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 (shaky), 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!

[MarisaV]

RA,

Hopefully someone will be able to answer your question. I'm very new to this, just diagnosed with dysutnomia (if they're correct), and just starting treatment with propranolol.

My opinion, and that's all it is, is that everyone will react differently. Some will see their life return to almost normal, and others will not.

Over the last 4 couple of years, I've gone from working 70 to 90 hrs per week, kick-boxing and yoga nearly every day, weight-lifting, etc., to barely being able to work 4 hours per day (and that was more tiring than a 90 hr work week)... So, I guess time will tell, whether anything works for me, or whether or not things go through cycles.

Hopefully, some one will answer your questions soon.

Take care.

Mar

[supineallthetime]

I'm not really sure about the issue of pushing through symptoms.  My impression is that there is a virtual consensus that maintaining the most activity you can, short of triggering aggravation of symptoms, is a recommended overall strategy.  I've read that extended rest is generally not beneficial and my personal experiments with that have resulted in very bad setbacks to my abilities (rather than any restorative effect).  Modest rest is a necessary part of a cycle of activity, so it cannot be neglected, of course.

I can completely relate to pushing through things, and sadly I know what you mean about not enjoying activities even if you still manage to do them.  I have only sparse memory of exercising and feeling good while doing it any time recently.

Some people recommend riding a balance between doing enough and avoiding any sort of "overdoing it".  I tend to not be good at that discipline!  Luckily I have only been bitten by overdoing it a few times and usually get away with it... others are not so lucky and suffer major setback and symptom increase if they push too hard.  It is going to take some experimenting and keen observation on your part to know what works for you.  Certainly seek all the advice you can from docs, but their insight will likely be limited and problematic so you're going to have to become a self-taught expert.

I guess the key is assessing how much, if at all, pushing hard through symptoms is biting back at you.  Some of us can end up practically in the hospital after too much exertion.  It sounds like you are spared from that.  I personally think that a "remission" of POTS is basically required to return to that "feeling good while exerting" state... the hard thing to answer is whether pushing through symptoms is getting you closer or farther from a remission or healing up.  I guess it's going to vary from person to person and you'll need to experiment.  I think we tend to get hit by random setbacks too, so even if you are doing everything right there will be hurdles.

I've rambled a bit without saying much, but I do have one specific observation!  I find that the state I am in *while exercising* greatly effects the post-exertion result.  I believe this applies to healthy exercisers too.  So make sure you're in solid hydrated state and such, prior to exercise... and perhaps make it a minimal day if you're not for whatever reason.  Athleticism is often about "pushing limits" so it is complicated to have a condition that counters that.

My general attitude is that no matter what activity we are doing, we're basically operating like athletes most of the time... our heart rates, exhaustion, and strength-of-will necessary certainly indicate that!

[karinosa]

I'm no athlete nor consider mysef in the best of shape, but I do agree with what supineallthetime says that yes we are basically operating like athletes most of the time by how our bodies are responding.

With that said I can tell you what has worked for me,  I wanted to get back into circuit training twice a week and my weekly yoga that I used to do before P.O.T.S hit me, this a side from my daily duties of home and my 3 children, well I started this September and I forget who suggested it in this site but I bought myself a heart rate monitor to wear while working out, I figured out that if my heart rate went to 160bpm then I would get the chest pains, dizzines, etc and would feel quite sick afterwards, so I set it to beep at 155bpm and there are days that I can hardly do anything without the constant beep and days that it harldy beeps at all!

As soon as I slow down the workout my heart rate drops and I can continue until it beeps again, I don't know if this would help you but at least it is one way to get around completely dropping your dance.  You will just have to figure out what your number is before you feel sick.

The last two weeks I have been unable to work out at all as I have been just way too tired and not feeling right but I have now accepted that some weeks I'll be able to do more than others.

Good luck and let us know how you do!

Karin

[AireScottie]

I was extremely active before all this happened, and am now barely able to function.  However, there are some things I wish I'd known when this started that would have helped keep what I had.  Karinosa is right.  Get a heart rate monitor and find the level where your symptoms start going crazy.  Then do whatever you can below that level.  Over time, you may be able to bump that heart rate up.  See if your college or local hospital has a good PT program.  They should be able to help you come up with activities that keep your HR in the right range without setting off symptoms.  You probably will find that some days you can do a lot and other days almost anything will set it off.  Also, see if you can add in more strength training to your routine.  This is a good way to keep yourself fit without raising your HR, and some people find that the more muscle they have, the less they get symptoms from POTS.

