Avatar universal

Orthostatic Tachycardia without Orthostatic Hypotension

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.
4 Responses
973741 tn?1342342773
wow, what a time you've had of it.  That many people have died from health related reasons in their 40's in your family?  That's a lot and certainly should play into your health history to consider when treating you.  Especially your mother and brother!  What was the ultimate reason for cause of death with them?  Diabetes is a manageable disease, with the proper care.  Do you have diabetes?  I assume you have had your sugar checked and blood work in general?  Is this type 1 we are talking about or type 2?

I've recently learned a little about syncope and hypotension as my son has been getting dizzy.  This past weekend, I heard some strange talking and a huge bang.  My son had gotten up to carry a plate to the sink and had gotten dizzy and fell.  He had a huge welt on his cheek bone (black eye still forming as we speak) from hitting the edge of the counter when he fell. He has had the dizziness from getting up from a chair all summer apparently but this was the first full fainting episode.  And he woke up confused. I was very worried.  But for him, the issue is dehydration most likely.  I had my sons do this cardiac testing about 5 months ago in which they did all sorts of test to see if they had underlying heart issues, if they were at risk for sudden cardiac arrest (they are both athletic and in sports so wanted to make sure about this as they have significant exertion in practices).  Etc.  AND, he's 13 years old.  So, we came up with dehydration being one of the main reasons this can happen.  He's in for a doctor's appointment later in the week.  

I'm sure you've explored that though.  So, definitely see if this is heart related but be open to other things to and don't foresee yourself as the same as family.  But . . . big BUT . . . be vocal at your doctor's appointments.  Buspar is not the greatest med, by the way.  There are better meds for anxiety than that one.  good luck
Oh, and by the way, there IS something called hypertensive syncope.  Have you had tilt table testing?  And do you see a cardiologist?  I'm assuming so.
Avatar universal
Thank you for the response. I’m sorry your son is going through that. I had my first episode around that age. It’s so scary, especially when it’s new. I try to get down as fast as possible when I feel it happening but the early days included lot of bumps and bruises. I had a normal echo, high PVC burden on the monitor but I didn’t have an event while wearing it. I haven’t had s tilt table test. My dr at my new health system won’t refer me to cardiology until they’ve “ruled everything else out” and says the first step is the event recorder. I’m just frustrated it’s taking so long. I’ve never had such consistent symptoms and as much as I want it to improve, I want them to capture it first. My family is all adult onset type 1 diabetics. If it were normal type 1, it wouldn’t be as devastating but they’re brittle diabetics, not because they don’t take care of themselves, they’re brittle even with continuous glucose monitoring. My mom’s death cert reads as metastatic peritoneal cancer but had that not been diagnosed, she would have been done soon after. My aunt was from sepsis after she went for a routine lower extremity angiogram. Her arteries shredded and tissue fell apart like paper, like they’d never seen, ended up with both legs amputated. So, complication of the diabetes. They were constantly in the hospital in DKA. My brother isn’t in his 40’s yet and is still alive but needed a gastric pacemaker and is working on getting listed for an islet cell transplant. His legs will be gone soon. The buspar is working to take the edge off, I didn’t want to take anything like Xanax because it makes me even groggier and I feel I’m anxious because I’m in a fog, less focus will make it worse. Fingers crossed they’ll figure this out. I can’t live my life sitting/laying down.
Avatar universal
Considering you are hypermobile and you have a family history of death at young ages (esp what you describe about your aunts arteries shredding like tissue) you should ask to be tested for Ehlers-danlos type 4. This is the vascular type and the most serious form.

I don't mean to scare you but alarm bells went off in my head when I read your post.
Avatar universal
Also POTS is common in people with EDS of any type.
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