Balance and Periodic Paralysis

Balance and Periodic Paralysis

Hello All,

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

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

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

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

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

magnesium (Mg++)

sodium (Na+)

chloride (Cl-)

calcium (Ca++)

bicarbonate (HCO3-)

phosphate (HPO4–)

Second, other things that need to be well balanced:

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

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

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

.

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

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

Vitamins: Any vitamin imbalance can create symptoms.

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

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

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

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

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

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

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

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

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

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

Until later.....

What is an Ion Channelopathy?

Hello All,

Periodic Paralysis is a channelopathy and channelopathies are considered a class four metabolic disorder. Periodic Paralysis is a fourth class mineral metabolic disorder. Today's blog is about ion channelopathies.


What is an Ion Channelopathy?

Periodic Paralysis is a rare condition like no other. It is called an ion channelopathy, which is a dysfunction of an ion channel. Ion channelopathies were first recognized in 1971 and Periodic Paralysis was one of the first to be discovered. ^{1, 2}

 Ion channels are like a microscopic tunnel in the cells of muscles. The tunnels are called muscle fibers. Ions, which are molecules or atoms, flow in and out of the muscle cells through membranes or gates. Each of the gates is shaped exactly for the correct ion or molecule to enter. The ions are made up of what we call minerals, electrolytes or proteins. Some of the common ions are potassium, sodium, magnesium, chloride and calcium. They are electrically charged and each has its own size or shape, so to speak. If the gates or membranes are faulty in size or shape, an inefficient or improper flow through the membranes can and does cause muscle weakness and paralysis because they regulate contraction and relaxation of the muscle.

Through research, I have discovered that channelopathies are classified as a class four metabolic disorder. Disorders of metabolism are usually inherited and are involved in  chemical and physical processing, which use and make energy in the body. These processes include: breathing, circulation of blood, food and nutrient digestion, elimination of waste through bowel and bladder and temperature regulation.

Unfortunately, ion channelopathies are not usually categorized nor listed in medical writing or studies as metabolic disorders. This poses a problem for recognition, diagnosis and treatment by physicians and other medical professionals. I have found and heard Periodic Paralysis, which is a channelopathy, referred to as, a neuromuscular disease (affecting muscles and/or nerves also known as myoneural), a muscular dystrophy (wasting of muscle and eventual early death), and a disease of the nervous system (nothing to do with the nervous system), therefore, none of these is correct. Periodic Paralysis is a metabolic disorder, a condition which is based in the faulty cellular level of how energy is produced in our bodies. ³

To clarify, even further, Periodic Paralysis is a channelopathy which is a mineral metabolic disorder. Metabolism disorders involving minerals are conditions in which there is either not enough or an overabundance of minerals in an individual’s blood. Minerals have many functions in metabolism and the functions of the human body. They are important in bone and muscle building and growth. Organs, cells and tissues need minerals in order to function properly. So, a dysfunction of minerals in the body affects many processes and functions. Potassium, the main mineral involved in Periodic Paralysis, is involved in making proteins from the amino acids and plays a role in carbohydrate metabolism, so a dysfunction involving it, can affect more than just muscles. ^{1, 2}

 

1. Wikipedia. (February 2013) Ion Channel. Retrieved from:  

http://en.wikipedia.org/wiki/Ion_channel

2. Wikipedia. (December 2012). Channelopathy. Retrieved from: 

http://en.wikipedia.org/wiki/Channelopathy

3. WikiDoc. (August 2012). Metabolic disorder. Retrieved from: 

http://www.wikidoc.org/index.php/Metabolic_disorder

More information:Oxford Journals. (2002). Ion Channel Diseases. Retrieved from:

 http://hmg.oxfordjournals.org/content/11/20/2435.full

Added 1/25/2017

***An Introduction to Metabolic Disorder (Mineral metabolic disorder= Channelopathy)

http://www.encognitive.com/node/1181

A fourth class, the channelopathies (some of which cause periodic paralysis and/or malignant hyperthermia) could be considered to be metabolic disorders as well, though they are not always classified as such. These disorders affect the ion channels in the cell and organelle membranes, resulting in improper or inefficient transfer of ions through the membranes.


