Periodic Paralysis patients are often referred to as “zebras” as are other patients, such as EDS (Ehlers Danlos Syndrome) patients too. Both health issues that are devastating are often dismissed by physicians and told it’s “all in your head”. Hypokalemic Periodic Paralysis (hypokalemic when episodes occur in association with low potassium blood levels or as hyperkalemic when episodes can be induced by elevated potassium). This was the kind I had experienced, although I’m sure there are other causes that contribute to this condition too, such as Thyrotoxic Periodic Paralysis (precipitated by heavy exercise, fasting, or high-carbohydrate meals). Both conditions affect the potassium levels in the bloodstream.
This video on hypokalemia (see link) explained here in more technical terms. The alternate condition, hyperkalemia is explained in this video.
These videos explain why certain drugs that had been prescribed for me were actually contraindicated. I had to insist on an electrophysiology cardiologist EKG test to finally be recognized as a “borderline LQTS” patient and make it part of my medical records. I still don’t trust doctors and the drugs they prescribe, I always check the drug on a database for patients with Sudden Cardiac Arrest and Long QT Syndrome called Credible Meds.
"When you hear hoofbeats behind you, don't expect to see a zebra."
Theodore Woodward, professor at the University of Maryland School of Medicine, who instructed his medical interns using this phrase in the 1940s.
Patients with POTS (Post Orthopedic Tachycardia Syndrome) and Mast Cell patients are also members of this “herd”. We are all dismissed by the medical system as “zebras” since we don’t fit their diagnostic criteria for the symptoms experienced. Tests come out normal and we are “dismissed” and inappropriately diagnosed as an anxiety disorder or prescribed anti-depressants.
10 Potassium Deficiency Symptoms Mostly Ignored
This casual treatment by the medical system has caused an enormous strain on relationships and broken up marriages because of the “treatment” received. So many patients are sent home to suffer with no support and then we wonder why they are also dealing with depression?
Hypokalemia Treatment Guidelines, Symptoms, Management
Fear
A temporary state of paralysis is frightening, it happened to me once after becoming violently ill after eating under cooked lobster at a restaurant on our anniversary one year. I had dehydrated more than any other patient the ER doctor had seen in her years of practicing medicine. I arrived just in time. Just before the IV fluids were administered I suddenly couldn’t move. I was stuck in the bathroom where I had gone to provide a urine sample. Thank goodness my husband was just outside the door and rescued me. He got me into the wheelchair and rolled me into the exam room where they immediately started the infusion of fluids. This restored the balance of electrolytes I had lost during the hours before arriving at the ER. Hours spent in agony on the bathroom floor at home until I cried weakly for my husband to take me to the hospital. I thought I was going to die that night.
This was one of many nights I spent paralyzed and so sick and wondering if I would see the light of day. Fortunately I lived to do the research and find some answers as to what causes it. Histamine (and mast cells) seem to be the underlying factor. See the article below.
PubMed article
Histamine Intolerance: The State of the Art
In 2011, the European Food Safety Authority (EFSA) issued a scientific report warning that the levels of biogenic amines found in foods marketed in European Union countries may still entail a consumer health risk [1]. Among them, histamine has the highest toxic potential, along with tyramine, and is therefore of great interest in terms of food safety. First described more than 60 years ago, the deleterious effects of excessive histamine ingestion were initially referred to as scombroid fish poisoning or scombrotoxicosis, as they were associated with the consumption of fish in this family, but the condition is now known as histamine intoxication or histamine poisoning. In recent years, another disorder associated with histamine intake, arising from an enzymatic deficiency, has been described. The inability of certain individuals to metabolize histamine in the intestine, resulting in sensitivity to normal or even low histamine levels in food, may help to explain some of the uncertainties historically associated with histamine intoxication.
During the last decade, histamine intolerance has gained social and scientific recognition, with a significant increase in the interest of researchers to investigate this disorder. This review aims to analyze the pathophysiological relevance of dietary histamine, giving special focus to the adverse effects derived from histamine intake and, in particular, to the state of the art concerning the etiology, diagnosis and treatment of histamine intolerance.
Near Death
During my stay in ICU after my bowel ruptured and I was septic, my potassium loss was so severe I was given 80 mEq via my jugular vein. I was monitored for cardiac issues along with my pacemaker/defibrillator too. After 2 weeks in ICU and another week in a “step down” room before I was discharged, my potassium levels had left me so weak and my muscles so atrophied that I had to learn to walk again. I started with a walker and once assisted to a standing position I could slowly walk the hospital halls. I was out taking a stroll as often as possible because THAT was my ticket home…walking. A few weeks later I advanced to a cane and eventually I was able to walk again unassisted which was a day of celebration.
The night my bowel ruptured my pacemaker/defibrillator fired five times, three of which I felt, to keep my heart in rhythm. My body was trying to deal with the sudden loss of potassium that I experienced with the gastrointestinal upset prior to the rupture. I thought for sure I would die that night, but God had a plan for me I guess. I’m still here.
I’ll share more about the plan I’ve been working on…more about that later. I promise.
P.S. I’m wearing my zebra shirt today in solidarity with other zebras out there.
Today’s feature photo by Hans Moerman on Unsplash