What is Dysautonomia? – Dysautonomia Awareness Month

Now that I’ve talked about why Dysautonomia Awareness Month is so important, let’s get into what exactly this condition is…

Dysautonomia literally means a dysfunction of the autonomic nervous system. The autonomic nervous system controls all of the functions in your body that you do not have to think about, such as: heart rate, blood pressure, breathing, blinking, digestion, temperature regulation, etc. The autonomic nervous system (ANS) controls most of the systems in your body, so when it malfunctions it can do so in a large variety of very unpleasant ways.

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Dysautonomia is an umbrella term, which covers any malfunction of the ANS. There are some specified conditions that fit under the dysautonomia umbrella, where the ANS malfunctions in such a way as to cause semi-predictable circumstances/symptoms. That is to say, if you have symptoms XYZ then you will be diagnosed with condition A. However, some people with dysautonomia do not fit a specific set of symptoms and thus have an “undiagnosed dysautonomia” (or they get misdiagnosed).

As I mentioned in my kickoff post, dysautonomia is not rare! There are more than 70 million people living with some form of dysautonomia worldwide, which is more people than the entire population of the UK! (Actually, more than the UK and Ireland combined because they still don’t hit 70 million!)



Some Dysautonomia Types

The two most common forms of dysautonomia are postural orthostatic tachycardia syndrome (POTS) and neurocardiogenic syncope (NCS). (I will link each conditions’ page from Dysautonomia International at the end of the description.) To see a more complete list of different dysautonomia types, and to get more in depth with each one, please go to Dysautonomia International’s “Other Forms of Dysautonomia” page.

Postural Orthostatic Tachycardia Syndrome (POTS)

POTS is one of the most common forms of dysautonomia, with estimates saying that 1 out of every 100 teenagers will develop POTS in their lifetime. Including adults, that is an estimated one the three million Americans!

The diagnostic criteria for POTS is an increase in heart rate of 30 beats per minute (or more) within ten minutes of standing, or a heart rate over 120 beats per minute while standing. To determine the heart rate, a doctor will usually do a tilt table test, where the patient is strapped to a table and tilted to a standing position and their heart rate (and blood pressure) are monitored.

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While many patients with POTS experience orthostatic hypotension (low blood pressure upon standing) and may faint/pass out, neither of these things are necessary for a POTS a diagnosis. The condition literally just means that your heart rate gets inappropriately high when you are standing still. (People without POTS see little to no increase in heart rate when moving from laying down to standing.) In fact, some people with POTS can have no change in blood pressure or even high blood pressure upon standing! (High blood pressure upon standing is orthostatic hypertension.)

Depending on the severity of POTS, the quality of life has been likened to patients with COPD or kidney failure requiring dialysis.

Learn more: Postural Orthostatic Tachycardia Syndrome

(I also posted a good video from Dysautonomia International last year: watch here.)

Neurocardiogenic Syncope (NCS)

Syncope is the medical term for fainting / passing out – it means a “temporary loss of conciousness” (from Google).

Neurocardiogenic syncope may also be referred to as neurally mediated syncope (NMS), which is the most recent medical term for the condition, or neurally mediated hypotension (NMH). These three condition names are all referring to the same condition.

falling-2705600_1280In NCS, the person with the condition stands, experiences bradycardia and/or hypotension, then either experiences pre-syncope or full syncope. Pre-syncope is similar to the type of lightheaded-ness you experience if you stand up way to fast – except people with dysautonomia usually pass out if they do not sit or lay down quickly upon experiencing it. The hypotension is usually caused by blood pooling in the extremities – usually the legs and feet – and not circulating back up to the heart and brain.

NCS can range in severity from one to two fainting episodes (full syncope) in a lifetime, to several episodes in one day. The more severe cases can cause serious long-term problems for an individual, especially if they are hitting their head or breaking bones when they faint.

