9 Common POTS Myths

There are a lot of common misconceptions about POTS. There are ones I get from doctors, nurses, family, friends, and even other POTS patients. Remember that most of our POTS symptoms are different and that the same thing doesn’t work for everyone!

1. POTS Is NOT Anxiety
I don’t care how much POTS looks like anxiety- it isn’t. The increased heart rate, palpitations, and shortness of breath in POTS are caused by the autonomic nervous system. Medicines for anxiety and medicines for POTS do not work the same and do not necessarily alleviate POTS symptoms.

Anxiety can happen as a result of POTS or alongside POTS but I cannot stress enough that they are not the same thing. Strange scary symptoms can make patients nervous and the life change of living with a chronic illness is enough to make anyone anxious, but the underlying condition is not caused by anxiety.

2. POTS Symptoms Disappear When You Lay Down
I have had multiple doctors ask why I don’t just lay down to fix my symptoms. Let’s get this straight- POTS symptoms are exacerbated by standing but do not disappear when I lay down.

Many people with POTS feel terrible laying down as well. Unfortunately, POTS symptoms can reach you at any angle. Just last week my tachycardia was 130 bpm while laying down and relaxing for four hours. The chest pain and brain fog did not go away the entire time. So while standing makes things worse, lying is not a magic cure-all for our symptoms.

I have talked to very few people who feel 100% better once horizontal but it is not the average POTS patient.

3. Exercise Will Cure POTS
Some people with POTS have had this experience and I am thrilled for them. However, for many of us exercise is not a cure-all. I hear on support groups POTS patients who have been helped with exercise be judgemental and condescending towards those who have not been helped. Additionally, friends and family can claim you aren’t trying hard enough if exercise does not cure you. Please stop people!

Exercise helps POTS but for people like me it is not a cure. I have tried swimming, biking, rowing, and walking daily for months at a time. Exercise helped my symptoms but my POTS is still severe and unrelenting.

Just because you are able to exercise does not mean you get to judge people who can’t (or are not having the same results. Associated conditions that happen together with POTS such as Ehler’s Danlos and neuropathy can make exercise extremely painful and difficult.

 

edsexercise.gif
Trying to work out with EDS is a lot like this.

 

4. Most People Grows Out Of POTS
I was diagnosed with POTS at 18 and being between a teen and adult made things complicated. Pediatricians claim that many people who get POTS in their teens outgrow POTS; that doesn’t happen as often in adults.

Every doctor I saw that first year after my diagnosis told me I would grow out of POTS. It is 7 years later and my POTS is worse than ever. I understand doctors wanting to give their patients hope but that hope kept me from coping with a major life change. Instead of coming to terms with having a chronic illness I only thought of POTS as temporary.

This negative experience is not unique to me. A lot of people who are diagnosed with POTS in their teens will never grow out of it. A lot of this has to do with associated conditions; for example, people with Ehler’s Danlos rarely grow out of POTS. Telling all teens POTS is temporary, when many cases are not, is not helping them cope with their illness.

5. POTS Is No Big Deal
POTS can be an annoyance or it can be severely debilitating. This variance is part of why POTS is so hard to understand. Often people who have heard of POTS have a friend mildly affected and cannot understand more severe cases.

“Claire never cancelled this much on me and she has POTS too. You obviously are just making excuses again.”

 

Don’t be confused by people with less severe cases; POTS is often far more than an inconvenience. Experts are clear. POTS can be serious and hugely lower patient’s quality of life.

flake
Somehow being too sick to go out makes me a flake and is grounds to yell at me. I did not choose this.

Comparisons in the diminished quality of life in POTS have been described as equal to congestive heart failure, chronic obstructive pulmonary disease, and end stage kidney failure patients on dialysis. Some people with POTS are absolutely bedridden and unable to care for themselves. About two-thirds of POTS patients cannot work full-time and 98% of POTS patients cannot socialize as much as they would like.

POTS can be a big deal.

6. POTS Has Nothing To Do With Pain
POTS is not commonly associated with pain, but often causes a lot of patients pain. Chest pain is exceptionally common with POTS and is sometimes severe (I have had POTS chest pain hurt as much as a pulmonary embolism). POTS is also associated with migraines, neuropathic pain, and joint pain.

Many conditions associated with POTS cause pain as well. Ehler’s Danlos causes an extraordinary amount of pain and autoimmune conditions may cause pain as well.

