October is Dysautonomia Awareness Month and up until this past year I never knew too much about this condition. That is, until autonomic nervous system dysfunction was something that was thrown my way by one of my doctors. Over half of my life I have been dealing with heart issues in the form of supraventricular tachycardia as well as inappropriate sinus tachycardia. The past few years of my life have brought some more severe symptoms and that is when autonomic nervous system dysfunction, or dysautonomia, became a reality for me.
When I was about 14 years of age I began having episodes of supraventricular tachycardia and my heart rate would shoot up into the mid-200’s with no warning. This would happen from climbing a flight of stairs, playing sports or simply doing nothing. I am still shocked to this day that it took so long to find a diagnosis. I was told in my teens I was probably having panic attacks and should consider an anti-depressant. This puzzled me as well. Luckily I had competent parents and personally also refused this blanket treatment. I wasn’t familiar with having panic attacks but I was pretty sure this wasn’t it. I wasn’t diagnosed with SVT officially until I was in my late 20’s and finally made the choice to go into the hospital for an electrophysiology study where my cardiologist at the time would insert catheters into my heart and map my electrical system. I had a one year old at this point and I made the choice to be put under so I had the potential of being the mom I wanted to be. One who ran around with their child and didn’t have to worry about every move they made. It was discovered during the study I had an extra pathway that was causing the issues.
During my first electrophysiology study I had the extra pathway in my heart ablated (burned to the point of scarring) in hopes of blocking the electrical activity from occurring. This worked for 2 years however my SVT reoccurred and I went in for another ablation where I was also diagnosed with inappropriate sinus tachycardia. This ablation lasted one full year almost to the day before I had some short runs of SVT come back. I went into the hospital for a third time however this time the SVT was not easily triggered and I wasn’t able to have a third ablation performed. I currently live with the possibility of going into SVT at any point if the pathway was too deep to be properly ablated. While I have been told the fact that it was not recreatable might mean it’s not going to occur, I have had episodes that tell me otherwise. I have come to accept that I likely will never go in for another ablation and will live with my current state.
After both of my ablations I was suffering from an increased heart rate even while resting, shortness of breath that felt like I was completely suffocating at times, anxiety, extreme digestive issues and much more. None of my doctors could tell me much about this and my informal diagnosis came in the form of potential long term withdrawls from the medication I had been taking to prevent the SVT or side effects from the anesthesia I was on during my procedures. For my third EP study I chose a new cardiologist and he confirmed my diagnosis of inappropriate sinus tachycardia. However this time, prior to my study I had been going through extreme symptoms that included insomnia for hours each night, anxiety, shortness of breath, fatigue, very high resting heart rate, low blood pressure, feeling like I was going to pass out at times, at times I was unable to eat anything as my stomach felt like it had shut down and wouldn’t move my food, I had severe bouts of vertigo that caused me to throw up, migraines and acid reflux. At this point my doctor explained my inappropriate sinus tachycardia simply wasn’t about me having a higher heart rate than normal but it was a dysfunction of my autonomic nervous system and other bodily functions were also not functioning how they should. I was in a complete flare up of my condition.
Going home with a diagnosis such as this was overwhelming to me. I had prepared myself that I would either come home with another successful ablation or not. I didn’t think I would come home with new information that I would need to carry with me for the rest of my life. This condition is something I am going to live with long term. I have spoken to many people with the same condition and have read many stories. In some people, dysautonomia can mean their entire nervous system begins to shut down one part of the body at a time and there’s not always a way to reverse this. It took me some time but I had to realize that I was blessed to be in a state that was manageable to a certain extent. It has been determined I am not prone to passing out which in and of itself is a blessing. MANY people with this condition pass out when they have random blood pressure drops and will just fall right over no matter where they are or what they are doing. I will feel lousy with a BP drop but I have luckily never lost consciousness.
