genie Posted January 24, 2004 Report Share Posted January 24, 2004 I have noticed that when I have the energy to exercise and try to do something aerobic that my heart rate goes up sometimes over 200, I noticed that today and will bring that up to the doctor on Monday. Just wondered if any of you have had this happen and if or what the doctors have said about it? Thanks! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 24, 2004 Report Share Posted January 24, 2004 Yes, I have this same problem. I don't overdo it for that reason. I walk and do yoga and that's about it. I would be very curious to know what advice your doctor gives you. I am also going to be asking my doctor about that.Do you notice it is worse in the AM (the tachycardia). Often, I can exercise with more vigor in the PM without having an outrageous heart rate. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 25, 2004 Report Share Posted January 25, 2004 From my experience, whenever I am able to do sustained exercise, my heart rate will easily move up to 185 and a couple of times my heart rate "flipped" into a superventricular state. This is not good. I felt quite faint and fell to my knees to make the white spots clear my brain... I now do not allow my heart rate exceed 140 for exercise, or for anything else. Since I must treat my type of POTS without medication I have been using an "over the counter" type of sports heart rate monitor for three years. The transmitter straps sleekly around the chest and the reciever is a wristwatch. I set my monitor alarm at a low for 40bpm and my high alarm for 140bpm and have learned to live daily within this range. Whether I am trying to go upstairs (a good goal on a rough POTS day) or walk on a treadmill(a good goal on a good POTS day), I know I am okay in this heartrate range. The monitor has helped me learn alot more about my heart response to all kinds of stimilus, environment, sleep, foods, exercise...I encourage anyone to give it a try. I find it reassuring to be able to look at watch and know I'm doing fine.Let me know if you need more information.Tearose Quote Link to comment Share on other sites More sharing options...
geneva Posted January 25, 2004 Report Share Posted January 25, 2004 I would be interested in knowing which heart monitor you use if you don't mind sharing. In the early days of POTS a friend loaned me one of hers but I had trouble with it reading my HR so I have been leary of spending the money. I think it would be very helpful if I could find one that works and use it as you have to set an upper limit. It would be great to know my HR is climbing BEFORE I get into trouble, especially while trying to exercise or even walk outdoors or as an early warning if I am in the store etc. Sounds like the one you have is reliable.Do others have ones they might recommend also? Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 25, 2004 Report Share Posted January 25, 2004 That is exactly what I do geneva, I set the high alarm to go off before I get into my personal danger zone. I would suppose that we all have different allowable personal heart ranges. When you are shopping around for a monitor that will be important for you to know. The brand monitor I use is Polar and they have a web site at polarusa.com. I have been very happy with my simple model which is both a watch and a heart monitor. I have had no problem using or reading it. I purchased my first one at a sports store for $99 and it still works. I have purchased an additional two since then since I use mine continously to manage my POTS. The only thing I had to do to maintain it is send one back for a new battery which cost $10. The only drawback has been the lack of style but that is the least of my concerns as you can appreciate!Tearose Quote Link to comment Share on other sites More sharing options...
geneva Posted January 25, 2004 Report Share Posted January 25, 2004 I just went to their website and clicked on the "cardiac rehab" product group thinking that would be a good one to get and it has the monitor and alarm without a whole lot of other stuff I would never use. My husband is going to try to find one for me this week so I will give it a go. Thanks again for sharing what works for you. never know when it will help others! Quote Link to comment Share on other sites More sharing options...