7. Lifestyle Changes Can Cure Everyone
There are some naive people who believe that no POTS is so severe that it needs medication. I recognize why lifestyle changes should be considered first. For many POTS cases more salt, water, and exercise are all that is needed to control symptoms. However, there are some people who still cannot function with these changes.

No matter how much I exercise, drink water, wear compression, tilt my bed, and eat salt I still faint without a beta blocker. I still do all those things but lifestyle changes alone aren’t always enough in so many cases.

8. Blood Pressure Changes Have To Be Involved For Diagnoses
The diagnostic criteria for POTS are about pulse, not blood pressure. While some changes in blood pressure may occur during a tilt table test or upon standing POTS is not the same as orthostatic hypotension. Hyperadrenergic POTS can affect blood pressure as well, but does not have to be present for diagnosis.

9. POTS is Not Rare
1-3 million Americans have POTS and about 1% of teens have POTS. It is more common than both ALS and Parkinson’s Disease, but awareness is a huge problem. As a result, it doesn’t seem like there are that many of us or that POTS is worth researching. Awareness will help fix this.

For how common POTS is there is some exceptionally bad information out there. As a result, people are getting the wrong ideas about POTS. Dealing with misconceptions constantly becomes frustrating. What misconception are you sick of correcting?

History of POTS

Postural Orthostatic Tachycardia Syndrome is a type of dysautonomia. POTS has just recently begun to be recognized within the medical community. Patients with POTS commonly go undiagnosed for a year or more. Some doctors don’t recognize POTS as a genuine condition and claim it “isn’t real”; even more doctors simply do not understand. POTS just recently gained its name so it is just beginning to show up in television and pop culture.

Names

In 1993 researchers led by Dr. Philip Low at the Mayo Clinic coined the term “Postural Orthostatic Tachycardia Syndrome”. POTS was previously referred to as Postural Tachycardia Syndrome in 1982 by Philip Low and Ronald Schondorf at Mayo Clinic.

During the American Civil War Jacob Mendes Da Costa described a condition which may have been what we now call POTS. Da Costa called the condition “irritable heart”. Because Da Costa was the first one to describe the condition it is also described as Da Costa’s Syndrome. Da Costa’s syndrome is unique in that there are profound symptoms, but physiological abnormalities are usually absent. Because of this description many people assume Da Costa was describing a form of anxiety, but some of his patients may have actually had POTS.

Da Costa’s syndrome is also called cardiac neurosis, chronic asthenia, primary neurasthenia, effort syndrome[2][3], and neurocirculatory asthenia[4]. Da Costa described the symptoms of “irritable heart” to include palpitations, shortness of breath, chest pain, and fatigue upon exertion [5]. POTS is commonly misdiagnosed as an anxiety disorder. I think it is entirely possible that this “exertion sickness” was, at least in some cases, indeed POTS.

I have recently heard POTS called Astronaut Syndrome. When astronauts return to gravity from a lower-gravity state they may experience POTS-like symptoms. This term has not gained traction. I have also heard POTS called Grinch Syndrome because in some cases POTS is due to deconditioning and the heart is too small. Thankfully, this term has also not gained traction because it is simply inaccurate for most POTS patients.

Popular Culture

POTS doesn’t have a huge place in popular culture. It has been mentioned in House, MD. In the episode The Choice, POTS is suggested as a possible condition. However, in the end the patient does not have POTS but rather Chiari Malformation. Chiari malformation is seen in a number of POTS patients. In House, the orthostatic element of POTS (which not all patients have) is the focus of discussion.[6]

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POTS has also been addressed in Mystery Diagnosis. Marissa Irwin was featured in an episode of Mystery Diagnosis. She has POTS, Ehler’s Danlos, and Arnold Chiari Malformation. Patients have expressed frustration with how Mystery Diagnosis frames these cases. While POTS and EDS get exposure, the show likes to wrap the story into a pretty bow. This ignores the fact that these are chronic incurable conditions. Marissa is now a model and has been on the cover of Seventeen and Bridal Guide.
MarissaIrwin2

Some news stories have also featured or mentioned POTS. These stories are far from satisfactory in their understanding of POTS. For example, POTS is mentioned in 2010 by ABC News[7]. This terrible article claims that POTS is “curable”. This is simply false; some people grow out of POTS or cure an underlying condition, but there is no known cure.