Learn more: Neurocardiogenic Syncope

Multiple System Atrophy (MSA)

Thankfully, MSA is considered to be a rare disorder, with only about 350,000 patients worldwide. I say thankfully, because this condition is fatal.

hospital-2301041_1920MSA occurs in adults age 40 and over, and kills the majority of those with the condition within 5-10 years of diagnosis. Almost everyone with the condition will be bedridden within two years of diagnosis.

Symptoms of MSA can be similar to Parkinson’s, but the condition causes nerve damage that is more widespread than the damage caused in Parkinson’s. In fact, MSA and Parkinson’s are two out of three types of primary autonomic failure, with the third being pure autonomic failure (PAF). In MSA, the nerve damage spreads throughout the body, causing a loss of control/function in all of the major systems of the body.

Learn more: Multiple System Atrophy



Thankfully, the majority of dysautonomia types are not fatal, at least not by themselves. However, this does not mean they do not cause a dramatic change in the person’s lifestyle. Imagine having knowing that every other time you stood up, you might faint; how often would you be standing up? If standing still literally made you feel like you ran a marathon, what would you do in your day? (If you ran a marathon daily, would you be able to do anything else?)

Even when a condition is not fatal, it can dramatically impact life and cause dramatic changes in the way you are forced to live your life. This is why it’s so important that we work together to find cures for these conditions!

I am one of 70 million

Donate to help find a cure: here.

Information for this article comes from Dysautonomia International! They are a fantastic source for information about dysautonomia!!!!

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World Rare Disease Day 2017: Infographic

Today is World Rare Disease Day! Please help start the conversation about rare diseases and conditions. So many people deal with rare conditions on a daily basis, but many must struggle for years before getting the proper diagnosis. Once diagnosed, it can then become a major challenge to find treatments and support! Wear denim today to show that you #CareAboutRare and let’s get the conversation started!

You can learn more about my personal rare diseases in my first WRDD post!

Blood Test Results (Part 1): Numbers, but No Doctor Visit Yet

Today, I noticed that my thorough blood testing results were posted to my patient portal. It did say that it was entered by my doctor (if I am understanding their notation properly), so I’m assuming he has actually looked at them. However, I suppose a nurse or medical assistant could also be adding them on to previously existing notes that have his name on them.

Blood Work

Image: Pixabay

The results I’m about to talk about are just an observation from the report, and have not actually been interpreted by my doctor.

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What is POTS? A Short Video by Dysautonomia International


What is POTS?

  • POTS is an acronym. POTS = Postural Orthostatic Tachycardia Syndrome
  • A type of dysautonomia
    • Dysautonomia = dysfunction of the autonomic nervous system
  • Characterized by a rise in heart rate by 30 beats per minute (or more) within ten minutes of standing
    • or a standing heart rate of 120bpm or more
  • Blood pressure can either increase, decrease, or stay the same
  • A collection of symptoms that can impact every part of your body
  • A life altering condition
    • quality of life analogous to congestive heart failure and COPD
  • Worth fighting!

Video from Dysautonomia International‘s Facebook Page

Supplements Carry Risks Too

Don’t get me wrong, I am not just blindly wanting you to follow “Big Pharma” down the rabbit hole of taking more drugs and needing drugs to counteract the side effects of those drugs. Actually, I am all for all sorts of different combinations of lifestyles. If you love taking pharmaceuticals, then go take your pharmaceuticals and I’m so happy that they make you feel better! If you love taking supplements, then please go take your supplements and enjoy your life! If you love combining the two, then go do that too and enjoy feeling better! Woot for feeling better and managing our symptoms the best way we know how!!!

Anyway. Now that that is over, here we go. The point of the post 😛

Some people don’t realize that supplements can carry just as many risks as pharmaceuticals can. In fact, I would argue that, because of the state of “common knowledge” they are more dangerous. Why do I say that? Simply because people read an “all natural” label and are willing to pop it into their mouth without learning anything else about it… leading to potentially deadly consequences.

Wait, did I just say deadly?

Yes, yes I did. Continue reading

Nausea and Dysautonomia

Today, Dysautonomia International shared an article to their Facebook  about nausea and vomiting, and how the two don’t always go hand in hand and how they tied to the nervous system. The text that accompanied D.I.’s post points out that nausea is a common symptom for dysautonomia patients.

