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