Because so little is known about dysautonomia, there are a lot of misconceptions out there! I wanted to address ten of the most common ones here.
#1: Dysautonomia = POTS
As I discussed in my “What is Dysautonomia?” post, there are many different types of dysautonomia! While many people with dysautonomia do indeed have POTS, especially younger people, it’s only that way because it’s one of the most common types.
Dysautonomia is an umbrella term, meaning there are many subcategories. Dysautonomia International has thirteen distinct types listed on their website, and they state “this is not an all-inclusive list.” There are so many different types, and types still waiting to be classified and studied.
Currently, I have to say “I have dysautonomia” because my symptoms don’t fit with an established type. It’s definitely dysautonomia. Maybe someday in the near future we will have a type discovered. You can help me find answers to my dysautonomia puzzle by donating to Dysautonomia International here! (There will also be a link at the bottom.) DI is the leading organization funding dysautonomia research, and over 70 million of us need that research! (I am not getting paid to promote them or anything, I just really want a cure or at least effective treatments!)
#2: You Pass Out with Dysautonomia
While many forms of dysautonomia can cause people to pass out, it’s only a diagnostic criteria for neurocardiogenic syncope. Many doctors also think that passing out is something that happens with dysautonomia and/or POTS (if they’ve ever heard of it), so this is an extremely pervasive myth!
With POTS, many patients do pass out, or come close to it, because their blood pressure plummets and heart rate skyrockets when they stand. If enough blood isn’t reaching your heart and/or brain, your body makes you pass out so that it has an easier time moving the blood where it needs to be. Some people with POTS do not experience any blood pressure changes/problems at all, and others have high blood pressure! POTS is diagnosed with heart rate (the “t” stands for tachycardia, which is a high heart rate), and a high heart rate alone does not usually cause someone to pass out.
Personally, I have hypertension and orthostatic hypertension with mild tachycardia. I have never lost consciousness (even prior to dysautonomia), and likely never will. If I do ever pass out, I will be going straight to the ER because it will be a sign that something has dangerously changed in my body. However, one of my best friends (Em) can pass out several times a day – before she was put on daily IV saline, she would pass out 10 or more times a day. Even on the IV saline, Em has to be extremely careful when standing or walking. Some other people I know are permanent wheelchair users because if they stand for even a second, they are guaranteed to pass out. And some people I know only pass out occassionally, like once a month or so.
Fainting is definitely something that people with dysautonomia can experience, but it’s not something that is “required” for us.
#3: People with Dysautonomia are Lazy
Actually, many people with dysautonomia want to do ten million things at one time. Our minds have a constant to-do list running through them, with everything we want to accomplish, but our bodies make it impossible to work as hard as we want to.
When your body is struggling to do everything that should be automatic, it leaves very little energy to do anything else. If you can’t circulate enough blood to your brain while upright, you honestly have to lie down! Most of us actually hate having to spend all of our time on our backs, but we don’t have much choice.
You can tell we’re not lazy by what we push our bodies to do on “good” days. When we have a “good” day, often times we’ll push ourselves to the point of collapse trying to accomplish our entire to-do list at one time. That’s not good for our bodies, but it’s very common.
When you have the flu, you rest so your body can heal. If you have a permanent/chronic condition, your body needs the same rest so it can function – but you never heal.
#4: “You Don’t Need a Mobility Aid!” (or handicap placard)
This ties in with the laziness thing. Many people look at a young (read: not a grandparent) person and automatically assume they’re healthy. Dysautonomia is completely invisible, and can affect anyone of any age. There are no braces for dysautonomia, and compression socks aren’t obviously performing a medical service – and not everyone gets symptom relief from compression wear anyway.
Sometimes, it’s almost impossible to walk from the car into a store, let alone walk around through a store. Sometimes, you’ll have energy to walk for about an hour, but you want to go to something that would require you to get around for eight hours. Because of this, wheelchairs or other mobility aids can be completely invaluable!
I use motorized carts at the store quite frequently because I get very sick when I do shopping. I also have a transport chair, and use it to get around various places (such as the zoo or museum) because walking/standing for very long is extremely painful and difficult. I can stand up from my chair and walk if I need to or can’t reach something sitting. When my sister took Dan and I to the San Diego Zoo, I used my chair. However, I had to get up several times because there were some hills that were too dangerous for Dan to push me down/up. Without my wheelchair, I could not have gone at all, because I could not walk for that long or that far.
If you see someone using a mobility aid without a visible injury or when they’re young, leave them be. It is not your job to police the mobility aids or parking spots, and it is not our job to prove ourselves to anyone that asks. If there isn’t a placard on a car, then call the non-emergency police line so they can be ticketed. Otherwise, leave it be.
