Serene Forest

Monday, November 18, 2013

Episodes of Paralysis Continued

Hello All,
Yesterday, I came out of my "abortive" attack and actually had a few hours of feeling well; “my” well; clear headed, everything had color again, ability to move more than my fingers, ability to speak without getting out of breath, less fatigue, looking forward to and discussing the future. It does not happen very often, anymore, but when it does I enjoy every second of it. Usually, I will over do and push myself to “catch up” on things long neglected, but I did not do that yesterday. However, just before going to bed, it hit me again. They fog and shades of gray returned. Most of the night I was in paralysis and having problems breathing. I am still having problems taking in deep breaths as I am typing.

The blog I wrote yesterday was about episodes of paralysis and today I wanted to add more information about what happens during an episode depending on the cause and potassium levels.
To review, yesterday, I explained that not everyone with Periodic Paralysis will experience full-body paralysis. In fact most episodes are bouts of muscle weakness. Many things, including some food, exercise, some medications and even sleep, trigger the attacks. During an episode serious arrhythmia or breathing problems may ensue. Death may actually occur from respiratory or cardiac arrest, so it is best to avoid having an attack by avoiding triggers. I added a narrative I wrote several years ago, describing such an event before I really knew what was happening.
In previous posts I described the known forms of Periodic Paralysis (PP). They are Hypokalemic Periodic Paralysis, Hyperkalemic Periodic Paralysis, Normokalemic Periodic Paralysis, and Andersen-Tawil Syndrome. (Thyrotoxic Periodic Paralysis is not included because it is a condition which develops suddenly related to a problem with the thyroid and can be treated and possibly cured with surgery).
Below is the description of each type with the Periodic Paralysis and symptoms, which can occur depending on the level of potassium. It must be noted here that each person’s level of “normal” potassium among individual’s with PP may vary from person to person. So these symptoms may develop at a different range of numbers depending on an individual basis.
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.
The symptoms typical of low potassium:
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 it 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.

(The highs and lows of potassium may be different for each individual)
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).
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.

The symptoms typical of high potassium:
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.

(The highs and lows of potassium may be different for each individual)
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, 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. 6, 23, 39, 41, 45
Normokalemic Periodic Paralysis (Normo PP): Paralysis results from shifting of Potassium within normal ranges. (This can occur very quickly and is impossible to detect. About 50% of paralytic episodes are the result of this type of potassium shifting.)

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.

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.

It is clear to understand from the information above that an “episode”, “event” or “attack” of Periodic Paralysis, may be as simple as an eyelid twitching or as complex as full-body paralysis, may have muscle weakness or just pins and needles, may include pain or numbness, may affect the heart or digestive system or include all of them and more. An event may look different each time for an individual, depending on the triggers and which levels of potassium he or she may be experiencing or how quickly the potassium shifted in normal ranges. Attacks may differ among individuals in the same family for the reasons above.  
The symptoms of an episode may aid in knowing whether an attack is from high or low potassium, when one does not have a potassium reader to measure potassium levels.

If you are a family member, friend, co-worker, care-giver, doctor, nurse, EMT, first responder, teacher, paramedic, social worker, therapist, researcher, or psychologist, it is my desire that you can understand what it is like to have a form of Periodic Paralysis and what one suffers from the effects of potassium shifting atypically. It can be very unpredictable in how and when it manifests and can be frightening, painful (some doctors still disagree and refuse to diagnose if pain is involved, but look at the evidence), and life-threatening. While someone is in full-body paralysis, seemingly looking asleep or unconscious, they hear everything going on around them and may be experiencing all of the above without being able to tell you. There can be much frustration, fear, panic and stress. Please talk to them and let them know what is happening as you are monitoring vitals. That can help the person to relax, which may help to end the episode sooner rather than later, because the effect of stress is a trigger.

(Documentation found in our book: "Living With Periodic Paralysis: The Mystery Unraveled")

Until later...



  1. Susan and Cal so happy that I get to be follower number !.. didn't notice that the other day.. I just re read your article on What is periodic paralysis?.. it is such a great article and explained in a way that it is easily understood which is not easy with these disoders.. Congratulations on the blog and for putting the information out there for others to see. .

  2. I have just read your blog .i have hyperkalemia periodic paralysis
    I get muscle tightening in my right shoulder its very painful n i get breathless at the same time very frightening .i also have partial paralysis in my legs mostly my arms sometimes the cramping toe curling n crunching its an awful condition to cope with

  3. Hello Lydia,

    Please consider joining our Periodic Paralysis Network Support Group. We have many members who also have Hyperkalemic PP. We have much to share that can be very helpful with managing your symptoms. We advocate for all natural ways to do this.