Serene Forest

Tuesday, February 4, 2014

What is Periodic Paralysis?


Hello All,

I am re-posting this article in two parts. It was not actually posted on my blog but I have a link to it in another site. There may be issues with the link so I decided to post it again. This article contains the facts about Periodic Paralysis and the other article, "My Story" is the personal narrative of how I got diagnosed.
                                             What is Periodic Paralysis?





One of the neurologists who diagnosed me recently said, “Periodic Paralysis is a disease unlike any other. It is not a neuromuscular, mitochondrial or autoimmune disease nor is it a muscle myopathy. It is in a category all its own and needs to be treated in non-conventional ways.” He further stated, “Doctors need to keep an open mind and think ‘outside of the box’ when it comes to diagnosing and treating Periodic Paralysis.”


The following is an overview of the condition gleaned from years of research and my own experience.


Periodic Paralysis (PP) is an extremely rare, hereditary disease characterized by episodes of muscular weakness or paralysis, a total lack of muscle tone without the loss of sensation while remaining consciousness. It is passed from either the mother or the father to any of the children, male or female. It is an ion channelopathy, a disease involving dysfunction of an ion channel for potassium, sodium, chloride or calcium. Ion channels regulate ions as they flow in and out of the cells.


There are several known types:


Hypokalemic Periodic Paralysis (Hypo PP): 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.


Hyperkalemic Periodic Paralysis (Hyper PP): Paralysis results from problems with the way the body controls sodium and potassium levels in cells. It is associated with high levels of potassium (hyperkalemia) during paralytic episodes.


 
Normokalemic Periodic Paralysis (Normo PP): Paralysis results from the movement or shifting of potassium within ranges, which are normal (normokalemia).


Andersen-Tawil Syndrome (ATS): Paralysis results when the channel does not open properly; potassium cannot leave the cell. This disrupts the flow of potassium ions in skeletal and cardiac muscle. During paralytic episodes, ATS can be associated with low potassium, high potassium or shifts in the normal (normokalemia) ranges of potassium. Andersen-Tawil Syndrome is discussed in more detail later in this section.


Only about 50% of the above known types of Periodic Paralysis have identified genetic markers. This means they can be diagnosed by DNA testing. The remainders of the cases are diagnosed by the symptoms and characteristics of the patient. This is called being diagnosed clinically. Those who are diagnosed clinically have symptoms and characteristics identical to others who have known genetic codes. One who is diagnosed with ATS clinically is said to have ATS Type 2 to differentiate.


Although Hypo PP, Hyper PP, Normo PP and ATS are forms of periodic paralysis the mechanism, which creates the muscle weakness and paralysis, is different as described above and the symptoms before and accompanying the paralysis vary. Symptoms can range from simple weakness to total body paralysis with life-threatening heart arrhythmia and tachycardia, breathing problems and choking. Death can occur in some rare cases. The episodes may last from a few minutes to several hours or many days. The speed with which the potassium shifts may cause symptoms to occur suddenly and without warning or there may be a gradual progression into the weakness or paralysis.


Abortive attacks may also affect some individuals. Occasionally, the common symptoms may begin but the full attack or paralysis may not occur. The person is left with extreme weakness and other symptoms such as extreme fatigue. This may last for hours, days or weeks.


The following symptoms may accompany the paralytic attacks. Most are based on my own experiences and the experiences of others I have talked with. Some may cross over.