Roy Posted January 25, 2004 Report Share Posted January 25, 2004 I can't do any aerobic excercise. my HR goes to 185+ which doesn't bother me so much it is the palps that stop me in my tracks. if i start doing anything remotely aerobic my heart tachs out then i start gettting really bad palps back to back. if i lay down to slow my heart rate my heart rates suddenly drops down into the 50's with palps and what feels like skipped beats. my doctor claims that this is ok, but it doesn't feel ok. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted January 26, 2004 Report Share Posted January 26, 2004 If something doesn't feel okay, then don't do it! I think it is vital to trust the little feelings our sensitive bodies are sending us. I think we need to remember we own these bodies and have to live with the consequences of what we put them through. Can you handle 185bpm? I know my limit is less. Tell your dr. that you know you will not feel right and see if you can have a meeting of the minds. Maybe the dr. does not understand.There are days when just going up the stairs could be considered aerobic for me. Do you have to do aerobic exercise right now? If you have to exercise can you manage to just lay on the floor and do some leg lifts? Sometimes just doing floor exercises is enough for me to feel energized and not wiped out! I kinda just make them up as I roll across the floor. ...... I just imagined a roomfull of POTS people exercising... legs flailing, people rolling all over the floor with heart monitors beeping and groans and I actually had a good laugh.. oh well, laughter is the best medicine! Just do what you can, trust yourself. Quote Link to comment Share on other sites More sharing options...
genie Posted January 26, 2004 Author Report Share Posted January 26, 2004 Yeah, the visual I just had of all us POTS on the floor made me laugh out loud - too funny! And you are right laughter is the best medicine. Quote Link to comment Share on other sites More sharing options...
Timbo Posted January 26, 2004 Report Share Posted January 26, 2004 You should try a recumbent exercise bike. Its the kind of bike where you are sitting down with a backrest. It is not like sitting up on a standard exercise bike.It might help bring your heartrate down some.http://www.fogdog.com/product/index.jsp?pr...19804&cp=976898 Quote Link to comment Share on other sites More sharing options...
seaboardbc Posted January 26, 2004 Report Share Posted January 26, 2004 I have the same problem with exercise and my heart rate. My cardiologist sent me to cardiac rehab. Some days I would be normal and other days my HR and BP would go so wacko I was afraid that they were going to admit me. A few rules they set for me were: I couldn't exercise if I came in with a HR above 140, I had to stop if my HR went above 185 and I couldn't use the recumbent exercise bike at all because that really set me out of control. I never "graduated" from rehab because there was no rhyme or reason to how I could perform, so I sort of have an open invite which I'm thinking about using. The other day I went on the treadmill and felt fine until I got off. Then I was the dizziest that I have ever been and it scared me to death because it lasted well over an hour. So I think that I need to go back to supervised exercise. Quote Link to comment Share on other sites More sharing options...
Guest Julia Posted January 26, 2004 Report Share Posted January 26, 2004 Roy,I get the same thing---those stupid palps when I exercise. Walking for a period of time usually does it. The last time I walked was on New Years eve day. It was in the 50s here in Toledo Ohio believe it or not. So I took advantage of the nice day and walked with my Dog.At about the half mile mark I started getting those skipped beats---or flip flop feelings. They usually pass after one or two---but I continued to get more. I had to slowly creep home. I was very lucky I was only a shor block away. I don't think my HR gets up very high though because I don't walk real fast. I think I was walking at a pretty quick pace that day---but again my HR does not go real fast---just the palps when I pick up speed.If I walk slow, i'm usually OK. I would hate to see what happens if I did something really intense like running. I've always been afraid to see what would happen. If 44 years old and was diagnosed with POTS at 41. I have always been able to dance and exercise----with my HR getting up to around 135-150 range---normal. Then after my crash with POTS----very difficult to exercise. I know i've been having problems for many years---but can't pin point when it started---because of constantly being dismissed when I felt bad. It was mild enough---and I could function fairly normal. MVP was diagnosed in the 80s---but was later ruled out. I don't know if this has anything to do with my cervical spine stenosis-or brain stem compression. My endocrinologist told me it was because of pressure on my brain stem???????????????????????!!!!!! I had my regulat visit with him on January 2nd--just two days after the palp episode. Dr. GRubb is my POTS doctor---the Endo is for my hashemotos thyroiditis. I'm thinking about having GRubb do some heart testing.Julie :0) Quote Link to comment Share on other sites More sharing options...
