Dysautonomia Symptoms

I know that my presyncope when standing up is not normal, but it is not the only symptom I experience. After learning about Dysautonomia, POTS, and Orthostatic Hypertension, I realized that some unrelated symptoms actually do have a connection to autonomic dysfunction.

Through very close observation, I managed to describe as many symptoms and situations as I could.

Situational

Standing up: Heart rate increases ~40+ resting rate. Tingling in extremities. Feel dizzy. Lose balance. Loss of vision, noisy blackout, from the sides to the center. Need to rest on something. Headache. Feel weak. Palpitations, can hear and feel heartbeat within head. Pressure on eyes. Symptoms fade out after 10 seconds. Heart rate remains high for a few minutes. Vision seems to lower its framerate—don't know how else to describe it—everything seems to be flashing. Worst is standing up after waking, HR is the highest of the day, symptoms feel less severe as the day progresses/had physical activity, back to severe when tired, hot day, cold day, stood for too long, showered. Sitting or lying down prevents flare up, heart rate drops almost as fast as it rises. Hyperventilating helps. Results in presyncope only. Began occurring around 13 years old.

Showering: I like hot showers, sometimes turn shower fan on to avoid the room getting too hot, regret it immediately as I begin freezing. Make water hotter to counteract cold from fan but it raises heart rate. Standing is exhausting; frequent bending to wash, shave. Arms begin to hurt when washing hair. Feel like doing nothing after; I like showering at night. Don't shower very often due to symptoms. Once, heart rate reached 210 upon getting out of shower, massive chest pain/vacuum feeling.

Walking: Elevated heart rate despite low effort. Long distances are exhausting, need to hyperventilate. Sweaty. If distance is too much, too much elevation I begin to feel dizzy. Sitting down makes heart rate go down, feel 'zoom out' effect the ground and surroundings appear to be moving, getting away; mom experienced it while standing on a cliff, looking at far away trees.

Workout: Love it, I like running, jumping, sometimes when just going for a walk I begin running and jumping because it makes me happy, but makes my heart rate reach 180+. Sit-ups are unbearable, was able to do them beginning grade school, but eventually cannot do them without feeling extreme fatigue, and dizziness. Used to run very fast, I can still do it but not for as long, because of rising heart rate. 80 to 180 in just 5 minutes. Once, 16 minutes of tennis outdoors made my heart rate reach 201 bpm.

Stretching: Triggers standing up symptoms, but much more severe. Can feel symptom flare up, thus know when to stop stretching. If I don't stop I lose consciousness entirely, fall to the ground. Recover about 15 seconds later, I get up like nothing ever happened. Sequence: Tense muscles, HR okay; hold, HR okay; release pressure, HR shoots up. BP unknown.

Singing: Hands and fingers go numb after singing enthusiastically for a while. HR above baseline, not too much. BP normal. Might have to do with oxygenation, CO2.

Drinking: Drinking something makes my HR go up, ~20+

Delusional Episode: That’s what I’ve been calling them for a while. Long periods of time when I feel extreme fatigue, big headache, body pain. I lay down the whole time, eyes closed, doing nothing. Move really slow, lay in awkward positions. Feel ‘gone,’ cannot think, unconscious comes close but it’s not the right term, make weird noises. Very hard to describe, cannot remember exactly what it feels like. Happens maybe once every two weeks, I really don’t know.

08/26/24: Watch measured HRV while in one of these episodes: 186 ms, which is unusually high. I was lying on the couch for some 40 minutes in this state, I didn’t feel capable of standing up and doing exercise. I didn’t feel in control of my body, I was facing down with cushions under me and even though it was uncomfortable I was not able to correct my posture. Limbs were falling off the couch. Did some indoor cycling; my heart rate remained strangely low and I felt okay so I kept exercising, I reached 180 bpm after 20 minutes, stopped, and when getting up I felt the worst palpitations I think ever, it hurt so much. Spent rest of day with decreased awareness; I had to drive, it was not a good idea. At night my legs were twitching, I felt my body being shocked; I began hearing weird sounds, like the background noise of a public area, I was slipping in and out of sleep.

Sensory

Very anxious, very scared: Slow loss of vision; everything begins darkening except highlights, such as sunrays, sunlight hitting the ground, which appear to get brighter, like an overexposed photograph. Drunk speech. Cold sweat. Cannot control extremities. Really close to loss of consciousness. Heart rate unknown. Happened when I got my ears pierced, almost every time I get blood drawn for labs, and once when being taken way too many dental x-rays (the stick they ask you to bite was hurting my gums very bad, but I said nothing.) Similar, 08/28/2024 - After hyperfocus session in clean up; I washed the dishes way quicker than usual, I couldn't feel any discomfort, then cleaned up my bathroom and entire bedroom, frequent kneeling and going upright; upon sitting down I began feeling the loss of sensation, cold sweat, intense nausea; I threw myself at the bed for some minutes; made me realize that worst situations are when I do not exhibit my usual symptoms I tend to believe that my body is handling the effort just fine, which leads to overexertion, and triggers the worst-feeling symptoms.

