Serene Forest

Friday, September 5, 2014

275 Members!!

Congratulations to us all at the PPN Support, Education and Advocacy Group!!! We now have over 275 members!!!!!!!! Thanks for your support.

Our PPN Network Forum!

Please check out our PPN Members World Map:

PPN Website:

PPN Support, Education and Advocacy Group:

PPN Book: "Living With Periodic Paralysis: The Mystery Unraveled"
(Found on our website)

PPN Blog:

PPN Book Discussion Group:

PPN Genealogy-Genetic Discussion Group:

PPN Website Facebook Page:

PPN Author's Page:


Thank you all for your support........

Monday, July 28, 2014

Our Members Around the World!!

This map pinpoints the members of our Periodic Paralysis Support, Education and Advocacy Group around the world!! Periodic Paralysis does not seem to be as rare as some might think. It is just under- diagnosed, under-publicized and ignored!! We need to spread the word and bring awareness to this debilitating condition!!!

If you want to know more about Periodic Paralysis, you can go to:
Our website:

Or you can purchase our book "living with Periodic Paralysis: The Mystery Unraveled" at:

If you have Periodic Paralysis or think you may have it you may join us at our
Periodic Paralysis Support, Education and Advocacy Group:

Friday, July 25, 2014

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

Hello All,

The following was posted on our Periodic Paralysis Network Support, Education and Advocacy Group. Maria’s message is an important one for all of us so I wanted to share it on our blog. Thank you Maria!!

"Hi Susan,

I want to let you know, you are a brave and beautiful lady! I am reading your book " living with Periodic Paralysis". It is a true eye opener! I almost feel that I am reading not only the story of your life, but also the story of mine! I have experienced many of the same things you experienced growing up as a child that seemed innocuous at the time. I am now 49, not quite your age, and my symptoms have not progressed as horribly as yours. I hope they will not, but I suspect that maybe somewhere down the line we may possibly have some genetics that may link us together some how. I too have had the horrible experience of going to the ER with symptoms, and the first thing everyone wants to do is shoot me up with some Ativan, because my symptoms seem, "crazy".

Fortunately, I was a nurse, and I am aware how much of the medical personnel run to their drug of choice, Ativan, when they believe things are all in your head, and they want to make their inconvenience go away with some Ativan. I have always asked what they are giving me before they do, and I have always refused Ativan. Unfortunately, you were not in the position to advocate for yourself as you could not speak, and I have not yet had full bouts of paralysis, just full body weakness, numbness, and slurred speech and ataxia.

Because our condition is so incredibly rare, we may only get the word out to a small number of people, but there is a much larger issue here, and it is a question of human dignity. All patients should be treated with dignity. No patient should be considered a psyche problem, just because the medical professionals don't understand what is going on with them, and no patient should be sedated with Ativan or any other "psyche" drug or any other sedative type medication, because it is convenient for the nurse, and makes the inconvenience go away, before it is fully understood what is going on with the patient, and these drugs can make things much worse!

What medical text in the world states that a person with muscle weakness and slurred speech should be given Ativan??? Quite the opposite, those are signs that Ativan could make it worse, and should not be given, but that does not seem to be what is commonly practiced today! For any crazy symptom, they run to their drugs of choice to deal with the "whack jobs" that so many of my colleagues will whisper behind the patients backs! Don't get me wrong, there are the good nurses and doctors out there, who don't run to Ativan for every strange symptom, but they are few and far between!

This is a dangerous practice to administer these drugs when you don't truly understand what is going on with the patient! I fear there may come a day when I cannot advocate for myself so easily and not be able to ask what they are trying to give me, or not be able to legally and rightfully refuse it, much to their chagrin, and I hope that day never comes, but my symptoms are progressively getting worse. I have worked with far too many nurses and doctors who joke about Ativan, Haldol, Lorazepam, Valium and many other of these type of drugs being their "best friend" because a patient is having weird, "crazy" symptoms they can't control, but don't want to try, or don't have the time to try and understand or figure out! Medical professionals are supposed to do what is best for the patient, not what is most convenient for the doctor or nurse at the time. This is bad medicine and dangerous practice!!!

