October is Dysautonomia Awareness Month

Aside from Pumpkin everything, October is also Dysautonomia awareness month. Unless you have a dysautonomia medical condition you’re likely wondering what in the world I’m talking about now. Whelp if you’re curious here is a little info. According to Dysautonomia International:

“Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.” *

*I would like to add that in my opinion and experience there is a much longer list of results and/or symptoms caused by the malfunction of the Autonomic Nervous System.

While there are several types of dysautonomia, the one I have is called Postural Orthostatic Tachycardia Syndrome (POTS). POTS is a form of orthostatic (relating to being upright) intolerance that is associated with the presence of excessive tachycardia and many other symptoms upon standing. It’s estimated to impact between one and three million people around the world, mostly women. For me POTS was diagnosed with a tilt table test, wherein the criteria was that my heart rate needed to increase by 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, which it met and exceeded with flying colors. If you’re wondering what the symptoms of POTS are, many of them are below and are often chronic:

  • High/low blood pressure
  • High/low heart rate; racing heart rate
  • Chest pain
  • Dizziness/lightheadedness especially in standing up, prolonged standing in one position, or long walks
  • Fainting or near-fainting
  • Chronic exhaustion/fatigue
  • Abdominal pain and bloating, nausea
  • Temperature deregulation (hot or cold)
  • Nervous, jittery feeling
  • Gastrointestinal disturbances
  • Forgetfulness and trouble focusing (brain fog)
  • Blurred vision
  • Headaches and body pain/aches (may feel flu-like); neck pain
  • Insomnia and frequent awakenings from sleep, chest pain and racing heart rate during sleep, excessive sweating
  • Shakiness/tremors especially with adrenaline surges
  • Discoloration of feet and hands
  • Exercise intolerance
  • Excessive or lack of sweating

As a healthy person you don’t think about all the times you are simply standing in one place until you have POTS. Somedays are better than others but most of the time standing in one place does all kinds of wonky things (see above list) to my body that leave me feeling terrible, and will often push me into a flare. Even sitting with my feet down can cause my HR to drop very low as the blood visibly pools in my feet and legs, so I try to keep my feet up as much as possible.

Researchers still have their sleeves rolled up trying to determine what exactly causes POTS. It varies by person, and most recently I’ve heard whisperings that maybe it’s autoimmune related. I’m not sure if they are ready to set that in stone yet. It does seem like it often comes in tow with other medical conditions but again, they don’t seem to be entirely sure why. The good news is that it is being researched, even at the hospital I go to they are, or were, doing a POTS study.

As far as treatments, those vary greatly per person. I’ve been told to drink at least two liters of water a day, wear compression stockings (can’t due to pain), increase salt A LOT, like a lot, lot, and have been prescribed several different medications. The most helpful things I’ve found are Himalayan salt, which helps much better than table salt, and coconut water, which is way more hydrating than bottled water. They also recommend rowing and cycling as those have shown to help stabilize things (with MECFS this is impossible). I find if I’m able to even walk to the mailbox and back each day it helps keep my heart rate a little more stable. I monitor my heart rate for pacing with chronic fatigue syndrome (MECFS) to stay below a certain number to try to avoid flares, which often helps. The interesting thing I found when I started monitoring my HR was that my POTS symptoms seem to correlate to my MECFS symptoms perfectly. So somehow, someway I just know they are working together. My HR ranges from the 50s to the 160s, depending on the day. Interestingly the worse the MECFS symptoms are the wider the HR range is, whereas on my borderline days my HR has a smaller range.

I feel inclined to add a couple things. If you see someone with a cane or wheelchair who “doesn’t look sick” keep in mind there are so many different types of invisible illnesses and so many chronically ill people who really want and need to be ‘out and about’. If they are having a very symptomatic day, they may require aids to make that happen. Be kind, offer your seat if someone looks like they need it, let that person in the check out line who is pale or leaning on something (or holding on to things) go before you. We often feel like we are going to drop and sometimes we do. This is not anxiety, it is a malfunction of the Autonomic Nervous System. It’s incredibly difficult to live with a chronic invisible illness, but it’s doubly difficult to deal with people who look down upon you when they determine you don’t need the aids that you do to be as functional as possible. Treat us like you’d like to be treated if you were in our shoes.

