A Message To Our Non-English Speaking Members

Hello All,

My blog today is for my friends and members from countries outside of the United States. Over the past year or two, I have been in contact with people who have various forms of Periodic Paralysis from many different countries including Mexico, Argentina, Ukraine, Turkey, Finland, Iraq, Pakistan, and many more. I have spent many hours translating back and forth but I have never been sure that my translations were correct. I have never been able to say what needed to be said in the ways it needed to be said. Much was lost in the translation.

I have felt helpless when I received messages and emails asking me for help or advice and I have not been able to provide the information or help that was needed. In some cases, I have been able to arrange for others who speak the language to provide some help, but not the type of help I would like to provide.

I have had two small strokes in the past few months and I have become more ill, much weaker and have little energy to do everything I want and need to do. So, I have had to eliminate some of the things I was doing. Translating is something I have had to stop for now. Please do not think I am ignoring you or have forgotten you. I created this blog partly to help with this problem. The blog translates easily into any language. My hope is that all of you in the other countries can now read the important information I needed to translate and pass on to you in order to help you.

Most of you ask for doctors who can diagnose and treat you. This is impossible for me because, even here in the United States, there are very few doctors who can or will help or understand Periodic Paralysis. Not even the specialist will help or understand it on a level that can help us. They are mostly working on research.

I have had one non-English speaking member tell me that until he read my blogs, he had no idea that others had the same symptoms he has and that those symptoms were a part of Periodic Paralysis. I hope that now, our non-English speaking members can know the important things they need to know, in order to understand more about Periodic Paralysis and treat their symptoms.

 
Avoiding our triggers and changing our diet are two of the most important we things we can do to stop our paralysis. Medications can help some people but not everyone can take the medications. Most doctors cannot help us, unless we educate them.

 
Please ask me questions or ask me to explain things you still do not understand. I am here to help.

 
Thank you for your support.

Until later…

Dysautonomia and Periodic Paralysis

Hello All,

I posted on our PPN Support Group a few days ago about experiencing symptoms of severe weakness with pressure on my head, slight headache, dizziness, brain fog, unable to speak at times and heart arrhythmia. This was accompanied by an odd blood pressure reading of both high and low blood pressure at the same time. I usually have very low blood pressure when sitting and then very high when I am standing, moving around or exerting myself in any way.

One of our members suggested that I might have some kind of dysautonomia or orthostatic intolerance. This is seen when blood pressure drops or heart rate spikes from being up right. It is a dysfunction of the autonomic nervous system.

Though not diagnosed with dysautonomia, I assume I have some form. For several years I have been unable to sit up straight for any length of time. I must be in a recliner and my power wheelchair is designed with a reclining seat for that very reason. I must have it partially reclining when in it, otherwise my blood pressure goes up and oxygen goes down and arrhythmia begins. I can only be on my feet or do anything to exert myself for a short while because of this. I am on oxygen 24/7.

Due to the form of PP I have, I can take no medications because most cause my blood pressure to drop. With fluctuating blood pressure and heart rate and long QT heart arrhythmia, medication is not an option. Getting a definite diagnosis would not help me in any way, just confirm what I already suspect.

I am in this condition because I did not know what I had for 62 years and was misdiagnosed and mistreated and given medications I did not need which obviously caused great damage, unfortunately.

It is our HOPE at The Periodic Paralysis Network, that much of this can be avoided for most of you!

Calvin and I created our website, this Support and Educational Group and wrote our book to share with everyone how to avoid becoming as bad as me.

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 such as the elimination of triggers and awareness of proper nutrition and supplementation. This approach evolved from the inability of the medical community to provide appropriate medical diagnosis and treatment. We continue to do research and provide the latest information to our members.

Due to our work, we have been recognized as a patient advocate organization. We are here to advocate for your rights and medical safety as well as providing the information needed to treat your symptoms.

We are now a member of AdvocateDirectory.org

"This list of links and websites is presented solely as a resource for patient advocates and other individuals who seek information on patient safety and quality."

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

http://www.advocatedirectory.org/advocate-directory

We are here to help you be the best you can be!!!!!!!

More information about Dysautonomia:

http://www.dysautonomiainternational.org/

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


Until later...

