Reader-submitted: Thank you TLS; an Update from a Choleh

opinionNote: Since posting a Choleh’s letter on TLS about two weeks ago, two patients who suspected they have a similar condition managed to get in touch with the letter-writer.

“TLS has been instrumental in helping us connect with each other to help with research by sharing information to help find the appropriate doctors/ centers capable of diagnosing the condition and that are experienced with treating it,” the Choleh wrote.

Because of this, the author wished to publicize the actual condition in hopes of being able to possibly help others:

The condition is autonomic dysfunction. POTS postural orthostatic tachycardia syndrome is one of the 5 classes that are known under the umbrella as Dysautonmia. It has to do with the nervous system of the body that control the nerves that help the blood flow, blood pressure and ultimately the heart rate. The blood pools to much in a certain area- the dysfunction of nerves or blood cells. The brain says there is not enough blood and sends a message to the heart to suddenly race and/or the blood pressure to skyrocket to move the blood to the brain. Some people when they stand or lay down their blood pressure or pulse dangerously drops. Some people it skyrockets. Some people just eating or drinking causes too much blood to go to the digestive system triggering a sudden episode of tachycardia and dangerously low or high blood pressure. Some people pass out…Some people have severe headaches.. Most can’t handle heat. Must be cool all or most of the time. Food ingestion can also trigger. Bloating after shortly eating and/or increase of heart rate. Many people can not exercise as it may trigger episodes. Sudden excessive sweating or no sweating. Brain Fog. Sluggish. Many people develop this after a virus, car accident , surgery trauma of just over time. It.effects more.women then men. Children and Teenagers also can have POTS..

You need an experienced doctor/ medical center to know which medicines to use for specific group of conditions as well as the correct dosage as its very customized and not always by what is generally prescribed. Often a lower dose of medicine or medicines over a longer period of time is more acceptable and shows better results.

There are specific tests that can help in the diagnosis. Such as a Tilt Table test, Gastric Emptying test, Blood Tests for NorEpinephrine, Addison Disease, pheochromocytoma, electrolyte imbalance, lyme disease, celiac disease, gluten tolerance, and tests, blood pressure monitor, cardiac monitor and a host of other important tests. There are not many centers available and experienced in this condition.

Should anyone feel they have a significant amount of these symptoms contact the authoer directly via email [email protected] or via TLS. At least demand your internist send you to a reputable neurologist, cardiologist or electrophysiologists that must be highly experienced with POTS autonomic Dysfunction or best got to the few medical centers that are experienced and capable to diagnose and properly attempt to treat this condition such as Dr Blair Grubb Univ Of Toledo OH., Vanderbilt (TN)Mayo Clinic (MN),) . NOTE Most patients are misdiagnosed for up-to 5 years and told by their doctors and specialists to see a psychiatrist and take medications before they are correctly diagnosed and validated.

Please note, I failed to publicly thank Dr. Axel Pfluger formerly of Mayo Clinic, European trained and now offices in Monsey NY and NYC in believing in me when I first approached him of my suspicion of POTS, urging me to go to the Mayo Clinic and arranging all the appointments in advance as well as consulting the doctors during my stay at MAYO.

If chas vshalom you know of anyone like this let them look at dystonomia look up the symptoms and the various classes .

From DINET.ORG website.

Dysautonomia means dysregulation of the autonomic nervous system. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies.

Symptoms are wide ranging and can include problems with the regulation of heart rate, blood pressure, body temperature and perspiration. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness and cognitive impairment.

Autonomic dysfunction can occur as a secondary condition of another disease process, like diabetes, or as a primary disorder where the autonomic nervous system is the only system impacted. These conditions are often misdiagnosed.

Over one million Americans are impacted with a primary autonomic system disorder. The more common forms of these conditions include Postural Orthostatic Tachycardia Syndrome (POTS) / Orthostatic Intolerance (OI), Neurocardiogenic Syncope (NCS), Pure Autonomic Failure (PAF) and Multiple Systems Atrophy (MSA)

DINET provides information and personal stories on several types of dysautonomia. You may download our informational brochure HERE. MORE INFO CLICK LINK

People generally develop POTS after becoming sick with a virus, giving birth, or being exposed to great bodily stressors (i.e. surgery, trauma or chemotherapy). Some people have had POTS their entire lives. Teenagers sometimes develop the disorder during the years of rapid growth, and 75-80% of them can look forward to being asymptomatic when they reach adulthood (Grubb, Kanjwal & Kosinski, 2006).

The symptoms of POTS are life altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person (Grubb, 2002). It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms (Grubb, Kanjwal & Kosinski, 2006). Research shows that POTS patients’ quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease (Benrud-Larson, Dewar, Sandroni, Rummans, Haythornthwaite & Low, 2002) Twenty-five percent of people with POTS are disabled and unable to work (Goldstein, Robertson, Esler, Straus, & Eisenhofer, 2002). Most patients will have to make some lifestyle adjustments to cope with this disorder.

It was once estimated that nearly 500,000 Americans had POTS, which made standing up a challenge (Robertson, 1999). However, with research advances and growing physician education the number of people found to have POTS symptoms is steadily rising. It is now estimated that one out of every hundred teens has POTS (Fischer, 2007).

POTS patients tend to be between the ages of 15 and 50 (Grubb & McMann, 2001, p. 65). Women are 5 times more likely to develop POTS than men (Grubb & McMann, 2001, p. 65). POTS does run in some families. The onset can be sudden or gradual. The quantity and severity of symptoms varies from day to day.

In Eretz Yisroel and Europe they have a medicine for years that was just approved in the USA by the FDA on April 15, 2015 for people who cannot tolerate beta blockers and has been used to also treat POTS. 1.its called Corlanor® (ivabradine)‎

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  1. I want to thank the author for publishing this story as I am one of the people who benefited from it. A couple of years ago I was suddenly hit with symptoms of POTS including severe headaches, low blood pressure, shaking episodes, racing of the heart, etc. I was unable to exercise too much and when I did, it would make me weak for days. I cannot tolerate heat. My body always has to be very cold which makes it difficult to go away or go out to any place where I cannot control the temperature (stores, etc.). It is bad throughout the month but it is always worse up to a week before my cycle. I’ve been to numerous doctors, actually I tried out almost every doctor in Lakewood, and was told “you look ok, there’s nothing wrong” but I wasn’t ok inside. I’ve had many sleepness nights (insomnia is one of the symptoms) and when I do go to sleep, I have to sleep almost sitting up. I had to call Hatzalah numerous times. My life has been pretty much put on hold. Until BH this letter was written. I was able to put together that I had many of these symptoms and in just a week since the publishing I was able to find a doctor who works with many POTS patients and I received a diagnosis. I feel this was my Chanukah miracle. Please be aware that symptoms vary from day to day and from person to person. Some cases are extreme and some are mild. Some days are extreme and some have zero symptoms. BH there are medicines that can be taken and also other ways to control POTS including extra salt and increase in water intake. If you suspect you have a bigger issue than just “anxiety” as many doctors will tell you, be your own advocate, do research and find someone who will listen. I am thankful that I was able to finally figure this out and received a diagnosis at the perfect time.

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