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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!
I totally agree with you when you say that there is none if little awareness of this condition in the UK. I have suffered from this first hand. But there is help out there available on the NHS. All you have to do is ask your consultant for a referral, to be honest I had to push for mine, but you can and should get one considering the rarity of the condition. If not PALS (Patient Advice and Liaison Service) can help you or the CAB (Citizens Advice Bureau) can. I can give you details of the autonomic clinic that can help you. You do not have to pay to be seen by a doctor well known within this field.
I have POTS and I do not faint, I have many pre-syncope episodes but I never pass out. This is not a requirement of a POTS dx and a lot of people with POTS do not faint. The diagnosing symptom of POTS is an increase in Heart Rate of 30bpm or to 120bpm within approx 10minutes when going from a laying to standing position. Below is a link with info on this:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia--POTS-Diagnostic-Criteria/show/1011?cid=196
Do you happen to know what happened to your heart rate and BP on your Tilt Table Test results? I ordered a copy of mine from the Medical Records Department of the hospital that carried out my test.
What treatment have you been on and what treatment are you having now? If you do have a dx of POTS I am assuming you have been told the basics including to increase your fluid and salt intake and wear compression garments.
The symptoms we here, whom suffer from dysautonomia, experience are hard to believe to people who do not suffer them, but we who do suffer from them understand. I to never believed that one could feel so ill and have so many 'strange' symptoms, until it happened to me.
I have POTS and I do not faint, I have many pre-syncope episodes but I never pass out. This is not a requirement of a POTS dx and a lot of people with POTS do not faint. The diagnosing symptom of POTS is an increase in Heart Rate of 30bpm or to 120bpm within approx 10minutes when going from a laying to standing position. Below is a link with info on this:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia--POTS-Diagnostic-Criteria/show/1011?cid=196
Do you happen to know what happened to your heart rate and BP on your Tilt Table Test results? I ordered a copy of mine from the Medical Records Department of the hospital that carried out my test.
What treatment have you been on and what treatment are you having now? If you do have a dx of POTS I am assuming you have been told the basics including to increase your fluid and salt intake and wear compression garments.
The symptoms we here, whom suffer from dysautonomia, experience are hard to believe to people who do not suffer them, but we who do suffer from them understand. I to never believed that one could feel so ill and have so many 'strange' symptoms, until it happened to me.
Thanks everyone, just getting a response form people who can understand or relate and don't judge me means a great deal.
Like most of you I have tried all I can think of. I was with an Internsive Home Treatment Team instead of being admitted to hospital, but was discharged after a few mothns as no improvement. The NHS here lterally have never heard or are aware of dysautonomia or Potts.
I have been in and out of doctors non stop, and have every type of prognosis thrown at me, and tried to resolve it in the way I've been reccommended. I have had OCD since an early age and depression, but this is far different to anything I have experienced or could even imagine. I don't feel depressed or anxious, just so so ill. My rsting HR used to belate 30's-40, now I can go for days with it over 100.
Brain scans, ECG's, eye tests just to name a few. I had a tilt-table, and although it made me very sick I did not pass out. The levels of fitness I have pushed my body to allow me to just about keep from fainting, but the private doctor I saw recently explained this only means my body has become used to it, and dysautonmia is a reality to me, something I reused to admit for a long time. He is the only person who understands the siuation and has a grasp of POTS, but he is expensive.
I have pushed my body to the extreme and would often train until I was sick. I was known as 'the body' of rugby in my country, but in reality it was all a cover up for how terrible I've felt. I would have to drug myself right up on Tramadol and pre-workout suppliments, and use benzos etc to stop me being very ill after.
I have never used and never will use steroids, as I was, and hope perhaps one day to be a tested athlete again. However, I suffer from low testosterone, due to taking a certain anti D since a young age. This is another factor in my deteriorating health, and as my doctor explained it's like I've been trying to run a farrari on lighter fluid for 6 years.
As I said all my money is gone. The rugby world just think I have given up, when in fact I would give anything to feel ok, and get back to it.
The symptoms I have are too extreme for people to understand. My parents, friends and girl get so upset, angry and frustrated that they can only watch as I fall iller and iller. People can't understand or believe how I feel, and to be honest neither would I, as I never knew one could feel so ill and have so many horrendous symptoms.
The doctor some of you mention is a great help and I will look it up, but because I had to give up playing, and have used all of my savings from playing I'm not sure how I could afford it.
The doctor I saw the other day said it is likely I'll need to be an impatient in hospital, as lying here all die feeling like death is no good. I have no real support or understanding, and I fear for the worste as this does not go. A life like this is simply not possible, so I will e doing everything I can, which is sometimes not a lot at all, as I can barely walk in a strainght line.
Thank you everyone, as I say just to read your replies gives me a glimmer of hope that I didn't have before. I could listb all the symptoms, but I worry you may find it hard to believe. Also if more depth into what treatment or tests would help you help me, I will do that.
Thanks everyone, from my heart
Like most of you I have tried all I can think of. I was with an Internsive Home Treatment Team instead of being admitted to hospital, but was discharged after a few mothns as no improvement. The NHS here lterally have never heard or are aware of dysautonomia or Potts.
I have been in and out of doctors non stop, and have every type of prognosis thrown at me, and tried to resolve it in the way I've been reccommended. I have had OCD since an early age and depression, but this is far different to anything I have experienced or could even imagine. I don't feel depressed or anxious, just so so ill. My rsting HR used to belate 30's-40, now I can go for days with it over 100.