They take the Hippocratic and Florence Nightingale Oaths, but how many of them really take those oaths seriously? Or are these oaths they take just a nice poem they read on the day of their graduation to mark the event for many, not something they are actually called to live by? I believe every doctor, every nurse, and every medical professional should be required to read your story. Maybe more lives can be saved; maybe more bad drugs or inappropriate drugs may be prevented from being administered. Your struggle, and mine, is not just a struggle against a horrible disease, but also a struggle to be treated with dignity in the process!

God Bless you Susan Q Knittle-Hunter! Your fight and your story may do even more good in the future, then you will ever know! With much sincere respect and admiration, and a fellow sufferer of HPP and possibly Anderson Tawil Syndrome,

Maria Pinzon"

Until later...

Sunday, July 20, 2014

250 Members!!!!

Congratulations to us all at the PPN Support and Education Group!!! We now have over 250 members!!!!!!!!

Thursday, July 17, 2014

Exercise Intolerance

Hello All,

Many of the members of our PPN Support, Education and Advocacy Group write about and ask questions about puzzling and debilitating symptoms everyday. Most of these symptoms are actually related to exercise intolerance. I have decided today to share a passage from our book, living with Periodic Paralysis: The Mystery Unraveled about exercise intolerance. I hope it will answer some of those questions.

(The photo I did not share from the visit to the lake last week)

 Exercise Intolerance

“We know that there are two types of involvement of muscles in individuals with Periodic Paralysis. There are attacks of paralysis of the muscles, which are intermittent, and there is a myopathy or a progressive, permanent muscle weakness, which can occur. Some individuals experience one or the other and some experience both conditions, though it is less common to have both, and it is very rare to have only the progressive, permanent muscle weakness. If an individual develops the progressive, permanent form of periodic paralysis, it begins as exercise intolerance, usually in the legs and feet, which progressively spreads to the rest of the muscles in the body.  

In exercise intolerance the individual is not able to do physical exercise or exertion that would be expected from someone of his or her age and overall health level nor for the amount of time expected. He or she lacks stamina. The individual may also experience extreme pain and fatigue after exercising or exertion and other symptoms such as a feeling of heaviness in the muscle groups. Exercise intolerance is a symptom rather than a condition or disease. It is a common symptom found in several diseases including metabolic disorders. Periodic Paralysis is a mineral metabolic myopathy.

Food and oxygen are normally converted into energy and delivered to the muscles but this cycle is disrupted in individuals with exercise intolerance. The muscles are unable to use the nutrients and oxygen and therefore, enough energy may not be generated to the muscles and he or she is left with little or no energy. The degrees of low energy can be mild or extreme and the symptoms may occur during exercise or exertion or they can occur later, even the next day.

Symptoms of exercise intolerance include: fatigue, muscle cramps, insufficient heart rate, depression, changes in blood pressure and cyanosis. Fatigue may show within minutes of beginning to exercise with shortness of breath or dizziness. This is a sign that sufficient oxygen is not being processed. For individuals with severe exercise intolerance this can happen after doing simple tasks such as eating, sitting up in a chair or writing.  Muscle cramping and stiffness also will appear within a few minutes of beginning to exercise. This can linger for days after the exercising. There may also be a delayed reaction of hours and the pain may begin while one is sleeping causing one to awaken.  The heart rate does not increase enough to meet the needs of the muscles during the activity. Depression is often seen in individuals with exercise intolerance. Not being able to do the things a person wants to do or should be able to do can create anxiety, irritability, bewilderment and hopelessness leading to depression. Standing up or walking across a room may be all that is necessary for an individual’s blood pressure to rise significantly. Cyanosis is a serious condition that indicates there is not enough oxygen in the blood. The individual may appear to look blue in the face and hands and needs immediate medical attention.

