Compilation of Articles Written About Drugs and Periodic Paralysis

Hello All,

I have complied a list of all of the articles I have written or compiled related to the use of drugs, medications, pharmaceuticals, anesthesia and potassium in Periodic Paralysis. I hope this will be helpful to you.

Why We Need To Avoid Drugs/Medications/Pharmaceuticals:
http://livingwithperiodicparalysis.blogspot.com/2013/12/idiosyncratic-and-paradoxical-reactions.html

http://livingwithperiodicparalysis.blogspot.com/2013/11/pharmaceuticals-are-not-answer-for-some.html

Drugs As Triggers:
https://www.facebook.com/notes/periodic-paralysis-network-support-group/link-to-article-about-triggers-and-medications-that-cause-weakness-and-paralysis/757072264324880

https://www.facebook.com/notes/periodic-paralysis-network-support-group/medications-to-avoid-including-for-long-qt/827750237257082

http://livingwithperiodicparalysis.blogspot.com/2013/12/triggers-december-1-2013.html

Diamox/Acetazolamide:
http://livingwithperiodicparalysis.blogspot.com/2013/12/periodic-paralysis-and-metabolic.html

http://livingwithperiodicparalysis.blogspot.com/2014/02/some-forms-of-pp-worsened-by-diamox.html

http://livingwithperiodicparalysis.blogspot.com/2014/06/beware-of-off-label-drugs.html

IV’s:
http://livingwithperiodicparalysis.blogspot.com/2013/12/why-people-with-some-forms-of-periodic.html

Anesthesia:
http://livingwithperiodicparalysis.blogspot.com/2014/02/periodic-paralysis-and-anesthesia.html

Use Of Potassium:
http://livingwithperiodicparalysis.blogspot.com/2014/07/types-of-potassium.html

Until later...

Types of Potassium

Hello All,

Today’s blog is about the different types of potassium. 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 and other have Hyperkalemic Periodic Paralysis so if we take potassium it causes us to go into 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. The following is from our book for those who do need to take it.

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. ^{62, 63, 64}

It comes in many forms which include, salts, powders, liquid, and tablets. Some tablets may be released over time  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. ⁶⁵

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 advisor. 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, 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. The businesses with quality supplements which we trust for our needs can be found on our website the Periodic Paralysis Network. ⁵⁹

59. Periodic Paralysis Network. (March 2013). Periodic Paralysis. Retrieved from: http://www.periodicparalysisnetwork.com

62. Wikipedia. (March 2013). Potassium bicarbonate. Retrieved from:  http://en.wikipedia.org/wiki/Potassium_bicarbonate

63. Wikipedia. (February 2013). Potassium citrate. Retrieved from:  http://en.wikipedia.org/wiki/Potassium_citrate

64. Wikipedia. (March 2013).  Potassium chloride. Retrieved from:  http://en.wikipedia.org/wiki/Potassium_chloride

65. Mayo Clinic. (November 2011).  Potassium Supplement (Oral Route, Parenteral Route). Retrieved from:

http://www.mayoclinic.com/health/drug-information/DR602373

No Tourniquet Please!!!

Hello All,

I wanted to write about an important issue today. It was called to my attention recently that not every individual with Periodic Paralysis knows that using a tourniquet when having blood drawn can result in potassium levels which are higher than they really are. It is important to understand that improper use of a tourniquet and the clenching of the fist can result in false lab results for potassium levels. The pressure (too tight) and time (too long) of the tourniquet can raise the level of potassium as much as 10% to 20%. This difference can be important when making a decision about treatment or trying to get diagnosed. The following articles explain this problem.

"Pseudohyperkalemia is typically caused by hemolysis during
venipuncture (by either excessive vacuum of the blood draw or by a
collection needle that is of too fine a gauge); excessive tourniquet
time or fist clenching during phlebotomy (which presumably leads to
efflux of potassium from the muscle cells into the bloodstream);[4] or
by a delay in the processing of the blood specimen."
http://en.wikipedia.org/wiki/Hyperkalemia#Pseudohyperkalemia

"Pseudohyperkalemia Caused by Fist Clenching during Phlebotomy"
http://www.nejm.org/action/showImage?doi=10.1056/NEJM199005033221806&iid=f001
http://www.nejm.org/doi/full/10.1056/NEJM199005033221806
http://www.ncbi.nlm.nih.gov/pubmed/2325722
http://en.wikipedia.org/wiki/Hyperkalemia#Pseudohyperkalemia

"Excessive tourniquet time, too tight tourniquet or fist clenching
during phlebotomy (which presumably leads to efflux of potassium from
the muscle cells into the bloodstream) are other important cause of
fictitious hyperkalemia."

http://www.ijccm.org/article.asp?issn=0972-5229;year=2007;volume=11;issue=4;spage=215;epage=217;aulast=Sharma

But I guess we should ask first "When have you calibrated pressure
gauge of the tourniquet?" (unless the nurse tend to lose temper...)
http://www.tourniquets.org/use_care.php#calibrating_testing

It is imperative for one with Periodic Paralysis to know the above information whenever blood is drawn. Ask the technician or nurse to draw the blood without a tourniquet. Be sure to have this important information written and handy in case of an emergency or an ambulance must be called and you are unable to speak. I keep this information in a plastic folder along with everything I know is important and that the paramedics must know when coming to my aid in an emergency. I approach it as if I will have no one with me to explain my needs. I keep it near the door and take it with me when I leave home.

