Dysautonomia Awareness Month!

Make noise for turquoise!
Actually, maybe not too much noise. I’m in a bit of a quiet mood today.

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Dysautonomia: an umbrella term for medical conditions that cause a malfunction in the Autonomic Nervous System (Dysautonomia International).

The ANS is what controls automatic functions in the body – such as breathing, temperature regulation, heart rate, and blood pressure. Dysautonomia isn’t actually as rare as people think it is, but it’s not very well-known either.

I have a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (POTS, for short; don’t worry, I’ve heard all the jokes).

POTS is when the heart rate increases by 30 beats per minute (bpm)  – or 120 bpm – upon standing. Some may have a decrease in blood pressure, but overall it usually stays the same or even skyrockets. Many people with POTS may faint (syncope) or experience pre-syncope, where they feel as if they’re on the verge of fainting. Dizziness, fatigue, excercise and orthostatic intolerance, headaches, and nausea are some of the common symptoms also seen. However, each person may have slightly different symptoms. Some people with POTS function relatively well. Others are affected significantly, and it can difficult to cope with.

I’ve been treated for POTS for over a year now, and my cardiologist recently ‘reconfirmed’ it this past summer when they did a 21-30 day heart monitor.

For me, this means that I have significant orthostatic intolerance and other problems. I’ve often fainted, although I tend to struggle with pre-syncope or collapse more because my body just doesn’t want to stay upright. When I stand up or walk, my heart rate skyrockets. It’s not uncommon for my heart rate to be 140 bpm after I transition from sitting to standing. That in itself can be very stressful. However, POTS isn’t limited to a high heart rate. My blood pressure also goes up as well, which is a bit of a nuisance.

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An infographic detailing all the various symptoms of POTS. There’s a lot.

In general, my body also has trouble with regulating temperature, migraines, severe fatigue, and blood pooling. Insomnia, nausea, and chronic pain are also typical for me. I also have problems with GI and absorbing vitamins, but that’s something we’re still working on figuring out. There’s always some sort of medical testing going on.

Heat and exercise can also make it worse. Like I said before, I’m not great with temperature changes and I can’t stand heat. I used to tolerate heat extremely well as a child, but now I can’t deal with it at all. Exercise is also difficult, especially considering just standing up gets my heart rate into the higher levels. Swimming is supposed to be very good exercise for POTS patients, but I haven’t been able to make it to the pool yet this semester.

Basic activities such as cooking and simply walking is exhausting for me. This combined with my executive functioning skills sometimes means I’m just too tired to make food or make it to class. If I do make it to class, my brain fog can create difficulty concentrating and comprehending – something that makes my mild neurocognitive disorder worse. Currently, my ability to function is comparable to someone with congestive heart failure. As for quality of life, it’s considered to be similar to patients on dialysis for kidney failure.

This also means that when I get typical illnesses like the cold or flu (I call it getting “muggle sick”), I’m out of commission a lot longer than I normally should be. My body doesn’t handle it well, and even a simple virus can land me in the emergency room.

I end up in the ER a lot due to complications of it, especially when I’m not able to drink enough fluids (no, seriously; I’m supposed to go through a lot of Gatorade). Amusingly, I was in the ER last night due to a viral infection that exacerbated a lot of problems with my POTS – severe dehydration being one of them.

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Taken literally last night at 1:00am. Getting a bag of fluids intravenously due to dehydration – and looking very grouchy too.

To help function better, I use a wheelchair to help get around campus and places where standing is constant. I’m hoping to eventually get an electric wheelchair to help me get to class, as collapsing on my way to Writing class isn’t going to do me any favors. I’ve already missed quite a bit (between POTS and other illnesses, everything’s been a mess), so fingers crossed that gets approved soon. If it does, I could even do my exercises in the pool! It’s all about fatigue, brain fog, and not passing out, honestly.
I do use a cane if I’m in a cool, flat small environment with lots of chairs. My balance is really terrible (yay for three mild TBIs and vestibular issues), so I have to have some sort of mobility aid anyway. All of that said, it’s extremely important to keep up leg muscle strength. Deconditioning can make POTS so much worse, and that’s definitely something I try to work on. I personally hate having to rely on my chair, but it also allows me to do more – and to save energy so I can use my cane later!

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Me sitting in my wheelchair and hugging a dog during a volunteer event at the animal shelter last spring.

I also eat lots of salt and drink Gatorade, as well as wear compression tights. The salt and Gatorade are good for blood volume and hydration. The compression tights are great for the blood pooling and swelling, but they are also the worst thing ever for sensory problems. Typical, really.

There are some conditions that many people with POTS also have: Mast Cell Activation Disorder, Ehler’s Danlos Syndrome, and Gastroporesis. I’ve not been diagnosed with any of these personally, but I have several friends who have.

There’s no cure for POTS, unfortunately. I’ve been referred to Vanderbilt for an appointment with the Autonomic Dysfunction clinic, so it’s more of just a waiting game at this point. One of my friends recently went, and I’ve been told good things about it!

While POTS is supposedly “rare” according to Google, it’s probably far more prevalent than what people expect. A lot of people are diagnosed with anxiety first, because doctors don’t always have experience with it. Dysautonomia itself is definitely not rare, especially considering all of the different forms it takes! Not only does it encompass POTS, but it also includes Neurocardiogenic Syncope (NCS) and Multiple System Atrophy (MSA).

If you want to know more about Dysautonomia or POTS itself, there are a few really good websites:

http://www.dysautonomiainternational.org

https://www.dinet.org/

http://www.potsuk.org/

If you know of any others, feel free to let me know and I’ll add them!

One thought on “Dysautonomia Awareness Month!”

  1. What a great explanation of dysautonomia and POTS specifically! I also have POTS so it’s always interesting to connect with someone else who deals with these things. I’ve been able to do some exercises as long as I’m laying on my back so that has helped some if I don’t overdo. Hoping you get your electric wheelchair soon–my scooter has been wonderful!

    Liked by 1 person

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