If I asked you based on the list of symptoms for dysautonomia if you had it, I bet 100% of you could say yes at one point of another because 100% of you have had all the symptoms at one point or the other. That is until I explain how it really feels for us [people with dysautonomia]. You see that's why dysautonomia is so hard to diagnose. Because it is a set of "non-specific" symptoms, that "don't relate to each other" to the doctors eye that sees you for a cough one day, then a numb foot the next day, then a fast heart rate the next. What the doctor doesn't realize is these are all very specific and related symptoms. Just not in a way that they are familiar with.
You see Dysautonomia is a syndrome; therefore, there is a big collection of symptoms that distinguish dysautonomia. Then there are sub-types of Dysautonomia and each of those have certain symptoms. The symptoms I am basically going over are from Postural Orthostatic Tachycardia Syndrome (POTS) and Orthostatic Hypotension (OH) which some doctors group together and some separate. OH is a drop in blood pressure of 20/10 so like this morning my blood pressure went from 120/105 to 100/69 which was a drop of 20/36. The POTS part is a raise in heart rate of 30 beats per minute at the same reading my heart rate went from 80 beats per minute to 120 beats per minute so it rose 40. Therefore, I definitely meet both criteria.
The symptoms are widespread because the autonomic nervous system plays an extensive role in regulating functions throughout the body. You can think of the autonomic nervous system as doing anything that is automatic in your body like breathing, blood pressure, heart rate, temperature regulation, digestion (eating), sweating, going to the bathroom, etc. Basically anything you don't have to think about or that your body does naturally, my body does wrong. A lot of these symptoms happen after a prolonged period of standing only, and all the symptoms vary person to person.
Now I'm going to go through them all one by one and explain how they affect my life and you can see if it's the same for you.
By the way, this symptom list was obtained from The Dysautonomia Information Network and is a great source of information if you feel you or someone you know may have Dysautonomia, or if you want to learn more about it!
Symptoms probably related to cerebral hypoperfusion (Which means decreased blood flow in the brain because all the blood in our body pools in our legs and abdomens usually)
- Lightheadedness: This is usually not just a like the room is spinning, I'm a little dizzy lightheadedness. It's usually a can't get out of bed, or I'm gonna throw up lightheadedness.
- Fainting or near fainting: fainting means you are completely unconcious, nothing is getting through to me, sometimes my heart stops. I have no idea what is going on. I can also hurt myself if I faint on like say a bathroom counter, dog crate, etc. The worst I have ever gotten hurt was on a door handle, that hurt bad and I had a bruise for weeks. Near fainting is fun too. This is usually where I am too, but sometimes it's actually worse. Because I know what the almost faint feels like I can stop progressing all the way to fainting, but my body doesn't get to reset if I don't faint all the way. Near fainting (or pre-syncope as I call it) involves my vision going blank, getting unsteady on my feet, getting super nauseous, sweaty, all the blood goes to my face, and then drains from it fast, heart starts racing, and I know I have to get to the floor now. There is also a specific position I have to lay in or else I don't feel better, it's called the recovery position in CPR/First Aid training, coincidence?
- Generalized weakness: This one is basically how it sounds. You just feel weak all the time, you don't want to get out of bed, you can't get out of bed, you are weak. It is hard to move your legs, your arms, etc. This is so annoying because you want to do things, but you really can't.
- Palpitations: This is when you can feel your heart beating at a different (fast, irregular, skipping) rate than it should be. This pretty much is any time I am out of bed and walking around, or standing up, or going to the bathroom (like you needed to know that), or taking a shower, or anything. Palpitations, that never go away. Not palpitations every once in a while. Every day, if I'm not laying in bed perfectly still.
- Tremulousness: tremors. shaking of body parts, or muscles, or whatever wants to shake whenever it wants to shake, or convulse, or twitch. Usually when I'm tired or stressed or just bored, or when there are multiple noises at one time. Especially when there are multiple noises at one time after 8 PM (mom on the phone with my sister while the TV is on...ask her, it's not pretty).
- Shortness of Breath: and not just like a little winded. Like I turn over in bed and feel like I ran a marathon, and I used to run them, I know what it feels like.
