andybonse Posted June 14, 2013 Report Posted June 14, 2013 Hello,As my cardiologist isn't specialist in POTS but knows about it and better than any GP i've seen,My symptoms are:Heart rate increases when I stand from 60-70 to 95-110, sometimes I will be lucky and it wont rise too much but this is rarer than I'd like, sometimes my resting HR can be 48-60, my BP is usually 101/50-130/80.When I stand sometimes my BP goes quite high 148', not all the time and sometimes its fine or goes up a little,I get a horrid tight feeling in my head on the top like a rubber band on it and a headache type feeling. A long with diziness, no idea what it is but powerades seem to get rid of it for a few hours.I have not been out in 6 weeks due to my symptoms getting worser,When I walk my heart rate goes down a little, then if I stand still goes back up???So,I am interested what meds could benefit me, I know no ones a doctor but what could I speak to my cardio about trying based on the above in your opinons?I am thinking of trying compression wasit high stockings? Quote
Agreeky Posted June 14, 2013 Report Posted June 14, 2013 I have similar issues. Our numbers are pretty close. My bp goes up too. Wish I could help I am on no meds yet. Finally got set up with a neuro that specializes in this stuff. Quote
MomtoGiuliana Posted June 14, 2013 Report Posted June 14, 2013 This is not the most up to date, but you might start by looking here:http://www.dinet.org/what_helps.htmIt is often a trial and error process to find the best combination for each individual. For me, beta blockers and a low dose SSRI, along with lots of fluids and extra salt helped greatly. Also IV saline at times.When you walk your leg muscles are helping more with circulation and that may be why you notice a drop in heart rate. Quote
andybonse Posted June 14, 2013 Author Report Posted June 14, 2013 This is not the most up to date, but you might start by looking here:http://www.dinet.org/what_helps.htmIt is often a trial and error process to find the best combination for each individual. For me, beta blockers and a low dose SSRI, along with lots of fluids and extra salt helped greatly. Also IV saline at times.When you walk your leg muscles are helping more with circulation and that may be why you notice a drop in heart rate.""*- My doc wants me to try bisoprolol 1.25mg beta blocker, wont this stop the circulation in my legs so blood will drop down if the heart rates not fast enough? scared to try it lol.I also have some Citalopram SSRI, how does this help you in what way? Quote
davecom Posted June 14, 2013 Report Posted June 14, 2013 Hey andybonse and agreeky - I also have very similar numbers and symptoms. I do think the beta blocker has helped more than midodrine in my case although both lowered heart rate somewhat. Quote
davecom Posted June 14, 2013 Report Posted June 14, 2013 Also my POTS doctor said the walking lowering heart rate thing is typical and he told me to never stand still, so I walk 10-15 minutes every 2 hours per his orders. Makes doing some daily tasks difficult but I have learned to cope this far with most things. I certainly don't plan to continue doing this for the rest of my life though! I plan to become normal again.... Quote
Agreeky Posted June 14, 2013 Report Posted June 14, 2013 That's the spirit Davecom! I hope we all get better. Have those meds helped with standing bp? Also, what did your doc tell you about excersizing. I lift, do elliptical, and dance class. I wonder if I am pushing my body too much? I do not do any running out lf fear it will do more damage. Quote
andybonse Posted June 14, 2013 Author Report Posted June 14, 2013 I cant really do much running I get a chest pain like angina, had all sorts of heart tests. Just the POTS :/Its rubbish, I want to be normal. I used to be out with friends having a drink chatting dancing now im stuck doing nothing. Quote
Agreeky Posted June 14, 2013 Report Posted June 14, 2013 Yea I have no idea why I have all the stuff I do. I have vision, digestion, tingling/numbness, bp, and even urinary issues sometimes. My friends do not get why I do not go out with them like I used too. I really miss feeling normal. I know other people have it way worse though. Quote
Guest Alex Posted June 14, 2013 Report Posted June 14, 2013 Hi,this recent article has some good ideas of treatment options for POTS (I've posted it in another thread earlier this week)http://circ.ahajournals.org/content/127/23/2336.fullAlso, like MomtoGiuliana suggested, you can always refer to dinet's main page for ideas.From my experience finding the right medication or combination of meds takes time and patience and is a trial and error process for most of us. I've tried beta blockers, florinef, midodrine, benzos, SSRI's only to get worse. I am now on mestinon and I seem to tolerate it better than anything else I tried. Also don't underestimate the importance of exercise and/or that of the non-pharmaceutical methods.Best,Alex Quote
MomtoGiuliana Posted June 15, 2013 Report Posted June 15, 2013 *- My doc wants me to try bisoprolol 1.25mg beta blocker, wont this stop the circulation in my legs so blood will drop down if the heart rates not fast enough? scared to try it lol.I also have some Citalopram SSRI, how does this help you in what way?I was also scared to try a beta blocker. But it did help lower my hr and did not seem to make me feel worse in any way. For me the SSRI improved all of my symptoms. I don't know that the mechanism is well understood. But with these meds I also greatly increased fluids as well. I think it was all of these treatments together that helped me feel much better. Quote
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