The Digestive Tract and Periodic Paralysis

 

The Digestive Tract and Periodic Paralysis

We were asked in our Periodic Paralysis Network Support Group today if anyone with Periodic Paralysis (PP) has ongoing digestive problems. My answer is YES; I do have severe gastric/digestive issues, as do many of us in this group with Periodic Paralysis. It seems the PP can affect our digestive tract. We can have issues from acid reflux, constipation and gastritis to paralytic ileus* (malfunction of the muscles in the intestine) and the acidity issue can also be related to PP because we tend to have chronic metabolic acidosis of which acid reflux can be a symptom.

I have ended up in the ER/hospital twice in the past three years with digestive issues and am going through the cycle again right now. Over one year's time, my daughter was in the hospital 9 times with the longest stay 40 days and she lost 90 pounds during that year, dealing with paralytic ileus and Cyclic Vomiting Syndrome (CVS).

We control our acid reflux with a pH balanced diet which keeps our acidity levels in balance. Diet and managing our potassium/electrolyte levels is especially important for those with PP for many reasons, to include managing our digestive tract, from beginning to end.

*“Paralytic ileus is the occurrence of intestinal blockage in the absence of an actual physical obstruction. This type of blockage is caused by a malfunction in the nerves and muscles in the intestine that impairs digestive movement. Causes of paralytic ileus include electrolyte imbalances… "

https://www.healthgrades.com/right-care/digestive-health/paralytic-ileus#:~:text=Paralytic%20ileus%20is%20the%20occurrence,intestine%20that%20impairs%20digestive%20movement.

https://livingwithperiodicparalysis.blogspot.com/2013/12/periodic-paralysis-and-metabolic.html

Until later...

Metabolic Acidosis and pH Balance

Hello All, 

Yesterday I had a very rough day. I am, however, doing better today. I did end up in paralysis and after coming out of it I was very weak and well you know the rest of that story! I did discover that I was in metabolic acidosis and had very low potassium so treated it with my potassium bicarbonate and sodium bicarbonate.
 
For awhile, I have been lazy and not used my pH meter. It is a little difficult to use, especially when I am not feeling well and on the edge of paralysis. So I discovered that Calvin had ordered the strips quite awhile back and did not realize we had them. I accidentally found them the other day.

When I woke up yesterday after 9 hours of sleep, a very unusual thing for me, and I felt really strange. I took my vitals and used the pH testing strip. I almost fainted when it was bright yellow and at 5.5 or lower. I knew immediately what to do but I went into paralysis anyway. After coming out of it, I continued to take more potassium and bicarbonate through the day and ate nothing that had any acidity whatsoever. By bedtime I was back in a better pH range and it held through the night.

So, my advice to all of you is to get some of those strips and also monitor your pH balance. PP is a mineral metabolic disorder which makes us prone to metabolic acidosis. When trying to figure out our triggers, the pH balance must be considered.

That is why we recommend the pH balance diet. It makes a huge difference if I follow it faithfully. I went from four or five full-body, severe episodes, lasting several hours each, a day to one or two a month which are less severe and lasted a shorter time.

If I had not realized the pH balance issue yesterday, with the levels I was at, I could have died. This is a very important issue for all of us. 

This is a good link about the pH balanced diet:http://www.rense.com/1.mpicons/acidalka.htm

Thanks for your continued support.

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...

Periodic Paralysis and Metabolic Acidosis

Hello All,

 

I had a fairly good day yesterday as long as I did not get up. Once up on my feet, I got dizzy and weak. Otherwise, I stayed busy with writing, editing, analysis of survey data and research. I also took some time to make a grocery list in case I was well enough today to go shopping with Calvin.

 

Since I am feeling fairly well this morning, I think I will try to venture out with Calvin. We will go to our organic market to purchase our vegetables and other unprocessed foods for our pH balanced diet.

I have chosen, today, to write about the reason I follow a pH balanced diet; the issue with metabolic acidosis.

