Serene Forest

Wednesday, June 24, 2015

Identify And Eliminate The Triggers Of Periodic Paralysis: Part One

Hello All,

Nearly everyday, new members join our PPN Support, Education and Advocacy Group. Their most important concerns are about getting treatment to stop or manage their symptoms/paralysis and/or getting a diagnosis. I have already written articles about how to find a good doctor and how to get a diagnosis, which may take many years, but to this point have not written about how to identify and eliminate the triggers that set off our symptoms and paralysis.

As I have written previously, there is no magic drug or cure for Periodic Paralysis. There is a type of drug that only works for a few mutations and even then, there are and can be, serious side effects, long term side effects and most individuals continue to experience paralysis and symptoms. So despite having a diagnosis and possibly taking the drug, most individuals need to know how to manage their symptoms and episodes of paralysis, because most triggers continue to set these things into motion.

For those still waiting for a diagnosis and hoping for drugs/treatment from a “specialist” the diagnosis will probably not bring a successful treatment. So, while waiting for a diagnosis, or if one has a diagnosis and is on the off-label drug and still experiencing symptoms or if someone has a diagnosis but cannot tolerate the off-label drug; the best way to manage the symptoms and paralytic episodes to is identify the causes or triggers for those symptoms and episodes.

This is part one of a Blog Article about how to identify and eliminate triggers.

From our book: The Periodic Paralysis Guide and Workbook:

Identify And Eliminate Triggers

  • Record symptoms and possible causes
  • Monitor symptoms
  • Keep a journal

This Blog Article...will discuss the elements or experiences, which trigger or activate the potassium to shift causing the attacks of periodic paralysis and how to identify them. There are some common triggers among those with the different forms of Periodic Paralysis and there are some triggers, which are unique for each individual. Triggers can be certain medications, foods, activities, stress or even sleep. It is important to know one’s triggers in order to avoid having episodes or attacks of paralysis due to permanent damage, which may occur to organs in the body.

One of the most important things a person with Periodic Paralysis can do, no matter which type they have, is to discover what causes, starts or triggers our episodes of muscle weakness or paralysis. There are many triggers that set into motion the partial and total paralysis and other symptoms. It is important to discover these triggers because we need to stop the episodes or attacks, if possible, in order to regain the quality of our lives and to prevent the damage being done to our organs as the potassium shifts and depletes or increases in our bodies.

Potassium shifting can cause a myriad of conditions and the symptoms that accompany them, including permanent tightness of the calf muscles or muscle wasting of arm and leg muscles, restless leg syndrome or even osteoporosis. The breathing and swallowing muscles can weaken over time and be affected during attacks. If this happens it is an extremely serious and emergency situation. Dangerous arrhythmia of the heart can also occur when an individual is in an episode or attack. In the case of people with Andersen-Tawil Syndrome, the paralysis leads to tachycardia and serious arrhythmia, including long QT intervals, which can lead to cardiac arrest. Other complications can include respiratory arrest causing death or aspiration pneumonia after an attack, causing death. Though rare, these can occur with Hypokalemic Periodic Paralysis. Complications of Hyperkalemic Periodic Paralysis include bi-directional heart arrhythmia causing sudden death and permanent weakness of the muscles. Between attacks, the muscles usually return to normal or strengthen, but over time with repeated episodes of paralysis, progressive and permanent weakness of the muscles which can be severe is possible. This includes the heart and breathing muscles. This can lead to heart failure and respiratory failure, thus eventual death. Avoiding paralysis is absolutely necessary, due to these life-threatening effects.

The easiest way to decide what caused an episode or symptoms would be to look at anything new or different; a new type of bread, a new antibiotic, a new activity, a new shampoo, stressful event (good or bad), or a chilled or over heated room. Discovering our triggers requires a little bit of time to follow a simple plan. In a matter of a few days or weeks, it may be possible to draw some useful conclusions about the possible triggers of a paralytic event and the symptom, which can accompany them.

In the fields of medicine and education, it is said, “If you did not write it down, it did not happen.” This can be applied to our method for discovering our triggers. The first thing we must do is to write everything down. Creating a journal is a good way to make sure this is done. I have created a chart, which can be added to a journal to make the process easier (This will be added to part two of this article).

