tobel17 Posted January 19, 2008 Report Share Posted January 19, 2008 Hi, I'm new to this whole POTs thing, and was diagnosed after two ablations to try to treat my arrhythmia. I've been on Midodrine for about six months now, started at 2.5 and now i'm up to 10 mg 3x a day, but my blood pressure never goes above 125 even though I get chills. It was about that high before i started taking the Mid. Am I supposed to be seeing results? I questioned my EP, and he said he didnt know why it doesnt go up, but didn't seem concerned. Is that normal? When I looked into information about the studies and trials they did with Midodrine it seemed like people had to be careful to get blood pressure up, but not let it go too high. Its been really frustrating having to give up the things I love because I can't do them. Its really nice to find people who have the same thing going on, because for the longest time I just thought oh if I just push a little harder, or try to work more at this maybe I can hike or go up the stairs, I must just not be fit enough. Does anyone have any suggestions? I'm feeling out of my element, and I don't think my doc knows much about POTS, but i'm not sure if there's just nothing that can be done or if he is unsure.Thanks,Tobel Quote Link to comment Share on other sites More sharing options...
Ernie Posted January 19, 2008 Report Share Posted January 19, 2008 Hi,I can double my Midrodine and it won't affect my BP. What affects my BP is orthostatic. Quote Link to comment Share on other sites More sharing options...
deucykub Posted January 19, 2008 Report Share Posted January 19, 2008 Hi, Tobel:Welcome to the forum. I am so sorry to hear that you have POTS, but you are among friends now. Over time with this illness, I think the key thing you learn is to pay more attention to how you feel than what the numbers (BP/Heart Rate) show. There doesn't seem to be a lot of correlation between the two. One day your BP could be normal, and you feel awful. The next day it could be low, and you feel great -- or vice versa! The same is true with your heart rate, too.If your symptoms start to diminish, then you know that midodrine is helping you. For me, it didn't affect my symptoms but gave me migraine-type headaches (the kind where you crawl in bed, under the covers, with the lights off). However, a lot of people with POTS have great success with midodrine! If the improvements you feel outweigh any negative side effects, then the balance is tipped the right way, and it is probably a good drug for you.The chills feel weird but are normal with midodrine, particularly the tingly ones on the top of your scalp. They are pretty easy to get used to after a while. What was that old "Head and Shoulders" commercial? It tingles because it's working? Quote Link to comment Share on other sites More sharing options...
flop Posted January 19, 2008 Report Share Posted January 19, 2008 Hi Tobel,a systolic BP of 125 is quite a good number to get (although as Deucykub said, just because the number is good doesn't mean that you feel good). Have you had your BP measured whilst you are standing up? If you BP drops after standing (BP needs to be checked 1 min, 3mins, 5 mins and 10 mins after standing ideally) then that would explain why you don't feel good / can't do the things you want to. The other question is what is your heart rate like when you are standing up? If your BP is good but you are also very tachycardic (fast heart rate) that will also make you feel pretty awful.(I have a fast heart rate but a normal blood pressure when I stand up - better than a few years ago but I still feel crummy with it).Lots of us POTSies need more than one medication in combination to get us feeling at our best. If you are not happy with your POTS doctor you could ask your primary to refer you to a doctor who specialises in autonomic dysfunction or POTS - look at the list on the main DINET website for ideas of doctors in your area.Good luck,Flop Quote Link to comment Share on other sites More sharing options...
tobel17 Posted January 19, 2008 Author Report Share Posted January 19, 2008 im not sure what my blood pressure does when i stand but im very aware of my heart rate which is my major complaint. usually its 50's-70s but if i stand it jumps to 90s 100s and exercise easily it gets to 190s. very frustrating. yesterday resting was 107/70. i guess its just that doc said to get the bp up to mid to high 130s and cap at about 140. i feel somewhat better going up stairs but still cant hike/walk on hills/or jog. thanks for the replies. my primary knows nothing of pots (i just switched from someone who kept telling me my heart rate was fine and that she had no idea why i was always tired but that unless i could think of a test to do, she wasnt going to look into it.) and my ep said that there are no specialists that he is the guy to talk to. ugh! do ther people get that a lot? no one here in california seems to know about it. the potsplace listed a group at stanford, so i guess i'll try to contact them.thanks flop Quote Link to comment Share on other sites More sharing options...
lloppyllama Posted January 20, 2008 Report Share Posted January 20, 2008 Hello,Just wanted to welcome you to the forum, along with tell you that my Midodrine doesn't really affect my blood pressure too much either. ONce I stand up and such it doesnt get as low though, so that makes a difference, however overall throughout the day its about what it was w/o the Mid.Good luck, Feel free to PM with any questions or if you just need to vent! Mary Quote Link to comment Share on other sites More sharing options...