My nervous system dysfunction comes in the way of:
Inappropriate sinus tachycardia. My heart rate resting is probably not what yours is. Unmedicated mine is probably 20 beats per minute higher than your average person sitting down. Currently a low dose of beta blocker keeps it under control most days. Some days require extra doses as my heart rate can go from 70 beats per minute to 150 when I stand up. Nevermind if I try to complete an activity of some sort. When my heart rate fluctuates this brings a whole new host of symptoms. These are what I call ‘bad days’.
Shortness of breath. Some days being active brings this on and some days being active helps me. I have to listen to my body and respond accordingly. I was an avid yogi before this past year’s flare up so I am so grateful to have been blessed with the knowledge of diaphragmatic breathing, meditation, etc. These things all help me to breathe better.
Anxiety. When I’m feeling good things are right in the world. When I am ‘off’ my body will constantly go into a state of fight or flight and its usually over absolutely nothing in particular. I don’t sit and start panicking about actual events in my life. My body often decides it wants to panic and for no real threat at all. I have medication on hand for this but basically never take it. The only time I have had to turn to this is when I have a ‘nighttime episode’ as I like to call them. My body goes into a full panic mode while I sleep and I wake up beyond the ability to calm myself like I do any other time when I am awake. When I take care of myself I can usually avoid nighttime issues but there are still those nights where I wake up gasping for breath, confused, panicked, shaking, etc. I am thankful these aren’t typical symptoms I experience during the day. This is likely due to a drop in blood pressure while I sleep that causes my body to wake with a start, hoping to raise my BP.
Dehydration. People in my boat struggle to stay hydrated. I still am unclear why this is but you’ll always see me with a water bottle. I supplement Gaterade often because it helps me retain the water which I also have trouble doing. Tap water for me stays in my body better if I add a pinch of salt to it. When I’m sick, forget about it. It’s impossible to stay hydrated, my blood volume goes down and I’m done until I can get back on my feet and start again.
Digestive Issues. I am still experimenting with this one. Some days my stomach is slow to empty, some days I have reflux, some days my stomach hurts to the touch. I have to keep acidic foods to a minimum, I have to limit dairy. Currently I am cutting back on gluten which has helped simply because the whole grains I usually eat were just too hard to digest and many people with dysautonomia find relief by cutting out gluten. I eat small meals very frequently and try to keep my blood sugar up that way.
Insomnia. This comes and goes. I will go two full months where I am up every night at the same time for 2 hours and then I sleep well again for a few months. No remedies help this and I’ve learned to read, crochet or do something until it passes.
Fatigue. I need to get at least 8 hours of sleep a night in order to keep functioning each day. When I get less my health will start to decline at a rapid pace. When I’m really in the middle of a flare up and a number of symptoms are presenting themselves all at once I usually high tail it to bed right after putting my son to bed and sleep for 10 hours if I can. I usually wake up feeling a bit better, kind of like sleeping off an illness. Otherwise if I simply try to maintain a good amount of sleep each night I’ll be ok in the fatigue department. I do have to force myself to sit down throughout the day and do some kind of task seated. Running around for an entire day wears my body down quickly.
Pain. Some people have this symptom worse than others and luckily mine doesn’t happen often. When it does it’s usually because I have really pushed myself a little too much that week or I’m feeling under the weather for one reason or another. The pain usually targets my very lower back. It’s not the feeling of pulling a muscle or having a pinched nerve but extreme stabbing pain that shoots through my entire midsection. I am usually rendered immobile and I’m out for the count until it passes. I have also had sporadic nerve pain where certain parts of my body will have spasms or shooting pains but again, I’m lucky this isn’t a daily or even weekly occurrence. I also get occasional migraines but luckily not often. Dysautonomia sufferers often get them for days at a time, leaving them in bed and in a lot of pain.