Several necessary components are included on this chart:

A 24-hour time frame
A section to write possible triggers
A section to write down symptoms and vitals one may be experiencing
A section to record the muscle weakness and paralysis
This section becomes a graph of the periods of weakness or paralysis

Once the information has been gathered for a few weeks, it will be easy to see trends or connections of a particular food, medication or activity to muscle weakness or paralysis.

The following are lists of the common possible symptoms of Periodic Paralysis one may experience as well as the paralysis and muscle weakness and the triggers, which may set them into motion.

Understanding and becoming familiar with the symptoms is another important part of completing the chart. As much information that can be added will be helpful. In this section anything may be included from “feeling well,” or “none,” to some of the known symptoms for hyperkalemia and hypokalemia in the following charts.

The following are at-a-glance lists of typical symptoms and triggers for the different forms of Periodic Paralysis and vitals needed to complete the charts.

The Symptoms Typical Of Low Potassium:

  • Episodic muscle weakness
  • Episodic partial paralysis
  • Episodic total paralysis
  • Episodic flaccid paralysis (limp muscles, without tone)
  • Muscle weakness after exercise
  • Muscle weakness
  • 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)
  • Irritability
  • Severe thirst
  • Abdominal bloating
  • Nausea
  • Vomiting
  • Constipation
  • Excessive urination
  • Sweating
  • Tachycardia
  • Irregular heartbeat
  • Palpitations
  • Dizziness
  • Fainting
  • Breathing problems (barely breathing)
  • Hypo-ventilation
  • Increase in blood pressure
  • Irritability

Vitals To Add To The Chart As Symptoms:

  • Potassium level
  • pH level (saliva)
  • pH level (urine)
  • Glucose (sugar) level
  • Temperature
  • Blood pressure
  • Heart rate
  • Arrhythmia
  • Oxygen

The Symptoms Typical Of High Potassium:

  • Episodic muscle weakness
  • Episodic partial paralysis
  • Episodic total paralysis
  • Muscle contraction or rigidity during an attack
  • Muscle weakness
  • Muscle cramps
  • Muscle stiffness
  • Fasciculation (muscle twitching)
  • Pins and needles sensation
  • Cramping pain
  • Reduced reflexes
  • Muscle contraction involving tongue
  • Slurring of words
  • Tightness in legs
  • Strange feeling in legs
  • Tingling sensations
  • Pulse issues  (absent, slow, or weak)
  • Irregular heart beat
  • Heart palpitations
  • Breathing problems (wheezing, shortness of breath, fast breathing)
  • Mild hyperventilation
  • Decrease in blood pressure 
  •  Nausea
  • Feeling hot
  • Sleepiness  

More Possible Symptoms For The Chart:
  • Headache
  • Chest pain
  • Numbness
  • Unable to walk
  • Agitation
  • Shallow breathing
  • Pain in calves
  • Cramps in legs
  • Restless legs
  • Burning in feet
  • Hyperventilation
  • Feeling cold
  • Clammy
  • Dizzy
  • Shaky
  • Unsteady
  • Rubbery legs
  • Hunger
  • Jerking
  • Awake
  • Confusion
  • Strange feeling in legs
  • Brain fog
  • Sleeplessness
  • Memory problem
  • Depression
  • Weakness
  • Constipation
  • Foot drop
  • Dry mouth
  • Choking
  • Angry

(The following are not "set in stone" and can cross over among the different forms of Periodic Paralysis. These are just as a general rule....)

The Common Triggers Of Hypokalemic Periodic Paralysis

The triggers usually responsible for causing potassium to shift in Hypokalemic Periodic Paralysis are:

  • Eating a large amount of carbohydrates in a meal
  • Eating a meal with too much salt
  • Stress (good or bad)
  • Vigorous exercise
  • Resting after exercise
  • After lengthy periods of inactivity (traveling in a car)
  • Cold
  • Infections
  • Epinephrine/adrenaline
  • Insulin
  • Pregnancy
  • Surgery
  • Anesthesia
  • Glucose (Dextrose) IV
  • Saline (Sodium) IV
  • Steroids

The Common Triggers Of Hyperkalemic Periodic Paralysis

The triggers usually responsible for causing potassium to shift in Hyperkalemic Periodic Paralysis are:

