Alyssa Posted January 7, 2012 Report Share Posted January 7, 2012 Today I decided to get some much needed cleaning done since I had some extra energy.I had my HR monitor on so that I could watch what it was doing. For the first hour, my HR stayed above 140bpm. Then it stabilized(!) and went to 90, and then I suddenly felt very weak and my HR was at 49. I sat down and it went to 30bmp. I stayed conscious, which i found weird. I took my BP and it was at 150/100, and HR at that time was 50bpm.It keeps doing this. One minute my HR is really high, then it slows down drastically, followed by a period of tachycardia again. Blood pressure is also going up and down.The only med I am on currently is 10mg midodrine 4x per day.What's going on? I'm very confused and a bit worried. Wondering how possible it is that my heart has been dropping randomly all the time...perhaps contributing the large number of faints I experience per day?Thoughts? Should I consider going to the ER, or wait it out? Quote Link to comment Share on other sites More sharing options...
E246 Posted January 7, 2012 Report Share Posted January 7, 2012 Hi,I have the same experience and have wondered if it is the body's response to the tachycardia - it's as thought the heart needs a rest. Wonder if anyone else on the forum has had an explanation from a doctor. I will definitely be mentioning it at my next appointment as it has started to happen daily for me. I have been taking fludrocortisone for a few weeks and i am now more active so like you it has happened following doing active stuff around the house.My son was recently tested for POTs and his hr at the time was averaging 44 resting and i was amazed that nothing more than a monitor was given to him. i thought a hr consistently at this pace would have warranted some immediate action.I would definitely mention it next time you see a doctor. How long do the episodes go on for? Let me know whats said. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 7, 2012 Report Share Posted January 7, 2012 I too have been having the exact same issues and it just started a few weeks ago....not sure what the heck is going on...will be seeing GP next week and I am going to bring it up but she probably wont have any answers Bren Quote Link to comment Share on other sites More sharing options...
puppylove Posted January 7, 2012 Report Share Posted January 7, 2012 I had this exact thing also but it started happening right after I went on midodrine. When I stopped the midodrine it stopped too so I guess it was a reaction. Could yours possibly be a reaction also? Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted January 8, 2012 Report Share Posted January 8, 2012 Mine's all over the place too. 30's lying/sleeping , 150 standing but I usually have low BP with it. I'm not on any BP meds but am on MCAD meds Quote Link to comment Share on other sites More sharing options...
Alyssa Posted January 8, 2012 Author Report Share Posted January 8, 2012 Good to know I'm not the only one! My heart rate has continued to drop periodically today, followed by periods of really high blood pressure. I plan to call my doctor tomorrow. We just upped the dose of Midodrine, so I'm thinking that may have something to do with it. Though, he assured me it would have no adverse affect on my heart.... Quote Link to comment Share on other sites More sharing options...
E246 Posted January 8, 2012 Report Share Posted January 8, 2012 Does your your bp go up when your hr goes down? Quote Link to comment Share on other sites More sharing options...
blitzk Posted January 8, 2012 Report Share Posted January 8, 2012 Currently undiagnosed but been monitoring my heart rate this weekend. This morning went from 60 and dropped suddenly to 30 andback up to normal. Been having flutters in my chest daily sermingly worse during my monthly cycle.is this POTS related? Quote Link to comment Share on other sites More sharing options...
Alyssa Posted January 8, 2012 Author Report Share Posted January 8, 2012 Emma, yes my BP skyrockets when my HR plummets almost every time. Quote Link to comment Share on other sites More sharing options...
julieph85 Posted January 9, 2012 Report Share Posted January 9, 2012 Alyssa, when your vagal nerve is stimulated via a vasalva reflex your BP goes way up and your heart rate goes way down. This is the same effect as when you bear down or blow up a balloon. It is what they measure during autonomic testing to test your parasympathetic nervous system. If you think of it like blowing up a balloon- during the time you are bearing down and blowing up the balloon your heart rate is fast and your blood pressure drops and then when you suddenly stop your heart rate drops very low and your BP jumps way up. That is why we often feel like passing out after, it is the huge decrease in heart rate followed by the spike in blood pressure. This reminds me of what your describing. The reason your not fainting from the slow heart rate is because your bp is so high. It makes me think youre vagal nerve is being over stimulated. Either by the drug or the pots. I could be wrong, it just reminds me of what your describing. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted January 9, 2012 Report Share Posted January 9, 2012 Mine is the same as puppylove, it happened when i was on midodrine and stopped when i got off of it. My guess would be that low hr is compensating for your high bp or vice versa. When it happened to me, i called 911 and the emts said the ekg was upside down, like one of the lines was backwards. They didn't give the slip to the e.r. so i guess we'll never know what was happening. But the good news is that your bp was high--if it weren't you wouldn't have remained conscious. But at the same time, having a high bp isn't good either. Have you tried florinef? I hated the midodrine and found that florinef works much better for me Quote Link to comment Share on other sites More sharing options...
jenglynn Posted January 9, 2012 Report Share Posted January 9, 2012 I am glad I am not alone (not that I want any of you dealing with it either... but I guess I feel a little less scared) Until VERY recently... I was very typical orthostatic hypotensive. Lying down, perfectly normal. HR 65-85 and BP 90/70 or 100/80 and felt fine. Over this last week but BP has been ALL over the place. I've had it as high as 175/120 with my HR at 39. That is lying down. So I sit up to check it... it drops to 100/80 and HR goes up to 140. I don't even try standing with a 75 point drop in BP. Periodically, I check my pulse lying down and it has been in the 30's thru 50's. This has NEVER been the case. I have always just had the orthostatic changes (which are quite dramatic) but always low, low, BP and tachycardia. These low HR are totally new in the last week. Then I checked my BP a little bit ago, lying down and it was 72/44 with a pulse of 39???? I sat up to check it and my monitor couldn't detect my BP but my wrist monitor said my pulse was 105. I am beyond confused. I am attributing to a side effect of my iVIG infusions but have also been thinking about talking to my doctor but after spending the last several weeks in the hospital I can't even BEGIN to think about going back..... Any input would be great! Quote Link to comment Share on other sites More sharing options...
Alyssa Posted January 10, 2012 Author Report Share Posted January 10, 2012 That makes so much more sense, thank you!And I have tried florinef, but I got a really bad reaction within an hour of taking it and now can't take it. Also tried BBs, but they messed with my breathing too much. So for now, it's midodrine or nothing.... sometimes I think nothing might be better lol Quote Link to comment Share on other sites More sharing options...
corina Posted January 10, 2012 Report Share Posted January 10, 2012 my cardio explained the drop in hr to me by saying that it dropped because there was not enough blood to pump and the heart protects itself by dropping the rate. he strongly advized me to keep my hr under 120 as that will lead to a less dramatic drop (if one at all). i haven;t measured bp while my hr dropped. Quote Link to comment Share on other sites More sharing options...
Alyssa Posted January 10, 2012 Author Report Share Posted January 10, 2012 Hmmm keep your HR under 120? Wow. I don't think I could do that; never seen it below 120 when standing Quote Link to comment Share on other sites More sharing options...
corina Posted January 11, 2012 Report Share Posted January 11, 2012 alyssa, now that i'm on octreotide (combined with an ssri) my hr doesnt shoot up on standing anymore, so now i just need to keep it down while exercizing (walking, swimming and a little biking).before finding this combination my hr went up to 200 on standing so this is a hughe improvement! Quote Link to comment Share on other sites More sharing options...
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