dianaD Posted November 8, 2005 Report Share Posted November 8, 2005 Hi everyone,I have hyperadrenergic POTS, with the tremulousness, shaking, difficulty breathing, chills, digestion problems, you know the rest.Well, I was filling out some paperwork to be a research patient at Vanderbilt and had to check my heart rate and BP after standing for 10 minutes. Interestingly, my tachycardia is basically GONE (at least in 10 minutes!).Has this ever happened to anyone else? I still have all the other symptoms and am basically non-functional. Can you have "POTS" without the "T"?I may not qualify as a research patient, now. Agh!!!Does it mean I'm getting better, but not better enough to function yet? I've been exercising very hard on the recumbant bike because I thought it might be the only way to recover. But I don't feel any better at all. What gives?Thank you for any insight you may have!Diana Quote Link to comment Share on other sites More sharing options...
Evie Posted November 8, 2005 Report Share Posted November 8, 2005 I have Pots without the T Well my neurologist said it was possible when i asked him (but i think he meant more you can still faint and get dizzy due to drop in blood pressure upon standing but you dont have to have the fast heart beats to go with it) however because i dont have the T i dont label myself as POTS ... my drs use the term autonomic dysregulation (i think everything comes under that doesnt it? heh). So yes its possible to still be sick and dizzy without the Tachy (i can never spell it eek) but hopefully at least it shows a improvement in some aspects of your body. Im glad that the T has gone for you... it sounds like it would be awful. Sorry to hear its not impacting on your general situation though. Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted November 8, 2005 Report Share Posted November 8, 2005 Well, how was your blood pressure? The term POTS is sometimes used interchangeably with dyautonomia but I personally don't think that is accurate. There are many forms of dysautomia that don't result in tachycardia upon standing. I have tachy-brady and extremely low blood presure. The brady and low pressure is what causes my NCS and most of my other problems. So treatment for me is aimed at getting the pressure up and stabilizing the heartrate. So.... as far as the research did they say they were looking for POTS specifically, or dysautonomias?Carmen Quote Link to comment Share on other sites More sharing options...
Ianankatie Posted November 8, 2005 Report Share Posted November 8, 2005 Have you looked into the possibility that you could have vasovagal syncope now not pots? I started with vasovagal then developed pots so maybe you can do it in the reverse.Vasovagal Syncope is a form of Neurocardiogenic Syncope where your BP drops gradually when you stand, you suffer all similar symptoms to pots and then when your bp gets too low you faint. If your HR drops aswell then it is NCS and if it goes up it is NCS/POTS. I think anyway?!!!!It makes more sence- check out your BP on standing and when you feel symptomatic- you never know, if they get the correct diagnoses there may be a magic pil waiting there to cure all of you other symptoms. I hope so for you!!Good luckKatie x Quote Link to comment Share on other sites More sharing options...
yogini Posted November 8, 2005 Report Share Posted November 8, 2005 My tachycardia is a lot better than it was when I first got POTS, but it hasn't gone away completely. I think most of us have good days and bad days. On a good day when I walk around, my HR might be in the 80s. On a bad day, it might be in the 120s. So it may be that your tachycardia is gone, or that you were just having a good day. I'm not sure whether you monitor your HR and BP. Some people here don't like to do this, but I personally find it very helpful to do from time to time so that I can keep track of my progress. You probably are getting better, b/c the doctors say that most people do improve over time. Exercise has been the biggest help for me, but if you are exercising too hard, it might explain why the rest of your symptoms aren't improving...or it just may be POTS. With this crazy condition, you never know! Feel better soon,Rita Quote Link to comment Share on other sites More sharing options...
Evie Posted November 9, 2005 Report Share Posted November 9, 2005 wow now i can give myself a label heh .. thanks Ianankatie VS it is! Quote Link to comment Share on other sites More sharing options...
Ianankatie Posted November 9, 2005 Report Share Posted November 9, 2005 If you think it may be more like vasovagal syncope it may be worth you trying to exercises to improve your symptoms- ie hand squeezing, crossing legs when standing, moving from foot to foot, standing on your tip toes and moving up and down and squatting. All of these have helped to prevent symptoms worsening when you feel the dizziness etc coming on- worth a try!!!Also stregnthening your calves can really help- try whenever you walk up/down stairs do it on tip toes. and if you feel well try going up and down one step on tip toes for as long as you can- obviously not for too long and not too quickely if you are exercise intollerant like me! This helps keep the blood pumping so when you stand the blood doesn't pool in you legs causing the pre-syncope.I feel as though I have tried almost everything for VVS so if you need any ideas just let me know!!Good luck Katie x Quote Link to comment Share on other sites More sharing options...
Evie Posted November 10, 2005 Report Share Posted November 10, 2005 You know whats funny? I do cross my legs while staning and move up and down on my tippy toes ... yet i never knew why, just that i felt better that way. its good to know my body has decent instincts heh. Thanks for the advice, i will take it on board Have you tried lifting the head of your bed? its done the world of good for me, when i first heard it i thought it sounded silly but was worth a shot... so glad i tried it.I am exercise intollerant too ... i usually just faint if i exercise. However i ran a little the other day ... first time in 7 years i will give credit to the bed being raised heh. If i think of anything else that helps i will be sure to let you know Quote Link to comment Share on other sites More sharing options...
Ianankatie Posted November 10, 2005 Report Share Posted November 10, 2005 yeah raising my head in bed worked great but after a while it stopped working so I added another pillow. I am now onto 4 large pillows, my poor husband looks like he is in a hole next to me!!!Other useful things to do- wear shoes with laces- you feel it comming on and bend to tie your laces- you don't look such a nutter!!!Also check out things on the lower shelves in supermarkets or drop your keys so you need to sit down and pick them up!!Anything to look slightly less mad!!!! Quote Link to comment Share on other sites More sharing options...
JaneEyre9 Posted November 11, 2005 Report Share Posted November 11, 2005 Other useful things to do- wear shoes with laces- you feel it comming on and bend to tie your laces- you don't look such a nutter!!!Also check out things on the lower shelves in supermarkets or drop your keys so you need to sit down and pick them up!!Anything to look slightly less mad!!!!<{POST_SNAPBACK}>Those are great! They made me laugh...very creative. I think I will try them Kristen Quote Link to comment Share on other sites More sharing options...
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