  • Ingesting too much potassium in food, supplements or medications
  • Stress (good or bad)
  • Rest after exercise
  • Fatigue
  • Fasting
  • Possibly low blood sugar 
  • Alcohol
  • Pregnancy
  • Contaminated air such as smoking
  • Weather changes
  • Cholinesterase inhibitors 
  • Depolarizing muscle relaxants

The Common Triggers Of Paramyotonia Congenita

The triggers usually responsible for causing potassium to shift in Paramyotonia Congenita are:

  • Exercise
  • Exertion
  • Repetitious movement
  • Cold
  • Sleeping in
  • Possibly all triggers for Hyperkalemic Periodic Paralysis

Other Triggers For Periodic Paralysis

Triggers can include:

Diet: Diet can be one of the biggest contributors to episodes of paralysis. The following are some of my offenders or those that have been reported to me or I have found in the research:
  • Simple carbohydrates: sugar, white flour and more
  • Complex carbohydrates: some grains, wheat, rye and more
  • Meat: mostly red meats
  • Salt
  • Caffeine
  • MSG
  • Alcohol
  • Large meals
  • Gluten
  • Processed  foods
  • Food dyes
  • Food additives 
  • Meat or dairy products with hormones, and antibiotics
  • Fruits and vegetables with pesticides
  • Drinking water with hormones, antibiotics, pesticides or traces of any drugs (most drinking water, even bottled water)

All aspects of sleep may set episodes into motion:
  • Falling asleep 
  •  During sleep
  • Waking up

  • Dehydration
  • Fasting
  • Sitting too long
  • Changes in the weather
  • Fatigue
  • Heat
  • Cold
  • Electromagnetic Force (EMF’s)
  • Menstrual cycle
  • Pregnancy
  • Surgery
  • Infections, viruses 
  • Immunizations, vaccinations
  • Sudden or strobing lights, sounds, movements (touch, sound or vision)
  • Chemicals (sensitivity)

Some individuals have no problem with exercise but others may not be able to tolerate any type of exercise or very little exercise. This is called “exercise intolerance.” Episodes may develop soon after or the next day.

Rest after exercise: may set an episode into motion.

Unknown: One can follow all the rules and still have episodes for unknown reasons.

Over-the-counter medications:
Most over the counter medications, can set muscle weakness or paralysis into motion for people with Periodic Paralysis. The following is a list of some known offenders.

  • Eye drops
  • Glycerin enemas
  • NSAID’s
  • Cough syrups 
Compounds or Chemicals:
If the following ingredients are in any products you use…you should stop using them until you are sure they are not causing symptoms:
  • Sodium Hydroxide 
  •  Edetate Disodium
  • Stearic Acid

They may be in any of the following:
Lotions, oils, hair dyes or colors, antiperspirants, enemas, suppositories, soaps, shampoos, shaving creams, foams, toothpastes, deodorants, beauty products, skincare products, cosmetic products, bath salts, emollients, ointments, creams, hair sprays, perfumes, colognes, powders, hair gels, oils, tonics, mousse

Many, many drugs can set muscle weakness or paralysis into motion for people with Periodic Paralysis.

If one must take a drug, it is better to begin with ¼ of a normal dose to make sure it will work for you.

  • Saline drips, glucose infusion: If an IV is needed, mannitol can be used(or diluted solutions in extreme cases) (excluding HyperKPP)
  • Oral or Intravenous Corticosteroids
  • Muscle relaxers
  • Beta blockers
  • Tranquilizers
  • Pain killers (analgesics)
  • Antihistamines (except HyperKPP)
  • Puffers for asthma
  • Antibiotics
  • Cough syrups
  • Eye drops to dilate eyes
  • Contrast dye for MRI’s
  • Lidocaine 
  •  Anesthetics
  • Epinephrine (Can sometimes help symptoms of Hyperkalemic Periodic Paralysis)
  • Adrenaline (Can sometimes help symptoms of Hyperkalemic Periodic Paralysis)

For more information about the medications or drugs which can cause muscle weakness, muscle paralysis, long QT interval hearts beats (ATS) and torsades de pointes (ATS), please go to:

Until later...

1 comment:

  1. Thank you Susan for this article! Excellent work.