One who suffers with Hypokalemic Periodic Paralysis may experience a variety of symptoms in relationship to their hypokalemic paralytic attacks including but not limited to the following:
Paralysis, total
Muscle weakness
Muscle stiffness
Muscle aches
Muscle cramps
Pins and needles sensation
Pulse issues-fast heart beat
Breathing problems-barely breathing
Hypoventilation
Irritability
Severe thirst
Nausea
Vomiting
Constipation
Excessive urination
Irregular heartbeat
Sweating

Tiredness
Paralysis, partial

One who suffers with Hyperkalemic Periodic Paralysis may experience a variety of symptoms in relationship to their hyperkalemic paralytic attacks including but not limited to the following:
Paralysis, total
Paralysis, partial
Muscle weakness
Muscle cramps
Tightness in legs
Strange feeling in legs
Tingling sensations
Pulse issues - absent, slow, or weak
Heart palpitations
Irregular heartbeat
Breathing problems-fast breathing
Mild hyperventilation
Nausea
Feeling hot
Slurring words
Sleepiness
Muscle twitching

One who suffers with Normokalemic Periodic Paralysis may experience a variety of symptoms including those seen in both the hypokalemic and hyperkalemic paralytic attacks as listed above.


One who suffers with Andersen-Tawil Syndrome may experience a variety of symptoms in relationship to their ATS paralytic episodes including but not limited to any of the symptoms from above depending on whether the attack is hypokalemic, hyperkalemic or normokalemic. They also have long QT interval heartbeats, a life threatening arrhythmia, which is a marker for ATS. Ventricular arrhythmia is common as is fainting.


The periodic muscle weakness or paralysis is triggered by a wide variety of activities such as exercise or sleep; foods such as carbohydrates or meat; conditions such as heat or cold; medications such as antibiotics or muscle relaxers; compounds such as caffeine or salt or simply resting after exercise. Many of the triggers are the same for most people but some of the triggers can be unique to each person or the type of Periodic Paralysis.

It is important to discover one’s triggers because of the need to stop the episodes, if possible, in order to regain some quality of my live and to prevent further damage to the organs as the potassium shifts and depletes in my body. This damage can lead to permanent weakness and disability as well as tachycardia and serious arrhythmia, including long QT intervals, which can lead to cardiac arrest. Avoiding paralysis is absolutely necessary for me, due to these life-threatening conditions.

Every moment of my present life I must control my symptoms. The following plan was created after trial and error in my own quest for treatment and management. I had no doctor assisting me and gleaned as much as possible on the Internet and in discussion with other people who live with Periodic Paralysis and Andersen-Tawil Syndrome. Anyone with Periodic Paralysis may follow this plan to see promising results.

Discover triggers: Simple carbohydrates,
Complex carbohydrates,
Most meat,
Wheat,
Gluten,
Salt,
Sugar,
Caffeine,
Medications including over-the-counter medications,
Exercise,
Exertion,
Rest after exercise,
Sleep, all aspects: falling asleep, during sleep, waking up and napping.
Stress (good or bad),
Dehydration
Msg
Food in general
Large meals
Fatigue
Fasting
And ?  I still have not discovered all of my triggers. No matter how careful I am, I can still go into paralysis without knowing why.

Control symptoms:

Avoid triggers
Following a proper ph balanced diet, eating from the farm; not the factory
Take no medications including over-the-counter medications
Avoid stress
No exercise
No exertion
Get plenty of rest
Stay well hydrated
Constantly monitor vitals
Take potassium when needed (if low potassium) (If under 3.0 go the the hospital)
Take sugar or glucose tablets as needed (if high potassium) (If over 6.5 go to hospital)
24/7 oxygen

Monitor vitals:

I use several pieces of medical equipment for measuring my vitals. These items are necessary for my caregiver to monitor me while in paralysis or for me to know which direction my potassium shifts for proper treatment.
Cardy meter (potassium reader),
Finger pulse oximeter,
Blood sugar monitor,
Stethoscope,
Wrist blood pressure monitor,
Thermometer and a digital
pH balance reader
Litmus paper


Gather a team of medical professionals:

I have an MD as my primary care provider and a cardiologist. I no longer have a renal specialist or neurologist.


Continue to gather information:
I must educate myself, my family, my friends, my neighbors, my community, my doctors, my hospitals, my dentist, my optometrist and my local first responders about every aspect of my condition. Knowing and understanding this disease and syndrome eases my fears and the fears of those around me and assists me with proper management and treatment. Knowing others will be able to aid me during paralysis episodes is essential.

