Me vs Gravity: Life with Dysautonomia

awareness, chronic illness, disability, dysautonomia, EDS, invisible illness, POTS

         October is also Dysautonomia Awareness Month! Wahoo! Dysautonomia is an umbrella term for several conditions that result from a dysfunction of the autonomic nervous system (ANS). Many people know of the ANS from health class as being the system that is in charge of the “fight or flight” response, and you’d be mostly right. Yes, the ANS is in charge of “fight or flight” but more broadly, it is essentially in charge of regulating the automatic functions of your body. There are nine different types of dysautonomia: POTS, OI, AAG, Pandys, NMH, NCS, PAF, FD, and MSA. Learn more about them here. For this post I will only be talking about POTS and my experiences with POTS. I have secondary hyperadenergic POTS (hPOTS).

What is POTS?

As stated above, POTS is a neurological condition in which the ANS does not send the proper signals to the body to regulate blood pressure and heart rate (primarily, POTS affects the whole body).  Normally, when a person stands, gravity pulls blood to the lower extremities. The nervous system senses this and sends a message to the blood vessels to constrict, sending more blood back to the heart and head. With POTS, this message to constrict does not get sent. Therefore, instead of the heart rate increasing by a normal 10 to 15 bpm upon standing, it can increase by more than 30 and can even double (when first diagnosed mine went from 68 bpm lying down to 189 bpm and remained that way for 10+ minutes). By affecting circulation, it also affects cerebral blood flow. Symptoms include orthostatic intolerance (dizziness), chest pain, headaches, GI cramps and dysmotility, inability to focus and concentrate for long periods of time, inability to read due to blurred vision, difficulty with recall, blood pooling, extreme fatigue, nausea, tremulousness, insomnia, loss of consciousness. 

What causes POTS?

While there is some knowledge about comorbid conditions that are commonly seen with POTS and certain types of POTS have associated causes with the start of symptoms, it is unknown what is the true cause. For example, one type of POTS can occur post-concussion and we know that but not everyone who gets a concussion gets POTS. There is currently no cure and treatment is based on symptom management. 

Common Misconceptions

  • POTS is caused by anxiety. POTS symptoms can mimic anxiety/panic disorders patients are often misdiagnosed or POTS is missed entirely because symptoms are deemed to be caused by anxiety. See research here. 
  • POTS is caused by deconditioning. See research here. Exercise (for those allowed by their doctors) can be a crucial part of a POTS patient’s treatment plan but is not caused by deconditioning and cannot be cured by exercise alone. 
  • POTS is just getting dizzy sometimes. POTS is a complex neurological condition that effects every patient different though almost all, if not all, have multiple organ systems effected. 

Lingo

  • brain fog: cloudy feeling that hangs around and causes you to do stupid shit like flush the toilet three times, forget if you took your meds or just thought about taking your meds, and being unable to form a coherent sentence

What my POTS is like

***Disclaimer: This will by no means be an extensive list of symptoms or experiences and this is just how POTS effects me. There will also be crossover between EDS, GP, MCAD and possibly LQTS.***

       I was formally diagnosed with POTS in 2015 though I had symptoms beginning in early middle school years. To save my fingers I am just going to talk about my current life with POTS and will probably do a more extensive post later, I just tired and lazy.
       Remember the last time you had the flu and ached everywhere, slept all day and don’t remember half of what happened? Now imagine waking up feeling like that every day (and more! yaaay), this is one of my main struggles with POTS. Several factors contribute the fatigue including medication and adrenaline surges/crashes but on any given day my energy level is equal to or less than a sloth on Ambien. I take naps nearly daily, sometimes multiple times a day just to keep up with my peers. I have trouble filtering out stimuli, recalling things, producing speech, following multistep directions, and reading for comprehension.
        Another big problem I have is blood pooling. POTS alone can cause bad pooling but with the stretchiness of my veins from EDS, it is much worse. I also have Raynaud’s syndrome so my hands and feet are always cold! The picture to the left is an example of blood pooling in my hands (on medication). This is what happens if I stand with one hand raised and one arm relaxed for two minutes. The white hand was raised and therefore has less pooling (gravity does all the work). After about a minute of sitting my legs look like my left hand. Now imagine a 11 hour car ride or a 3 hour lecture. This is why many POTSies wear compression stockings and socks to help our bodies circulate blood or why lying down with our legs up helps. 


       While POTS impacts many things in my life it does not mean I can’t do fun stuff, learn, and enjoy life I just need everything to slow down and take breaks. I have very limited energy and most is spent on school, existing, medical appointments, personal hygiene (showers are EXHAUSTING), and keeping myself alive. I have to worry about getting places without steps, lying down in the middle of the mall to keep myself from passing out, obsessing over hydration and medication schedules to maintain baseline and prevent things from spiraling out of control, and pretend to be a functioning adult.

Thanks for reading and make noise for turquoise (dysautonomia awareness color)! 

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4 thoughts on “Me vs Gravity: Life with Dysautonomia”

  1. Hi Julie,
    My name is Nate and this post is the first time I have actually seen someone who has the exact symptoms I have with regards to blood pooling in my hands. Every morning when I shave my lower hand actually turns purple while my upper hand remains normal. My feet also turn blue when I sit on any chair or stool that lets my legs dangle. My doctors dismiss this and tell me everything else seems fine so I shouldn’t worry. I also have bouts of fatigue where I can’t even function at work. I have mentioned POTS to my neurologist and she claims it isn’t a recognized disease but only a symptom. She seems to think I have MS or Sarcoidosis but has no answers for the blood pooling. Thank you for your posts as they give me hope that I might one day figure out what the heck is wrong with me. I still hold down a job but it is a daily struggle. I hate to ask, but do you have any advice for me on how to approach my medical team and what steps or actions I can take to get any help? Right now I am just in survival mode living day to day fearing when will my next flare happen. Sorry so long just excited to finally find someone with common symptoms.

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    1. Hi Nate, good to hear from you. Getting properly diagnosed can be challenging sometimes and the range of conditions each doctor is familiar with greatly varies (and you can’t blame them, there are so many!). One thing that has been helpful is to bring in information (studies, info from organizations, diagnostic criteria) for some things that seem to align with your symptoms. Blood pooling and fatigue can be symptoms of many different types of issues in addition to POTS but you may be able to collect some data to help you sort that out. Measuring your heart rate (and blood pressure if possible) going from laying down, to sitting, to standing over a few days will help you determine if you meet the criteria for POTS. Things that can help with blood pooling in general are compression socks/tights/shorts, increasing salt and hydration, and “pumping” your feet while sitting for long periods to help the blood flow. In my experience, the more data on my symptoms, when they happen, what they are along with vitals has helped immensely to narrow down what seemed like totally unrelated symptoms. You may want to show your doctor the provider’s info page that Dysautonomia International has, it has research and all that. Hope this helps! Julie

      Link: http://www.dysautonomiainternational.org/page.php?ID=38

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  2. Hi Julie,
    Thanks for your quick response! I will follow your recommendations and begin to document my symptoms and record my vitals as you suggested. I appreciate the link to Dusautonomia International as well. Thank you for your kindness and I am grateful that I found your site. Very informative.

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