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Active life with POTS?
Does anyone else lead a very active lifestyle while being very symptomatic with POTS? I'm pretty new to this while thing, and very close to being dxed by my EP, who's solution has essentially been to stop my level of activity because I'm now to sick to keep going with it, and will hurt myself if I continue. Thing is, I'm a dance minor in college, and at the moment that's not exactly an option for me. I have a tendency to push through my symptoms, and literally the only thing that will stop me is if I'm about to pass out.
At the moment my symptoms are mostly cardiac in nature, and seem to me to be more reflective of IST than POTS. I'm wondering, is it possible to have IST (or other arrhythmias) and POTS at the same time? In my tilt table my blood pressure didn't drop as expected in the head up position, but my heart rate did sky rocket, and generally increase when I was up. I also had a very marked sensitivity to the isoproterenol. For my stress test, I made it to stage 4, but overshot my high target heart rate by 20% (went to 190), and my blood pressure didn't go up after stage 2 (in fact the systolic dropped a few times) before I suddenly got very dizzy, lost my breath completely and nearly passed out. I got very flushed, but didn't break a sweat before the last few minutes. For an hour after my heart rate was 110-135 at rest, and I was very lightheaded, dizzy, shakey, nauseated, and started coughing and wheezing a little. for another hour after that it went down into the 70's, but would jump back to the 120's with the slightest movement (shifting in my chair, adjusting my jacket), standing sent it to 135, along with the dizziness, weakness, all the usual fun- which is how they sent me home, saying I was back to my "normal". It seems to me that I have some level of symptoms nearly all the time, but they're the most exaggerated when I'm active. As a dancer, this is obviously somewhat of an issue. But it seems that my EPs are telling me that the best way to resolve my symptoms would be to stop dancing, this is POTS, there is no cure, I have to give in to it and manage my life the best I can. I'm currently on 25mg toprol, .1mg florinef, and 75mg topamax, which manage things a little bit, but on bad days everything breaks through like I'm taking nothing at all. To make matters more complex, my bp is all over the place at rest (sometimes too high, sometimes too low), but if I take more than 12.5mg of toprol at a time, it sends my bp and heart rate crashing. I'm also intolerant of any kind of ace inhibitor, and my docs are (understandably) paranoid about giving me anything that will raise my blood pressure, although at this point it doesn't seem like it's gone all that high.
My question is, is it possible to lead an active, athletic lifestyle with POTS? Or does it have to go into remission before you can fully resume activity on that level? I suppose what I miss most is feeling GOOD while dancing... I know there was a time when I did. I can still make myself do the motions, my heart is still in it, I just feel like death while I'm doing it. My symptoms are also spilling over into my every day life too, and starting to get in the way of my everyday activities. Before I started testing my doctors didn't believe me when I said how far I forced myself once I started feeling symptomatic. They do now, but their only answer is stop dancing. There has to be another solution. Athletes with POTS, are there any out there?
Another random question: Why to electrophysiologists end up handling POTS patients so often? I know tachycardia is an EP issue, but POTS in general is a dysautonomia issue. Does it simply depend on the patient's worst symptoms or the doctor near them that can handle their case the best?
Thank you in advance!
At the moment my symptoms are mostly cardiac in nature, and seem to me to be more reflective of IST than POTS. I'm wondering, is it possible to have IST (or other arrhythmias) and POTS at the same time? In my tilt table my blood pressure didn't drop as expected in the head up position, but my heart rate did sky rocket, and generally increase when I was up. I also had a very marked sensitivity to the isoproterenol. For my stress test, I made it to stage 4, but overshot my high target heart rate by 20% (went to 190), and my blood pressure didn't go up after stage 2 (in fact the systolic dropped a few times) before I suddenly got very dizzy, lost my breath completely and nearly passed out. I got very flushed, but didn't break a sweat before the last few minutes. For an hour after my heart rate was 110-135 at rest, and I was very lightheaded, dizzy, shakey, nauseated, and started coughing and wheezing a little. for another hour after that it went down into the 70's, but would jump back to the 120's with the slightest movement (shifting in my chair, adjusting my jacket), standing sent it to 135, along with the dizziness, weakness, all the usual fun- which is how they sent me home, saying I was back to my "normal". It seems to me that I have some level of symptoms nearly all the time, but they're the most exaggerated when I'm active. As a dancer, this is obviously somewhat of an issue. But it seems that my EPs are telling me that the best way to resolve my symptoms would be to stop dancing, this is POTS, there is no cure, I have to give in to it and manage my life the best I can. I'm currently on 25mg toprol, .1mg florinef, and 75mg topamax, which manage things a little bit, but on bad days everything breaks through like I'm taking nothing at all. To make matters more complex, my bp is all over the place at rest (sometimes too high, sometimes too low), but if I take more than 12.5mg of toprol at a time, it sends my bp and heart rate crashing. I'm also intolerant of any kind of ace inhibitor, and my docs are (understandably) paranoid about giving me anything that will raise my blood pressure, although at this point it doesn't seem like it's gone all that high.
