21 Signs You May Have Dysautonomia


Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health or diagnoses, please consult a doctor or medical professional.

October is Dysautonomia Awareness month – a month that is near and dear to my heart.

So, what is dysautonomia, anyway? And why do we care?

Dysautonomia is when one’s autonomic nervous system is faulty and does not work the way it should. There are many different basic bodily functions that dysautonomia negatively impacts, including but not limited to heart rate, digestion and body temperature. Dysautonomia presents in many different forms, the most common being postural orthostatic tachycardia syndrome (POTS) and neurocardiogenic syncope (NCS), which I will mainly be focusing on. However, there are several other forms I am not mentioning which are very debilitating.

Dysautonomia, POTS in particular, is not rare, it is just rarely known and not often diagnosed. The average time it can take for an individual to be diagnosed is roughly six years. I am lucky that I was diagnosed right away – not everyone is! So, in honor of Dysautonomia Awareness Month, I thought I would put together a post on signs you might have dysautonomia. I am not a doctor, and this post is not meant to give medical advice in any way. I am talking from my own experience, and many of you with dysautonomia might be able to relate to this! If you are not diagnosed with dysautonomia, but are experiencing many of these symptoms, it might be worth looking into. But again, this is from my own experience. So, here goes!

Signs You May Have Dysautonomia:

1. You get lightheaded

2. You black out upon standing

3. You are often dizzy

4. You feel your heart racing, especially when you stand up

5. You have to lie down after you take a shower

6. Alcohol and caffeine are not your friends

7. You experience pre-syncope or syncope (fainting)

8. You feel tired and fatigued much of the time

9. Slower than normal heart rate, or bradycardia

10. All sorts of digestive/stomach issues including nausea, vomiting, constipation and feeling full quickly (just to name a few)

11. Sweating like it’s no one’s business

12. Decreased sweating or not sweating enough

13. You are either freezing or dying of heat

14. Needing to empty your bladder, like, every five seconds

15. Generally low blood pressure

16. Orthostatic hypotension where when you stand, your blood pressure drops, making you feel dizzy, lightheaded or as if you are going to pass out – if you don’t actually pass out

17. Brain fog… what was I talking about? (The struggle is real.)

18. Feeling shaky and weak

19. Chest pains and being short of breath (typically from the tachycardia, which brings me to #20…)

20. Tachycardia (higher than normal heart rate)

21. Blood pooling. Your feet will turn reddish purple. Looks pretty cool until you start to feel terrible.

So those are my top 21 signs you might have dysautonomia. Let’s continue to raise awareness for this overlooked disorder that affects millions of lives each day. Whether you are diagnosed or in the process of trying to get a diagnosis, keep looking forward and know you are not alone. We do not always have doctors who believe us, so advocate, advocate, advocate! Some doctors may not take you seriously, but you take you seriously and fight for the care and treatment you deserve. Happy Dysautonomia Awareness Month!

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via demaerre.

TOPICS
, Contributor list
JOIN THE CONVERSATION

Related to Dysautonomia

17 Things People With Dysautonomia Want You to Learn During Dysautonomia Awareness Month

17 Things People With Dysautonomia Want You to Learn During Dysautonomia Awareness Month

October is Dysautonomia Awareness Month, so it’s especially important during this time to raise awareness and promote understanding of the condition and empathy towards everyone who lives with it. Dysautonomia refers to a group of disorders in which the autonomic nervous system malfunctions, causing cardiovascular problems, breathing issues or fainting. Symptoms can be serious if not properly managed [...]

Today's Chronic Illness Specials: Dreams, Hangover and Fatigue

This is me. The dreamer. The hungover. The fatigued. Daily specials on my menu of life. Every morning, to varying degrees depending on how busy my day was previously, I wake in a fog. A pea soup kind of fog. Feeling like I’ve been somewhere half the night. In another dream. With people I don’t know, [...]
woman at the spa with a manicure and pedicure

8 Self-Care Ideas for Spoonies

Being chronically ill really takes its toll on both your body and your mind. So much about your life changes when you get sick and lose control over so many aspects of your life. It can be an exhausting adjustment. A lot of people think being this sick just entails a lot of Netflix-ing, hot [...]

16 of the Worst Symptoms of Dysautonomia (and How People Deal With Them)

Dysautonomia is an umbrella term for a number of different conditions in which the autonomic nervous system malfunctions. While your individual set of symptoms will largely depend on your specific diagnosis, none of them are exactly desirable. Dysautonomia symptoms can be difficult to manage, but many of those living with the condition have found coping [...]