Bigskyfam Posted January 21, 2014 Report Share Posted January 21, 2014 Feeling a bit better these days. Running errands with my daughter, while driving I felt tight in my chest, my heart hurt and was pounding. Glanced at my monitor... HR 170. This at 330... Since then, good resting rates, hr surges to 130-140 when standing then dropping to teens. Having the urge to pee every 20 min or so. I almost forgot I had POTS today. I do not have a subtype... Anyone think a norepinephrine level is in order? Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 21, 2014 Report Share Posted January 21, 2014 Feeling a bit better these days. Running errands with my daughter, while driving I felt tight in my chest, my heart hurt and was pounding. Glanced at my monitor... HR 170. This at 330... Since then, good resting rates, hr surges to 130-140 when standing then dropping to teens. Having the urge to pee every 20 min or so. I almost forgot I had POTS today. I do not have a subtype... Anyone think a norepinephrine level is in order?First of all, good for you that you are able to do things.The other is, what does your blood pressure do? Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 21, 2014 Author Report Share Posted January 21, 2014 It was higher when this happened Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 21, 2014 Author Report Share Posted January 21, 2014 Also had tremors/ flushing Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 21, 2014 Report Share Posted January 21, 2014 I would try to get the levels checked then. You know how it needs to be checked, but the doctors might not. Since you are able to function otherwise, it might be simple enough to make that one point a bit more manageable. I get this, but my presentations seam to overlap. I do not seam to fit in any one place. I am not sure what to make of me. Clonidine seams to keep my adrenalin surges in check, but I do not know what to make of the rest of it. Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 21, 2014 Report Share Posted January 21, 2014 Might be worth getting catecholamines tested if you can get them done correctly. Certainly sounds suspicious with your constellation of symptoms.I had them tested at both Mayo and Cleveland Clinic. The protocols were similar but not exactly the same. Basically they inserted an IV, then had me lie in a quiet, darkened room for 30 minutes, then drew blood thru the IV. Then they had me stand at the edge of the bed for 10 minutes and drew blood again thru the IV. Hope you have success getting this done. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 21, 2014 Author Report Share Posted January 21, 2014 Thanks guys. I talked to my doc last night. He was very straightforward and said i think this isnt urgent,give the bb a go. Been there done that didn't go well. yes it's a new one, bystolic I think...I've been doing so well then had the episode. I want to figure out the cause of episode not necessarily keep it from happening. They offer the testing here. Docs don't want to draw it. They want me to go to mayo, I can't. Frustrated. Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 22, 2014 Report Share Posted January 22, 2014 I can certainly relate to your frustration. Had a panel of labs I needed to have drawn from my specialist in California. Thought I should surely be able to get them done locally so I didn't have to fly cross country just for labs. Five trips to the lab, multiple phone calls to customer service to try to insure that they were going to be done right and 34 vials of blood later.....wa la....get my results and the tests were still done wrong. Really folks? And they advertise as being one of the "top 100" hospital systems in the country.Sometimes the fact that they can do the testing locally doesn't mean they can do it right, or that they will be able to interpret it once they get the results. If this doc isn't willing to put in a little bit of effort for you, then you might be better off trying to find someone who is more willing to work with you on trying to get you what you need. Since traveling cross country (to Mayo) isn't an option, could you travel to somewhere closer like another city in your state if you aren't having any luck with any of the local folks?Hang in there. This is just part of the joy of dysautonomia. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 23, 2014 Author Report Share Posted January 23, 2014 Thanks for your thoughts. I'm in MT. Closest I think is az/tx Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 23, 2014 Report Share Posted January 23, 2014 Can you get adrenalin surges without being hyper pots? I tend to get my spells in episodes, but I do not think that I present that way otherwise. The clonidine tends to keep them in check for me. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 23, 2014 Author Report Share Posted January 23, 2014 Gjensen do you have a subtype? Quote Link to comment Share on other sites More sharing options...
gjensen Posted January 23, 2014 Report Share Posted January 23, 2014 No. I do not have anything, and I have everything. LOL. Really, I do not know where I fit in. I am like you, I live in a State and area where there is no one near by. Kind of manipulating my way through with what I have. I certainly would not be a good reference. I know that I get adrenalin surges. They can be rough. Have not had any bad ones in a while. I know that blood pools in my legs/feet and my stomach. I can see it. I know that I have tested positive for neuropathy. I know my most debilitating symptom is my postural head aches with the misc. Now supposedly, I have csf fluid leaks. I have tested positive for ANA antibodies, and I know my TTT results. I wonder why you could not find an endo that could not get that test right? Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 24, 2014 Report Share Posted January 24, 2014 I think some people on here have been seen by someone in Seattle who has a specialty in POTS.I was thinking maybe you could find a local doc who might not be a specialist but someone who might just be more willing to be an advocate and work with you. Someone who's willing to read articles, or order tests that you've done the research to find, etc. Obviously seeing a specialist is the ideal, but if you really can't travel, finding someone nearby who will work with you (more than what you have now) might be your best option.Since you prefer to avoid meds etc, have you checked to see if you have any integrative medicine docs in your area? They are typically MDs who were trained traditionally but also have additional training in alternative/complementary medicine options. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted January 24, 2014 Author Report Share Posted January 24, 2014 I'm with a cardiologist and internist who are pushing meds... I'd like to get a subtype first. I've healed in leaps and bounds with just lifestyle changes. Still have a long way to go. I appreciate you guys thoughts.gjensen... You are a big help with your thought processes. We all have to think outside the box and together. I have found great comfort with you guys! Gotta go have some salt...little flurry Of symptoms.Overdid it today I think Quote Link to comment Share on other sites More sharing options...
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