Exercise intolerance can be seen in the small muscle groups as well as the large muscle groups. Writing or other fine motor skills can be affected causing cramping, fatigue and spasms. Tachycardia (fast heart beats) can occur from increased breathing rate this during exercise or exertion and rapid breathing increases from fatigue of the diaphragm and chest wall. Vision may become blurry due to fatigue of the eye muscles. The oral muscles, those involving the mouth, may be affected making speech difficult and making chewing of harder or tougher foods a problem. 27, 28, 30, 31, 32


Diagnosis would be based on the symptoms above and the diagnosis of the root cause, which in this case is Periodic Paralysis.


For most individuals with Periodic Paralysis who have exercise intolerance, it is best to avoid physical activity and exertion because it can lead to muscle cell damage (muscle wasting), exhaustion and a condition called lactic acidosis, a form of metabolic acidosis (also discussed in this book). It also can be a trigger for attacks of paralysis. 35, 36

My Experience with Exercise Intolerance

My own symptoms of exercise intolerance began as having a problem keeping up with others in exercise classes, walking up inclines and stairs and later during and after physical therapy. I would get fatigued, out of breath and dizzy after only a few short minutes. I would develop terrible pain in my legs during the exercising or activity and would have to stop. The pain and fatigue would be worse the following day. This continued to gradually worsen until now it takes less and less activity to create the symptoms.

Now, I cannot walk more than a few steps at a time. I cannot sit up straight in a chair for very long to do a puzzle, sew or talk with friends.  I can no longer wheel myself in a wheelchair. I cannot talk on the phone for very long. Fine motor skills, like writing or sewing by hand, cause my hands and fingers to cramp. Any exertion or exercise causes my blood pressure to rise; I get short of breath, fatigued and will later go into an attack of paralysis.

A muscle biopsy revealed signs of muscle cell change or damage and replacement with fat or lipids. I have been diagnosed with metabolic acidosis and lactic acidosis, all related to the exercise intolerance from the progressive and permanent muscle weakness I experience due to the continued and unchecked (over the years before my diagnosis) shifting of potassium from Periodic Paralysis, which is a mineral metabolic disorder. “

Until later…

Wednesday, July 9, 2014

Types of Potassium

Hello All,

Today’s blog is about the different types of potassium. 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 and other have Hyperkalemic Periodic Paralysis so if we take potassium it causes us to go into 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. The following is from our book for those who do need to take it.

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. 62, 63, 64

It comes in many forms which include, salts, powders, liquid, and tablets. Some tablets may be released over time  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. 65

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 advisor. 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, 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. The businesses with quality supplements which we trust for our needs can be found on our website the Periodic Paralysis Network. 59

59. Periodic Paralysis Network. (March 2013). Periodic Paralysis. Retrieved from:

62. Wikipedia. (March 2013). Potassium bicarbonate. Retrieved from:

63. Wikipedia. (February 2013). Potassium citrate. Retrieved from:

64. Wikipedia. (March 2013).  Potassium chloride. Retrieved from:

65. Mayo Clinic. (November 2011).  Potassium Supplement (Oral Route, Parenteral Route). Retrieved from:

Saturday, July 5, 2014

Open Letter To Doctors by Guest Writer, Carolanne

Hello All:

Today’s blog has been written by one of our members, a mother, who is trying to get a diagnosis and proper treatment for her daughter who is suffering greatly with symptoms much like Periodic Paralysis. Her frustration is evident in this open letter to the doctors she will see in the future.

Many of us with PP have dealt with and are dealing with this frustration.

Thank you Carolanne for sharing with us.

Dear Unknown Doctor:

My daughter has been sick. We know she has been sick and we don't know what it is. This is what we want from you:

(1) Don't do what the other doctors have done. Don't look at their notes. If we agreed with what they said, we wouldn't be seeing you. Look at past lab results, but don't look at the opinions of others. We need someone who will take a fresh look at what is going on, and be confident enough to make their own decisions.