My question is, is it possible to lead an active, athletic lifestyle with POTS? Or does it have to go into remission before you can fully resume activity on that level? I suppose what I miss most is feeling GOOD while dancing... I know there was a time when I did. I can still make myself do the motions, my heart is still in it, I just feel like death while I'm doing it. My symptoms are also spilling over into my every day life too, and starting to get in the way of my everyday activities. Before I started testing my doctors didn't believe me when I said how far I forced myself once I started feeling symptomatic. They do now, but their only answer is stop dancing. There has to be another solution. Athletes with POTS, are there any out there?
Another random question: Why to electrophysiologists end up handling POTS patients so often? I know tachycardia is an EP issue, but POTS in general is a dysautonomia issue. Does it simply depend on the patient's worst symptoms or the doctor near them that can handle their case the best?
Thank you in advance!
Hi there,
I am a fromer professional rugby player who tried to play through what docs called anxiety. I am 3 days out of my contract, as the last game almost killed me. I have symptoms 24 hours a day, and have am recognised as one of my countries best players.
I have lost my job, friends, and any quality of lif I had, and am iller than I ever imagined. I have spent all my money £30,000 plus on trying to solve this, and have kept it quiet from the sporting world.
I was injured for 5 years, trained 5 hours a day to get back, and had some pro boxing bouts, only to be struck by this last yeear. I have considerations of taking my life, but love my family and girl too much. I can't leave the house right now, my symptoms are too bad, and have noone to talk to as what I try to explain seems too far fetched.
I have been through painkiller addiction because of this and very nearly died. I would not quit training and playing with it which also almost killed me, and I now don't know where I go from here.
I was told it's just anxiety, when I'm back playing I'll be fine, but every day gets worse. I can't begin to write the symptoms it would take all night.
I can't take this 24 hour hell. I was an International rugby player at 20, in a country where it is the main sport, and just switched codes to rugby league. As I say I am not playing now, and papers are starting to write what is going on. I had another chance, another future, but this has ruined me.
People don't know my condition, I haven't answered my phone in weeks. My Dad had to phone my agent and club, and they will both stand by me, but it has been over a year, and I struggle to see a way out.
Is there any chance I can live a normal life ever again? I'm not too hopeful just now, and need help before it's too late.
Thanks guys
I am a fromer professional rugby player who tried to play through what docs called anxiety. I am 3 days out of my contract, as the last game almost killed me. I have symptoms 24 hours a day, and have am recognised as one of my countries best players.
I have lost my job, friends, and any quality of lif I had, and am iller than I ever imagined. I have spent all my money £30,000 plus on trying to solve this, and have kept it quiet from the sporting world.
I was injured for 5 years, trained 5 hours a day to get back, and had some pro boxing bouts, only to be struck by this last yeear. I have considerations of taking my life, but love my family and girl too much. I can't leave the house right now, my symptoms are too bad, and have noone to talk to as what I try to explain seems too far fetched.
I have been through painkiller addiction because of this and very nearly died. I would not quit training and playing with it which also almost killed me, and I now don't know where I go from here.
I was told it's just anxiety, when I'm back playing I'll be fine, but every day gets worse. I can't begin to write the symptoms it would take all night.
