Hi there! I am a 32 year old female. I am exhausted and desperate for answers. I have had for years episodes of pre-syncope and syncope. Caused by my HR going from 60-70 to 160+ upon standing. It’s always been infrequent and they haven’t caught an episode on a monitor. Starting last Wednesday, it’s been nearly every time I stand up. The doctors don’t care because my blood pressure also goes up instead of down and have me scheduled for an event recorder in 2 weeks, first available. They tried for a long time to say it was anxiety and that I was calmer laying down, I do have anxiety but take buspar now, my only medication, and it’s under control. This is not a panic disorder, it takes less than 30 seconds for my HR to jump 100bpm upon standing, back to normal as soon as I lay down or pass out and hit the ground. I usually do not sweat, except for when this is happening, I’ve even put deodorant on the last few days and I haven’t worn it in years because my pits don’t sweat, other places on my body does a little like my abdomen. When I pass out or come close to it, I turn a grayish color and I am cold but soaked in sweat, shaking uncontrollably but not violently like a seizure, I sleep for hours and wake up feeling almost hungover after an event, it takes about 24 hours to recover from a single event and now it is constant and I don’t know how long I can function without recovery time. In the past, cold beverages would make it worse, or more likely to happen, but now it’s constant with or without cold drinks. I’ve started foaming at the mouth when my HR rises, not severely but lots of foamy white bubbles, like I’d rinsed with peroxide, something I’ve never experienced before until this last week. I wonder if there is something wrong with my vagus nerve, as I also stop digesting food 1-2 days per week. Again, the doctors don’t care because I’m not diabetic. I have hypermobile joints but they say that’s a benign condition, if you call all my injuries benign, my jaw is surgically set from dislocations, 6 knee surgeries, osteoarthritis in multiple joints diagnosed at 23 years old, but a vagus nerve problem is also common in people with hypermobile joints. I have had migraines since I was around 11-12 years old, I had my first CSF leak at 11 years old and they patched my last CSF leak in December 2017 so I knows it’s not just a leak, the headaches honestly get better as I age while everything else is getting worse but they aren’t pleasant to have several a week. I cannot take migraine meds, for reference, every one they tried made it impossible to walk, like my legs were a million pounds each. I gave up a long time ago on trying anything. They’ve tried beta blockers in the past for my HR, but even on the lowest dose of metoprolol, my BP drops dangerously low, the worst was 70/40 and I could not stand, I had to lay with my legs elevated until it got out of my system.
I’m scared because this is common in my family, the ones who are hypermobile, my mom, aunt, brother, grandfather, two uncles... they start with headaches, then delayed gastric emptying and dizziness, fatigue, tachycardia, feeling generally lousy for awhile. Get worked up and told nothing is wrong. All the labs are normal. They must be depressed and that depression is painful, same things doctors tell me but I’m not depressed. Then they get pancreatitis, accused of being alcoholics when none of them drink because they aren’t diabetic at that time and they’re young, then they suddenly develop late onset type 1 diabetes. The worst kind of brittle diabetics I’ve ever seen. Then they die in their early 40’s. I’m going down the same path. Their symptoms, the same ones I’m having, all happened before they were diabetics but once they got diagnosed, they just said it was because of their diabetes, but how did all of these symptoms precede the diabetes?
There has to be something deeper here. They could brush me off before but I cannot fake or exaggerate what is happening with my heart rate. If anyone has any experience or recognize some kind of inherited condition, I’d really appreciate you sharing your experiences. I am not a hypochondriac and it is not a coincidence that this happens to so many in my family. I’m just wanting to figure it out before I’m the next one who fully falls apart.