NOT ALL CONDITIONS ARE VISIBLE!!!!
#5: Dysautonomia is Caused by Deconditioning
This is just not true. In fact, many people with dysautonomia were extremely active prior to getting sick. You could literally go play your sport of choice one day, and wake up the next day with dysautonomia symptoms you’ve never experienced before.
While dysautonomia is not caused by deconditioning, it can cause deconditioning. Dysautonomia symptoms can leave a person bedridden, and the total lack of physical activity can cause muscle atrophy and worsening cardiovascular symptoms. That is why it is so important to get diagnosed quickly, because the longer you’re totally inactive the worse it gets! Without knowing why your body is behaving the way it is, it’s scary to try to do anything (in fact, I thought I was coming down with something so I was resting a lot in the hopes of getting healthy again).
To prevent deconditioning, do gentle exercises while either seated or lying down. Pilates floor exercises are great, and so are seated leg exercises. The exercises don’t need to be very difficult, just something to keep you active.
#6: Exercise Hard; Push Through Your Symptoms
Do not do this!!!!!! I actually had a doctor tell me to “just push through” my dizziness and tachycardia so I could “get better.” That advice didn’t seem right to me, so I was researching it. It actually turns out that exercising too hard can cause a permanent worsening of our condition!
Exercise, however, is essential in helping to improve your quality of life and prevent your condition from getting worse. Gentle exercises that do not flare up your symptoms are recommended – especially those that can improve circulation (like increasing leg strength since the muscles in the legs help to circulate blood back to the heart). Core strength is also crucial in dysautonomia, because it helps keep blood circulating.
My favorite exercises are Pilates exercises. There are standing exercises, but my instructor (who is also my physical therapist) limits those as much as possible to prevent symptoms from flaring up. Mat exercises and reformer exercises that have my sitting or lying down have been the most beneficial. Pilates primarily focuses on core strength, but almost every exercise works many muscle groups at a time.
You can also use resistance bands while lying down or seated to help build up strength in a gentle way. I’m sure there are many YouTube videos with reclined routines that you can watch (and resistance bands can be purchased extremely cheaply).
A good cardio workout is swimming because you’re not upright while doing it. However, if you pass out when exerting yourself, have someone supervising you closely so you don’t drown. Also, be very careful when getting out of the water. The pressure the water exerts on your body helps with circulation, and removing that pressure (by getting out of the water) can cause you to have a rapid drop in blood pressure and pass out. Use the steps and slowly move one step higher until only your feet are in the pool. At the very least, make sure someone is watching so they can catch you if you pass out. Either way, I recommend sitting on the edge of the pool for a few minutes before going to get your towel.
#7: “[Insert Item Here] will Cure You”
There is nothing in the world that will totally cure dysautonomia, at least not yet! (Donate here to help us find a cure!) I don’t care what is inserted into that statement, the answer is always “no it won’t.” On top of this statement being untrue, it’s extremely frustrating! We have tried everything to help ourselves, everything we ran across on the internet that made even one iota of sense, everything our doctors have suggested.
Your suggestion of yoga, eating “better,” trying special diets, doing a detox, using a specific supplement, being more religious, being less religious, burning incense, using substances, not using substances, not taking so many “toxic pills,” etc, just irritates us and makes us want to scream. We work closely with our doctors and research everything to death. Some of your suggestions could actually make us a lot sicker (yoga involves a lot of orthostatic changes and could cause serious injury) or will definitely not work with our specific combination of conditions and body chemistry.
Also, please stop calling the medications that keep me alive and functional “toxic.” Yes, since you don’t have the conditions I have, the pills would be very dangerous for you to take. However, these “toxic pills” are literally allowing me to live. Stop shaming me, because if I stop taking them, then I’ll get a lot sicker and won’t be able to function.
If you really want to help, you are welcome to ask what you can do. Hearing a “what can I do to help?” is one of the best things in the world to hear! Offering a specific task that is hard for us to do is a lifesaver! If you know we struggle to pick up groceries, ask if we could make you a list and give you some cash so you can pick them up for us. If you know we struggle with the bending and moving that is required for laundry, offer to come do the laundry for us if you have some time. Don’t suggest treatments. If you are doing actual research, you can ask us if we saw something, but never say “you should do this.” We just need some understanding and good friends.
#8: People Need 8 Glasses of Water a Day
First off, this isn’t true for anyone. While the average fluid requirement is 8 glasses (64 ounces) for adults, that’s not what you actually need. It is recommended to drink between one half of an ounce and one ounce per pound of weight, so if you weigh 150 pounds then you should get between 75 and 150 ounces of fluid. (Drinking one ounce per pound is the recommendation if you live in a very dry area and are quite active. In general, I hear the 1/2 ounce per pound recommendation more often.) I was always taught “POPC” – urinate often and clear. If you’re drinking enough fluids, your urine will be almost clear to clear because your body will excrete the extra fluids.