- Chest discomfort and/or pain: I think personally I deal with more the chest discomfort than chest pain, although I have both. The chest discomfort is like an elephant is sitting on my chest, pretty much a lot of the time. That one is getting better and I'm not sure why, but hey, I'll take it! :)
Sudomotor sympotoms can include:
- Loss of sweating: I'm starting to head this way, it seems like no matter how hot it is, I won't sweat, and then I overheat, and then I pass out.
- Excessive sweating: Except at night, when I have night sweats and wake up in a pool of sweat drenched...how ironic.
- Delayed gastric emptying: This means that the food doesn't move through your digestive tract as fast as it's supposed to which could obviously cause discomfort. I had a gastric emptying test because we thought this was happening with me causing a lot of my GI problems, but alas it was not true.
- Bloating after meals: This is a huge problem for me. The theory is that all the blood rushes to the abdomen to help digest the food but then doesn't go away like it's supposed to. This is a huge reality to me. And then since all the stupid blood in my body is at my stinking stomach, there is none at my brain and it causes me to pass out or go to sleep within 45 minutes of me eating every time. Every single time.
- Nausea: All the time, for no reason. Or never. I will go days without being nauseous at all. Then I will go days where I can't stop being nauseous at anything. I do not understand this.
- Vomiting: Some people have cyclic vomiting syndrome or just vomiting in general with this. Thank the good Lord above I don't. I hate vomiting. I try everything to not do it.
- Abdominal pain: This again I believe is related to blood pooling and is very real for me. My abdomen is very tender all the time. And I have sharp pains all the time.
- Diarrhea (sometimes with alternating constipation): Yep, on both accounts. That's all you need to know.
- Constipation: Yep
- Bladder dysfunction: Yep
- Polyuria: Excessive urination. Yep.
- Pupillary dysfunction: sometimes both my pupils aren't even the same size at the same time. They also don't react the same way to light and dark that normal pupils do, people comment on it a lot.
- Blurred Vision: I get this a lot...sometimes it's scary because sometimes I'm driving, but don't tell...oops...
- Tunnel Vision: sometimes I get this, but not often, but when I do it's the weirdest feeling. Like everything is in one line and I can't see anything beside me, so weird.
- Fatigue: This is not like I stayed up too late I'm tired fatigue. This is disabling I can't get out of bed fatigue. Like every part of my body hurts because it is so tired fatigue. This fatigue is disabling. When I say I'm tired, you're tired can't compare, I guarantee it. Yet, I still manage to push through whatever thing I have to do that today, because I have to.
- Sleep disorders: Ha. That's all I have to say about that. I am tired and can't stay awake all day (but can't sleep because it's day time and there are things to do, like go to yet another doctors appointment). I can't sleep at night. I wake up feeling worse than when I went to sleep. Yeah. Sleep disorders.
- Headache/Migraine: I'm pretty sure I keep a headache all the time, and have a migraine from about 3-4 pm on every night. I just started topamax 2 weeks ago and it's been wonderful in curbing them, but they still aren't gone. But it's definitely helpful. Because they are definitely debilitating too.
- Myofascial pain--Fibromyalgia: Most people with dysautonomia have fibromyalgia. Fibromyalgia in and of itself is an excruciating debilitating illness and dysautonomia is too. The two together is ridiculous and unfair. The pain is unreal. It's like your body is on fire all day, every day. And when I say fire, I mean fire, that's the best way to describe it.
- Dizziness: As soon as I'm sitting, or mainly upright dizziness is on. I can barely walk in a straight line. I would most definitely fail a sobriety test.
- Tachycardia: This means your heart rate is above 100 beats per minute. Mine usually is. If it's not, it's pretty close. If it's not in tachycardic mode, I'm actually scared now, because I feel worse when it's low because I've gotten so used to it being high.
- Exercise intolerance: This is not like I hate going to the gym so I'm intolerant of it. This is like the gym kills me, and it might. Or at least make me pass out. But I will run (walk, crawl) a half marathon with this. A friend and I are making plans. Because POTS can suck it!
- Clamminess: hands, feet, arms, legs, everything, clammy, all the time. for stupid reasons or no reason. all the time. even now. while i'm typing.