Cold day: Cold feels unbearable. Nose drips almost all the time. Cannot feel fingers even when wearing gloves, they either turn red, or really white. Nose turns really red. Intense shivering sometimes, mandibular, body shaking. When I cover myself to heat up, eventually begin sweating despite still shaking from cold.

Hot day: Very sweaty, more than those around me. Drives my heart rate up faster. Cannot stand sunlight, going outdoors from indoors. Yet, survived Dead Sea heat (50 °C,) felt dizzy walking around, heart rate remained surprisingly okay, I had some mysterious energy, running up the rocks.

Loud environment: Makes me lightheaded. Headache. Need to run away. Continued noise is okay; sudden loud noises, lots of people talking at once, people shouting at each other triggers it. I’m autistic so it might be SPD.

Other

Generalized pain: Like soreness all over body, worst in legs, arms, sometimes moving is painful, I prefer to lay in bed.

Hiccups: Somewhat frequent. They happen very intense and with a high frequency, every ~5sec. Throat hurts, hard to breathe, loud. Lasts for 20-30min.

Red hands: (livedo reticularis, mottling?) Sometimes; cannot determine trigger yet.

Goosebumps: Mostly when general pain is stronger than usual, tired or anxious. Feel my skin 'tap' many times around the same area.

Head shake: My head shakes violently to the side, mostly to the right, when I really need to go to the bathroom. Usually the first sign that I need to go. Attempting to reenact it doesn't achieve how fast my head really shakes when it happens.

Tingling: Tends to coincide with generalized pain. Hands and feet. Feels like extremities falling asleep, but not entirely. Ability to feel textures reduced but not fully. Also when lying down with legs on wall, legs begin feeling cold. Rarely, it continues for hours, even with continued movement.

Cramps: Mostly legs, when moving my feet or toes too much upward.

Feel heartbeat elsewhere on body: Most times this happens I feel my heartbeat in my head, feels like its pulsating. I have felt it in my hands and feet too, as if my heart were to be there, don't know how else to explain it. And when very fatigued my vision distorts following my heartbeat.

Whining: When half asleep or about to wake up. Feels uncontrollable, sometimes I don't even realize I've been doing it until it gets very loud and wakes me up, or someone throws a pillow at me.

Something in ear: My ear sometimes appears to be blocked by something, feels like pressure/air. Makes me able to hear my own voice and respiration inside my head and is very annoying. Lasts for hours. When bowing down, the effect stops.

Speech nuances: Might be related to autism. Speak in short sentences. Frequently pause between words. Repeat first syllable like 10 times before saying word sometimes. Combine two words when planning to speak another. Sentences come out differently than planned sometimes. When nervous or on specific days I just can’t speak; broken grammar, talk very quiet, big brain fog.

Frequent complaining/groaning: Yes, I know! Consider that standing up makes my heart rate rise like I’ve begun running a marathon, how many times do you stand up per day? My heart rate hardly goes down if I continue normal activities until I lay down. It drains my energy, makes my body ache. The first thing I want to do first thing in the morning after getting up is laying back down because that’s the only thing that returns my heart rate to what it should be. Getting up to do something is genuinely exhausting and the flare up is painful, so yeah, there is going to be some groaning from my side, which my mom despises. I’m not a pessimist, lazy; I live with this terrible chronic pain that keeps being ignored. Not a clue about how to work this out with her. An official diagnosis of my autism didn’t change my mom’s lack of recognition of my symptoms.

Nosebleeds: Used to be really frequent. Could happen at any time, though it was more common at night, when it happened at school was the worst, maybe in a car was worse—no trash can. I would feel my nose running, or sometimes I would catch the blood droplet with my hand. I knew I had to make my way to the bathroom and have available a whole box of tissues. It would last for around 30 minutes, with a drop coming out around every 2 seconds. It left endless, my hands and face would be covered in blood, so would the trash can I would be hunched over. I would plug my nose with tissues but eventually would feel blood in my throat. I would feel very dizzy, stomachache, nausea. Doctor recommended Vitamin K pills and nose ointment, I don’t think they helped. It’s not happened in about 2 years. In winter when my nose drips all the time I get scared that the flow I feel will be blood.

Extraordinary:

Alternation between POTS symptoms and Orthostatic Hypertension symptoms: Some days my heart rate does not increase to the levels usually observed. Instead, it is my blood pressure which increases to levels consistent with OH diagnosis. Perhaps conditions coexist; both are related to dysautonomia. Only have detected one day, since I just began symptom tracking. Mix of systolic and diastolic blood pressure increase, both can increase sharply though not at the same time. HR in previous days tends to climb less severely but no significant increase in BP. Symptoms tend to remain equal; palpitations, chest pain/tightness, pressure in my legs, headaches, fadeouts.

Triggers:

House cleaning: Vacuuming, putting things away, dusting.

Walking from car to classroom:

Route 1: 200 ft, overall going down, around 6 minutes. Light sweat. HR unknown.

Route 2: 300 ft, 50 ft elevation, around 10 minutes. Lots of sweat. HR last attempt 174. Blurry vision, brighter. Hyperventilated. Very pale. Slurred speech.