Until later…

More links:

http://www.questdiagnostics.com/dms/Documents/Physician-Newsletter/2011_fall.pdf
http://www.phlebotomy.com/pt-stat/stat0709.html

Isolated Diastolic Hypotension and High Pulse Pressure

  

Hello All,

For the past few days, I have been quite ill again with very odd blood pressure readings and in between exceptionally low readings especially the diastolic (lower number). I have had symptoms of severe weakness with pressure on my head, slight headache, dizziness, brain fog, unable to speak at times and arrhythmia. I am much worse standing or moving around.

My blood pressure is normally 90/60 at rest but does crazy things when I stand up or exert myself. The other evening I suddenly felt really weird; nauseous and dizzy just sitting in my recliner. I took my B/P and it was 143/32 with arrhythmia. My research into blood pressure readings with "above" normal systolic (top...above 120...normal=120-90) and a "normal or below" normal diastolic (bottom...less than 60...normal=80-60), led me to the discovery that it is called "isolated diastolic hypotension," which is a form of low blood pressure. So 143/32 is a classic reading for “isolated diastolic hypotension”.

It can be caused by:

"Usually it is due to dehydration and electrolyte deficiencies in young adults. Rarely, it is due to leaky aortic valves. Sometimes it is due to certain hormone deficiencies or anemia. You should see your doctor for lab tests and to see if you have leaky valve (murmur on exam) and if further evaluation with echocardiogram is needed."

https://www.healthtap.com/topics/isolated-diastolic-hypotension

So once again I find another oddity not in the literature that can happen to those of us with Periodic Paralysis..."isolated diastolic hypotension". One cause of this condition is “pulse pressure” (low or high potassium which can affect the other electrolytes) and another cause is dehydration. It would seem that we have found another way to recognize shifting potassium.

Besides "isolated diastolic hypotension," I had a large spread between the systolic and diastolic number. Subtracting one from the other, the spread is 111 points. That spread is called the “pulse pressure.” Normal pulse pressure is 40 to 75. At 111, my pulse pressure was high, an indication of high blood pressure.

http://articles.sun-sentinel.com/2010-06-22/health/fl-jjps-pressure-0623-20100622_1_blood-pressure-blood-loss-diastolic

Research indicates:

”Thus, many older patients can have both a high systolic and a low diastolic blood pressure. This condition is known as high pulse pressure. The heightened difference between diastolic and systolic blood pressure is associated with a higher risk of stroke than an elevation of either systolic or diastolic blood pressure alone. Unfortunately, nothing can be done to raise diastolic pressure that does not also raise systolic blood pressure.”

So I can conclude that my blood pressure readings indicated I probably had "isolated diastolic hypotension" with a high "pulse pressure." Because I had low and high blood pressure, I was not sure if I had high or low potassium levels. Using my potassium reader I discovered I had high potassium. Because low blood pressure usually indicates high potassium levels and high blood pressure usually indicates low potassium levels, it would be difficult to know without using a potassium reader.

Knowing I had high potassium helped me to know what to do to treat it. I ate something with some sugar and since I also may have been dehydrated, as suggested in the information I gathered, I increased my liquid intake. I felt better for a little while, but am still struggling. I may add some magnesium supplement back into my diet.

This is the trial and error that I walk, as do others with Periodic Paralysis, that fine line I call "the tightrope."

 
I also must realize that at my age and with these symptoms, this oddity in my blood pressure may be the cause of the two TIAs (small strokes) I have had in recent months and it may be there is nothing I can do about it since I cannot take any medications and even if I could, any that I would take to lower or higher it would be harmful by making my blood pressure even higher or lower.

I have included some good links with information about the above issues:

http://www.heart.org/HEARTORG/Conditions/HighBloodPressure/AboutHighBloodPressure/Understanding-Blood-Pressure-Readings_UCM_301764_Article.jsp

http://www.ncbi.nlm.nih.gov/pubmed/21947466?holding=palvhlib_fft

http://www.uab.edu/news/latest/item/1681-low-diastolic-blood-pressure-linked-to-higher-risk-of-heart-failure?tmpl=component&print=1

http://www.healthcentral.com/high-blood-pressure/c/58370/110775/pulse/

Until later…

Permanent Muscle Weakness in Periodic Paralysis...Continued

Hello All,

Yesterday, it came to my attention that some people are having trouble trying to share my blogs on Facebook. For some reason, these posts have been disappearing from their walls. I am sorry and disturbed that this is happening. I have no idea why or by whom they have been removed.

Please let me know if you have any more problems. I am writing these articles to get the word out about PP for all of us, for your families and friends to understand and maybe some medical professionals and doctors to read them and learn also.