In 2011, the American Heart Association did an article on POTS that was picked up by some news channels [8]. Frankly, this article grossly oversimplifies a complex syndrome. It claims that most POTS patients have a heart “two sizes too small” and call POTS “Grinch Syndrome”. A small subset of POTS patients have the condition due to deconditioning. Some others with POTS get worse because of deconditioning as a result of their POTS. In this case their heart may be smaller than normal. However, this is not the case in many POTS patients.

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In 2013, the Huffington Post wrote an article addressing America’s Next Top Model contestant Alexandra Agro. [9] Alexandra Agro states that she has POTS and was too sick to compete. Alexandra Agro also expresses unhappiness with Huffington Post not understanding her condition and made a video to raise awareness[10].

This is a running list. If you find another mention of POTS in pop culture please message me and I will add it.

  1.  “Neurasthenia”Rare Disease Database. National Organization for Rare Disorders, Inc. 2005. Retrieved2008-05-28.
  2. Paul Wood, MD, PhD (1941-05-24). “Da Costa’s Syndrome (or Effort Syndrome). Lecture I”Lectures to the Royal College of Physicians of LondonBritish Medical Journal. pp. 1(4194): 767–772. Retrieved 2008-05-28.
  3. Cohen ME, White PD (November 1, 1951). “Life situations, emotions, and neurocirculatory asthenia (anxiety neurosis, neurasthenia, effort syndrome)”.Psychosomatic Medicine 13 (6): 335–57. PMID 14892184. Retrieved 2008-05-28.
  4.  Paul O (1987). “Da Costa’s syndrome or neurocirculatory asthenia”.British Heart Journal 58 (4): 306–15.doi:10.1136/hrt.58.4.306.PMC 1277260.PMID 3314950.
  5. Selian, Neuhoff (1917). “XX”.Clinical Cardiology. New York: MacMillan. p. 255.; cited on “Da Costa’s Syndrome”. vlib.us. Retrieved 2007-12-18.
  6. http://en.wikipedia.org/wiki/The_Choice_%28House%29
  7. http://abcnews.go.com/Health/teen-finds-cure-mystery-illness-mayo-clinic-mother/story?id=11142991&page=2
  8. http://newsroom.heart.org/news/1356
  9. http://www.huffingtonpost.com/2013/10/07/americas-next-top-model-contestant-too-sick-elimination-video_n_4055887.html
  10. https://www.youtube.com/watch?v=l8kqxvOY7M8

Medical Marijuana

Medical marijuana is a hugely controversial topic, but it doesn’t need to be! Much of the current research is biased towards finding the dangers of marijuana instead of looking at possible medical use. Researchers who have studied cannabis have found many uses for marijuana (in adults).

MRW no one on Imgur is anti-vaccine but we try to convince them that they're wrong anyway. - Imgur

Where is it Legal?

Recreational and medical use is legal in Alaska, Oregon, Washington, Colorado, and Washington DC. In these places you can get marijuana without a red card, or medical card. However, if you have a chronic illness I strongly recommend getting a medical card. You don’t have to pay as much in taxes and the people who work in medical clinics are even more helpful.

Medical marijuana is largely separated from the medical world. I have never even had it suggested for pain by a doctor. I had to seek it out information on medical marijuana on my own. Some medications have made it through trials and are prescribed, primarily by oncologists, for severe diseases such as cancer. If you are interested I recommend speaking to your medical doctor about it.

One reason medical marijuana is so separated from the medical community is because marijuana is still a scheduled 1 drug. This means it has been found that cannabis “has no medical use”, “high potential of abuse”, and “cannot be safely used under medical care”.

To give you a better idea of what this means, both meth and cocaine are Schedule II. That means these dangerous drugs have been determined to have medical use as well as being highly addictive. I think this is a huge misclassification and agree with John Gettman who pointed out, “Cannabis is a natural source of dronabinol (THC), the ingredient of Marinol, a Schedule III drug. There are no grounds to schedule cannabis in a more restrictive schedule than Marinol”. If we are making medicines from cannabis then how can we say it has no medical purpose?

Medical Marijuana - Imgur

 

Is it Safe?

