What It’s Like to Live and Cope With Dysautonomia

The last couple of weeks have been crazy busy and emotional, relocating my 91 year old Aunt from a challenging living situation to Assisted Living. She is settling in nicely and looks like a whole new woman, which has made it worth absolutely everything. If I haven’t said it before, I’ll say it again now: my Aunt has been a saving Grace and inspiration to me since I was a teenager. While we often have to do what we have to do; for some of us, the price we pay is a little more severe.

I held up pretty well, initially, as adrenaline is often kind enough to enable that. By Tuesday night, though, it all caught up to me. As I got ready for bed, after a long day, I suddenly felt it: those all too familiar feelings that I was in trouble. It’s astonishing how quickly it comes on. I was brushing my teeth when I suddenly started to get incredibly warm. In seconds, I was sweating bullets, nauseous, light headed and the room began to spin. By now familiar with this onset of symptoms, I was trying to gauge whether or not I could make it to my bed. I started to try when the bright lights hit. I screamed for my Husband and as quickly as I could, got to the floor. As I drifted close to unconsciousness, I tried repeatedly yelling for Bri, to no avail. (I hate our air conditioning!!) Whether I actually lost consciousness or not, I can’t actually tell you, I can tell you, however, that if I didn’t, I was very close.

Welcome to living with Dysautonomia.

Here is a definition of Dysautonomia from the Mayo Clinic:

Dysautonomia is a general term used to describe a breakdown or abnormal function of the ANS. The Autonomic Nervous System controls much of your involuntary functions. Symptoms are wide-ranging and can include problems with the regulation of heart rate, blood pressure, body temperature, perspiration, and bowel and bladder functions. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (Syncope), weakness, and cognitive impairment.” In addition, digestion is controlled by the autonomic nervous system. When the ANS malfunctions, the “victim” commonly develops gastrointestinal problems. Symptoms include nausea, bloating, vomiting, severe constipation, and abdominal pain.”

For me, Dysautonomia affects me in the following ways:

  • Fainting spells: We have found no catalyst for the dizzy spells and they come on quickly, viciously and with no notice. I just described a typical fainting spell above. This can be severely limiting as they can last anywhere from hours to minutes and often leave me feeling drained for hours afterwards.
  • Vertigo spells: They sometimes precede a fainting spell, but not always. They are also particularly vicious and have a sudden onset. The entire world spins when I am afflicted.
  • Dizzy spells: Dizzy spells are not the same as vertigo. With vertigo, the world spins. With a dizzy spell, it feels like I am spinning. These are also disabling, but less vicious than vertigo.
  • Frequent nausea: This symptom is just phenomenal; insert dramatic eye rolls here. Because I also have Fibromyalgia, I get a double dose of reasons to get nauseous. I typically get an upset stomach, feeling like I may throw up and difficulty eating or drinking.
  • Severe motion sickness: I get severely sick in the car, sometimes even if I drive. Pretty much combine all of these bullet points and that accurately depicts how I feel during a car ride.
  • Light headed/dizziness from showering: Once again, this also occurs with Fibromyalgia. This typically comes on as a result of my body having a difficult time with temperature regulation. If I don’t get out of the hot water quickly enough, these spells will lead to a fainting spell.

I entitled this post with the word “coping”, instead of “managing”, because it’s as simple as that: there is no effective way to manage this disorder. Of all the conditions I live with, Dysautonomia can be the most life limiting and ferocious one of them all.

I have seen numerous specialists, including: ENT (ear, nose and throat), Cardiology, Audiology, Neurology and as always, Primary Care. After numerous appointments and tests, it finally resided within the Cardiologists domain, which is great because my Cardio Doc is one of my favorites. His prognosis? It cannot be easily helped, nor controlled and is a tough thing to live with. Our most important take away is to make sure I always get to the ground or the side of the road, before losing consciousness. In his experience, people with Dysautonomia are most often hurt as a result of falls or accidents, as opposed to the disorder itself.