I can't take this 24 hour hell. I was an International rugby player at 20, in a country where it is the main sport, and just switched codes to rugby league. As I say I am not playing now, and papers are starting to write what is going on. I had another chance, another future, but this has ruined me.
People don't know my condition, I haven't answered my phone in weeks. My Dad had to phone my agent and club, and they will both stand by me, but it has been over a year, and I struggle to see a way out.
Is there any chance I can live a normal life ever again? I'm not too hopeful just now, and need help before it's too late.
Thanks guys
Hi there, I came down suddenly with pots in July. before then i worked out almost everyday. I have been getting better, but Ive been taking it easy. You really need to let your nerves heal.. When you have pots your nerves in your autonomic nervous system are damaged and need that time to heal.. Just yesterday i tried the wii fit by nintendo and did some strength training and yoga it felt so good. So to answer your question is yes you can be active, but you definately will have to modify it, and try to be patient that you hopefully will return to "normal" some day soon. Also my cardio said the few pots patients hes had in the last 15 yrs have all eventually gotten over it in time. That definately gives me hope!!!
Oh yeah. Definitely keep your docs appraised of your bruising tendency. It can be a sign of things like Addison's (which happens to be a potential cause of POTS-like symptoms) so keep on the lookout for anything that starts fitting a general pattern like that. Some endocrine tests might be worth pursuing if it seems like a possibility. I understand the challenge when operating without insurance (I have insurance but it's high-deductible), but at least keep these alternatives and screening tests in mind overall.
Oh yeah, the heart rate monitor is great advice. It gives an objective target which might help overcome the trouble of knowing how much is too much when our impulse is to push as far as possible! I think it's tough for people who have the rapid onset POTS stuff since there is such a contrast and frustration. On the up side, I think they are said to be more likely to recover... so keep fingers crossed for that! I'm afraid either way there will likely be some compromises to activity.
For me, it's like an intermittent problem... I often don't know today if I will be able to be active tomorrow... so individual activities end up being my deal. You could consider yourself in rehab... I have heard of some being enrolled by their EP's in cardiac rehab programs that are quite helpful. It's awkward because we're dealing with a so called "invisible illness" or whatever. Mostly invisible to others, but even somewhat to ourselves since we don't have the "luxury" of a broken bone or something to make our limits clear.
For me, it's like an intermittent problem... I often don't know today if I will be able to be active tomorrow... so individual activities end up being my deal. You could consider yourself in rehab... I have heard of some being enrolled by their EP's in cardiac rehab programs that are quite helpful. It's awkward because we're dealing with a so called "invisible illness" or whatever. Mostly invisible to others, but even somewhat to ourselves since we don't have the "luxury" of a broken bone or something to make our limits clear.
I know it is frustratring for you but you said it " I'm afraid that I'm going to make all of this go on for longer than it has to if I keep pushing myself like I am. I suppose it takes time to find a way to balance it all. "
You are the only one that can know when you should stop, not when you want to stop, there is a difference, by wearing the heart rate monitor I have been able to do so much more than not wearing it. My heart rate goes up very quickly and it slows down very quickly too so as soon as it beeps it only takes seconds before I can resume and by not letting my heart rate go to the point where I feel sick I don't have to crash after a workout I can come home and continue with my routine.
It is true though that you should remain active, but your body needs to not be pushed to extremes it might make you crash for a long period of time and that will be worse.
All the best and keep us updated!
My girls take ballet and jazz they love it!
You are the only one that can know when you should stop, not when you want to stop, there is a difference, by wearing the heart rate monitor I have been able to do so much more than not wearing it. My heart rate goes up very quickly and it slows down very quickly too so as soon as it beeps it only takes seconds before I can resume and by not letting my heart rate go to the point where I feel sick I don't have to crash after a workout I can come home and continue with my routine.
It is true though that you should remain active, but your body needs to not be pushed to extremes it might make you crash for a long period of time and that will be worse.
All the best and keep us updated!
My girls take ballet and jazz they love it!
Supineallthetime, you do make an excellent point about our bodies essentially operating like athletes all the time. But jeez, what a way to do it!