***Mineral Metabolism Disorders
http://careers.maimonidesmed.org/Main/AdamMultimediaEncyclopedia/Mineral-metabolism-disorders-1007271.aspx

Definition

Mineral metabolism disorders are abnormal levels of minerals -- either too much or too little -- in the blood.
Minerals are very important for the human body. They have various roles in metabolism and body functions. They are essential for the proper function of cells, tissues, and organs.
Some minerals, such as iron, make up part of many proteins and enzymes in the body. Others, such as potassium, help to produce proteins from amino acids and are involved in carbohydrate metabolism. Minerals also play a role in the building of muscle and bone and are important for normal body growth.
Metabolism refers to all the physical and chemical processes in the body that create and use energy, such as:

• Breathing
• Circulating blood
• Digesting food and nutrients
• Eliminating waste through urine and feces
• Regulating temperature

Causes

Disorders of mineral metabolism are sometimes passed from parents to their children through genes. Other medical conditions, such as starvation, diarrhea, or alcoholism, can cause mineral metabolism problems.

Disorders

Minerals that play a large role in the body include:

• Calcium
• Magnesium
• Phosphorus
• Potassium
• Selenium
• Sodium

Disorders in which mineral metabolism problems often occur include:

• Disorders of phosphorus metabolism:
• Hypophosphatemia
• Osteomalacia
• Rickets
• Rhabdomyolysis
• Hyperparathyroidism
• Hypoparathyroidism
• Disorders of potassium metabolism:
• Bartter syndrome
• Periodic paralysis with hypokalemia***
• Hypokalemic periodic paralysis***
• Hyperaldosteronism - primary and secondary
• Cushing’s disease
• Proximal renal tubular acidosis
• Distal renal tubular acidosis
• Fanconi’s syndrome
• Addison’s disease
• Kidney disease
• Disorders of iron metabolism:
• Hemochromatosis
• Cirrhosis
• Disorders of copper metabolism:
• Wilson’s disease
• Menkes syndrome
• Disorders of calcium metabolism:
• Hyperparathyroidism
• Nephrocalcinosis
• Pseudohypoparathyroidism
• Hypercalcemia
• Osteoporosis
• Movement - unpredictable or jerky
• Kidney stones
• Milk-alkali syndrome
• Paget’s disease
• Multiple endocrine neoplasia (MEN 1)
• Osteomalacia
• Rickets
• Disorders of sodium metabolism:
• Dilutional hyponatremia (SIADH)
• Hypernatremia
• Disorders of magnesium metabolism:
• Hypomagnesemia
• Hypermagnesemia
• Disorders of selenium metabolism
• Selenium deficiency
• Selenium excess
  
  >>>>>>>>>>>>>>>>>>>>>>

Other Disorders Involving Metabolism Of Minerals











Public Health Service Publication No. 1693
https://books.google.com/books?id=icIaAAAAMAAJ&pg=PA153&lpg=PA153&dq=mineral+metabolism++disorders+periodic+paralysis&source=bl&ots=b-rjeyEFyj&sig=Dy_C8ZLRQGtzoqLoBRaxW1p9qQI&hl=en&sa=X&ved=0ahUKEwiY0Zy7j97RAhUQzWMKHbxFBDEQ6AEIUTAJ#v=onepage&q=mineral%20metabolism%20%20disorders%20periodic%20paralysis&f=false

Metabolic Disorder
http://www.wikidoc.org/index.php/Metabolic_disorder

Ion Channels list
http://www.nature.com/ncb/journal/v6/n11/fig_tab/ncb1104-1039_T1.html

PP IS A MINERAL METABOLIC DISORDER http://healthmedicinet.com/ency/article/007271.htm
Mineral metabolism disorders - Health Medicine Network healthmedicinet.com/ency/article/007271.htm

Until later...

