Do you want the bad news or the good news?
Okay, here goes with the knockout punch: dysautonomia affects more than 70 million people worldwide and, at this time, there is no cure. The good news? Now that you know what you’re dealing with, you can educate yourself (and others) to manage this DYS-order.
I feel like I’ve been dissed…
Probably, but it wasn’t your fault. Let’s break the word down so we know what it means. Dys means bad or difficult. Autonomia refers to self-governing or self-regulating. “Houston, we have a problem,” regulating our body’s nervous system with functions we take for granted. Dysautonomia comes in two forms: 1) primary, which is inherited or genetic, and 2) secondary, which results from another condition or an injury.
How do we solve a problem like dysautonomia?
Find a good functional neurologist or integrative medicine doctor. When trauma occurs in the brain, it disrupts many systems in the body. Unfortunately, most doctors are specialized, meaning they deal only in one area of practice, like the heart for instance. Dysautonomia needs a multi-disciplinary approach, and because its symptoms can be so generic (meaning they are symptomatic of other diseases or illnesses), it’s hard to pinpoint a diagnosis. It doesn’t help that our healthcare insurance has become a fast-food approach—in and out with the most profit—leaving us to see an organic and holistic approach visible only in the rearview mirror.
Symptoms vary; they come and go, and are triggered by physical, emotional, and environmental stressors. A smattering of symptoms include:
- Low blood pressure
- Low energy–feeling like you can barely move
- Heart palpitations
- Feeling weak
- Mood swings and irritability
- Trouble sleeping
- Dizziness, fainting, or vertigo
- Low glucose levels
- Migraines and headaches
- Trouble regulating your body’s temperature
- Loss of appetite
- Visual disturbances
- Aversion to light and sound—so not a fan of “shock and awe”
- Problems with urination or constipation
- Brain fog
- Attention and focus issues
These symptoms can be attributed to the brain injury itself as post-concussive syndrome, and not be diagnosed as dysautonomia resulting from the brain injury. It can be frustrating for those who have dysautonomia, and their symptoms are seen by an endless round of specialists or are dismissed with statements like “it’s all in your head,” “you should workout more,” “you look great though,” “eat more and gain some weight” or “you’re probably just depressed…get out a little more.” If you had a dime for every time you heard that—you’d a member of the millionaire club.
Temperature regulation seems to contend to be a top symptom, feeling “hot, hot, hot,” or like “ice ice, baby.” Your body temperature might not be in the normal range and might run a few degrees on either side of normal. You may feel you need a fur coat when the temperature dips below 70, with every hair on your arms standing up, covered in goosebumps, longing for those summer nights. Yet, when summer arrives, along with the humidity, you might feel like you have to crawl to your bed and inject IV fluids to avoid brain fog, confusion, dehydration, and dizziness.
Other top contenders are low blood pressure and fatigue. Changes in blood pressure may occur upon standing and with changes in your heart rate—a drop that’s too fast and too far can cause you to faint. No need to point out the obvious that you could hit your head. (I’m mentally face palming myself at the irony…) The fatigue is can be so intense — bone-wearying, feels like death, and includes brain fog and muscle weakness. Would you rather run a marathon, do a school science project, and twelve loads of laundry in one day—or deal with a day of dysautonomia fatigue? That was a trick question…
Sounds like I need a little patience…
It’s a true statement that we need patience, along with doing some low-tech management:
- Stand up slowly and elevate your upper body when sleeping to reduce that blood pressure drop when you rise, which decreases your chances of fainting.
- Make like a camel. Hydrate and use electrolytes. We’re a naturally dehydrated population with our caffeine fixes, so drink lots of water. Keep it in your car, by your bed, and while binge watching movies.
- Consider adding Himalayan sea salt to your diet to help balance electrolytes, give your body an assist in retaining water, while giving your blood pressure a much-needed boost. You should definitely consult with your practitioner before taking this tip.
- For fun in the sun—skip the sun and stay in the shade or inside with the air conditioning and the fan. Keep a small fan by your bed or chair for when your internal Mt. Vesuvius erupts.
- Store an extra-cool fashion hoodie in the car for the advent of the Ice Age. Start a new fashion trend with all the scarves you’ll be wearing to keep warm.
- Don’t try to climb Mt. Everest or participate in the Tour de France just yet. Instead, practice moderate exercise, like walking.
- Eat … while you’re not fattening up for the holidays like Santa Claus, you do need to maintain and get proper nutrition even if your appetite has disappeared. Keep some bars on hand like Crickstart or 88 Acres brands for gluten-free, non-GMO, protein-style snacks, or get snack bags of almonds. Or, consider adding some protein drinks, like Remedy Organics, to get your two-fer: hydration and protein.
- Your future is so bright you gotta wear shades…wear them when you need to, indoors or outdoors. And add some inexpensive silicon earplugs to help with your noise aversion or go hardcore and treat yourself to some Beats.
- Be kind to yourself.
Disclaimer: As always, please consult with a licensed medical practitioner for your medical needs.
Kelly is a single mum, veteran, TBI survivor with a girl child and a frenchie, oolong tea in hand and humor on hand, who lives in Annapolis, Maryland.