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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!!
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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.
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