Join Periodic Paralysis social groups: Being part of a Periodic Paralysis community is vital. I have discovered I am not alone. I receive encouragement, support, sympathy and empathy. I gain information and knowledge from others who live with the same enemy daily. I ask questions and share ideas.


The above plan is followed constantly and diligently.  It is a constant “tightrope” I must balance, day-by-day, minute-by-minute; second-by-second. I cannot let up for even a minute or I can go into paralysis and the cycle begins anew.


Prognosis: Most individuals with Hypokalemic Periodic Paralysis are able to control the symptoms and paralytic attacks with one or two forms of potassium and avoiding the things that trigger them. Individuals with Hyperkalemic Periodic Paralysis symptoms and paralytic attacks can control their symptoms and paralytic attacks with a diet high in carbohydrates and sugar and by avoiding the triggers.


Controlling the symptoms and paralytic attacks in people with Andersen-Tawil Syndrome is much more difficult. This is due to the fact that these individuals suffer from paralysis due to potassium levels that can be low, high or in normal ranges. Taking potassium may make the symptoms worse. Also individuals with ATS are usually unable to take any forms of medication. Managing the heart issues by surgery is also a problem because anesthesia can trigger paralysis and deadly arrhythmia. For these individuals, natural methods are the best way to manage the symptoms.


For most people with Periodic Paralysis the weakness and paralysis are intermittent. There is a beginning and end and between the episodes the individual is normal. Some individuals, however, may experience only gradual muscle weakness. Others experience periods of paralysis and gradual, progressive, chronic weakness. For some individuals the weakness can linger or become permanent. Some people will become disabled and require the use of a power wheelchair. Some individuals may become terminal if the disease weakens the breathing muscles.


The Periodic Paralysis Network:

My husband and I have created and now manage the Periodic Paralysis Network. We are an organization with an online community of people who are affected by Periodic Paralysis. The Periodic Paralysis Network provides a hands-on approach to understanding the disease, getting a proper diagnosis, managing the symptoms, and assisting caregivers and family members. 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. We continue to do research and provide the latest information to our members. Everyone is welcome. Members will receive encouragement, support, sympathy, empathy and validation. Members will also gain information and knowledge about all aspects of Periodic Paralysis. Members   ask questions and share ideas. We are usually on in real time, answering questions and providing support as needed for our members.


We have also written and published the following 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" and "What Is Periodic Paralysis?: A Disease Like No Other."  If you wish to know more about Periodic Paralysis, you may visit the  
Periodic ParalysisNetwork.





Until later...

2 comments:

  1. What kind of medication do you take? I take potassium tablets, since I have hypoPP and therefore low potassium levels, and also this one kind of medicine that I don't really think helps. So I was wondering if there's any other medication I could try? Thanks!

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    Replies
    1. Hello,
      I am sorry I did not answer this in a timely manner....I just found this.
      I do not take any drugs or medications, nor do I supplement with potassium. I have Anderson-Tawil Syndrome and my potassium can shift into low or high (small range) or just in normal ranges and cause paralysis and or symptoms. So taking it when I do not need it sends me into episodes of hyperkalemia or taking more than a tiny amount at a time.

      I take no drugs due to the horrible side effects and heart arrhyhthmia (long QT and others). We do not recommend any drugs for anyone with PP due to the fact that PP is a mineral metabolic disorder and that creates unique issues for us...There is another Blog Article I wrote explaining this and I have written many more about why we do not recommend the drugs that some take for PP.....they have too many serious side effects (short term and long term) and are geared for only a few on the forms of PP. I nearly died from taking one of them.

      We advocate for using all natural methods for managing the symptoms. I have written more blogs about this issue.

      I would like to invite you to join our PPN Support and Education Group. All of these things (except using drugs) are discussed there.

      https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/

      Article about using drugs/meds:

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

      I hope this answer has been helpful......

      Susan

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