lalalisa Posted January 20, 2008 Report Share Posted January 20, 2008 Tobel,Hello!! I just wanted to say Welcome to the forum!! It sounds like you've had a rough time with dr's who don't understand what your body is going through. Most of us have had to go to numerous dr's before finding one who understands - but in the end it's worth it. Welcome and I hope we can be of help and encouragement to you!Lisa Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 20, 2008 Report Share Posted January 20, 2008 Hi!Welcome to the forum! Yeah, I think I would try to find someone with knowledge of POTS etc. Because they do not sound like they are helping you much. Many of us really struggle in the beginning (and later) to find a knowledgeable dr to help us.Your HR's for a POTsy person don't sound too abnormal, depending on your age you may not want to push yourself that hard while exercising, because that is somewhat high. Use the 220-age to find HR max. Then you probably don't want to be working out at your max either. Depending on your meds and dx's this equation may not pertain to you.I am confused to why you want your BP up? At least anywhere near that high? That isn't healthy, nor the answer for most of us. Depending on your meds you are not likely at all to get that high of a BP. I don't think that Midodrine has to necessarily create much of an increase in BP. You may just see the benefits when you change position- it may allow your body to regulate BP at these times. In this case if your BP tends to be low when you stand up, it may help to keep it around "normal".For Midodrine esp. in the beginning I had BP's of 80/40. So, I would not necessarily worry about increasing your BP, as much as seeing what works to decrease your symptoms.Can your EP help you with meds?Good Luck! Quote Link to comment Share on other sites More sharing options...
tobel17 Posted January 21, 2008 Author Report Share Posted January 21, 2008 I'm in my early 20's, and doc said that thats the max it should get to for my age, but that its not life-threatening.. I don't know why the EP said to get the bp that high, but his idea was that my heart beats faster (its normal resting, but exercise it gets high within a couple steps of jogging) because its making up for blood to my head, so raising BP is a way to keep it from having to beat too hard when i stand up? I dont know. I dont think he really knows what he's talking about. I've tried Fludrocortisone, but I can't stomach it. My BP is pretty stable, i feel like. He hasnt done a tilt test (he had me lay on the table, do bp, sit up, bp, stand, bp) and said that i fit the bill for pots. He has told me that aside from a really dangerous neurotoxin that has had mixed results (which he is unwilling to try) that we've pretty much tried all the meds he can think of (all two i mentioned) and that he doesnt know what else to do.I don't believe him that thats all there is. Just the meds I saw listed on this site.. there's a ton of them! I feel torn because there are so many options, it seems, but that I don't trust him to make the right decisions. So i'm still putting out feelers for doctors. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 21, 2008 Report Share Posted January 21, 2008 Hi again!I wonder what that neurotoxin is he is talking about? A lot of people see relief with beta blockers and SSRI's, so yeah I think I would try to find someone with a little more experience. I too am early 20's. They HR is probably fine then, I just wouldn't want to work at that level to long myself . I am a wimp! Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 21, 2008 Report Share Posted January 21, 2008 My computer messed up! Quote Link to comment Share on other sites More sharing options...
tobel17 Posted January 21, 2008 Author Report Share Posted January 21, 2008 I was on Beta Blockers for a while before I was diagnosed with POTS, and they dont help. The problem, for me, is that I hanker pretty bad to jog, and hike and be active. I want to go on walks with my parents, and hike with my friends, or heck even not have to take the elevator would be nice. I think you guys are right -- it's time to get someone who knows what they're talking about. But I don't want to give up my dream of being active in the things I love. I'm unwilling to just give all that up. Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted January 21, 2008 Report Share Posted January 21, 2008 Did you try more than one beta blocker? What did they do to you?I think it is great you want to try to be active and exercise etc. Are you able to exercise when you have all your symptoms? Is it better on any meds? For most people they will have to take a step back for a little while to try to manage everything. It is important to take care of yourself. Exercise is most definitly important though, just try not to overdue it, it may just make things worse if you exhaust yourself too much! Quote Link to comment Share on other sites More sharing options...
Rachel Posted January 21, 2008 Report Share Posted January 21, 2008 Hello Tobel,Welcome to DINET. I'm glad you found us. I hope that you find this place to be informative and caring.It can be hard to find a knowledgeable doctor, but they are out there. I hope you find a good one.Rachel Quote Link to comment Share on other sites More sharing options...
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