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

Good Morning All!

Here on the Olympic Peninsula, we woke up to a winter wonderland!! It does not happen here very often, so it is a treat, especially a few days before Christmas. I think we can be assured of a White Christmas now!!! It is still snowing as I write, so I do not know how much we will get but we have a good two inches right now.


Yesterday, after my really good day on Wednesday, I had a bad afternoon and evening. Calvin made us a pot of beef vegetable soup!! Over the past five years, he has learned to cook as I have given him directions from my recliner. He has now graduated to creating his own dishes and even bakes cookies for us (sugar-free and gluten-free).


He keeps busy during the winter months with his own writing (about ready to publish his new book) and working on the finish work of our renovated home. He has done a beautiful job. We are very comfortable.


Today I will write about the strange effects resulting from medications to people with various forms of Periodic Paralysis.

 

Idiosyncratic Reaction To Drugs

 

 

 

The two most common issues with drugs or pharmaceuticals for individuals with Periodic Paralysis (and others) are a paradoxical reaction and an idiosyncratic reaction. These are both serious effects. If one has a paradoxical reaction to a medication it means that the opposite of what is supposed to happen will occur. For instance, if someone takes a sleeping pill and then stays awake all night, it is known as a paradoxical effect. This can be just an inconvenience or very serious depending on the medical issue and the reaction. If someone who is already experiencing high blood pressure, is prescribed a drug to lower blood pressure, but it increases the blood pressure, this can cause a stroke, other serious effects or even death.


If an individual develops tremors, metabolic acidosis and paralysis from taking an antibiotic; these would be considered as idiosyncratic effects; reactions or side effects, which would be totally unpredicted, unexpected and never seen before. These effects would not be listed as possible rare side effects. This is a serious problem because these idiosyncratic effects, also known as “type B reaction” can be harmful by causing damage or even death. The amount ingested has no bearing on it. The reactions may occur from the smallest amount possible after one dose and the reactions may occur right away or after a little passage of time, even after a few weeks or chronically after a period of time.


It is believed that the type B reaction is an immune-mediated toxicity. This means an idiosyncratic reaction is an immune system response, which causes the drug to be toxic or poisonous to the individual who ingested it, inhaled it or absorbed it through the skin and causes cellular damage. Experience and research indicate that very few treatments exist. One must stop taking the drug, repair the damage if possible and provide life support if needed.


It should be noted that there may be no reaction the first time but may happen after the second time it is prescribed or at any time, even if taken for many years with no problems. The unexpected reaction may also occur after discontinuing the drug many weeks previously. The reaction or side effect may not be the same each time the drug is introduced.


Research indicates idiosyncratic effects are related to metabolic, mitochondrial and inflammatory dysfunction rather than the immune system and that there might be a genetic link in many cases.


Why is this an issue for individuals with Periodic Paralysis? Periodic Paralysis is a mineral metabolic disorder. Paradoxical reactions and idiosyncratic reactions are related to metabolic dysfunction. Strange, odd and out-of-the-ordinary side effects and drugs creating the opposite effects are common characteristics of individuals with all forms of Periodic Paralysis, especially the form known as Andersen-Tawil Syndrome.


Many individuals with Periodic Paralysis have serious side effects from the drugs they are prescribed. Without knowing this and without a diagnosis, doctors will prescribe drugs to treat symptoms that appear to be neurological or for other issues. The patient will use the pharmaceuticals and develop new symptoms, over time. These symptoms begin to look like something else for which new medications are prescribed, and the cycle continues. Or if there is no diagnosis and a person is suspected of having a conversion disorder, once everything else is ruled out, psychotropic medications may be prescribed. These medications can become out of control and it is not uncommon to be on 5 or 10 or more drugs at one time. They are toxic to the body and are causing damage. Most of them are also triggers for the periods of paralysis, and each paralytic episode causes more damage to the body.