(2) You must care. Please don't tell us that you don't know and then discharge us from your care. Say instead, "I have no idea what this is, but I'll do some research." or even, "I have a colleague, Dr. B., he may know. I'm going to set you up with him/her."

(3) Respect us. We have been living with this a long time. We see things that you won't see in a 30-minute appointment. Look at the data we bring in. Don't brush it off. We are not stupid we brought it as proof of what is going on. Don't "not look at it" and then have the gall to say "it's psychological". We are concerned and we spend our days trying to find out what is going on with someone we love very much.

(4) Please think outside of the box. There are so many rare diseases, mitochondrial reactions, genetic mutations, and people. Yes, people. We are all different. Please be open to the fact that our symptoms may be slightly different as well. We all don't fit into a box, but we all need your knowledge and expertise. Some of us will need your detective skills, and others may need those skills you need when you are putting together a 5,000 piece puzzle.
(5) Most importantly, LISTEN. We are spending thousands upon thousands of dollars to help our loved one. This sickness/illness/disease/condition has taken over our life. Listen to what we are saying and if you cannot empathize, please sympathize.

Until later…

Saturday, June 21, 2014

Beware Of "Off-Label" Drugs

Hello All,

I posted this on our PPN Support, Education and Advocacy Group today. I wanted to share this information once again with those who have PP or anyone who has a family member with PP. It is an important message, which I have written about several times before.

We are a patient advocacy group as well as a support group and educational group. It is our duty to provide information to keep each of you informed, safe and to be the "best you can be." For that reason I am passing along this information once again.

It has come to our attention that someone we know with PP, who is not genetically diagnosed, was placed on the known medications typically prescribed for PP sometime back. This person has had no end of serious issues and complications connected to this. So, I wanted to pass this information along once again.

Some people do well on those medications and we are not telling anyone to stop taking them if that is the case. However, others do not do well and/or they may develop side effects from these drugs which can be harmful and can become life-threatening. If that is the case, there is more information here for you to consider. If you have been given a prescription for one of them, you may want to read the information here before you start it, so you will know what to expect or what to look for, in order to be safe.

Periodic Paralysis is a mineral metabolic disorder (ion channelopathy). There are NO drugs recommended/approved by the FDA for Periodic Paralysis. The ones typically used, that we know about are strictly "off-label" (made and used for other conditions).


"Q: Are there drug treatments for periodic paralysis or the myotonias (PMC)?"

"There are no FDA approved treatments for periodic paralysis or the myotonias. Any medications currently prescribed for these disorders are used "off-label". "Off-label" means the drug is approved to treat another condition/disease, but was not scrutinized under the quality control protection of the FDA's clinical trials process for treatment of myotonias or periodic paralysis".....

This is the complete blog: :

"Q: Are there drug treatments for periodic paralysis or the myotonias (PMC)?"

"There are no FDA approved treatments for periodic paralysis or the myotonias. Any medications currently prescribed for these disorders are used "off-label". "Off-label" means the drug is approved to treat another condition/disease, but was not scrutinized under the quality control protection of the FDA's clinical trials process for treatment of myotonias or periodic paralysis....."

While researching this I found out some interesting information about some forms of Hypokalemic Periodic Paralysis and the use of those drugs. Some forms do not respond to them and some cause paralysis and/or worse symptoms:

 A study from 2001 relates two different types in particular but I am sure more have been discovered by now: CACNL1A3=Hypokalemic Periodic Paralysis-1 and SCN4A=Hypokalemic Periodic Paralysis-2, each with several mutations...and of course there are the ones that have not been found yet.

When someone is diagnosed with Hypokalemic Periodic Paralysis, clinically, (based on their symptoms), one must be very careful. One form either does not respond to diamox (acetazolamide), causes more paralysis or causes serious symptoms. So, diamox should not automatically be given to people clinically diagnosed with Hypokalemic Periodic Paralysis or if it is, it should be used with extreme caution.