Marijuana has no recorded incident of overdose. Not only does marijuana have fewer deaths than alcohol, but health costs for alcohol outweigh the costs for marijuana by eight times. Both alcohol and tobacco are legal but are considered far more dangerous than marijuana. A study was done on the link between marijuana and hospital visits. They found that marijuana did not increase the chance of going to the hospital.

Alcohol, and many other drugs, are neurodegenerative. This means drinking alcohol kills brain cells. Research suggests that marijuana may have the opposite effect.

To reach the lethal threshold of marijuana someone would have to consume 1500 pounds of marijuana in fifteen minutes. Therefore, marijuana users don’t have to be worried about overdose. That isn’t to say that all marijuana use is safe.

Possible side effects of marijuana use include dry mouth, paranoia, increased heart rate, tiredness, confusion, or memory problems. Because cannabis can raise your heart rate, I recommend being under care of a doctor if you have POTS and want to try marijuana. These side effects may be worse in people with mental illness.

There haven’t been many studies about medical marijuana and how it relates to driving safety. We do know that people should avoid consuming marijuana and operating any machinery. Driving accidents are a real problem with any drug usage and are potentially the most dangerous threat widespread marijuana usage holds.

As of now, evidence suggests marijuana as relatively safe for adults. However, when used regularly prior to turning 18 marijuana can cause problems. Research has shown that there is a drop in IQ associated with teen marijuana use. There have also been studies that suggest teen marijuana use may lead to memory problems.

hi, i'm dory - Imgur

Pain Management

Doctors are cracking down on drug seekers and those of us with chronic pain are taking the worst hit of all. It is true, many people abuse these drugs. Opiates have the potential for addiction and tolerance is a real problem. Despite these problems, researchers are taking their sweet time looking at marijuana as an alternative pain relief method. Instead of looking into a drug that has been proven beneficial (enough to make medical marijuana legal) politics is getting in the way of researching marijuana more and potentially helping many people.

Surprisingly, I have found that medical marijuana has less of a stigma than opiates (at least in Colorado). I have been to too many doctors with kidney stones only to have them tell me I’m drug seeking and turn me away with no relief in any form. The pain relief you get from marijuana is extremely helpful, but they won’t treat you like a criminal (unless you want to get into the whole federal crime issue). People who work at dispensaries are generally very caring and knowledgeable about their product. They have treated those of us with chronic illnesses with more kindness that most doctors have. They can make great recommendations as to tinctures, concentrates, edibles, and flower. Don’t worry if you don’t know what these words mean; they will be happy to explain them to you.

Cannabis has a lot less of a chance of addiction than opiates. There is a chance for addiction, but not due to physical dependency. Addiction occurs due to psychological dependence. More research needs to be done into the relationship between marijuana and addiction.

 

Medical Purpose

Medical marijuana comes in many forms. There are edibles, smoking, capsules, vaporizing, and now even juicing the plant. What works best medically depends on the type of symptoms or just personal preference. Different strains are better for different things. The two primary types of cannabis are Sativa and Indica. Sativa is more energizing while Indica is more relaxing. Indica is best used for sleep problems and pain. Sativa works best for depression and fatigue. Depending on the strain, both Indica and Sativa can stimulate appetite.

After a study on cannabis from the Institute of Health concluded that marijuana should not be used to treat any disease. However, the study concluded that marijuana can be valuable at controlling symptoms of these diseases. One such symptom is paresthesia. Marijuana is especially good for this “pins and needles” pain where opiates commonly fail. Marijuana also works as a muscle relaxer, and can help with multiple sclerosis, HIV, Tourette’s, and cancer.

While Marijuana may cause respiratory symptoms and side effects, the research that has been done indicates that smoking marijuana doesn’t cause lung cancer. In fact, the opposite is thought to be true. Research in its infancy suggests that marijuana may have cancer-fighting properties. While only anecdotal evidence in humans is available, this could have huge implications on marijuana’s scheduled status. Harvard researchers found that when mice with lung tumors were given cannabis cancer growth was cut in half. Nearly one in four of the mice were completely cured and the remaining saw a decrease in tumor size.

 

Cannabidiol (CBD)

It is possible to get marijuana’s health benefits without getting high. THC is psychoactive, but CBD (Cannabidiol) is not and has more medical uses. Cannabis with high CBD causes less memory impairment due to competition for the CB1 receptor. Strains with high CBD have significantly more medical value than the typical strains used for recreation. CBD is also completely legal in all 50 states without a medical license.