 

I am a victim of this cycle. I was misdiagnosed several times, given medications for which created new symptoms for which more drugs were prescribed. I was experiencing ataxia, dyskenesia, tremors, heart issues, blood pressure issues, anxiety, pain, passing out, muscle weakness and more and of course episodes of partial and full-body paralysis. At one point I was on 15 different drugs, of which I actually needed not one of them.


I finally had a huge seizure or stroke-like episode. I ended up in the hospital. I was given more medications causing hallucinations, among other things, and which left me in and out of consciousness. I was permanently left with muscle weakness, breathing issues and exercise intolerance. I could not take care of my own personal needs like toileting, bathing, dressing or eating. It took many months to be able to have strength enough to stand by myself and I had to learn to walk again with the aid of a walker and physical therapy. I have never recovered to the point I was before that episode. I now use a power wheelchair for any more than a few steps, am on oxygen therapy 24 hours a day, must refrain from any exercise or exertion, am stuck in a recliner all day and much more.


With a proper diagnosis and without all of the unnecessary drugs, which caused paradoxical and idiosyncratic reactions, I would be much better in all ways. The following is a partial list of some of the drugs I took and some of the obvious effects of each.

Acetazolamide/Diamox/Keveyis: Metabolic acidosis, unconsciousness, paralysis, and more
Metformin: Tremors and ataxia
Albuterol: Tremor, ataxia and paralysis episode
Diltiazem: Ataxia
Seroquel: Seizures, paralysis episodes
Flouxitine: Seizures, paralysis episodes
Cipro: Partial paralysis of legs and painful tight calves
Macrodantin: Partial paralysis of legs and painful tight calves
Septra: Ataxia, paralysis, metabolic acidosis
Ranitidine: Ataxia
Detrol LA: Ataxia
Reglan: Dyskenesia
Forteo: Ataxia
Atenolol: Low blood pressure, passing out
Psychotropic medications: Seizures
Narcotics: Unconsciousness, nausea due to
Pain Killers: Low blood pressure, passing out

(This does not include all of the drugs that cause long QT heartbeat
and any or all of them trigger episodes of full-body paralysis.)
 In conclusion, a paradoxical or idiosyncratic reaction is an immune system response to drugs due to genetic predisposition and metabolic dysfunction in individuals with Periodic Paralysis, a mineral metabolic disorder. This includes the medications specifically prescribed to treat Periodic Paralysis ( Acetazolamide/Diamox/Keveyis).
Precautions must be taken to avoid these effects. Stop the drugs (with the help of a doctor, very carefully) or do not start them at all. There are natural ways to control many of the symptoms of Periodic Paralysis, namely avoiding triggers and other common sense and natural methods.

http://en.wikipedia.org/wiki/Idiosyncratic_drug_reaction
http://en.wikipedia.org/wiki/Toxicology
http://phm.utoronto.ca/~uetrecht/Jack_lab/Welcome.html
http://www.ncbi.nlm.nih.gov/pubmed/20020273
http://www.aasld.org/dili/Documents/2012/2A-4_UetrechtN.pdf

Added 9-24-2020:
What are the Periodic Paralysis Triggers? AVOID AT ALL COST

https://periodicparalysisnetworkinc.com/wp-content/uploads/2020/08/What-Are-The-Periodic-Paralysis-Triggers-AVOID-AT-ALL-COST.pdf

Until later…

Periodic Paralysis and Metabolic Acidosis

Hello All,

 

I had a fairly good day yesterday as long as I did not get up. Once up on my feet, I got dizzy and weak. Otherwise, I stayed busy with writing, editing, analysis of survey data and research. I also took some time to make a grocery list in case I was well enough today to go shopping with Calvin.

 

Since I am feeling fairly well this morning, I think I will try to venture out with Calvin. We will go to our organic market to purchase our vegetables and other unprocessed foods for our pH balanced diet.

I have chosen, today, to write about the reason I follow a pH balanced diet; the issue with metabolic acidosis.