From the article:

 “In conclusion the present study demonstrates that genetic characterization of HypoPP patients is important to decipher the clinical and histopathological features of the disease, and to predict the response to therapy. We suggest that mutations in the SCN4A gene should be systematically sought in HypoPP patients suffering from paralytic attacks followed by myalgias or worsened by acetazolamide, and when muscle biopsies reveal the presence of tubular aggregates.”

About half of us do not have a genetic diagnosis and do do know what form of PP we actually have. If we are going to take these medications, we must be very careful and closely monitor our symptoms and the side effects.

For more information about this subject you may want to read in our files:

"Why we discourage discussion of diamox and · version 1"

"Cautionary Information about Acetazolamide and Diamox for Individuals With · version 1"

"Information on · version 1"

Or on the blog:

Again, we are not trying to tell anyone to stop taking any medications. If they are working and there are no side effects, then there are no problems. If, however, these meds may be causing side effects or if you are trying to decide whether to take them or not, hopefully this information can help you to make an informed decision.

Hugs to you all...

Tuesday, June 17, 2014

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

Hello All,

Calvin and I wrote and published the book living with Periodic Paralysis: The Mystery Unraveled, last year. I have written much about, but recently a member of our Periodic Paralysis Network Support, Education and Advocacy Group, Tammy Collins-Levi, wrote a wonderful review on after purchasing it and reading it. She discussed how it changed her life. We have decided, with her permission, to share it with you today.

Thank you so much Tammy for writing this and allowing us to share it with everyone!!

This Book Lead To My Genetic Diagnosis Of Anderson-Tawil Syndrome II

If you or someone you love is fighting the uphill battle of getting a diagnosis, this book is for you. I had been sick for years. I became seriously ill 4 years ago. So many opinions with out any educated knowledge followed. I cannot begin to tell how much was lost during the past years of having a rare illness. But Susan speaks my story perfectly. I had already been to Orlando to meet with many others that suffer from Periodic Paralysis and had my genetic DNA sent to Germany. It seemed like all the doctors kept putting me off with waiting on my results from Germany. As some of you might know this can take years and with my heart problems it could of cost me my life. I am 38, happily married, and a mom of four. This rare condition almost took my life many times. I was left drained and with brain fog that was hard to see through. I was searching for answers and others who had been told this is not real!

I bought Susan and Calvin’s book and was shocked that other people have suffered so badly. I was overjoyed to find someone that had taken time to tell the story with hopes of helping others heal! I realized it was time I pull it together and go through my records. I pulled all the facts. That is what matters to any other doctor and makes them stop in their tracks. I pulled all the labs, test, EKGs, EMGs, and left the doctors opinions in the dust where they belong!! “Hit them with the facts” Susan you hit that one right on the head. I had heard this from others, but with no true advice about how to do this. You guys walked me through it step by step. The organized thought process to getting through all the red tape and nailing down what is being missed is the best I have come across. And I am a fighter for what was lost. I have done countless hours of research and spent a ton of money traveling around the country to figure out what stole my health. This book is the best I have found to address it all.

I meet with my geneticist on June 15th and she took all my organized medical facts and gave me a 100% clinical diagnosis of ATS. She informed me my labs showed electrical heart dysfunction and I am scheduled to have a pacemaker and defibrillator in a few weeks. If I had given up she said I would of probably passed from sudden arrhythmic death syndrome. How sad that would of been for my big family that has fought right beside me to find answers.

To sum it up this book helped organize my foggy mind, lifted my spirits, and give me the drive to fight like Susan did to get a real diagnosis before it was too late. This book saved my life and opened up new doors to my future. My life is different, but at least I know what I am fighting now. That was a priceless gift that this book gave my family and I.

Read this book and follow the advice offered and it will lead you in the right direction. Because you have all been on a never ending roller coaster ride and it is time to get off. It is time to walk up to your fears and say it’s time to get this right this time. No more games. Your life is important! Remember it is your body that is failing and only you know how that feels. Don’t settle for a diagnosis that doesn’t fit or make sense.