Finally, last week I received word on the denial of my appeal for disability income as they have determined I could at least work part-time exceeding the threshold of $1,200 a month. That’s 25 hours a week making minimum wage where I live, five hours a day. I can assure you, I could not do this, not for one day could I work five hours, let alone two, three, or four. It’s the 7th denial in five years, two from employer disability, five from SSDI. I have been so upset I haven’t wanted to talk about it, I still don’t really, but I mention it for one reason, awareness. One of my conditions listed is POTS, but in their consideration, they didn’t even take it in to account, it’s basically a ‘dear John’ denial letter so it would appear they really didn’t take anything into account. I will request a hearing of the appeal of the denial, which will take approximately 16 months. In 16 months, I will have been sick for six and a half years. Six and a half years without a penny of the tax money from a system that I paid into in case I got sick. I used to believe America was this wonderful country filled with opportunity and groundbreaking medical research. I guess for some people it is, but not if you are sick and cannot work, not then, then it is like a prison, only you didn’t do the crime you are being punished for. Someday I will get better, and some day I will lift my tired battered soul up off the floor of America and find somewhere that believes in the value of a human life. It is not here.

Sorry to end on a low note but trust me it’s the tip of the iceberg of my emotions right now. Next week I’ll hopefully be back to my silver lining self. Thank you for stopping in today, here are a few more of my doodles.

9 thoughts on “October is Dysautonomia Awareness Month

  1. What a great post to raise awareness of Dysautonomia. Very clear and concise. I’m not sure if you’ve seen but I actually wrote up a post on Dysautonomia to launch awareness month in Australia which you can read here. https://all-hearts.org/2019/09/29/dysautonomia-awareness-month-events/ I love the graphic you have created. This year for the first time ever we have had several buildings light up to raise awareness in Australia.

    Liked by 1 person

  2. This is a fantastic post to educate and highlight the issues around dysautonomia, which is something I think is still very much under-represented and known about. It’s disconcerting reading the symptom list though as I ticked off all of them apart from dizziness when standing, I only get occasional dizziness and passing out maybe once every six months. Never been tested for dysautonomia and I don’t imagine my doctor would even know what it was. Hence why posts like this are so important. Very nicely done.
    As for the disability income appeal, I don’t know what to say. I’m so sorry. It’s disgusting and beyond disgraceful, and yet it seems like those who need the help the most don’t get it or have to fight for it constantly. What will happen next, is there anything you’re thinking of doing after having this one rejected? Being in the UK, I really don’t know how things work there but so many over here can’t get the benefits they need either (compared to those who seem to abuse the system quite easily!) I’ll be rooting for you, Mishka. Hang in there. Sending lots of love and hugs your way  ♥
    Caz xxxx

    Liked by 1 person

    1. Thank you, Caz💙 My cardiologist diagnosed me after a tilt table test. But she was the 5th cardiologist I saw, the first 4 wouldn’t take me seriously. She did and turns out I was correct. Actually it took me taking in Fitbit and cuff readings to show her how wonky my readings were. Somehow it feels better to at least have an explanation. And thank you for your kindness. Next step is a request for a hearing which takes over a year so it’ll be in 2021 before that happens. Disgraceful really. I’m trying to be okay with it as I do currently have everything I vitally need. Still heartbreaking though. Hoping the weekend is a peaceful one for you 💙

      Liked by 1 person

  3. Hi, this post is super informational. I got diagnosed with cfs/me but you saying about the ‘standing upright’ has never really fallen into this for me. Now I have something to help me check with the dr, thank you


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