- Anxiety: This does not mean we have anxiety like the psychological disorder separately from our dysautonomia. It means that this huge, long, list of symptoms that isn't even done yet, all happening at the same time kind of makes us a little on edge and a little nervous...so yes we are anxious, but no, we do not need to be labeled as having only anxiety and be sent home with no help from the ER.
- Flushing: how many pictures have you seen of me with my face bright red? How many times have I been asked if I had a sunburn? That is not sunburn, that is flushing. It means all the blood is flushed to one area of my body (usually flushing is in head and chest). Usually it's a reaction to something, and usually this isn't a good sign.
- Postprandial hypotension: I already talked about this sort of under bloating. But it's low blood pressure after meals. All the blood goes to our stomach, so there is no blood in our brains, so our blood pressure drops. So we get faint feeling, or faint, or have to take a nap immediately to recover.
- Blood pooling in limbs: I've talked about this sort of. But it's the main event with POTS especially. When we stand up, for some reason all the blood goes down to our legs and abdomen and doesn't know to come back up. So it "pools" in our legs, and abdomen (if we are sitting. This makes your legs feel really buzzy feeling and heavy and they turn really dark red and purple and can be like mottled and very painful.
- Intolerance to heat: This is a biggy in the summer. Personally, I can't be outside if it's hotter than about 75-80 degrees for longer and about 5-10 minutes before I not only get really, really hot...but also get nauseous, get a migraine, get dizzy, and feel really unwell. This goes back to the whole I can't sweat thing, so I can't cool down properly.
- Feeling cold all over: Even though I feel hot all the time outside, inside I'm cold all the time. And wear winter clothes all the time in the summer and have lots of blankets on my bed.
- Low blood pressure upon standing: Yeah, you saw what happened this morning already.
- Cognitive impairment: This is most commonly referred to us as "brain fog". Let's just go over some of my most recent examples. 2 weeks ago I called my car a guitar, today I tried to open a door (like with a knob) with my car unlock clicker thing, I get lost coming home frequently, and frequently forget where i'm going when I leave the house, and those are just some of the less embarrassing examples.
- Narrowing of upright pulse pressure: Pulse pressure is the number between the systolic and diastolic numbers on your blood pressure reading. Typically your pulse pressure should be between 30 and 40. As you can see, this morning mine was 15 at one point (narrow) and 69 at one point (very wide--this is also bad).
- Cold hands: My hands are always cold. doctors have always commented on it, but never diagnosed me with anything.
- Hypolvolemia: This means low blood volume. This is why we commonly get saline infusions as a treatment. My blood volume is frequently low. Currently, I get two liters of saline every week to bring it up.
- Chills: I get these a lot. I have goosebumps a lot. And I get deep chills to the point where it makes my whole body shake and people look at me weird. I have to just act like nothing happened.
- High blood pressure: I sometimes have really, really high blood pressures...like 161/127. But it is also believed I have HyperPOTS (which is another story) but it comes with really high blood pressures. So that explains that.
- Hyperventilation: breathing really, really fast because you feel like you can't catch your breath. I do this one all the time. And it usually ends up in me almost passing out or choking and having to cough to make myself breath right again. This one is dangerous because if you hyperventilate too much, you can deplete your Carbon Dioxide levels and go into alkalosis and die.
- Numbness or tingling sensations: This is very, very common. Especially in the extremities My hands and feet are almost always numb. Lately my left foot and leg up to my knee have been numb and tingly all the time. It's more annoying than anything else.
- Low back pain: All the time. It will not go away. I do not know why this one is though.
- Aching neck and shoulders: Again, all the time. It will not go away. But I don't know why this happens.
- Noise sensitivity: This is a HUGE one for me. If I hear 2 noises at once I will silmutaneously jump out of my skin, have convulsions, and become a not so nice person all in about .5 seconds. If I hear one noise I don't like same thing. Noises are a huge thing for me. I hate noise. Noises are rude. They make me nauseous too.
- Light sensitivity: Another huge one. I wear sunglasses all the time. Even when it's pouring down rain because the rain is too bright. Fluorescent lights can die.
