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I have an autonomic nervous system disorder (postural tachycardia) that causes my heart rate to skyrocket at any kind of physical or emotional stress. Basically

I have an autonomic nervous system disorder (postural tachycardia) that causes my heart rate to skyrocket at any kind of physical or emotional stress. Basically it's like my fight-or-flight response is broken and over-reacts to everything (even from seeing blood or just standing up). Serious emotional issues can triggers panic attacks for me pretty easily. I went through a battery of heart tests that all turned up normal and I was diagnosed with anxiety, until years later when someone thought to test my nervous system. So yeah, I can relate. But those heart tests even included wearing a monitor that didn't tell them anything useful other than that it was elevated at times... but not that there was a real physiological underlying cause beyond simple anxiety. Not sure they'd put any more interest in a Fitbit's data.

agumonkey 11y ago
I don't have your condition but on its worse times my circular system was about to shut down, my 4 limbs were cut to sustain the rest. For months Any activity in one part of my body would cause the rest to feel numb. Even typing with two hands would saturate my brain. The story makes them smile as in "you wouldn't be speaking anymore if you experienced this". If I had a trace of the sudden lack of blood pressure they'd at least have something quantitative to consider rather than borderline incoherent speech. That said most generalist wouldn't consider it anyway as you said.
- raelshark 11y ago
  That's really interesting - I havent heard of those kinds of problems outside of autonomic issues. You actually got diagnosed with something else related to cardio that causes that? And yeah if it's low blood pressure-related that's hard to show them, since it changes so much and will be different in the doc's office than normal, and because there's no real way to do continuous BP monitoring the way you can with heart rate. Luckily in my case there's a simple test you can do at home or in a doctor's office to see the BP drop quickly.
  - agumonkey 11y ago
    So far not, I have tests booked next week. My 'wikipedia' self diagnosis was something similar to takotsubo syndrom. Emotional pain -> hormone flush -> broken heart muscle functions -> BP shut -> vaso-constriction reflex attempting to restore BP. Few weeks later I had a feeling of 'clogged artery' on my left side. No pain though, otherwise I'd have gone to a hospital because it would have seem like an infarctus. Looked like a very bad BP, very bad diet (sadness->eating shit), fat deposit, occlusion, near infarction. I suspect it affected my brain too, I lost control of my left side for sophisticated movements, for months I couldn't type with both hands while reading what I was typing (had to alternate one word, check, next word). Things are coming back now but still I'd love to have a full checkup (angiography, brain scan) to avoid pushing too hard on my system before the time is right, problem is no doctor will send you for such tests unless you're crashing in front of them. Takes time. For a year I wished for more non invasive medical monitoring and tests..
dorfsmay 11y ago
I'm curious, do you have low blood pressure?
- raelshark 11y ago
  Yep. I've been diagnosed with orthostatic hypotension too. I have bouts of low blood pressure, so it can drop when I stand too quickly or for too long, or when I exercise. My resting pressure doesn't read as low but I still feel the effects of it and treatments for low BP help my other symptoms...
hderms 11y ago
Was there any solution found to your problem?
- raelshark 11y ago
  There's no cure or anything, just a handful of treatments for the symptoms and to keep things under control. For the heart rate issues I take Xanax periodically as needed - it keeps anxiety from building up and setting off my heart rate (which then feeds the anxiety in a vicious circle). The autonomic problems also cause periodic drops in blood pressure so I take a medication for that, but also have weird treatments for it like a high-salt diet and compression stockings I wear very day. I also take an ADD med for the cognitive impairment that comes along with drops in blood pressure. I also have major on-going fatigue and gastrointestinal issues related to the autonomic problems (turns out your autonomic nervous system runs EVERYthing), and I'm about to be tested for food sensitivities to see if changing my diet might help those.
  - agumonkey 10y ago
    I recently learned how the SNS, pSNS and SNS are linked to every part of your body. Changed my mind about the potential spread of psychosomatic disorders.

agumonkey 11y ago

I don't have your condition but on its worse times my circular system was about to shut down, my 4 limbs were cut to sustain the rest. For months Any activity in one part of my body would cause the rest to feel numb. Even typing with two hands would saturate my brain. The story makes them smile as in "you wouldn't be speaking anymore if you experienced this". If I had a trace of the sudden lack of blood pressure they'd at least have something quantitative to consider rather than borderline incoherent speech. That said most generalist wouldn't consider it anyway as you said.

raelshark 11y ago
That's really interesting - I havent heard of those kinds of problems outside of autonomic issues. You actually got diagnosed with something else related to cardio that causes that? And yeah if it's low blood pressure-related that's hard to show them, since it changes so much and will be different in the doc's office than normal, and because there's no real way to do continuous BP monitoring the way you can with heart rate. Luckily in my case there's a simple test you can do at home or in a doctor's office to see the BP drop quickly.
- agumonkey 11y ago
  So far not, I have tests booked next week. My 'wikipedia' self diagnosis was something similar to takotsubo syndrom. Emotional pain -> hormone flush -> broken heart muscle functions -> BP shut -> vaso-constriction reflex attempting to restore BP. Few weeks later I had a feeling of 'clogged artery' on my left side. No pain though, otherwise I'd have gone to a hospital because it would have seem like an infarctus. Looked like a very bad BP, very bad diet (sadness->eating shit), fat deposit, occlusion, near infarction. I suspect it affected my brain too, I lost control of my left side for sophisticated movements, for months I couldn't type with both hands while reading what I was typing (had to alternate one word, check, next word). Things are coming back now but still I'd love to have a full checkup (angiography, brain scan) to avoid pushing too hard on my system before the time is right, problem is no doctor will send you for such tests unless you're crashing in front of them. Takes time. For a year I wished for more non invasive medical monitoring and tests..

dorfsmay 11y ago

I'm curious, do you have low blood pressure?

raelshark 11y ago
Yep. I've been diagnosed with orthostatic hypotension too. I have bouts of low blood pressure, so it can drop when I stand too quickly or for too long, or when I exercise. My resting pressure doesn't read as low but I still feel the effects of it and treatments for low BP help my other symptoms...

hderms 11y ago

Was there any solution found to your problem?

raelshark 11y ago
There's no cure or anything, just a handful of treatments for the symptoms and to keep things under control. For the heart rate issues I take Xanax periodically as needed - it keeps anxiety from building up and setting off my heart rate (which then feeds the anxiety in a vicious circle). The autonomic problems also cause periodic drops in blood pressure so I take a medication for that, but also have weird treatments for it like a high-salt diet and compression stockings I wear very day. I also take an ADD med for the cognitive impairment that comes along with drops in blood pressure. I also have major on-going fatigue and gastrointestinal issues related to the autonomic problems (turns out your autonomic nervous system runs EVERYthing), and I'm about to be tested for food sensitivities to see if changing my diet might help those.
- agumonkey 10y ago
  I recently learned how the SNS, pSNS and SNS are linked to every part of your body. Changed my mind about the potential spread of psychosomatic disorders.