You may have to take a break from dance for a while, because of all the position changes.  I've been doing yoga since I was 8, and have really had to modify it to continue.  Anything where my head drops forward, back, or side-to-side will set off dizziness.  Anything where I change upper body position quickly will cause me to pass out.  Some positions I can get away with by not dropping my head.  Some I just have to move slowly so my body has time to adjust.  Some days I have to lie down immediately between each position to give my body time to adjust.

I really hope you are able to get this under control and get back to dancing.  It's so hard to give up something that makes you feel so good!

[RedAngel84]

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.

[karinosa]

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!

[supineallthetime]

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.

[supineallthetime]

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.

[talaverajt]

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!!!

[Troot12]

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

[LivingInHope]

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!

[Heiferly]

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.

[LivingInHope]

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.

[evo123]

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.

[Troot12]

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

[evo123]

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.  

[LivingInHope]

I only passed out on the tilt table after they did the nitroglycerine under the tongue and tilted me up again.  It was the only time I've ever fainted in my life, though with POTS, I sometimes have my vision go gray or mostly white.  You must have had your heart in amazing condition to have your resting heart rate that low!  

One thing about the "benzos" or at least one of them, librium, I think I recall learning that one could get rebound tachycardia if you've been on them long term and go off of them.  And it looks like dizziness and vertigo are among the most common side effects of the pain pills, tramadol.  I take phenergan (along with OTC pain relievers) for migraines and find my tachycardia worse with it, but I still take the phenergan about five times a month for those headaches.

[Heiferly]

If you want to list your symptoms, we're here to listen, no matter how long the list if you feel like talking about it!  If you'd rather just get a general idea of the range of symptoms typical of the various forms of dysautonomia represented here, you may want to have a look at our Dysautonomia Tracker.  It's a tool that can be used to keep track of symptoms/episodes on a day-to-day basis and watch for trends or whether certain triggers seem to be the ones that most set you off.  It can help you communicate these things with your docs as well (there's an option to print).  You can find that in the right menu sidebar on the side of this page--->

Or, by following this link:
http://www.medhelp.org/user_trackers/gallery/dysautonomia

(There are many other trackers on MedHelp that you may find useful as well; most popular in our forum are the Dysautonomia tracker, Blood Pressure tracker, Mood tracker, Migraine tracker, etc.)

Here's another listing of symptoms of POTS, organized by which aspect of the disorder causes them:
http://www.dinet.org/symptoms.htm

[CurrerBell]

Hello,
I came across your post after doing a search for "athletes pots". I
Am newly diagnosed and worried about how my life will be affected by this.
Your post was extremely touching and I see it was written 2 years ago.
Are you able to write another post and let me know how you are doing?
I really hope you are ok.

[Heiferly]

Hi. I can't speak for the original poster, but I wanted to give you some information about physical activity and POTS.

Current treatment protocols at some of the top diagnostic and treatment centers in the world for dysautonomia and POTS now include or even emphasize physical therapy, physical reconditioning, and/or exercise. These include the Cleveland Clinic, Mayo Clinic, and of course, Dr. Levine. (If you're not knowledgable about Dr. Levine's protocol for POTS, just google it; there's tons of information online.)

There seems to be anecdotal data to support the observation that many people who get POTS were in above-average physical condition for their age at the time that their POTS onset. Here on MedHelp, particularly among people with a childhood or teen onset, we have seen a large number of people involved in sports. For those whose onset occurred during adulthood, we see a fair number of people who were involved in college sports, adult leagues, or had physically demanding careers or hobbies. Exercise intolerance is often one of the most alarming symptoms of POTS, particularly for those who are accustomed to being physically active.

The good news is that almost all POTS patients can recondition their bodies to tolerate greater amounts of physical activity, and some can even fully recover their exercise tolerance (though they may have to keep up with a certain regimen to maintain it). While it is beyond the scope of this response to prescribe an exercise regimen, what is key to all rehabilitation programs for POTS patients is a gradual increase in activity guided by their own body's day by day response. This can be achieved by following a protocol such as Dr. Levine's under the supervision of a physician and your own self-monitoring; by entering a cardiac rehabilitation program under the supervision of a cardiologist, cardiac nurse, and exercise physiologist; by working at home or at a clinic with a physical therapist; or by entering a multidisciplinary inpatient rehabilitation program (e.g. http://www.mayoclinic.org/physical-medicine/ ).

Best,
Heiferly.

[JCappiello]

I have just been dx with POTS 2 months ago and I am 26.  I use to be a very very active person, but can not even go food shopping anymore.  My EP tried Florinef, but I couldn't handle the side effects - now I am on Midodrine, but it doesnt seem to be helping at all.  I always wonder the same thing... I have been out of work for almost 3 months and don't know when I will be able to return. I feel lousy 90% of the time...