lejones1 Posted February 5, 2013 Report Share Posted February 5, 2013 Hi everyone! I'm new here...I was just diagnosed with POTS 2 weeks ago. Actually, the doctor said I "pretty much" have POTS and that's my concern...During my tilt table test my blood pressure dropped by about 20/10 almost immediately when I was flipped up, then returned to normal within a minute or so. My heart rate jumped immediately as well, by about 50 BPM, and stayed there, and the rest of my test was consistent with POTS. The same results have been recreated a couple of times in another's doctors office and I've found the same thing at home too - my blood pressure drops upon standing but recovers almost as quickly and goes up to where it started or even a little higher. This doesn't sound like it's consistent with POTS and that's what worries me. My doctor (a cardiologist with some POTS experience but not a specialist) doesn't seem very concerned about it - told me to drink lots of water, eat salt, and start exercise and come back in 3 months- but if I've learned anything since I've been ill it's that just because a doctor isn't worried doesn't mean there's nothing wrong! From what I've read about orthostatic hypotension it's usually associated with much more serious, degenerative disorders and I'm terrified that I actually have one of those.For some background, I'm a 23 year old woman and my symptoms came on suddenly with a viral illness 9 months ago. My main symptom by far is fatigue, but I also have occasional nausea, headaches, and lightheadedness from prolonged sitting or standing. I had some weird nerve symptoms when I first became ill - tingling and burning sensations all over my body, but they resolved over the first couple of months.The only thing I can really think of that would explain this is that I've always gotten lightheaded upon standing, ever since I was a kid. I have friends who experience the same thing so I always just assumed it was normal. But I never had my standing BP measured before this year so I don't know if that actually made it drop.So my question is...does anyone know what would explain this drop in BP or what other syndrome this could be? I've made an appointment with a neurologist but it's not for a month and in the mean time I'm very worried! Quote Link to comment Share on other sites More sharing options...
westernmass Posted February 5, 2013 Report Share Posted February 5, 2013 Sounds like POTS... Or the broader term "dysautonomia" which includes lots of things, but for your case possibly orthostatic hypotension (bp drop w/ standing). There is tons of information on this site, so definitely explore and lots of wonderful people here to help. Best wishes! Quote Link to comment Share on other sites More sharing options...
Katybug Posted February 5, 2013 Report Share Posted February 5, 2013 It is normal for everyone to have a mild change in BP and then have it restabilize relatively quickly. It is the way your body compensates for change in orthostasis and gravity. So, I'm not a doc, but I don't think your BP change is abnormal. But, your HR! change is definitely indicative of POTS. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted February 5, 2013 Report Share Posted February 5, 2013 I have both POTS and Neurally Mediated Syncope (which can also look like Othostatic Hypotension.). Either way a drop in BP does not change the POTS diagnosis. (I know there are some older clinical definitions that say, increase of HR by 30 bpm or more without Orthostatic hypotension, but in reality about 1/3rd of all POTS patients also get a drop in BP (some temporary, some sustained) upon head up tilt.As others have said, it doesn't much matter because both are forms of Dysautonomia. And all dysautonomia is associated wirh erratic hemodynamics. Now, the key is to figure out what is causing your autonomic dysfunction and try to improve that condition. Quote Link to comment Share on other sites More sharing options...
Kellysavedbygrace Posted February 5, 2013 Report Share Posted February 5, 2013 By the way, welcome to the forum. This is a great place for information and learning from one another. Quote Link to comment Share on other sites More sharing options...
lejones1 Posted February 5, 2013 Author Report Share Posted February 5, 2013 That's what I really wanted to know, whether the drop in BP ruled out POTS and suggested a totally different issue. My cardiologist follows the "no drop in BP" criteria but but then diagnosed me with POTS anyway and didn't explain why.. that's what frustrated me.Thank you all so much! I'm excited to be here (well not really, I'd rather not be sick at all!) - but everyone seems so friendly and well-informed. Quote Link to comment Share on other sites More sharing options...
corina Posted February 6, 2013 Report Share Posted February 6, 2013 Hi Lejones, welcome to the forum! Like Kelly said POTS is about the raise in heartrate upon standing (or a heartrate over 120b/pm) and not necessarily a raise or drop in bp. Glad you found us (though sorry of course for the need)! Quote Link to comment Share on other sites More sharing options...
Mydoggielovesme2 Posted February 6, 2013 Report Share Posted February 6, 2013 Hi Lejones, I am a newbie also. When I had my tilt table my heart rate went to 190, but my BP dropped. I live with hypotension 80/50 daily. Kind of crazy that you can be tachy and low bp at the same time. Guess that's one reason for the fatigue. Anyway hope you get to feeling better soon. Quote Link to comment Share on other sites More sharing options...
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