andybonse Posted August 6, 2013 Report Share Posted August 6, 2013 Hello,Well, I stand up my bp goes from like 125/71 to 105/71 but after a few seconds its back to normal? Doctors say its not hypotension as it doesn't stay low for long?Any ideas? Quote Link to comment Share on other sites More sharing options...
looneymom Posted August 6, 2013 Report Share Posted August 6, 2013 Hi Andy,Have you had a tilt table test done? This is a test that can tell your doctors what the condition is if it has anything to do with your blood pressure or heart rate. POTS patients can have either one of these low or high. Did you have a virus before any of this started? If you did, I would suggest that you go see an immunologist. Some of my son's worst symptoms are starting up again after he gets sick. Our doctor referred my son to an immunologist Some of the test results that we got back were a little bit surprising. Just wondering if your case could be immune related. . Quote Link to comment Share on other sites More sharing options...
andybonse Posted August 6, 2013 Author Report Share Posted August 6, 2013 Hello,I just had a ecg done and a standing test. I didn't have a virus, well, one day I had a tight chest and it hurt when I breathed in and a clicking noise came from it to the heart beat, I went to hospital as it was that painful but they didn't find anything apart from higher than normal white blood cells, which indicates an infection, I've had that twice before POTS, so not sure if that triggered it off.When I was 16 I broke my collarbone on a bike going up a ramp, also slammed my back but was fine after. It all began around 17-18 years old.No idea what to do now, my cardiologist who knows about POTS says to try and get on as best I can with my life. I'm not terrible and sometimes feel ok, but its getting me down a bit now feeling crap all the time. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted August 6, 2013 Report Share Posted August 6, 2013 Hi! And Welcome!Could you have a sinus infection? Most of us (including me) have Chronic Sinusits! Maybe you would benifit from a chest/abdominal ct scan or mri and brain mri? Even though it might be a challenge to get that done. Join the club of "feeling like crap all the time" its terrible I know, but at least you now have us! Good luck on your journey figuring this out and keep posting! ♥Oh and how does your heart react to standing up? And you have a better prognosis since you're still very young. So it's something your most likely gonna have to deal with for a couple years.. thats much better than ALL your life! :-) Welcome to Dinet. Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 6, 2013 Report Share Posted August 6, 2013 Hi Andy! While it is normal for even completely healthy individuals to have a drop and a rebound in their BP upon standing (which is probably why your docs aren't overly concerned), looneymom is right....only a proper 45 minute tilt table test will reallybe able to rule orthostatic hypotension in or out. One reason for this is that on a tilt table your body can't do even little counter maneuvers that would change the results of a regular standing test. While finding an underlying cause for all of it is the main goal, it is important to know which form/s of dysautonomia you have so they can treat your symptoms properly in the meantime. Please remember you need to advocate for yourself with your docs. If you know something is still not right and not being addresses, let them know and press them to help you. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 6, 2013 Report Share Posted August 6, 2013 Andy,how long after standing did you take the second BP reading? Usually it takes a bit (a minute at least) for your body to adjust to gravity, so if your BP gets back to normal after a while I'd say that your drs are correct - they know you better than we do anyway. Also, I learned this here and then had one of my drs confirm the info - when you're checking your BP standing, your arm should be extended horizontally and your hand should be resting on an object situated at shoulder level for you for the measurements to be correct. Are you on any meds for POTS? For me beta blockers caused orthostatic hypotension, but I'm no longer taking any and my BP has been behaving lately.The slightly elevated wbc (white blood cell count) can be anything really - even a cavity you may not even be aware of, but do ask your dr to keep an eye on it for your peace of mind.Sorry you're having a hard time dealing with this. See if you can find any tips on dinet's main page under "what helps" and "what to avoid". Best,Alex Quote Link to comment Share on other sites More sharing options...
andybonse Posted August 6, 2013 Author Report Share Posted August 6, 2013 I took it 30 seconds to 1 minute to be normalised.I'll feel ok at one point and then the next when seated even just a weird spacey feeling just not myself and I dont know how to explain how I feel. Blood pressure and hr always normal ranged never low or too high either, it *****. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 6, 2013 Report Share Posted August 6, 2013 Try repeating the BP measurement at 3, 5 and then 10 min upon standing. This is the typical "protocol" my POTS dr follows when checking my BP and HR - lying down, then standing at 1,3,5 and 10 min. I had occasional dips in BP at 1 min, but my numbers normalize at 3 min and from there on. Also, he insists on me getting up slowly after lying down for a while. See if this helps you as well. I think it does allow my body to adjust better.Are you saying that you're dizzy despite having a normal BP? If that's the case, see the thread IceLizard started the other day called "fainting when vitals appear to be normal" - it's possible for your brain not to get enough oxygen despite having a normal BP as the blood flow to the brain may be temporarily impaired. I'd mention these episodes to the dr treating you, maybe s/he can monitor your brain's'electrical activity with an EEG to see if everything checks out fine there, or s/he may want to order a carotid doppler to make sure that the blood flow to your brain isn't to blame for these dizzy spells.Alex Quote Link to comment Share on other sites More sharing options...
andybonse Posted August 6, 2013 Author Report Share Posted August 6, 2013 I have a private referal just come through for prof Mathias in London UK. Quite exciting to see someone who knows everything to check!! Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 6, 2013 Report Share Posted August 6, 2013 That sounds great! You'll be in good hands then. Please keep us posted.Alex Quote Link to comment Share on other sites More sharing options...
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