 
Periodic Paralysis and Metabolic Acidosis 

 

 

  (http://medipptx.blogspot.com/2010/09/metabolic-acidosis_1754.html)

Periodic Paralysis is a 4^th class mineral metabolic disorder. People with mineral metabolic disorders tend to have chronic metabolic acidosis. Metabolic acidosis is an excess of acidity in the fluids of the body. In chronic metabolic acidosis, osteoporosis and kidney stones may develop.

 

Metabolic acidosis is a pH imbalance (the balance between the acid and alkaline), in which the body accumulates an excess of acid in the body fluids and does not have enough bicarbonate to neutralize the effects of the acid effectively. An individual can develop metabolic acidosis, if the carbon dioxide levels are allowed to rise and remain in the body.

 

We know that metabolic acidosis affects the heart and breathing. It results in potassium shifting out of the cells and into the bloodstream creating hyperkalemia, too much potassium. The combination of metabolic acidosis and hyperkalemia is a serious condition and can be life threatening leading to shock and death. Metabolic acidosis may also occur in low potassium levels.

 

Some of the more common symptoms of metabolic acidosis are muscle weakness, bone and muscle pain, headache, chest pain, tachycardia, heart palpitations, abdominal pain, rapid breathing, shortness of breath, confusion, drowsiness, a lack of energy and paralysis for persons with Periodic Paralysis. If metabolic acidosis becomes severe it can lead to shock (a lack of an appropriate flow of blood in the body) or death. However, the symptoms of metabolic acidosis are sometimes not very obvious or specific, depending on the cause. It should be noted that in some individual’s metabolic acidosis could be mild and ongoing (chronic).

In chronic metabolic acidosis an individual’s bones and kidneys are affected. When potassium shifts in the body, calcium carbonate from the bone is released. This causes a loss of the bone crystals leading to osteoporosis. When the kidneys are affected, this can be seen by the formation of kidney stones.  

Normally our pH level should be 70% alkaline and 30% acidic. If we do not eat a balanced diet and eat more acidic foods, we are too acidic and we can develop metabolic acidosis a serious condition. Through research we found that those of us with PP may have chronic levels of metabolic acidosis. So a balanced pH diet is a very good plan for some of us.

The normal diet in the U.S. is very acidic with meat, fats, dairy, sugar, white flour, and with all the processed foods we eat. This makes many normal people acidic and they become ill with any number of symptoms and illnesses. So imagine what it does to us with Periodic Paralysis?  We develop, metabolic acidosis, which we are already prone to developing.

 One of the major drugs used for treating Periodic Paralysis is acetazolamide also sold under the name of diamox and keveyis.  It is a carbonic anhydrase inhibitor, which is a diuretic. It removes water through the kidneys. Interestingly, it is used to treat mild metabolic acidosis, however, it actually leads to more metabolic acidosis by speeding up the process. Many individuals taking this drug to treat their symptoms of Periodic Paralysis are unknowingly making themselves worse and causing more damage to their bodies. It also lowers potassium. Many people are also unaware that it is a sulpha-based drug and should not be taken if an allergy exists to sulfa drugs.

 
If one already has Periodic Paralysis and has chronic metabolic acidosis he or she can develop kidney stones and osteoporosis over time. If one already has Periodic Paralysis and has chronic metabolic acidosis and takes diamox, he or she can become more acidic and can acquire full-blown metabolic acidosis which causes more damage and kidney stones and accelerates osteoporosis, more illness, more paralysis from the stress on the body and lowering of potassium and may even cause death. (Please research this well as you make your choices about the drugs you are using. Many, many of us choose not to use them, they cause us serious side effects in the short and long term.)

So it is especially important for individuals with Periodic Paralysis to maintain that 70/30 balance and it can be done with a pH diet. We may eat some of the foods, which are more acidic, just remember to keep the 70/30 balance to avoid or lower metabolic acidosis.

http://www.lumrix.net/medical/diseases/metabolic_disorders.html
http://www.maimonidesmed.org/Main/AdamMultimediaEncyclopedia/Mineral-metabolism-disorders-1007271.aspx
http://en.wikipedia.org/wiki/Metabolism#Minerals_and_cofactors
http://www.encognitive.com/node/1181
https://sites.google.com/site/metaboliccare/metabolicdisorder
http://the-medical-dictionary.com/metabolic_disorder.htm
https://ufhealth.org/mineral-metabolism-disorders

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

http://www.drugs.com/cdi/acetazolamide.html
https://www.riverpharmacy.ca/faq/are-there-any-side-effects-to-acetazolamide-diamox-avva

http://www.medicinenet.com/acetazolamide-oral/page3.htm

http://www.rxlist.com/diamox-sequels-drug.htm

Until later…

Walking the Tightrope Using The Plan November 22, 1013

Hello All,

 

 
Several members have been having suffering with ups and downs of their symptoms and also develop new symptoms without knowing what if triggering it. The following is what I wrote this morning.