As many of you know, I have been suffering with chronic nausea for years. Lately, it’s been so bad that, at times, I struggle to eat. That’s actually part of why my GI decided to do the colonoscopy. As of my last appointment, he didn’t believe I had primary gastroparesis, but he did say I definitely have what is called “delayed gastric emptying” which is caused by my whole system running slow so it tells my stomach to stop working. Very similar, but different causes. He is thinking he might do more testing though, later, just to be sure.

I am wondering if the reason my nausea is so bad is because it has multiple causes?

Anyway, I found the article extremely interesting and really wanted to share:

Nausea and Vomiting: Not Always in Sync by Pharmacy Times

Summary of A Pilot Study Using AVS for Insomnia in Adults and Chronic Pain Patients

Here is my paper. I had to write a summary of the article that I read. At the bottom is the reference, which includes all of the information for the article if you are interested in finding it for yourself.


Summary of A Pilot Study of Audio-Visual Stimulation as a Self-Care Treatment for Insomnia in Adults with Insomnia in Chronic Pain

Chronic pain and sleep disturbances are comorbid conditions, meaning they are often diagnosed in the same patient. It is estimated that one in three Americans suffers from chronic pain, and as many as 88% of those suffering from chronic pain also suffer from some sort of regular sleep disturbance (Tang, Vitiello, Perlis, Mao, & Riegel, 2014); that equates to about 78 million American adults suffering from chronic pain, with about 68 million also suffering from sleep difficulties (Howden & Meyer, 2011). These statistics show a shockingly high level of comorbidity, and a need for a solution. It has also been suggested that the relationship between pain and sleep may be bidirectional, meaning that increased sleep disturbances increases pain levels and increased pain levels increases sleep disturbances. Sleep disturbances have also been linked to other physical and psychiatric problems, which have also been shown to cause chronic pain problems, suggesting that treatment for chronic pain should focus on sleep disturbances.

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Soon I’ll Have Research to Share

The paper I’m writing for psych isn’t a traditional research paper. Instead of a research paper, we had to find a short article related to psychology and then summarize it in plain English (I think it’s so we can have more practice in reading and understanding scientific articles). I chose an article that is related to insomnia and chronic pain. Once I get my paper turned in, I’ll share it with you guys because I find it very interesting.

Here’s my paper: Summary of A Pilot Study of Audio-Visual Stimulation as a Self-Care Treatment for Insomnia in Adults with Insomnia in Chronic Pain

I Need Some Research Help – Possible New Muscular Symptom

Today was my Reformer for Recovery Pilates class. We started by doing a few gentle squats. When I say a few, I mean three or four. Gentle means a very shallow squat, just as far as is comfortable, and no added weight at all. I did one just fine. Then every single other one had my quadriceps (thigh muscles) burning. We weren’t holding them, we were just dipping down and straightening up. The muscles were only burning when I was in the squat position. I was barely squatting. As soon as I’d stand up, the burning would stop. The burn is EXTREMELY intense, and makes me want to collapse; pushing through the pain is almost impossible.

light squat

This photo shows me squatting (I took it just for this post) about the same I did in class. I may be a little lower than I was in class, actually. And yes, getting this photo burned really badly again, but I am currently on 1/2 a Tramadol and a full metaxalone so it wasn’t as intense. As you can see, these aren’t shouldn’t be very taxing squats.

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New-ish Diagnoses

These diagnoses aren’t new, actually, but I just found out about them. These two new-ish diagnoses are joint hypermobility syndrome (I will often shorten it to JHS) and inappropriate sinus tachycardia (IST).

Joint hypermobility syndrome, which I wrote a little about in the Writing 101 assignment Why Do I Write?. I have always been very flexible, but for some reason having a name makes things make more sense. Dr Spencer thinks it is possible I might have Ehler-Danlos, but the genetic testing is expensive and it wouldn’t change any of my treatments anyway. JHS is a congenital condition that just makes all of my joints extra loose.

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