My alarm goes off and I swim out of my puddle of sweat, slowly raising myself off of the bed. If I move too quickly, I will feel a massive headrush and dizziness. Luckily, I have never passed out. I begin my day with my one cup of caffeine, because any more than that and my heart rate goes haywire. I gather my pills from my oversized pill box. I can’t forget to take those or my day will be over before it even begins. I prepare my salty, lemon water and go through my mental checklist before I leave the house. My 5 year old even knows my list and helps me verbally check it off before we pull out of the driveway so we won’t have to return for something I’ve forgotten…again.
These are my brain fog moments that I have become accustomed to after being diagnosed with Dysautonomia.
What is Dysautonomia?
Dysautonomia is an umbrella term for many different medical conditions that cause the malfunction of the autonomic nervous system (ANS). The ANS is responsible for all of those involuntary things we don’t have to think about: breathing, heart rate, temperature control, digestion, kidney function, brain activity, etc. With dysautonomia, those involuntary functions go awry and can manifest as so many different symptoms. For this reason, many people with dysautonomia are misdiagnosed and go untreated for years before finally figuring out the real problem.
Many people experience “symptoms” that may get diagnosed as other illnesses. One of the most commonly misdiagnosed symptoms is difficulty breathing. So many people report being misdiagnosed with anxiety as some doctors brush off dysautonomia as a diagnosis.
My particular type of dysautonomia is called “orthostatic hypotension.” Basically, my heart rate drops dramatically, especially when standing. My daughter has recently been diagnosed with POTS (Postural orthostatic tachycardia syndrome), which is also under the dysautonomia umbrella. She experiences a racing heart when standing. There are a few symptoms we share, such as difficulty breathing and lightheadedness when standing. Because there are so many illnesses associated with dysautonomia, it’s hard to say “here is a list of symptoms and how to treat them.”
Some Symptoms of Dysautonomia
Most recently, people are reporting being diagnosed with dysautonomia after COVID infections. This has increased the attention and research on dysautonomia.
2020 has definitely been a difficult year, to say the least. For me, my chronic illness added an extra layer of stress.
My Dysautonomia Experience
My symptoms are exacerbated by hot, humid weather….I live in the southern part of the US.
Anxiety and stress also make my symptoms more pronounced….I’m an in-person teacher during a pandemic with 2 children of my own.
Diet plays a huge role in my overall well-being….many “healthier” foods weren’t available during the lockdown.
So, all of these problems compounded into an overwhelming flare. I took FMLA (unpaid medical leave) for the first 9 weeks of school because my symptoms were so bad. When I finally did return, I was so stressed out. Having to teach through a mask was almost impossible. It was anxiety inducing to not feel able to breathe, but I pushed through as best I could. My doctor started me on an extra medication after experiencing several episodes of erratic heart rate/blood pressure while at work. Thankfully, this medication has helped tremendously.
It takes a lot of trial and error to finally figure out what works for you. Everyone is different and responds to treatments differently.
There are many Facebook support groups that have helped me through figuring out this illness. Join our brains and spoons support group here.
If you suspect you have dysautonomia, speak with your doctor. If you would like more information, I suggest visiting Dysautonomia International.
Misty is the imperfect Mama behind her blog, Life Between the Dishes. She is a wife, mom, and high school Biology teacher living her best life with a chronic illness. She likes to keep it real but tries to keep a positive outlook. She share tips, tricks, resources, and recommendations to help busy moms survive all things mom life with less stress, mess, and more success!
Wow! As a mom and a teacher, I’m shocked I’ve never come across dysautonomia before. I can see from the information you’ve shared why it gets misdiagnosed often. Thank you.
I’ve heard of POTS, but haven’t heard of any of the others. I also never heard of Dysautonomia before! This definitely taught me something new and hearing your experience gives us good insight into what it’s like to experience this.
Extremely helpful information. Thank you for sharing !
This was fascinating to read. I am going to look into this more.
Thankfully, the medication is helping for you. So many stressors last year, and this year, too. But, things will get better soon. We just need to take care of ourselves, physically and mentally.
Wow, I can’t believe I’ve never heard of this! Seems like it’s really hard to spot/diagnose, hopefully more research will result in steps taken to make things easier
thank you for the information I am not aware of it and first time read about it.
Thank you for the informative post. I hadn’t ever heard of dysautonomia before. I appreciate you sharing your story and broadening my knowledge. So glad medication is helping. My husband taught biology for years. Good luck to you as you finish out the school year!
Thank you for sharing your experience. I’m sorry you’re going through it, but I’m sure that the awareness you’re bringing to this illness will help others. I’m a huge fan of healthy eating too–I hope you’re able to get the healthy foods you need as the pandemic (hopefully) starts to ease up!
Thank you for sharing. I have autoimmune disorders that cause a lot of these symptoms as well. It can definitely be challenging.
I actually have pots and I love hearing about others experiences. It can be such a lonely journey when no one understands.