”I am so sorry you are going through this. I have to admit that I too, have been on the same roller coaster for quite awhile, however, in the past few days I made some important discoveries for myself, and maybe for others. This is what I have discovered:

I posted the following yesterday in response to a question about potassium gluconate. It is so simple but had a profound effect on me:

Differences in the three main types of potassium:

Potassium citrate (and potassium bicarbonate) is alkaline, potassium gluconate is neutral PH, potassium chloride is acidic.

Periodic Paralysis is a metabolic disorder and we can have issues with being out of balance metabolically. We can become acidic or alkalinic. I know that I have issues with chronic metabolic acidosis and lactic acidosis. I have been diagnosed with both and keep track using a pH meter. So, if you tend to be acidic (metabolic acidosis or lactic acidosis) potassium citrate (and bicarbonate) might be best. If you tend to be alkalinic (metabolic alkalosis) potassium chloride might be best. If you do not have acidosis or alkalosis than gluconate may be best..."

If we do not maintain that balance we become unsteady on that tightrope we must walk! We have to maintain that balance...it is a constant battle!

So realizing I was out-of-balance, over a period of several weeks, I stopped taking my potassium bicarbonate (and before that I was taking potassium citrate). I was still having issues so a few days ago, I stopped taking my magnesium citrate and calcium citrate and pro-biotics and my V-8 juice in the morning.

For as many days, I have not had the issues I was having...an over-all fogginess, depression, cranky, agitated, severe fatigue and muscle weakness and what I can only describe as a feeling of "uuuuuhhhhhhh"...what I have considered to be an "abortive attack".

My conclusion is this: In our book, Living With Periodic Paralysis:The Mystery Unraveled describe "walking the tightrope"...walking that fine line ...we must stay in perfect balance... and we do that by following the "Plan" or we have symptoms of all kinds depending on what is out of balance...So...I apparently, got into balance doing all I was doing, but by continuing things I no longer needed, I was making myself sick again with too much of it...so I did not need to continue with potassium bicarbonate routinely because by doing so I was becoming hyperkalemic...if I took more potassium thinking I needed it based on my symptoms.,. I was making it worse. I was also probably making myself too alkaline. I stopped it weeks ago but after doing fine for a few days I went downhill again.

After stopping the magnesium citrate and calcium citrate both alkalinic, probiotics and V-8, I have not had any of the usual symptoms, except for the day I went shopping with Calvin. That evening, I had extreme muscle weakness and shakiness. BUT...I did not have the other symptoms mentioned above, I was clear-headed and even-tempered and no "uuuuhhhh" feeling. (Proof of my exercise intolerance or exertion as a trigger. But also proof that exercise and exertion did not necessarily cause my other symptoms.)

My conclusions: I may need potassium at any given time depending on my symptoms, but not necessarily routinely. I may have needed magnesium and calcium for a while, but taking it routinely, may be making me worse. The V8 juice is probably more sodium and potassium than I need right now or it may be just one of them causing the issue. I will test it by introducing just one of them back into my routine at a time, until I feel those symptoms again. Then I will know which was the trigger.

The key for me is moderation in all to maintain that balance. Low salt, not no salt, low sugar, not no sugar (use my glucose meter), potassium if the potassium reader indicates I am low, no potassium bicarbonate unless I am acidic, no potassium chloride unless I am alkalinic (use my pH meter) and of course follow the pH balanced diet.

Will I still have bad days? Yes. Will I have more good days? Yes. Will I have to work at it? Absolutely. Will it be easy? No. Will it be worth it? Yes.

Until later...