Brain scans, ECG's, eye tests just to name a few. I had a tilt-table, and although it made me very sick I did not pass out. The levels of fitness I have pushed my body to allow me to just about keep from fainting, but the private doctor I saw recently explained this only means my body has become used to it, and dysautonmia is a reality to me, something I reused to admit for a long time. He is the only person who understands the siuation and has a grasp of POTS, but he is expensive.
I have pushed my body to the extreme and would often train until I was sick. I was known as 'the body' of rugby in my country, but in reality it was all a cover up for how terrible I've felt. I would have to drug myself right up on Tramadol and pre-workout suppliments, and use benzos etc to stop me being very ill after.
I have never used and never will use steroids, as I was, and hope perhaps one day to be a tested athlete again. However, I suffer from low testosterone, due to taking a certain anti D since a young age. This is another factor in my deteriorating health, and as my doctor explained it's like I've been trying to run a farrari on lighter fluid for 6 years.
As I said all my money is gone. The rugby world just think I have given up, when in fact I would give anything to feel ok, and get back to it.
The symptoms I have are too extreme for people to understand. My parents, friends and girl get so upset, angry and frustrated that they can only watch as I fall iller and iller. People can't understand or believe how I feel, and to be honest neither would I, as I never knew one could feel so ill and have so many horrendous symptoms.
The doctor some of you mention is a great help and I will look it up, but because I had to give up playing, and have used all of my savings from playing I'm not sure how I could afford it.
The doctor I saw the other day said it is likely I'll need to be an impatient in hospital, as lying here all die feeling like death is no good. I have no real support or understanding, and I fear for the worste as this does not go. A life like this is simply not possible, so I will e doing everything I can, which is sometimes not a lot at all, as I can barely walk in a strainght line.
Thank you everyone, as I say just to read your replies gives me a glimmer of hope that I didn't have before. I could listb all the symptoms, but I worry you may find it hard to believe. Also if more depth into what treatment or tests would help you help me, I will do that.
Thanks everyone, from my heart
I would like to start this post to you by saying that you are not alone, there are many here who can relate to how you are feeling. I, to, am one of them. When my POTS hit me full force I was bedridden for a few months, I was in hospital for 2 of those. No-one could figure out what was wrong with me and I thought my life was over. I was devastated, I had 3 children and didn't know what was happening to me, my symptom list was extensive and did not fit into a regular illness. I had always been so independent, had my own businesses and then moved to employment that was not so time consuming as I was a single mum. I did not believe/feel I would ever improve. I was eventually dx with POTS but I have still had to fight for help and treatment. I have to travel from the NorthWest of England to London to see a specialist in this type of illness, I now see Prof. Mathias who is based in St Mary's Hospital and in The National Hospital for Neurology and Neurosurgery in Queens Square. I am, bit by bit, regaining my life back. My health is not great but hey, I am getting better.
I do believe that with a correct diagnosis and treatment there is every chance that you can get your life back and please keep fighting for this.
Do you have a diagnosis, or are your doctors unsure?
If you wanted, we here could help you and offer you support. I know you mentioned that listing your symptoms would take a while, but if you could this would help. So would info regarding testing you have had so far.
I do believe that with a correct diagnosis and treatment there is every chance that you can get your life back and please keep fighting for this.
Do you have a diagnosis, or are your doctors unsure?
If you wanted, we here could help you and offer you support. I know you mentioned that listing your symptoms would take a while, but if you could this would help. So would info regarding testing you have had so far.
Actually, I remembered after I was off the computer evo calls him Prof. Mathias. And I just looked back in my inbox and saw she mentions an autonomic unit in London.
I'm am so sorry to read of your anguish at this time. There is definitely help out there. As SurgiMenopause said, if you are in the UK, there is a Dr. Mathias that specializes in dysautonomia. We can get you his contact information. If you are elsewhere (I'm sorry, I don't know off the top of my head if any other places use pounds as currency), let us know where you are and we will try to find you help. You can send a private message any of the community leaders [CLs] here on the dysautonomia forum on MedHelp by hovering over our name and then clicking on "send message" in the menu that drops down; the CLs are the ones of us with the little purple flower by our usernames, if you want to keep your location private from the forum and just directly message one of us.
When were you diagnosed with POTS? I'm assuming you are in the UK since you are using the pounds symbol? There is, according to my friend evo on this website, a Dr. Mathias in the UK who specializes in this area. I plan to let her know of your post here.
I am so sorry you are having such a rough time of it. It must be especially difficult for an athlete such as yourself. Ending your life would be tragic because life is a precious gift from God not to be extinguished by one's own hand.
Besides there being people here on earth who love you, there are other doors of opportunity to do things that may open to you. Look at American football, basketball and baseball players here in the United States- they have to hang it up at some point, some due to injury or medical problem, some age, and go on and find another interest to pursue.
If you want to know the Author of joy and pleasure Who longs for you to have a relationship with Him, please don't hesitate to private message me and I'd be happy to tell you about the Lord of my life, my reason for living!
I am so sorry you are having such a rough time of it. It must be especially difficult for an athlete such as yourself. Ending your life would be tragic because life is a precious gift from God not to be extinguished by one's own hand.
Besides there being people here on earth who love you, there are other doors of opportunity to do things that may open to you. Look at American football, basketball and baseball players here in the United States- they have to hang it up at some point, some due to injury or medical problem, some age, and go on and find another interest to pursue.
If you want to know the Author of joy and pleasure Who longs for you to have a relationship with Him, please don't hesitate to private message me and I'd be happy to tell you about the Lord of my life, my reason for living!
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