I was diagnosed with cardioneurogenic syncope in late 2008 based on the post-exercise collapse of my blood pressure. I waited many years for my illness to be named. I was 14 or 15 when I first noticed that I didn’t have the stamina of my friends, and I was 43 when I was diagnosed. I’m not sure whether my cardiologist and neurologist placed me in the right spot on the spectrum of dysautonomia, but I’m satisfied that I sit somewhere on the spectrum.
Being ill without good reason over a long period of time was physically, emotionally, and professionally devastating. Without a diagnosis, there had been no prognosis, no treatment, no way of knowing how best I could manage my symptoms or prevent exacerbations of my illness, no support group, and no capacity to plan my life or to know how long I would live or work.
My Experience of Dysautonomia
Over decades, my symptoms had been attributed to a range of different causes. At 18-19 years, as a trainee nurse, I thought my general debilitation was due to back injuries and shift work. In my early twenties, when I was no longer a nurse, my ongoing symptoms were thought to be caused by food intolerance. In my mid-twenties, I was very sick after a trip to India, and it was attributed to allergies or a mystery bug. In my mid-thirties, it was thought my ongoing ill health was caused by a broad grain allergy; in my late thirties, it was thought that I’d had pericarditis and maybe mild lupus. Even now, it is unclear whether I had a succession of different illnesses or just one that was progressing or undergoing periodic exacerbation.
My symptoms didn’t seem to provide doctors with any clear direction. In the early days, fatigue was my constant symptom, varying only in severity. Other symptoms would come and go including nausea, night sweats, gut, heart, and respiratory symptoms, chest discomfort, small seizures, panic disorder, neck pain and soreness at the back of my head, exercise intolerance and post-exercise collapse, and problems with my speech.
For around five years in my mid-thirties, I had two cycles of anemia of chronic disease every year. Although the cause was uncertain, I recovered each time with 2-3 weeks of bedrest, and it became clear that I was much sicker. My iron fell more quickly the more physically active I was.
It was around this time that I began collapsing 1-1 ½ hours after exercise. I was not passing out but slumping over, unable to get up for five minutes or so, then being overwhelmed with the need to sleep. For a number of years I refused to give up exercise. Two or three times a week I would walk around the lake or work out at the gym, rush home and wait for my collapse, then sleep for several hours. At forty, I was too sick to continue exercising.
Managing My Illness
From that point on, I used physical inactivity and bedrest to manage my illness. My only other tool back then was ibuprofen, which I took in a small dose at bedtime to stop my night sweats. Even with these few tools, I was better able to manage my illness, although periodically I would still have exacerbations brought on usually by overwork, physical activity (e.g. moving house), or lack of rest.
Sometimes I would trade an exacerbation for overwork, confident that I’d recover with 2-3 weeks of bedrest afterward. I no longer do this, having struggled to recover from an exacerbation in 2008. After overworking for just six weeks, all of my symptoms worsened as expected, but this time I developed a succession of infections (tooth abscess, sinusitis, laryngitis, conjunctivitis, tonsillitis). For the first time, I failed to recover with bedrest. My nighttime respiratory symptoms recurred, and I became periodically incontinent. My recovery since then has been very slow.
My focus now is on preventing exacerbations of my illness, as well as on daily management.
I’ve never done well on medications. At diagnosis, my cardiologist wrote me a prescription for three drugs she thought might be helpful: Rythmodan, which I couldn’t take because of an allergy to the maize starch filler, Aropax, which left me semiconscious even at a quarter dose, and Inderal, which amplified the effects of my illness.
I’ve gone downhill on IV vitamin C, which my doctor was certain would give me a boost. Two successive courses of iron injections in my mid-thirties coincided with a dramatic decline in my health from which I never fully recovered. Additionally, I became very sick very quickly when a doctor tried treating me for mild lupus (with an antimalarial).
I was lucky enough to find a review article by Dr. Blair Grubb which provided information on non-drug approaches to managing dysautonomia. If anyone sees Dr. Grubb, please give him my thanks and best wishes, and tell him an Australian woman is grateful for his work. In case it is helpful to anyone, I’ve listed below the approaches that have worked well for me.
I’ve also tested every possible alternative therapy. I can honestly say that I’ve had benefit only from meditation (for relaxation), cranial osteopathy for musculoskeletal problems, and simple treatments for nausea.
Fatigue: General management of my illness helps to minimize fatigue. I reduce fatigue by getting plenty of sleep and rest as well as prevention and treatment of my other symptoms. Laying flat also eases most of my symptoms, particularly fatigue. Other approaches I’ve found effective include:
· Fluid intake – Drinking fluids helps. I have little or no thirst, so I find it a chore. I always thought that the need for fluids was exaggerated. At first, trying to increase my fluid intake, I would drink 1.5 liters through the morning and then think ‘phew, I’m done.’ It became clear that I was feeling well in the morning but really fatigued for the rest of the day. To someone who feels thirst, it makes sense to space out fluids; I was really slow to work that out. Now I have a glass of water on rising and another at 9 AM, 12 noon, 3 PM, 6 PM, and around 8 PM.