Blood Pooling. This is one of the more annoying ones and I currently deal with it almost daily. I never had it before but it’s very common and I’ve been dealing with it off and on for a couple of years. Certain days I don’t do well standing. When I stand the blood pools in my abdomen (some people have it happen to their legs, etc.) and it prevents the blood from being where I need it more like up in my brain or at my heart. When I’ve stood for too long my stomach becomes rock hard, my breathing restricted and I’m off balance. Staying hydrated helps as does working out to condition my muscles. I have to stay conscious of this symptom and if I keep moving I’m generally ok. If I have to stand still in a line or at the grocery store it helps to cross my legs, shift my weight frequently or flex the muscles in my legs to bring blood up higher in my body.
Temperature Intolerance. This one is a little easier to manage in the summer than the winter. I overheat on sweltering days and feel very sick but I can usually manage by not spending too much time outside in the middle of a 90 degree afternoon and just sticking with morning or evening outside time. This isn’t unlike what a lot of healthy people do. Poor air quality days in the summer bother me though. In the winter I simply freeze. When it’s cold my body doesn’t respond to a cold temperature and it doesn’t keep me warm. I keep the heat in the house on, dress in layers and do my best. After showers I shiver for about an hour afterward and typically feel pretty lousy. I have to dress very warm for bed because if I don’t my blood pressure drops when I fall asleep and my body becomes even colder than it already is. This causing me a lot of problems including insomnia, nighttime panic, etc. I have slept in heavy pajamas, with a bathrobe on and fuzzy socks and still shiver.
Autonomic nervous system dysfunction can present itself in a number of ways and for a number of reasons. Some people are born with this condition while others develop it after a severe illness, pregnancy or other bodily trauma. Some people find relief over time while others steadily decline. For me, a variety of symptoms were always present but at a minimum. Mine started to get worse in my mid 20’s which is very common. When I was pregnant with my son I began to flare up and my heart rate was an issue. I eventually was on complete bed rest by the third trimester and to complicate it all I developed preeclampsia. My symptoms were worse after my son was born. While my cardiologist at the time assured me there were no risks to my ablation my research has showed me otherwise. My flare ups of IST and other issues post surgery may have been due to the ablation. Many people experience POTS, IST and other nervous system dysfunctions after having the procedure done. I also had a couple viral illnesses that made things worse.
Dysautonomia and dysfunctions of the nervous system are not something many people know much about. Many people are even walking around with this condition not feeling well but not achieving a diagnosis that will help them manage their health better. This is unfortunate but knowledge can only help in my opinion. I have personally found there are cardiologists and neurologists that are aware of these conditions but they don’t know how to do more than just treat the symptoms that present themselves. If you have heart issues they will medicate for that. Delayed stomach emptying has a medication as does acid reflux. Medications can raise your blood pressure as well as lower it depending on what end of the spectrum you are on. The list goes on. For me I have always struggled with the need for medication. I am the type of person who never liked to take an ibuprofen for a headache. I have never liked the side effects of medication and am extremely sensitive to taking things. I struggle daily with the fact that at 30 years of age I take 4 mg of a beta blocker twice daily. It is discouraging to me and feels like a crutch. I also know that it’s what I need to do to function. Without that medication I know I will be visiting doctors more often, I’ll be making trips to the ER and I will be suffering rather than living. I have a young son that I’ve been blessed to have in my life and it’s always been important to me to be able to function for him. Also I’ve been lucky enough to be a stay at home mom which allows me at least a little flexibility when I’m having a ‘bad’ day and sitting playing legos or having a movie night works for those days. Thank heavens for being a freelance writer and having a good steady amount of clients which has allowed me to work from home where I can be most comfortable, eat when I need to and take care of myself.
Knowledge is power and simply educating yourself and educating others will help people that are suffering from dysautonomia. A lot of research still needs to be done to understand this condition and doctors need to be more informed as well. There is help available and there are ways to cope but first a proper diagnosis needs to be made and my hope is that other people don’t have to wait almost 15 years like I did to find out what their condition is.