I'm definitely one of those that's not too good with holding back on pushing my limits, and have definitely ended up with lectures every time I've left my doc's office since this whole POTS epic has started. I'd been the type to jump to my feet, skip down the street, grande jete down a hall... no more I suppose. What's difficult for me is the fact that I dance 10-12 hours a week, and take 18-21 credit hours per semester in school. Down time wasn't something I had much of, but I didn't mind it, it was just the life I was use to. I've been vaguely sick with something or other on and off for years, it was just within the past few months (post appendectomy and hiatus hernia repair if you can believe it) that everything seemed to spiral out of control. I have this hope that since I never had heart problems like this before the surgery that maybe this is just some majorly out of proportion response to the stress of that, and that eventually I'll be able to recover from this and move on. The idea of a heart monitor is good, but what concerns me is that my heart rate goes up so easily sometimes it's not even funny (again, something I know you guys can all relate to). It gets more complicated when I'm in the middle of a university dance class- I can't just walk out. Well I can, but I have a tendency not to (more of that pushing beyond my limits thing). I was in a placement audition yesterday, and about an hour and a half into it, my muscles were shaking so badly I was surprised I could hold anything. Tremors I think? I don't even want to know what my heart was doing, but this was an audition that wasn't optional for me. I paid for it with an extremely high heart rate and being knocked out for the rest of the day. I ended up so bruised from the floor work I look like I've been in a fight. (This is new for me. I bruise easily, but not typically THIS severely or easily.)
I'm having such a hard time finding that balance. If anyone here knows the spoon theory, it's like I'm running on imaginary spoons all the time. I know I'm making things worse (for instance the more active I am, the less me meds seem to work for me), but I keep hearing that we need to be as active as we possibly can be. Problem is that I'm so use to pushing myself that I don't start to feel physically bad until I'm well past the point where I should have stopped, but I'm not sure if not noticing is a physical or mental thing (as in I'm so focused on what I'm doing, I don't notice I really should stop until I'm about to drop over). I'm afraid that I'm going to make all of this go on for longer than it has to if I keep pushing myself like I am. I suppose it takes time to find a way to balance it all.
I'm definitely one of those that's not too good with holding back on pushing my limits, and have definitely ended up with lectures every time I've left my doc's office since this whole POTS epic has started. I'd been the type to jump to my feet, skip down the street, grande jete down a hall... no more I suppose. What's difficult for me is the fact that I dance 10-12 hours a week, and take 18-21 credit hours per semester in school. Down time wasn't something I had much of, but I didn't mind it, it was just the life I was use to. I've been vaguely sick with something or other on and off for years, it was just within the past few months (post appendectomy and hiatus hernia repair if you can believe it) that everything seemed to spiral out of control. I have this hope that since I never had heart problems like this before the surgery that maybe this is just some majorly out of proportion response to the stress of that, and that eventually I'll be able to recover from this and move on. The idea of a heart monitor is good, but what concerns me is that my heart rate goes up so easily sometimes it's not even funny (again, something I know you guys can all relate to). It gets more complicated when I'm in the middle of a university dance class- I can't just walk out. Well I can, but I have a tendency not to (more of that pushing beyond my limits thing). I was in a placement audition yesterday, and about an hour and a half into it, my muscles were shaking so badly I was surprised I could hold anything. Tremors I think? I don't even want to know what my heart was doing, but this was an audition that wasn't optional for me. I paid for it with an extremely high heart rate and being knocked out for the rest of the day. I ended up so bruised from the floor work I look like I've been in a fight. (This is new for me. I bruise easily, but not typically THIS severely or easily.)
I'm having such a hard time finding that balance. If anyone here knows the spoon theory, it's like I'm running on imaginary spoons all the time. I know I'm making things worse (for instance the more active I am, the less me meds seem to work for me), but I keep hearing that we need to be as active as we possibly can be. Problem is that I'm so use to pushing myself that I don't start to feel physically bad until I'm well past the point where I should have stopped, but I'm not sure if not noticing is a physical or mental thing (as in I'm so focused on what I'm doing, I don't notice I really should stop until I'm about to drop over). I'm afraid that I'm going to make all of this go on for longer than it has to if I keep pushing myself like I am. I suppose it takes time to find a way to balance it all.
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