kalamazoo Posted August 8, 2017 Report Share Posted August 8, 2017 So I just moved to Seattle to be able to see the specialists over at UW and had my autonomic work up. During the table tilt test I was so miserable and almost went into hypertensive crisis. Once I was put upright I could barely think or talk or function. I just felt really disoriented and felt that way the rest of the day. During my test my heart rate went up to 170 and my blood pressure went up to 175/110. It was actually horrible. The breathing tests were also very uncomfortable and made me extremely light headed. And the skin test left me with some kind of weird rash on my arm that still itches 4 days later. I don't really know what to think about my test but I know I felt horrible and my body was freaking out. I met with Dr So, and Dr Oakley will be reviewing my results. They're the only two dysautonomia specialists at UW. Dr So said he didn't understand my symptoms and they're not typical POTS, definitely a form of dysautonomia and maybe hyper pots but I have extremely venous pooling and vasodilation in my veins. It's extremely painful and my heat intolerance is very bad because of it. He basically said he had no idea and would have to consult with other doctors. I've been checking my BP per Dr So's orders and my bp is weird. 110/90 or 130/100. Kind of confusing but only my diastolic number is constantly elevated. Just feeling frustrated and kind of hopeless as I've been dealing with for 15 years now. Just came here to vent because no one else understands how hard these health issues are. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted August 8, 2017 Report Share Posted August 8, 2017 So sorry you had such a hard experience. From what I remember of my TTT in 2003 my hr went to 160 and my bp also went very high and I felt horrible -- -and even worse for the next few days. Hopefully it is helpful they observed these symptoms. I also had high bp when (and still do) when my POTS was bad or in a flare. I hope they can get this sorted out and get you on treatment that helps. Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted August 9, 2017 Report Share Posted August 9, 2017 I'm sorry Kalamazoo! That is miserable! My BP numbers are similar. TTT HR 179, BP was 178/87 after 1 minute, diastolic peaked at 91 at the second minute. It stabilized in the 140/80 range, which is more normal for me when standing, but then I run low like 95 - 100/60-65 most the time. My blood pooling is nowhere near as bad as yours though. My cardiologist said not to worry about the blood pressure that it's reactionary/secondary. IDK, pretty hard not to worry about numbers so high! He started me on florinef and it's surprisingly awesome. Really got lucky there! Quote Link to comment Share on other sites More sharing options...
TCP Posted August 9, 2017 Report Share Posted August 9, 2017 Sorry to hear that you had such a tough time. I would also consider Mast Cell Activation on account of the rash. Quote Link to comment Share on other sites More sharing options...
Rodeo Mom Posted August 9, 2017 Report Share Posted August 9, 2017 Hi I'm sorry you are dealing with this. When I had my tilt table test (2010) it was also very uncomfortable, but quick. In fact the doctor almost missed it because after the nurse tilted me back it only took 7 min before I became super flushed, nearly passed out, and my heartrate skyrocketed. The doctor was yelling at her "put her down! put her down!". But I was actually happy because I finally had "failed" a test. They weren't telling me I was "normal". I hope that scary day was worth it, and you are on your way to some relief. Quote Link to comment Share on other sites More sharing options...
KellyA Posted September 1, 2017 Report Share Posted September 1, 2017 I was thinking about you and wondered if you'd heard back from your UW docs yet. I'm still waiting to hear back from mine. At this point, I'm not impressed with his communication skills Supposedly, he's looking into vagus nerve symptoms and how it might tie in to my AI disease. But maybe he just blew me off and I need a new neurologist. Guess I'll have to chase him down and get some answers. Hope you're doing ok. Are you still having a heat wave over there? I can't wait for cooler temps, I feel so much better in fall! Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted September 3, 2017 Author Report Share Posted September 3, 2017 Yes, the weather has been horrible! And my doctor, confirmed my POTS diagnosis. But doesn't seem to want to do any further digging. I have an apt with a endocrinologist on tuesday so I hope I can maybe get some more info from her. Quote Link to comment Share on other sites More sharing options...
mehganb81 Posted September 4, 2017 Report Share Posted September 4, 2017 I am a pt at the U too. Heat is miserbale right now Quote Link to comment Share on other sites More sharing options...
KellyA Posted September 4, 2017 Report Share Posted September 4, 2017 mehganb81, do you see the same Dr as Kalamazoo? How often are you guys going for follow-up appointments? I'm wondering if I got dumped by my neurologist in Kirkland. It's been radio silence for 2 months. The receptionist/MA says he's still got my file, but I'm not sure I can deal without any communication. Did you find a neurologist as well, since you're seeing a cardiologist at UW? What did he end up going by, since you said your symptoms weren't straightforward for POTS? Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted September 4, 2017 Author Report Share Posted September 4, 2017 I will be seeing Dr So once a month, he's working with Dr Oakley on my case as well. Which is nice, he feels like he's actually trying to help although I'm not sure where it'll go. I'm about to start a new medication, it's called lebatalol. Dr So and Oakley are neuros, they don't think I need to go to a cardio but I'm also going to see a new primary care next week and will get referrals for a new cardio and ortho. I see an endo tomorrow morning at UW also. I'm hoping I can get some answers, but so far I don't have neuropathy and I have confirmed hyper POTS. Quote Link to comment Share on other sites More sharing options...
mehganb81 Posted September 5, 2017 Report Share Posted September 5, 2017 I actually prefer less follow up and less testing. I have had POTS for 15 years. I see quite a few specialists at the U and generally have been happy. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted September 6, 2017 Author Report Share Posted September 6, 2017 I have been semi happy about the doctors at UW, but today I did see the head of the endocrinology dept and did not have a good experience. Will not be going back. Quote Link to comment Share on other sites More sharing options...
David heck Posted May 4, 2020 Report Share Posted May 4, 2020 Is dr so good? Quote Link to comment Share on other sites More sharing options...
David heck Posted May 4, 2020 Report Share Posted May 4, 2020 I will be seeing doctor so at uw next week for what i think is pots,how is he,does he know alot about pots?,,i have it bad been on couch for 10 weeks,i have high heartrate when standing,dizzyness,and chesttightness,blood pooling in hands and feet, tremers,discomfort after eating,sweating,25 pounds weight loss,veins stick out in hands and hurt,very sensitve to heat,especially legs in bathtub,and body flushes red,i found out compression socks help a lot,wish me luck going up there in corona virus zone ha ha Quote Link to comment Share on other sites More sharing options...
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