicparalysis.blogspot.com/2013/11/periodic-paralysis-diet-november-25-2013.html

 

Periodic Paralysis and Iatrogenic Illness?

http://livingwithperiodicparalysis.blogspot.com/2013/11/periodic-paralysis-and-iatrogenic.html

 

Walking the Tightrope Using The Plan

http://livingwithperiodicparalysis.blogspot.com/2013/11/walking-tightrope-using-plan-november.html

 

My Power Wheelchair

http://livingwithperiodicparalysis.blogspot.com/2013/11/my-power-wheelchair-november-21-2013.html

 

The How and Why of our Book?? 'Living With Periodic Paralysis: The Mystery Unraveled'

http://livingwithperiodicparalysis.blogspot.com/2013/11/the-how-and-why-of-our-book-november-20.html

 

Emergency Instruction Chart

http://livingwithperiodicparalysis.blogspot.com/2013/11/emergency-instruction-chart-november-19.html

 

Episodes of Paralysis Continued

http://livingwithperiodicparalysis.blogspot.com/2013/11/episodes-of-paralysis-continued.html

 

Episodes of Paralysis

http://livingwithperiodicparalysis.blogspot.com/2013/11/episodes-of-paralysis-november-17-2013.html

 

Diagnosis Continued

http://livingwithperiodicparalysis.blogspot.com/2013/11/diagnosis-continued-november-16-2013.html

 

The Diagnosis

http://livingwithperiodicparalysis.blogspot.com/2013/11/the-diagnosis-november-15-2013.html

 

Potassium and Potassium Meters

http://livingwithperiodicparalysis.blogspot.com/2013/11/potassium-and-potassium-meters-november.html

 

What is Periodic Paralysis??

http://livingwithperiodicparalysis.blogspot.com/2013/11/what-is-periodic-paralysis-november-13.html

 

Welcome to the world of Periodic Paralysis!

http://livingwithperiodicparalysis.blogspot.com/2013/11/welcome-to-world-of-periodic-paralysis.html



Our message has not changed in the past five years. We still hope to bring awareness and understanding of Periodic Paralysis to the world.  We will continue to add new articles as the need arises or as new information becomes available.



Until later...