 
Periodic Paralysis and Metabolic Acidosis 

 

 

  (http://medipptx.blogspot.com/2010/09/metabolic-acidosis_1754.html)

Periodic Paralysis is a 4^th class mineral metabolic disorder. People with mineral metabolic disorders tend to have chronic metabolic acidosis. Metabolic acidosis is an excess of acidity in the fluids of the body. In chronic metabolic acidosis, osteoporosis and kidney stones may develop.

 

Metabolic acidosis is a pH imbalance (the balance between the acid and alkaline), in which the body accumulates an excess of acid in the body fluids and does not have enough bicarbonate to neutralize the effects of the acid effectively. An individual can develop metabolic acidosis, if the carbon dioxide levels are allowed to rise and remain in the body.

 

We know that metabolic acidosis affects the heart and breathing. It results in potassium shifting out of the cells and into the bloodstream creating hyperkalemia, too much potassium. The combination of metabolic acidosis and hyperkalemia is a serious condition and can be life threatening leading to shock and death. Metabolic acidosis may also occur in low potassium levels.

 

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, this can be seen by the formation of kidney stones.  

Normally our pH level should be 70% alkaline and 30% acidic. If we do not eat a balanced diet and eat more acidic foods, we are too acidic and we can develop metabolic acidosis a serious condition. Through research we found that those of us with PP may have chronic levels of metabolic acidosis. So a balanced pH diet is a very good plan for some of us.

The normal diet in the U.S. is very acidic with meat, fats, dairy, sugar, white flour, and with all the processed foods we eat. This makes many normal people acidic and they become ill with any number of symptoms and illnesses. So imagine what it does to us with Periodic Paralysis?  We develop, metabolic acidosis, which we are already prone to developing.

 One of the major drugs used for treating Periodic Paralysis is acetazolamide also sold under the name of diamox and keveyis.  It is a carbonic anhydrase inhibitor, which is a diuretic. It removes water through the kidneys. Interestingly, it is used to treat mild metabolic acidosis, however, it actually leads to more metabolic acidosis by speeding up the process. Many individuals taking this drug to treat their symptoms of Periodic Paralysis are unknowingly making themselves worse and causing more damage to their bodies. It also lowers potassium. Many people are also unaware that it is a sulpha-based drug and should not be taken if an allergy exists to sulfa drugs.

 
If one already has Periodic Paralysis and has chronic metabolic acidosis he or she can develop kidney stones and osteoporosis over time. If one already has Periodic Paralysis and has chronic metabolic acidosis and takes diamox, he or she can become more acidic and can acquire full-blown metabolic acidosis which causes more damage and kidney stones and accelerates osteoporosis, more illness, more paralysis from the stress on the body and lowering of potassium and may even cause death. (Please research this well as you make your choices about the drugs you are using. Many, many of us choose not to use them, they cause us serious side effects in the short and long term.)

So it is especially important for individuals with Periodic Paralysis to maintain that 70/30 balance and it can be done with a pH diet. We may eat some of the foods, which are more acidic, just remember to keep the 70/30 balance to avoid or lower metabolic acidosis.

http://www.lumrix.net/medical/diseases/metabolic_disorders.html
http://www.maimonidesmed.org/Main/AdamMultimediaEncyclopedia/Mineral-metabolism-disorders-1007271.aspx
http://en.wikipedia.org/wiki/Metabolism#Minerals_and_cofactors
http://www.encognitive.com/node/1181
https://sites.google.com/site/metaboliccare/metabolicdisorder
http://the-medical-dictionary.com/metabolic_disorder.htm
https://ufhealth.org/mineral-metabolism-disorders

http://en.wikipedia.org/wiki/Acetazolamide

http://www.drugs.com/cdi/acetazolamide.html
https://www.riverpharmacy.ca/faq/are-there-any-side-effects-to-acetazolamide-diamox-avva

http://www.medicinenet.com/acetazolamide-oral/page3.htm

http://www.rxlist.com/diamox-sequels-drug.htm

Until later…