Yesterday’s blog brought a few questions:

The first one is about Physical Therapy (PT). Some one asked, “Can PT help the permanent muscle weakness (PMW)?”  My first response was, ”No, PT typically makes it worse.”

The teacher in me made me realize that answer was not sufficient or totally correct. So, I searched through my data collection looking for an article I had saved about that topic.

 
I wrote another post:

”I should have said that for ‘most’ of us PT may not be a good idea. I know there are other members in our support group who do work out; weight-lift or exercise and I did during my earlier years. However, I have had to stop PT every time it was prescribed for me. The pain was excruciating and it caused more episodes and more weakness. There may, however, be things like warm water exercises, or massage and more that may be helpful. Each person is different and all you can do is talk to your knowledgeable medical professionals and try what you think may be helpful and work for you.

The following are a few articles, which may be helpful in making your own decision:

The first one is written by a physical therapist:

"In some neuromuscular diseases, such as the metabolic muscle disorders, strength building exercises such as weight training may lead to muscle deterioration. Muscle deterioration can also lead to kidney damage. Individuals with periodic paralysis may experience increased attacks of paralysis."

http://www.bellaonline.com/articles/art182120.asp


This one is about Periodic Paralysis, which is a mineral metabolic disorder. It is an important message about deterioration of muscle from weight training:

"In some neuromuscular diseases, such as the metabolic muscle disorders, strength building exercises such as weight training may lead to muscle deterioration. Muscle deterioration can also lead to kidney damage. Individuals with periodic paralysis may experience increased attacks of paralysis.

Individuals with any type of muscle disorder should avoid exercising to exhaustion. They should stop exercising right away and consult their physician if they experience muscle cramping or paralysis, or cola-colored urine."

http://www.bellaonline.com/articles/art182120.asp

The last article deals with potassium and exertion/exercise:

"Increased Need For Potassium”

Heavy labor, weightlifting, extended labor, excessive sweating, alcohol, with caffeine (diuretic) (e.g. coffee, tea, some sodas) increase the need for potassium. A drop in blood sugar strains adrenal glands and also causes potassium loss.

Many weight lifters buy protein powder to make protein shakes. All that protein is hard on the liver and kidneys. Your body can’t build an ounce of muscle without enough potassium."

http://actualcures.com/weight-loss-diet-important...

The second issue from yesterday’s blog about permanent muscle weakness is that I failed to mention that there is typically three forms in which Periodic Paralysis may manifest related to permanent muscle weakness. That is:

Clinical Diagnosis

“The two distinct forms of muscle involvement observed in hypokalemic periodic paralysis (HOKPP), paralytic episodes and fixed myopathy, may occur separately or together. The pure paralytic episodic form occurs most commonly; the combination of paralytic episodes and a slowly progressive myopathy is less common; the pure myopathic form without paralytic episodes is rare:

• Paralytic episodes. The primary symptom consists of attacks of reversible flaccid paralysis with a concomitant hypokalemia that usually leads to paraparesis or tetraparesis but spares the respiratory muscles.
• Myopathic form. The myopathic form results in slowly progressive, fixed muscle weakness that begins as exercise intolerance predominantly of the lower limbs; it usually does not lead to severe disability. This fixed weakness must be distinguished from the reversible weakness that exists between attacks in some affected individuals.”

”The myopathic form develops in approximately 25% of affected individuals and results in a progressive fixed muscle weakness that begins at variable ages as exercise intolerance predominantly in the lower limbs. It occurs independent of paralytic symptoms and may be the sole manifestation of HOKPP.”

http://www.ncbi.nlm.nih.gov/books/NBK1338/

The above article does not mention the third type which is combination of the two; episodes of intermittent muscle weakness or partial or full body paralysis and gradual permanent muscle weakness.

My suspicion is that paralysis may be going on in sleep unaware to the person in the myopathic form.

Until later…

What is Hypokalemic Periodic Paralysis?

Hello All,
 
As each day has passed since New Year's Eve, I have gained strength and am doing better, but there is still an underlying weakness and an "on-the-edge" feeling that is almost always present. I also have a "brain-fog" issue and that makes writing and other activities with a great deal of concentration, difficult at times. I may not write a blog every day due to this problem. I am now playing "catch-up," as I begin to feel a little better.

I have chosen to write about Hypokalemic Periodic Paralysis also know an Familial Hypokalemic Periodic Paralysis. I wrote about Hyperkalemic Periodic Paralysis several weeks ago and had such a large response, I decided I must give equal time to the opposite form.

What is Hypokalemic Periodic Paralysis?

Hypokalemic Periodic Paralysis is a form of Periodic Paralysis, a very rare, hereditary metabolic disorder also called a channelopathy. If an individual has Hypokalemic Periodic Paralysis they become partially or fully paralyzed intermittently. 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 drugs, which can be effective for treating the symptoms, are available for individuals with Hypokalemic Periodic Paralysis but they should be used with extreme caution due to serious side effects.

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

http://quest.mda.org/series/focus-periodic-paralysis/periodic-paralyses

http://www.med.nyu.edu/content?ChunkIID=96851

http://www.nlm.nih.gov/medlineplus/ency/article/000312.htm

Until later...