Despite the fact that marijuana may have negative effects on a child’s brain, some parents choose to give their severely ill children cannabis. Charlotte Figi, a young girl with Dravet syndrome (a severe seizure disorder), went from having hundreds of seizures a week to a single seizure a week. Charlotte used a strain of cannabis with high CBD content. There is now a similar strain named after her called Charlotte’s Web. Using strains that have a high amount of CBD and not THC may keep the negative memory and intelligent side effects at bay. Therefore, we may see research suggesting medical marijuana is useful to children and teens.

In addition to helping with seizures, CBD has also shown to have antimicrobial properties. One study found that cannabis may even help with acne. Studies have also found that cannabis may reduce the spread of HIV as well as decrease the risk of developing diabetes.

While cannabis may be dangerous in mental illness, CBD has potential use in mental illness as well. Cannabidiol (CBD) has been shown to work as well as traditional antipsychotics used in schizophrenics. Additionally, there are far fewer side effects in patients who were taking CBD than these antipsychotics. Cannabis also is helpful in anxiety and depression.

 

 

Any drug that has the potential to improve someone’s quality of life should certainly be researched more. Keeping marijuana as a schedule I drug is preventing us from seeing all the potential medical use marijuana has. While many of these studies are small and new, there is definitely hope that medical marijuana will be helpful to treating a variety of ailments.

 

Lifestyle Changes: Which ones are worth it?

A lot of my experience with POTS specialist has been telling me things I can’t do. So which ones (for me) actually are worth a try and which ones just lower quality of life for not much payoff? These are just what have been my personal experiences over the past 5 years.

Carbs and Sugar: Try it. One of our fellow POTSies, Ella (Deliciously Ella), changed her diet and saw a huge change in her symptoms. That is great but not everyone does. I have found that if I cut out most carbs and simple sugars I feel a bit better, but it really is just a bit. So try it. See if it is worth it and support another POTSie. It is worth it to mention that a lot of her recipes are not Gastroparesis friendly. If you have a broken stomach beware.

Stop Drinking Alcohol: Hell no! If I make sure to remain hydrated then I am going to drink. I was diagnosed with POTS when I was 19 and I have been drinking since I was 21. I love red wine and if I want to drink and be social the one time a week I can actually have a social life I am going to. I am in my young 20’s and POTS already feels like it has murdered my social life. I drink extra water, have extra salt, and say do it. I am not going to let POTS stomp out my entire social life. Just use moderation people. POTS + a hangover can set you back days.

Its true alcohol does kill people buutt.... - Imgur

Stop Singing: What? NO. I had a doctor tell me to stop singing. It is supposed to help. Um are we trying to get rid of any fun I could possibly have? I sing in the car and that’s not going to stop.

Working Out: HahaHaha. The fact that working out is supposed to help in a condition where we have exercise intolerance is the universe’s cosmic joke on us. For me personally this doesn’t go to well. I try and work out and end up passed out later that day and even worse the next day. It seems to be worth a try for most people but be careful if your POTS is severe.

Eat a Ton of Salt: Do it. I have at least half a dozen kidney stones a year. They think it is both genetic and from my salt intake but I keep having salt. Because as much as kidney stones are terrible increased salt consumption helps me so much on a day to day basis.

MRW someone threatens to call the cops because they don't have their ID and I won't sell them alcohol. - Imgur

Drink a lot of water: Try it. Don’t go and drown yourself because that is possible. However, if you can drink a lot of water and can keep it down then why wouldn’t you try this?

Raise the head of your bed: Why not? I have seen no benefit to this personally but raising the head of your bed is so easy it is kind of like why not try it?

Wear Compression Stockings: Why not? I wear these all the time during the winter. During the summer it becomes a tradeoff between how much warmer they will make me and how much they will help with blood pooling. So usually I wear them but if it is 90+ I am probably going to leave them at home.

Don’t stand a lot: Duh. My POTS is severe enough my body doesn’t leave me a choice in this one, but I think for a lot of people I is important to point out it helps.

Get 9 hours of sleep: DO IT. This helps my POTS almost as much as water and salt. It is completely worth it to make sleep a priority for you.

Duckling falling asleep - Imgur

Which ones do you feel like are worth it? Agree/ disagree?