While we can’t really manage it effectively, here are a few things I use to cope with it:

  • For fainting and vertigo spells, there isn’t much I can do but lie down and try to ensure I’m safe and not moving.
  • For dizzy spells: I use Meclizine, the active ingredient in Bonine. It’s hit or miss with the medicine; only sometimes providing relief. I also try eating a good pinch of finely ground sea salt, under my tongue.
  • For nausea: I keep gum and ginger on hand and have a prescription for Zofran. When I struggle to eat, I focus on small nutritious “meals” like fresh cherries or carrots with peanut butter.
  • For the severe motion sickness: I often avoid going anywhere-which is obviously a huge bummer. When I do go out, I pre-treat with Bonine 90 minutes before hand. I also have Scolpamine patches, which go behind your ear and are applied 4 hours ahead of time (not always practical). Both of these are totally hit or miss and more often than not, car rides are truly miserable. Just in case, I travel with a kitty litter bag and napkins in tow. When I experience an uptick in episodes, I either stop driving or try to have someone with me that can drive, if need be.
  • For showering: I sometimes use Midodrine 30 minutes prior to showering. This works to counteract my normally low blood pressure, raising it to offset the effects of the hot water. I haven’t found Midodrine to be particularly helpful, as it can cause some of the same symptoms as those we are using it to treat. The other risk with using it is high blood pressure.

As I lay there on the floor, the other night, the feelings of fear and tremendous vulnerability washed over me. I was literally powerless to help myself and could not yell loud enough to wake Bri. It was in that moment of fear and helplessness that my Schnauzer, Oliver, started to whine. I quickly realized he was trying to help and resorted to yelling louder and banging on the floor to further rile him. Without any service dog training, Oliver did it: he woke Bri, who quickly came to my rescue. Oliver’s devoted love saved my day and once again reminded me of the silver lining that often resides in things; exemplifying the exact reason I live with gratitude.

While I know that there isn’t much I can do to prevent or treat my ongoing issues with Dysautonomia, I do have some safeguards and tools in place; some of which are furry. That makes it just a little bit easier to live with.

As always, much love, Stace <3

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Fighting with Fibro and Living With Purpose. Mom, Wife, Blogger and animal lover. Fighting with Chronic Illness on a minute by minute basis; sometimes winning.

10 thoughts on “What It’s Like to Live and Cope With Dysautonomia

  1. Dysautonomia is the reason I rarely drive and am a prisoner in my own home. You describe the symptoms so well! Glad your aunt is settling in at her new home. She will be safer there and that will give you peace of mind at the least. Give Oliver a smooch for me…what a good boy for looking out for you. What would we do without our pets? Mine are the only reason I get up most days. Sending love and hugs to you Stace! Hang in there. Somehow we will keep moving on.

    1. Oh gosh Gail. So it never improves? I’m so sorry that you have it too-I guess I missed that. I wouldn’t wish it on anyone. It’s just the worst. I’ll go months without having a “flare up” and then once I have one, I’ll be stuck in a constant cycle for months. I didn’t drive for almost a year over it!!! I would have loved to walk the dogs today (it keeps me somewhat sane), but I didn’t dare after spending all morning in bed. Oh yuck. And I wholeheartedly agree-that’s precisely why we got Oliver!! I’ve even recently realized my dogs eat better than I do! 😉 I’m so happy to hear from you! Thanks for commenting!!

  2. Hey Stacey, just read your post on Dysautonomia . I really feel for you, same as I really feel for myself. I have fibromyalgia and have light versions of your symptoms. I have had three bouts of what you experienced in your bathroom but I thought it was something else….that aside, I gotta say, I felt I was going to die the first time it happened. I was in the loo so I expected to die face down with my butt bared to the first rescuer who showed up…!!!!! Just my luck I though……anyway, I must say I like your writing. You’re really clear and ordered in your information, and you’re emotion is open and honest. Thanks so much….you’ve helped me make sense of some of my symptoms and offered some solutions and the means hope…..something just might work for me too.
    Thanks again, Mandi from Australia.