Also, did you notice I keep saying fluid? You don’t have to drink water. While water is good for you, it’s okay if you can’t stand it (I can’t). Part of the reason you should drink water, is because you don’t want to be drinking empty calories. And yes, caffeine is a diuretic, but to get enough caffeine in a fluid for it to negate the water, you’d be drinking almost straight caffeine. In school, my nutrition teacher was saying that if you’re really sensitive to caffeine and it causes you to have the runs, then just count it as 1/2 the fluid (so an 8oz cup of coffee would be 4oz of fluid). But, in general, you can count every single fluid you drink ounce per ounce.
Now, if you have dysautonomia, odds are you need even more fluids. Part of most dysautonomia types is that you dehydrate extremely quickly and/or have hypovolemia (where the amount of liquid in your blood – plasma – is too low). This means we require more fluids than normal.
I have found that to POPC, I have to drink more than 3 liters (about 100 ounces). If I’m awake for a short period of time and not very active, 3 liters will be enough to hydrate me. However, if I’m even semi-active, I need closer to 4 liters (about 135 ounces) or more! Four liters is more than a gallon. Sometimes, I cannot actually drink enough in a day to get hydrated (I have consumed more than 5 liters and still been dehydrated). Many people with dysautonomia actually have to get IV saline because it is physically impossible to drink enough fluids for them to get hydrated. I know some people that have to have 3 liters of IV saline in one day to feel okay, and some people just need one or two liters a week to help make up for the deficit.
Yes, I do need my water bottle everywhere I go. Yes, I am constantly thirsty and need to be drinking almost constantly. Yes, I need way more fluid than you do.
#9: Increase Your Salt Intake
This is common advice given to people with POTS. (This video explains “standard” POTS very well.) Salt helps increase your blood pressure by drawing water into your blood vessels and increasing plasma volume. If you have severe hypovolemia, or an extremely low blood pressure, than increasing salt is a great tip. However, many health conditions can be dramatically worsened with an increase in salt.
My dysautonomia comes with hypertension – high blood pressure – and increasing salt in my diet increases my blood pressure and makes me sicker. There’s a type of POTS called hyperadrenergic POTS that most often causes hypertension. For people with hyper-POTS, increasing salt can be dangerous.
While increasing salt in my daily diet can make me a lot sicker, if I’m out and about on a hot day, I need to consume more salt than the average person. For me, increasing salt when I get dizzy or experience other symptoms can provide me relief, but increasing it in general is a terrible idea.
An increase in salt is not a one-size-fits-all recommendation. This is something that some health professionals also forget. Know your body and what happens to it if you increase salt, and follow what your body says. Reminding your health professionals why you can’t have a high salt diet may be what you need to do, and you may need to do it quite regularly.
#10: “You’re Too Young to be Sick”
This one makes me angrier than anything else on this list!
First of all, there’s no such thing, or places like Saint Jude’s Hospital wouldn’t exist. Like, seriously. If illnesses discriminated based on age, why would we need to have children’s hospitals at all?!
There are also tons of genetic conditions that make you more susceptible to other health problems. I have had generalized hypermobility spectrum disorder my entire life, and that is likely why I developed dysautonomia. However, I wasn’t diagnosed until August of this year because I kept hearing “you’re too young to have these problems.” Um, yeah, I realize they aren’t normal for my age, that’s why I’m trying to get help!
Anyway…
Dysautonomia is more frequently found in young people, especially in young females. It is estimated that every 1 in 100 teenagers will develop POTS. My high school had 4000 students while I was attending, meaning that there were likely 40 students in my school walking around wondering why they felt so terrible. (Remember how long it takes to get diagnosed, and how few doctors know about it? I wrote about it in my kickoff post. I can almost guarantee that almost none of those 40 students had a diagnosis or were receiving treatment.) Forty students is more than one entire classroom full! Think about your high school, your middle school, how many students were there? My husband is from Wyoming, and his high school only had about 2000 students (I think less when he was attending, but that’s how many there are now), but that’s still 20 students with POTS.
The pervasive idea that someone that is young is incapable of being ill, is toxic and prevents diagnoses and proper care! Even doctors carry this idea, and it’s a huge roadblock to getting the care that we need. We get brushed off as “exaggerating” or “attention seeking.” It’s not true! Being young does not mean you’re healthy! You can be any age and develop a chronic illness. Our symptoms are very real, and we are likely under-exaggerating because even we think “we’re too young for this.” This idea needs to die.
Help us dispel this myths about dysautonomia, and find a cure! Donate to Dysautonomia International, the leading funding source for dysautonomia research.
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