- Disequalibrium: This is obviously being off balance and I've already talked about it some. But it's bad. Yesterday, I was at the chiropractor and couldn't even turn from my back to my side without almost rolling off the table because my balance was so off.
- Arrhythmias: These are irregular heart beats...I have them quite frequently, but they aren't usually dangerous for us. But they happen a lot.
- Chemical sensitivities: This is a big one too. I am really sensitive to med changes, so when we decided to change all my meds this month at the same time and add some new ones it was a big deal and my body is not enjoying it. Also, smells like in detergent, perfumes, people who smoke, etc. really bother me. Now here is the weird part, if I put it on (I love body spray on me) it doesn't bother me, but on other people it makes me nauseous and have a migraine immediately even with the smallest drop.
- Easily over-stimulated: As I said, two noises, big trouble. Too much information in school, big trouble. 2.5 hour thesis, meetings big trouble. Driving 1 hour, big trouble. You get the picture.
- Feeling full quickly: well, this is really true right now, with Topamax being started. I eat hardly anything, but before then even I got really full, really fast.
- Feeling "wired": for someone who has as little energy as I do, I get these weird spurts. And I just have to do everything in the entire world all at the same time. They usually come on between like 8 pm and 3 am so I'm thinking they are cortisol related or something. But they definitely show up.
- Food allergies/sensitivties: So far we know I can't have gluten because of celiac. But I'm having a really hard time eating right now and i'm wondering if it's specific foods or the dysautonomia acting up. I really wanna try an elimination diet, but I'm too chicken.
- Hyperreflexia: is an exaggerated response of the deep tendon reflexes meaning that when someone touches you in one of your tendons there is a large reaction and response. This would probably be done by a doctor. I know I have this. Just ask my PT or my chiro or my rheumy about my right trap.
- Irregular menstrual cycles: mine is so irregular they won't even let me have one anymore, and that's all you need to know about that.
- Loss of appetite: Did I mention I'm eating less than 1000 calories a day right now.
- Loss of sex drive: wouldn't know about that one, but I'm guessing it would be gone.
- Muscle aches and/or joint pains: every joint and muscle 24/7. Pain is very real and very much not in people's heads.
- Swollen nodules and lymph nodes: I do not have any of these right now...thank God :
- Polydipsia: This means excessive thirst. Me nor my mom cannot remember a time in my life looking back (now that we know about this symptom) that I did not have a drink in my hand. Seems to make sense now, didn't really think about it then. Maybe should have.
- Weight loss or gain: Well let's see. October 2011, 99 pounds; January 2012, 120 pounds; June 2012, 180 puonds; January 2013, 203 pounds; July 2013, 181 pounds. Yep. I'd say that's some weight loss or gain.
- Restless Leg Syndrome: I'm on meds for this. But it still happens. And it's annoying. I really don't like the feeling of not being able to keep things from not moving when they aren't supposed to or where they aren't supposed to or whatever.
- Feeling detached from surroundings: Since about high school I've always felt like I was in a video game and that's the only way I knew how to describe it. But this is a better phrasing. But I always feel like I'm not really in the world. Just kind of like here but not making my own choices, like someone else is doing everything else for me. Like I'm a puppet and God is pulling my strings. But I think that's a good way to feel.
Dysautonomia symptoms can vary from day to day. It's like we are on a roller coaster One day I will have a super good day and be able to do whatever I want, the next I won't be able to walk to the bathroom by myself. It really is a frustrating syndrome for this reason. The symptoms tend to multiply and become exaggerated upon upright posture. This is why if you look at the list of symptoms without an explanation and without an understanding that a person with Dysautonomia suffers most of these symptoms almost 24/7, or a combination of these symptoms almost 24/7. With all of these symptoms it's very hard if not near impossible to live life at a functioning level. It would be nice to get off the roller coaster any day now. I would like to stand on the platform for a while, that's for sure!
Disclaimer: If you are suffering from some of the above symptoms, you need to seek professional help (click on the above link for the Dysautonomia Information Network and they have doctors listed by state that are approved to diagnose and treat dysautonomia). Please do not attempt self-diagnosis.