    1. Oh my goodness, I just blurted out laughing! Thank you 😁It isn’t funny, at all, but you just articulated one of the fears I have. It’s awful. This happened one day while I was at Physical Therapy and Nurses came running from everywhere. It was horrifying. But at least I wasn’t naked 😉 The unpredictability and suddenness of it only make it worse. And I totally agree with you, it’s absolutely terrifying when it does happen. Laying on the floor last week, totally paralyzed and unable to rouse my Husband, was horrifying. It’s the epitome of helplessness. I’m so sorry you deal with this too.
      I will add this to the post when I get a chance; one other tip is to clench and unclench your fist, when you feel it come on-it gets the blood pumping again. I never seem to get enough notice to do so, but it’s another tip I’ve learned.

      I’m really flattered by your comments, thank you so very much!!
      I’m happy you liked the post and found it useful!! I hope you will subscribe and continue to comment!! It’s great to meet you!! ~Stace

  3. Stace, I can’t even imagine how you cope with this. The vertigo, nausea and fainting spells sound horrendous. I am so sorry that this affects so much of your life. I actually have the symptoms you describe when showering. Not always, of course, but when I’m in a pain cycle. I had no idea they were a symptom of fibromyalgia. Many times I have had to get out of the shower quickly and get down on the bathroom floor to avoid passing out. Hmm. I had no idea it was a thing. Thought I was just weak. Sending 😍!

    1. Ahha! I actually have an answer for this, Jayne!!!!
      The shower experience can be two fold. It *can be* the Dysautonomia, BUT, another phenomenon happens in the shower too (double whammy). The hot water causes all the blood to flow to your skin; to try to regulate your body temperature. When this happens, the blood does not adequately flow to the heart and brain, so you get the symptoms you just described!
      To counteract this, I turn down the temperature of the water as low as I can stand it. I leave the window open. I open the end of the shower curtain and I shower as quickly as possible. Those tips don’t always work, but they have significantly improved the frequency of those occurrences!!!
      It drives me crazy passing out from a shower-I’m down the entire afternoon when it happens. So my Cardiologist explained it to me and gave me some of those tips!!! I hope they’ll help you too!!!
      Maybe I should do a post about the shower thing-a lot of us suffer from that because Fibro causes difficulty in body temperature regulation. When you’re in pain-the body processes that signal first. So it’s even harder for us to regulate our system then.
      As for passing out from the Dysautonomia, well solving that isn’t as easy 😕
      I’m sorry you deal with this too, Jayne. It’s never ending! But never think you are weak!! You are anything BUT!! ❤️Stace

      1. I really had no idea! Thanks for this! And your tips work. Leaving the bathroom door, shower door and window open and running cooler water makes a big difference!

  4. It sounds like quite a emotionally & physically draining time for you lately, but I’m so glad your aunt is in a better place in the Assisted Living facility; to already notice a difference in her is fantastic.
    I think you’ve done a great job with covering what dysautonomia is, the typical symptoms, and what life can be like with it. I get why the cardio doc said injuries are often from accidents and falls rather than the disorder per se. It definitely sounds like an incredibly challenging, frustrating, difficult and dangerous condition to live with. You’ve provided some fantastic suggestions and things to consider that will be really helpful for others with the condition. I’m glad Oliver was there to get Bri for you the other night, what an amazing pup you have! You’ve done a brilliant job with your post, Stace  ♥

    1. Thanks so much, Caz!!! I think one of the most frustrating pieces of it is how utterly disabling it is. I can’t do anything when I’m so dizzy or the world is spinning. And it makes going anywhere a complete nightmare. As if the Fibro & CFS aren’t enough?!
      Bri is actually pondering getting Oliver trained to help when I have a spell or fall.

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