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…

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...

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…

Permanent Muscle Weakness in Periodic Paralysis

Hello All,

We have had quite an increase in people viewing our blog. Thank you all so much for your participation. Please feel free to make comments and ask questions. We are always working on ideas for blogs so please pass along any suggestions for subjects you would like to read about. Today's blog was suggested by a member of our support group. It took several days of research to put it together. We hope it will be informative and helpful to you.

Permanent Muscle Weakness in Periodic Paralysis

 

Many members of our Periodic Paralysis Network Support and Education Group discuss muscle weakness. It is very common to wake up in the morning unable to move, get out of bed or walk. As time passes, individuals are able to finally to move, drag themselves out of bed and walk with assistance, though they are very weak. As the day progresses, they either get a little better or remain in the weakened state. What most of them do not know or understand is, that they are in paralysis much of the night, most every night. Damage to the muscles is the result of this, thus creating gradual muscle weakness and over time Permanent Muscle Weakness (PMW) results.

I did some research on PMW related to Periodic Paralysis (PP) and discovered some interesting information. The damage done to the muscles is written about much less often than the episodes of partial or full paralysis in articles or studies about Periodic Paralysis. The information available, however, indicates that PMW is seen in all forms of PP, Hypokalemic Periodic Paralysis, Hyperkalemic Periodic Paralysis or Andersen-Tawil Syndrome. Progressive muscle damage is also seen in all forms and it is irreparable. It cannot be reversed http://mda.org/disease/inherited-and-endocrine-myopathies/periodic-paralysesirreperable.

In one study it was determined that some individuals who were not helped by or who were worsened by acetazolamide (the main drug used), responded well to dichlorophenamide another drug. 

http://www.ncbi.nlm.nih.gov/pubmed/6855804  

Acetazolamide is a drug that must be used with extreme caution. It can cause kidney stones, metabolic acidosis, low potassium levels, affects growth in children and has caused death.  The most important issue is that it can actually cause paralysis thus creating more permanent muscle weakness!
http://www.webmd.com/drugs/drug-6755-acetazolamide+oral.aspx?drugid=6755&drugname=acetazolamide+oral&pagenumber=6http://link.springer.com/article/10.1007%2FBF00311396#page-1

In another study it was concluded that Hypokalemic Periodic Paralysis is a myopathy (muscle disease, however, it is actually a mineral metabolic disorder, which affects the muscles) with permanent muscle weakness of late onset in all the patients. This study though older and only a few participants were used, indicated that most everyone with any form of Periodic Paralysis would develop permanent muscle weakness as they age.

http://www.ncbi.nlm.nih.gov/pubmed/2276049http://www.ncbi.nlm.nih.gov/pubmed/2276049

In the last study, there is correlation between PMW and abnormal muscle biopsies. This means that a muscle biopsy, completed for people with PP, may show abnormalities and damage in the muscle fibers namely changes in size and shape, vacuoles, splitting of the fibers, tubular aggreagates, increased glycogen (fat).

http://link.springer.com/article/10.1007%2FBF00311396#page-1

This overlooked subject is extremely important and needs to be addressed. Each paralytic episode causes more muscle damage so it is necessary to do everything possible to stop the episodes.

We know that avoiding the things that cause the episodes is the most important issue. So it is important to know what a person’s triggers are and avoid them. Other treatment may include following a pH balanced diet, using supplements, avoiding exerting oneself and more. Some individuals may use drugs, but they must be used with caution and as discussed earlier.

So the conclusions seem to be that all individuals with Periodic Paralysis will have Permanent Muscle Weakness. We can also conclude that acetazolamide (diamox) seems to make it worse...thus this could be a problem for younger people with PP who take acetazolamide and begin to develop PMW (as well as kidney stones and metabolic acidosis and growth issues with children), but other medications, namely dichlorophenamide, may help. There is a correlation between your PMW and abnormalities in your muscle (muscle fibers). In other words, it is likely that if you had a biopsy, abnormalities will show up.

