SeattleRain Posted May 22, 2013 Report Share Posted May 22, 2013 This is something new I have read about with symptoms similar to POTS. Has anyone else read about this/been tested for it? I have autonomic testing at UW coming up very soon and they test for this...Also off topic: Does anyone know how I can pay for/schedule my own imaging tests? My cardiologists I've seen refuse to refer me to get an abdominal CTA or MRI. I fit the symptomatic criteria for chronic type B dissection, which lo and behold can be caused by a valsalva, which is what caused my symptoms. But because I don't have abdominal pain (which 30% of patients do not have), he will not refer me to get the test even if I pay for it out of pocket. The worst that can happen is I spend the money, they make money, and I have peace of mind. So frustrating! Quote Link to comment Share on other sites More sharing options...
julieph85 Posted May 23, 2013 Report Share Posted May 23, 2013 I have Baro receptor dysfunction, it isn't baroreflex failure, it's actually the opposite. It is like they are on a hair trigger, particularly the ones in my carotid arteries. They are so hyper sensitive that turning my head to the side, swallowing, and talking makes me feel like my head is going to pop with pressure and I will pass out. It is terrible and is one of the most debilitating aspects of my pots. I want to believe that this receptor hypersensitivity is typical with pots yet every pots specialist I have seen says they have never seen it before... No one knows what to do about it Quote Link to comment Share on other sites More sharing options...
Joann Posted May 23, 2013 Report Share Posted May 23, 2013 Julie, How where you diagnosed with this? Quote Link to comment Share on other sites More sharing options...
SeattleRain Posted May 23, 2013 Author Report Share Posted May 23, 2013 Julie, How where you diagnosed with this?+1I have a similar issue. My HR is around 60bpm when supine. If I so much as turn my head, or just roll onto my side, my HR shoots up and I get this huge pressure feeling on the sides of my neck. I used to get it like crazy in my head, where it felt like my head was going to pop, but it now happens a lot more in my neck... Quote Link to comment Share on other sites More sharing options...
julieph85 Posted May 23, 2013 Report Share Posted May 23, 2013 I wasn't officially. I demonstrated what happens to me when I turn my head while hooked up to EKG, artery BP monitor, tilt table test at my cardiologist and at Vanderbilt. They couldn't believe what my BP and heart rate did. The most answer they could offer is that my Baro receptors are over firing. I had one doctor ask if he could do carotid massage to my neck to confirm diagnosis but I told him no because I would rather not die right now. I knew they are over sensitive just off my symptoms alone and the monitoring I had done so I don't even want to know what would happen if my carotid was provoked like that Quote Link to comment Share on other sites More sharing options...
SeattleRain Posted May 23, 2013 Author Report Share Posted May 23, 2013 Interesting... What's artery bp monitor? Is that different than the cuff they put on your arm? Do you know how you respond to a valsalva maneuver? Quote Link to comment Share on other sites More sharing options...
julieph85 Posted May 23, 2013 Report Share Posted May 23, 2013 The artery is done on your finger. It allows for continuous beat to beat blood pressure monitoring. Yes when I do the vasalva I have exaggerated phase IV overshoot. That happens in hyper pots from what my cardiologist said. Of coarse, I doubt they even know what that means. Phase IV overshoot means that after the initial drop in BP that you get during the maneuver my BP overshoots to compensate and goes way higher then is normal. That would be suggestive of a hyper andrenergic response or over active receptors possibly Quote Link to comment Share on other sites More sharing options...
badhbt Posted May 23, 2013 Report Share Posted May 23, 2013 It can be so frustrating dealing with Doctors....especially when you know if they felt this crappy they would have every test done. I had a Internal Med Dr. refuse to check my hormones because she said if we keep doing tests we are going to find something....isn't that the point?? I don't think you can do a MRI without a Doctor's order. I had the testing at UW also. All my tests were wnl except for the TTT. I hope you find some answers....feel your frustration. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 23, 2013 Report Share Posted May 23, 2013 Its confusing and compounded by unhelpful docs. Quote Link to comment Share on other sites More sharing options...
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