Me

I have some sort of dysautonomic illness.

I am an 18 year old female who started having episodes of tachycardia (160bpm+ resting) with no obvious trigger in August 2024 (around 8 months ago at time of writing). It slowly got worse for 4 months, until I was bedridden because standing up would shoot my heart rate into 130-150 range, and sleeping around 4 hours a night because I would wake up with palps/heart rate spikes (->120 IN MY SLEEP). My mother also started getting tachycardic episodes like this around the same time, but hers were much less severe, and stayed rare, whereas mine progressed.

My cardiological workups (several echocardiograms, EKGs) found no structural abnormalities, but did detect congenital long QT syndrome (likely caused by a mutation in my TRPM4 channels). I do not think "Long QT" is causing my symptoms, but it may be something related to the ion channels.

I got put on nadolol for the long QT, and the tachycardia was managed. My body struggled quite a lot to adjust to the nadolol (I was getting intense bouts of dizziness and lightheadedness + shortness of breath + headaches in the evenings + feeling like the world was suddenly dropping away when I tried to sleep), but after about a month, I became more stable and could walk and work and sleep again (yay!).

Since then, I've been stuck with shortness of breath upon exertion, episodes of intense vertigo and brainfog, random numbness and nerve pain, and mystery autonomic stuff that pops up every once in a while like "my right hand and only my right hand suddenly got quite red and veins dilated, and that continued for about 15 minutes, worsening upon standing, until it went away as quickly as it appeared".

Some other things worth mentioning about my general medical history/symptoms:

• I've had chronically swollen submental lymph nodes (2) for around 4 years, which have imaged fine (my ENT thinks one of them is a thyroglossal cyst I developed in adolescence? shrug)
• I have mild reynauds- my hands get purple and blotchy in even mild cold, and occasionally cold urticaria
• i have had occasional (every couple of weeks) numbness-sensations on the top of my right shin for at least 5 years, and sometimes this spreads to my whole right side. I've had an MRI and nothing was found.
• when I was 13 (5 years ago) I had several months of pulsatile tinnitus, icepick headaches, fatigue, vertigo, and migraines, where I would jolt awake at 2am much like I did at the beginning of the dysautonomia. no cause was found.
• yes, I got covid, but only once, and no complications. It was in 2022, and my main symptoms started in late 2024.
• I started having exercise intolerance (would get incredibly lightheaded after exertion) around 2023, which caused me to start and stop various sports. I was pretty active up until then, and much more sedentary after
• I've had at least a dozen "seizure-like" states where I suddenly find it hard to piece words together without effort, I get intense bodily and mental dissociation, it feels like I'm acting and moving entirely on autopilot, and sometimes stop functionally experiencing more than once every couple of seconds. I have not been worked up for these, and there are no obvious triggers (except maybe stimulants make them slightly more likely?)
• I am not on any meds other than nadolol, nor have I ever been
• episodes of bodily, followed by mental dissociation
• often just feel malaise throughout the day
• "cord" feeling in underarm, like axillary web syndrome but i havent had surgery there
• tongue just twitches/tingles sometimes (rarely)
• pain around my bottom left rib, sometimes twitching
• sometiemes my legs (especially just right leg) will feel unusually warm (usually sit extremely cold but sometimes will feel like theyre sitting in warm-bath temp water
• often get air hunger, especially in evenings, less at night and early morning
• sometimes i get a nerve-based "need air" sensation when i bend over in a specific way, like my center-chest is reporting drowning sensation. weird.
• right sided neuralgias in general- numbness, perceived weakness (not actual), nerve pain
• "dripping" feeling in left underarm, like cold water.
• i can see artifacts in tune with my heart rate in my visual field sometimes
• my heart rate drops at around 7pm every night (from 90 sitting to 60 sitting)
• theres a spot on the top left quartile of my neck that's partcularly pulsatile. imaged fine. probably just a lymph node crushing the artery? idk
• I get pulsing sensations/vein dilation/pulsing in my temples when I lay down most nights (sometimes one sided, sometimes both)
• I get adrenaline-dump sensations sometimes, where it feels like an intense adrenaline rush out of nowhere. this was happening pretty often when my symptoms were at their peak. I've been checked for pheochromocytoma (negative).