That being said, the only drug known to possibly improve the symptoms of PP including possibly lessening the chances of PMW, dichlorophenamide which was widely accessible previously, is not registered anymore and only available for trials bring run by researchers.

http://onlinelibrary.wiley.com/doi/10.1002/mus.880060303/abstract

The following is the results of a study from 2008:

“Although the carbonic anhydrase inhibitors have been used in the treatment of the primary periodic paralyses (PPs), their efficacy has not been demonstrated in double-blind, placebo-controlled trials. Therefore, we tested the efficacy of dichlorphenamide (DCP; Daranide), a potent carbonic anhydrase inhibitor, in the treatment of episodic weakness in the primary PPs. We performed two multicenter, randomized, double-blind, placebo-controlled crossover trials, one involving 42 subjects with hypokalemic periodic paralysis (HypoPP) and the other involving 31 subjects with potassium-sensitive periodic paralysis (PSPP). In each trial, two 8-week treatment periods were separated by an active washout period of at least 9 weeks. The primary outcome variable in the HypoPP trial was the occurrence of an intolerable increase in attack severity or frequency (end point). The primary outcome variable in the PSPP trial was the number of attacks per week. In the HypoPP trial, there were 13 subjects who exhibited a preference (in terms of the end point) for either DCP or placebo, and 11 of these preferred DCP. In the PSPP trial, DCP significantly reduced attack rates relative to placebo. DCP also significantly reduced attack rates relative to placebo in the HypoPP subjects. We conclude that DCP is effective in the prevention of episodic weakness in both HypoPP and PSPP. 2008”

https://www.medify.com/insights/article/10632100/randomized-trials-of-dichlorphenamide-in-the-periodic-paralyses-working-group-on-periodic-paralysis


It seems odd to me that a drug, which might actually help someone who has Periodic Paralysis is now unavailable to them or is only available for a few people taking part in PP studies and research (as soon as the study is completed the drug is stopped) or those who have enough money to get it through questionable channels. So for some people with PP they are in a "Catch 22" with acetazolamide. They can take acetazolamide and increase the chances of developing PMW or of an increase in the progression of muscle weakness, kidney stones, metabolic acidosis and more as well as growth issues for children. However, they cannot get or take a drug, dichlorophenamide, which may actually help them.

I personally prefer and must use natural methods. I am unable to tolerate most drugs, including acetazolamide.

The following links provide more information for those interested in researching dichlorophenamide

http://onlinelibrary.wiley.com/doi/10.1002/1531-8249%28200001%2947:1%3C46::AID-ANA9%3E3.0.CO;2-H/abstract;jsessionid=1D6E6DF386359CD033D6FF4C39336422.f04t02

http://www.drugs.com/mtm/dichlorphenamide.html

http://www.drugbank.ca/drugs/DB01144

http://quest.mda.org/news/dichlorphenamide-being-tested-periodic-paralysis

tests now going on

http://www.webmd.com/drugs/drug-8770-Dichlorphenamide+Oral.aspx?drugid=8770&drugname=Dichlorphenamide+Oral&pagenumber=6

rare side effects metabolic acidosis

http://medical-dictionary.thefreedictionary.com/dichlorphenamide

prohibits use

http://www.gpo.gov/fdsys/pkg/FR-2007-08-06/pdf/E7-15230.pdf

not withdrawn for safety reasons

https://www.google.com/search?q=dichlorophenamide&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a#q=dichlorphenamide+why+discontinued+in+the+USA%3F&rls=org.mozilla:en-US:official

https://www.medify.com/insights/article/10632100/randomized-trials-of-dichlorphenamide-in-the-periodic-paralyses-working-group-on-periodic-paralysis

http://www.scribd.com/doc/2768678/Notice-Human-drugsDrug-products-withdrawn-from-sale-for-reasons-other-than-safety-or-effectiveness8212-Daranide-dichlorphenamide-tablets-50-m Wall Street Journal

http://medlibrary.org/lib/rx/meds/daranide/page/2/

http://www.onlinecanadianpharmacy.com/section/productgroup.aspx?DrugName=Daranide&Generic=no buy in Cananda

http://www.drugs.com/answers/where-can-i-buy-daranide-408510.html

https://www.federalregister.gov/articles/2007/08/06/E7-15230/determination-that-daranide-dichlorphenamide-tablets-50-milligrams-were-not-withdrawn-from-sale-for

http://www.muscular-dystrophy.org/research/clinical_trials/244/periodic%252Bparalysis (the studies)

 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...