· Diet – Salt really does help. I salt my food and, if I’m particularly fatigued, a salt tablet or salty snack is often helpful. Also, I’m not fanatical about it, but I generally don’t eat big carbohydrate-based meals of pasta, rice, bread, or potatoes. I’ve only heard of a couple of other people with dysautonomia feeling more fatigued after eating carbohydrates, but it’s also the case for me.
· Compression hose – Wearing compression hose stops blood from settling in the legs on standing. I use Venosan stockings. They don’t give maximum compression, but I can wear them to work without looking weird. They are expensive and hard to get on, but I’m more fatigued without them.
· Physical inactivity – I always felt fabulous when I was exercising but much more fatigued afterwards, particularly when I started collapsing. My fatigue increased if I persisted with exercise, and my cardiac symptoms worsened (chest pain, irregular heart beat). I avoid exercise now and rest often. I also have two month-long breaks every year to rest.
Night sweats: On the advice of an immunologist, in my late-thirties I started taking a small dose of infant ibuprofen at bedtime. This stopped the night sweats and gave me better, unbroken sleep. After many years, my night sweats stopped about a year ago, so I stopped the medication.
Soreness at the back of the head and neck pain: When my illness is very active, I get a deep soreness at the back of my head and neck pain that makes it hard to turn my head. These symptoms are easily treated, and I feel much less fatigued without them. My osteopath can fix the neck pain but not the soreness at the back of my head; my neurological physiotherapist can fix both. This year I’ve been seeing both therapists every 1-2 months to try to deal with these symptoms early and prevent them from occurring.
Respiratory symptoms and chest discomfort: At my sickest, I woke at night gasping as though my body had forgotten to take a breath. At other times, it’s felt as though the muscles at the back of my throat have collapsed, blocking my airway. For years I expected to suffocate in my sleep. I can also feel as though I’m not getting enough oxygen, as though my lungs aren’t expanding or I’m trying to suck oxygen out of a thick fog.
During my last exacerbation, my general practitioner tried treating me with Lexapro; it gave me insomnia, stomach pain, and tinnitus, even at a quarter dose, but it quickly and effectively relieved my respiratory symptoms. (I managed to take it for around six weeks.) My respiratory symptoms are also eased by lying flat.
These symptoms are accompanied by chest discomfort and sometimes a mild sensation of choking; it’s as though someone has stuck a garden hose in my chest and overfilled my chest cavity. During one exacerbation of my illness, an echocardiogram showed a bit too much fluid around my heart, but it is unclear whether this was at all relevant. The chest discomfort is also relieved by Lexapro (and lying flat).
Nausea: I’ve found ginger helps. (I buy ginger chews at my health food shop.) I’ve also found help from peppermint oil (smelling it). It helps to eat small amounts often. My physiotherapist can also relieve this symptom by working the thoracic area of my back (around T12).
Things I haven’t worked out: The sicker I am, the more difficulty I have with my speech. I have problems with word-finding and slurring; sometimes I put the wrong words in sentences, and sometimes I structure my sentences as though English is my second language. I’ve only had panic attacks when trying to speak. I think I’ve tried everything to fix it; nothing has worked.
My bladder symptoms resolved slowly after my last exacerbation. I don’t know why; these symptoms were unexpected, and I thought they’d be permanent.
Small seizures came and went without explanation over an 18-month period in my early forties.
Sometimes my heart rate is irregular, irrespective of how well I manage my illness, and this increases fatigue. If my heart races for whatever reason, sometimes my heart rate stays up for hours. My brain doesn’t send the message that it’s time to slow down, and I haven’t yet found a way to settle it myself.
My gut doesn’t work well. I no longer expect it to.
I haven’t yet found a form of exercise that I tolerate.
Flying aggravates my illness; I don’t know why or how to fix it.
I’m cheerful, even when I’m very sick. I can feel sadness but not joylessness. Am I physically incapable of depression?
I used to dream of a diagnosis that would lead to a cure. Then, I’d live a full life. I’d get fit, climb mountains. Instead, I find myself climbing the same mountain I always have - just no longer blindfolded and alone. My illness still challenges me every day. It seems to have progressed, but a diagnosis has meant that I can now help myself. I can now optimize my functioning by preventing, managing, and treating my symptoms. I now have access to scientific literature that is relevant. Importantly, I now have access to other people’s ‘stories.’ These have been an important source of comfort, information, and support. I want to thank everyone who has taken the time to share their story. I’m really pleased to finally share mine.