POTS and exercise intolerance
Posted , 4 users are following.
I have not been officially diagnosed with POTS however my doctor believes I have it and I will be seeing a cardiologist for testing. Just waiting on that.
I know exercise intolerance is common with POTS and I was wondering if anyone has almost a delayed reaction to exercise. I did some cardio yesterday morning and felt ok for most of the day other than a little more fatigue and dizziness but today it's really bad. My heart rate is higher both lying down and standing and when I stand I get very light headed, nauseous, etc. Basically a drastic increase in my symptoms the day following exercise and only a mild increase on the day of the exercise. Does anyone else experience that?
Today I will be housebound due to the severity of my symptoms. When standing I feel like my heart is pounding, chest is tight and can't breathe. It's almost like when I have a panic attack. Usually I do experience these things when standing but to a lesser degree if that makes sense.
1 like, 7 replies
kenaz FoxyRoxy13
Posted
Hey Foxy 13, I am so sorry you are having such trouble. My first syncopatiic epidoe was in 2000 while driving. My cardiologist said my heart is good (after 4 angiogams and to mant tests to count. My second episode wass in 2013 whiith my wife and GS along. God has spared me but I can do absolutely nothing and I have to be really sure orf myself before I drive. 8 months ago I couldn't get my BP down so my wife took me to my PC. They couldn't get my BP down so she called the abbulance, 5 mile ride for $984.00. The cardiao intern was a youn laady that said I had typical POTS. My cardiologist advised I go back to Neurology for Dysautonomia. My PC put in a referal for Neurology at th VA hospital. I am back to square one. I have scars all over my body from working in the yard or shop and my wife finding me on the floor or diet.
Foxy, I know whaat you are gping through and I will pray God's hand on you and you doctors..
FoxyRoxy13 kenaz
Posted
thank you for your kind thoughts. I'm jsut waiting on the referral to a cardiologist that specializes in autonomic disorders. I've done my own version of the tilt table test at home with a heart rate monitor so we are pretty sure its POTS. my BP tends to be on the low side but it does not drop significantly on standing though my heart rate of course goes up high. I have lost a lot of strength the past few years being sick and I have started on an exercise program (found online specifically for POTS) that supposedly helps to reduce symptoms after several months for some POTS patients. though of course with the exercise intolerance it's a very slow program. I think I might have overdone it yesterday due to the severity of my symptoms today. I'm still learning about POTS and dysautonomia but I have other diagnoses that can be caused by POTS or often are found together. Hopefully when I get to the specialist I will get some more information and help.
I'm sorry to hear about your struggles. I'm actually getting a service dog for PTSD, anxiety, depression and to assist with the POTS symptoms. It's going to be a while for that and of course I still need to work on coping with the symptoms as best I can. A service dog is not a magic fix, just a very helpful tool and friend.
Cowgirl918 FoxyRoxy13
Posted
I am so sorry. I have never been told I have POTS but I do have Neurogenic Orthostatic Hypotension. In other words I can't stand up without losing my bp and/or fainting. I too have issues with exercise and when I was younger regular exercise really helped me. Deconditioning is your worst enemy. My docs told me it was better to go long and slow than short and fast. I spent a lot of time on the treadmill walking, walking outside and swimming. I needed a longer warm up and cool down to regulate heart beat and bp.
The service dog sounds like a wonderful idea. You can learn the tricks for coping and still having a life but appropriate diagnosis and medication are your first step. Good luck.
FoxyRoxy13 Cowgirl918
Posted
thanks very much for your comment. I've definitely gotten deconditioned over the last few years and just started working with a physical therapist. I think I just went a bit too high intensity yesterday. I just found it weird that the worst did not hit me until today. I'm doing only strengthening exercises and short bouts of cardio (recumbent bike mostly) but I had a rare day with energy yesterday and pushed myself a little harder. We are still figuring out what works for me and what doesn't. I will back off a bit until I see the therapist again next week and we can discuss my reaction. Today I did not even do any of the exercises and made it a rest day but hopefully tomorrow I will be a bit better.
I am working on coping strategies in general right now and that's been tough. I've recently added chairs to my shower and bathroom sink so it's not so challenging to keep up with personal hygiene. Maybe I should add one in the kitchen so I can sit while cooking also. I have lots of thinking to do. I hope the specialist can help once I get in but I'm sure it will be a long wait list.
Cowgirl918 FoxyRoxy13
Posted
I had a chair in the kitchen after fighting fatigue etc. for several years. Made my life much easier. I also have a shower chair and vanity with chair. I enjoy the shower chair now. Like a little luxury.
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I have found that small amount of exercise every day or going to every other day works best. This is not about the kind of aerobics we used to do. You want to improve balance, strengthen your heart and core. Simple walking with consistency is your best friend. Good luck.
xxxlouiso FoxyRoxy13
Posted
what you describe is something I also experienced. I wasn't diagnosed with pots however, I was diagnosed with ist or inappropriate sinus tachycardia (which is not well understood by medical professionals).
I used to exercise regularly, until my condition became virtually unbearable. I would nearly collapse at the gym, and struggled to do the simple things. my heart rate was high all the time, yet elevated slightly when I stood or was on my feet for a long time. it would skyrocket with minimal activity. add that to the lightheadedness, fatigue and nausea and I can relate to how you are currently feeling. i was forever saying that I could never breathe properly. it is also so much worse in the heat.
as someone who has "come out the other side" i can tell you that it gets better. i started taking ivabradine each day at the highest dose, found a good cardiologist and quality of life has improved out of sight. provided I maintain my medication (and with a few hiccups along the way) I am back in the gym, no longer need to nap and feel virtually normal. I no longer have the lightheadedness,the fatigue or the shortness of breath.
talk to your doctor about having a holter monitor and exercise stress test as they will be the best indicators to find out what you have. find a good cardiologist/doctor who understands these conditions and are willing to offer you different treatment options. ivabradine is not a standard treatment, but it was recommended to me as there are fewer side effects compared to beta blockers. it is honestly the best thing I ever did and I hope you have just as much success with whatever treatment you get.
feel free to reach out if you need, I know how overwhelming it can be!
FoxyRoxy13 xxxlouiso
Posted
I imagine the specialist will want to do a variety of tests. The one I'm being referred to is a specialist is autonomic disorders. In my case my heart rate is normal when lying down or sitting, high when standing. Though yesterday my heart rate was elevated more than is normal for me in any position. I'm just trying to do what I can in the meantime while I wait on seeing the specialist as I am no longer able to do much and want to build up some strength. I'm trying to go very slowly but I think I overdid it the other day.
I'm glad to hear you're doing better
^ I hope once I get in to the specialist I can find some improvement also.