The Effects Of Periodic Paralysis Cannot Be Minimized For Most Of Us

Hello All,

I have had to rest the past few days so I have not completed a new blog, but I do have five of them I am working on. This morning we needed to explain some things about Periodic Paralysis to someone who does not know much about it but needs to know because a family member has it.

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My first response is "Where do I start to explain PP to someone with no knowledge except for seeing a family member going thru hell trying to get relief for their symptoms?" These options may not be the best options, but anything is worth a try to stop the periods of paralysis and accompanying symptoms and the lingering effects of the episodes.

Each person with PP is individual from the next...some things are the same and some things are different, even in the same family. Some things work and some things do not. My daughter is only 40 but has been deemed disabled for seven years now, my symptoms and other family members symptoms did not get to that point until we were in our forties and we have all been deemed disabled since we were fifty and unable to work. Each of us is experiencing gradual, permanent muscle weakness. I am in a power wheelchair, the others use canes and scooters and other aides.

The effects of PP cannot be minimized for most of us. Much of the time when not in paralysis we are in a state of horrible fatigue and overwhelming weakness (abortive attacks). Our minds experience a brain fog, and the potassium shifting can cause depression, changes in personality, and many other long time issues like kidney stones and osteoporosis. The medications prescribed for Periodic Paralysis either do not work or make us worse. We cannot take other medications to treat our side effects or accompanying conditions. We try everything and anything to stop this. We research and study looking for answers. We join support groups seeking support, understanding and validation. We share our stories hoping others are going through what we are and hoping news of a new drug or a new idea or treatment to try.

Every once in awhile, we have a great day and almost feel normal. At those times we will push ourselves to play catch-up on our chores or hobbies and then go back into the debilitating symptoms again. Most of the time we do not know what made us have a good day or what made us worse again. This is merely existing and is a difficult way to live. PP is cruel to many of us.

We have to walk a fine line on managing our symptoms and what worked yesterday may not work today. We may need a wheelchair right now, but in an hour be able to walk across the house. This may cause us to look like we are faking or making it up or just being "lazy." Family, friends, co-workers, bosses and doctors uneducated about PP may not understand. It is confusing and frustrating for us too.

That being said, many of us can take the medications prescribed for Periodic Paralysis and do very well in life, at least early on. We can work, have a family, exercise and eat what we want...those people are very lucky.

Until later...

Periodic Paralysis and New Years Resolutions January 1, 2014

Hello All,


I hope you all got through last night and into this morning without any problems. Calvin and I never sit up until midnight anymore but rather choose to watch and celebrate as the ball drops in New York, three hours earlier.

Without any warning, mid-sentence in conversation with Calvin, about 2 hours before the ball was to drop, I went into full-body paralysis. I was barely coming out of it and could open my eyes just in time to see the ball drop. I cried because I was not able to hug Calvin or kiss him back at "our" midnight. He helped me to bed and I fell asleep. At midnight I woke up in full paralysis again and heard the fireworks going off nearby and in the distance.

I woke up this morning coming out of full paralysis, as usual....and am still very close to going back into it again.....I hope this is not all a preview of what lies ahead for my New Year. First Christmas morning and now New Years Eve.....

Time to review what I am doing or not doing that may be causing this...for each episode, I know that the culprit seems to be my activity....it is the exercise intolerance. I must not do anything that exerts myself in any way. It is so difficult...to feel good and then do things a normal person would do.....prepare a simple meal...prepare a salad, etc and then go into full-body paralysis.

My episode last night was different than usual. the muscles in my body, but mostly left lower leg, at intervals of about 60 seconds to two minutes, tightened up into painful cramps, then released a little before the next one. My leg did not release like the rest of my body and by the time I came out of it,  it was painfully contracted and twisted with my foot turning in. This morning my left leg and foot are in pain.

So after an increase in paralysis episodes and 2 TIA's in recent months, my New Years resolution must be to let Calvin do more and I must do less...I must also rest more and stop pushing myself...and I am going to review and tighten up my pH balanced diet.....

Thank you all for your continuing support and friendship.

Until later...