Thanks Again Susan for standing up for us all!!!!!

Until later...

Saturday, June 14, 2014

Changing Lives Naturaly

Hello All,

It has been awhile since I have posted a new blog. Actually, it is because I have been doing so well and have been able to do so much more than I have in several years, that I have been catching up on lost time doing things I never thought I would do again.

I had been on a medication (mirapex) which I thought I could never get off of. I tried many times and my symptoms got worse each time I tried over the years and I thought it was really helping my restless leg syndrome. For my 2014 New Year's resolution, I decided I really needed to try to get off of it again. I really needed to know if it was causing the symptoms that continued to keep me weak, etc and unable to function. I tapered off of it for months and just lived with the awful effects of withdrawal. Once I stopped it completely, I still had some issues, but over time and with working on my diet and other little changes, I was suddenly better and had no more restless leg also!! The fog lifted, I no longer had the awful weakness and I have had no paralysis for three months!!!

I am ready to get back to work with my writing, but I still need to take it easy because I continue have exercise intolerance, blood pressure issues and heart arrhythmia issues. After all, I still do have Periodic Paralysis, but it is definitely under better control, all by natural means.

Today's blog is something I wrote awhile back on our Periodic Paralysis Support, Education and Advocacy Group. It is time again to post it on our board and on our blog. We make no apologies for our philosophy, which has changed and saved many lives. It is posted on our logo: "Changing Lives naturally":

Hello All,

Since we have had so many new members join in the past few weeks, we wanted to post this information again. Our group is a little different and unique compared to the other groups. Not everyone is aware of this when they join. We are a support group and an educational group and also an "advocacy" group. We are concerned with your safety and how you are being treated, by the medical professionals in your life.
Please read the following.....for your information.

"Since we have so many new members I wanted to review with everyone about what the Periodic Paralysis Network is all about. We have a forum with several different options for information and support. We have four discussion groups (support, genealogy/genetic, book discussion and medical professional) which are all private for obvious reasons. We have two pages....mostly for just reaching others who need to find our help and education. We have our original website with a great deal of information. And we have a blog which is open in order to reach everyone around the world (has a translator), including medical professionals. We also have written a book, "Living With Periodic Paralysis: The Mystery Unraveled." It has 444 pages of information, is fully indexed and and we use over 250 references. It took us three years to write.

This group is our support, education and advocacy group. We welcome everyone and anyone who has any form of Periodic Paralysis or who suspects they have it (also family members). We provide support to those who are diagnosed or attempting to get a diagnosis.

We are an educational group because we provide information based on research. We attempt to answer any and all questions with information we find/found through research. Many of the answers are also in our book and on our website and our blog. Some things are also found in the "Files" section of this page.
We are an advocacy group. We work toward the improvement of quality and safety in healthcare for everyone with Periodic Paralysis. We are a member of the Patient Advocate Directory!!! They are a world-wide network of individuals and independent organizations working toward the improvement of quality and safety in healthcare.

We are here to help you "be the best you can be". Many of us cannot tolerate the pharmaceuticals/drugs/medications which are typically prescribed and through research and experimentation, we have found natural ways to manage and ease the symptoms of Periodic Paralysis. We share them with you.

As advocates for you, we also pass along the information about the pharmaceuticals/drugs/medications which are typically prescribed for every form of Periodic Paralysis. We caution anyone on them or who is considering using them to be aware of the side effects and possible problems from them. We also caution everyone who has Periodic Paralysis to be very careful if you are taking any pharmaceuticals/drugs/medications, anesthetics for surgery and IVs.

Periodic Paralysis is a mineral metabolic disorder and must be treated as such.

Our focus is on educational resources and self-reliance. Our approach to treatment focuses on the self-monitoring of vitals and the management of symptoms through natural methods such as the elimination of triggers and awareness of proper nutrition and supplementation. This approach evolved from the inability of the medical community to provide appropriate medical diagnosis and treatment. We continue to do research and provide the latest information to our members."

Susan and Calvin

 Until later...