genie Posted January 26, 2004 Author Report Share Posted January 26, 2004 Hello again,I saw my doc today and he said that the absolute highest my heart should be is 190, I am 29 so age plays a role in that. He said that would be 100% and he would like for me not to go over 80% max, thinking 155-165? He also wants me to try the beta-blocker that I have to take on days that I am having heart rates over 100 even on my regular medicine. He thinks this will keep me out of the HIGH rates, not sure how I feel about having to take the beta before exercise but may try it to see if it helps. I think I still struggle with the fact that I used to be very athletic and now have come to only walking most days, I tend to push myself??? Anyway, that's for all the posts, makes me feel normal once again with this abnormal disorder :-) Will let you know how it goes! Quote Link to comment Share on other sites More sharing options...
pamyla Posted January 28, 2004 Report Share Posted January 28, 2004 I had this problem with exercise too. When first diagnosed my resting heartrate was around 120 and the doctor had me step up on a stool a few times. After that my heart rate had soared to around 200. Typically it takes about 20 min of high aerobic exercise to get it that high. I now take beta blockers regularly and am fairly intolerant to exercise. However, even my doctor has said that I shouldn't be doing aerobic exercise. He says stick to walking and swimming. I thought that was advice for all pots patients? I'm surprised to hear what some of you can do! Keep us posted on how it goes!Pam Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 12, 2004 Report Share Posted February 12, 2004 Just as follow up on this topic--I saw my POTS doctor today (Dr. Nsah, formerly of the Johns Hopkins POTS/NMH/CF clinic) and asked him about exercise and heartrate and chest discomfort. I told him that everytime I try to climb more than a flight of stairs I get this weird sensation (not exactly pain) in my chest and my heartrate goes up to maybe 170/180. He told me that I should keep doing it anyway and not be concerned about it, unless I get dizzy afterwards or unless my heartrate remains elevated for a long period of time afterwards. He said I shouldn't push myself to the point of exhaustion, but that I should go ahead and do aerobic exercise every day, even when the chest discomfort occurs. He didn't think a heart monitor is necessary. Quote Link to comment Share on other sites More sharing options...
denabob Posted February 13, 2004 Report Share Posted February 13, 2004 The high heart rate after exercise (according to my doc.) isone of our main symptoms. I know it may sound like I'm trying to sell the stuff ,but I take octreotide lar injections and before the med 4 minutes on a stairmaster and my heartrate went from 85 to 198. I rested for 15 min. and recieved an injection and got right back on it and went for 11 min and my rate didn't go above 145. I got ill the first time then after the shot the second go 'round felt fine. Of course I still had the residual headache from the first go round. Good luck with the beta-blocker but I didn't do well on them. It covered the rate but I still got ill. Everyone is different though so hopefully they wont label you "refractory to therapy" like they have me.I wish you the best!! Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted February 13, 2004 Report Share Posted February 13, 2004 Momtogiuliana, I am so frustrated for you. Maybe because I have very similar experiences as you describe...I don't agree with pushing as hard as it sounds as you are. When you get to the top of the stairs do you need to sit down? If you exercise at that high a heart rate aren't you too tired for the rest of the day? When times are rough, it is important not to get deconditioned but it sounds like you get aerobic activity just going up the stairs. Just doing leg lifts from lying on the floor will be exercise. I don't think there is any bad to come out of having a heart monitor. I believe it helps people with dysautonomia to work and live within a "range" that doesn't let us get into a danger/dizzy zone. The heart rate monitor has been a true life altering freeing tool for me. Good wishes, tearose Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted February 14, 2004 Report Share Posted February 14, 2004 Tearose,Thanks for your post. Yeah, I was hoping for more definitive direction from my doctor on this. And I can see that a heartrate monitor might be helpful. I think what he's trying to say to me is not to worry about the high heart rate or any strange feelings in my chest b/c there is nothing wrong with my heart, and that my state of being de-conditioned adds to my POTS symptoms. It used to be, when my POTS was more severe, that climbing the stairs or something similar would take all my energy I had for several hours or even a whole day. That is not the case anymore, however, I find climbing stairs very taxing. Anyway, I plan to stick with yoga, floor exercises and walking and only trying the stairs on days I feel best.I appreciate your empathy! Quote Link to comment Share on other sites More sharing options...
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