My Dysautonomia Journey, Part 2 – Dysautonomia Awareness Month

Please read part one of my journey: here.

Dysautonomia has no cure.

Some people “grow out of it,” while others never do. The main people that appear to “grow out of it” are teenagers – these people tend to get sick due to all the changes happening in their body while they are going through the transition from child to adult, but then they get better when they reach adulthood (medical adulthood, not age 18).

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Since my dysautonomia started after I became an adult, it is unlikely to go away. Becoming pregnant could make it better, worse, or it may stay the same. Even if it gets better with pregnancy, I may go back to the way I am now after giving birth, or could get even worse than I am now! If it gets worse during pregnancy, it may get better after birth (better than now) or go back to how I am now, or it may stay worse. There is no way of telling for sure what it will do. Starting menopause will probably change it again, but there is even less known about what will happen with my dysautonomia at that point in my life.

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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!!!!

My Dysautonomia Awareness Products

As I’m sure you all know, I have a Zazzle store to sell my photography and other things! I also have a wide variety of chronic illness awareness products available for sale, including DYSAUTONOMIA PRODUCTS!!!

I know Dysautonomia Awareness Month is technically coming to a close soon, but we need to spread awareness all year long! I have a great selection of products in my store including:
 

 

 

 

 

 

 
 
What other products would you like to see?
Do you have ideas for designs (I’m still experimenting with design software)?
Any [non-copyright] phrases you’d like to see on something?

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

October is Dysautonomia Awareness Month!

Dysautonomia Awareness Month is here!

I am being quite active this year. I don’t think I was even really aware of it last year, or if I was, I was still kind of embarrassed and confused by my diagnosis so I definitely wasn’t as active and excited about it. But this year, oh my goodness! If you are following me on Facebook or Instagram, or both, you have probably been quite surprised in the uptick of my postings and the sheer amount of turquoise.

By the way, dysautonomia’s official awareness color is turquoise! And, if you also weren’t aware, that is one of my favorite colors and has been for years now, so it’s an awesome coincidence and just makes this even better!!!! ALL THE TURQUOISE! *cough sputter* Sorry about that.

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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

Emotional Roller Coaster, Old vs New

This weekend I’m having a rough time with my “new” body. I’m really missing being able to everything and not die. My fatigue is killing me and I feel physically beat up. I had a lot of fun, but I feel physically awful. Emotionally, the physical stuff is killing me. Ugh. This is just my life now, but I don’t like it.

Why I Haven’t Been Posting: Migraines & Pain

Today is the first day in a VERY long time that I haven’t had a migraine by this time (5pm). I have been suffering from nearly daily migraines for weeks, and denying it. Denying it with excuses: “I’m on my period, I’ve always gotten them every day of my period week” (pretty much true), “my allergies are just really bad, so it must be a crazy sinus headache” (obviously, I like lying to myself as well as Dan), “I’m tired,” “I have eyestrain,” “I can cope,” etc. However, after my back seized up and my pain went out of control, I couldn’t deny them anymore. I finally called Dr K (the neurologist that had given me the medication that is supposed to be stopping my headaches and controlling my pain) and left a message with his medical assistant. Hopefully, I’ll hear back and either be able to get in with another appointment or be told to raise the dosage and the headaches will stop. I forgot to mention the side effects on the message though, ugh. I didn’t realize that until I was typing this out.

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