POTS/IST Sinus tachycardia exercise

[Cookieisland]

Does anyone suffer with POTS and/or IST sinus tachycardia and has found a way to increase how much they can exercise?

I have had a 24hr monitor and also an echocardiogram to rule out any serious issues, and I am taking verapamil. Generally my heart rate isn’t as high as it used to be (average 80-90bpm) but I went out for a cycle today and I hit 150bpm straight away and then raised to 180bpm where I had chest tightness and pain, and felt quite unwell. I stopped immediately and recovered within a couple of minutes. It is so frustrating as apart from the heart symptoms I wasn’t out of breath and had barely gone 10 minutes. It scared me though as I was on my own.. had I not already known what was happening and been to see a cardiologist I might have called the doctors.

its so frustrating as it feels like I am being limited in living normally and I wish I didn’t get such fast heart rates with minimal exertion!

I am due a follow up with the cardiologist in a few months but they aren’t worried at all and just told me to learn to cope with it. Easier said than done!

[Yumz199725]

What dose of verapamil are you on? Im on 120 mg that I take at night, recently had it increased from 40mg because in September ended up in hospital for nearly a week. Since the increase I been feeling alot better maybe you need an increase in medication. Sorry to hear your not been feeling well though maybe get in touch with your doctor and see if they can speed up appointment with your cardiologist x

[Cookieisland in reply to Yumz199725]

Thanks for your reply! I have 40mg twice a day but they did say it was a really low dose to start with, and potentially going to 120mg slow release. Did you find any increase in side effects with the higher dose? X

[Blearyeyed]

I wrote a reply discussing POTs yesterday. If you look further down the list of previous posts on this post page you should find it. Take care , Bee

If you have only just been diagnosed and begun medication you need to allow the medication and self care to start working while doing basic activities , then take movement and exercise slower at first and then build it up from your comfort zone.

Often you need to change the type of exercise you use.

I could never go out on a normal bike because my tachycardia still rises rapidly even before I move with my legs in a downward position.

However. from building up slowly I can now do 30 minutes on a recumbent bike at home or outdoors at a speed of 25kph on good days and my heart rate , although still tachycardic I can maintain at around 140 BPM.

I can swim and do aqua exercises but the funny part is that I need to drink water before getting into a standing position , then again after I stand , then again after I climb from the pool before walking to change or my heart rate rockets and I go dizzy.

Depending on the severity of your symptoms ( mine are severe now) you do need to consider which exercises you do and do shorter sessions at more moderate paces to be able to get more exercise.

Often , things like more active yoga is a No.No because of the head movements, cycling can be difficult, you have to be careful with HIIT, weight training and Circuit Training because your POTs won't allow you to rapidly move your head up and down or change from sitting to standing or lying to standing too quickly.

More moderate versions of exercise, called L.I.S.S , stand for Low Intensity Steady State activities work better like walking at a moderate pace , including hiking after you slowly build up your exercise tolerance, rowing and kayaking , swimming , aqua exercise, low impact and chair pilates , tai chi etc.

You must drink while doing these and you need a snack beforehand and may need more salt before an exercise depending on which other conditions you have.

Compression leggings and sleeves and compression tops of medical grade do help you maintain activities, even if you don't manage to wear them for normal activity they are vital when you workout,

[Cookieisland in reply to Blearyeyed]

Thanks so much, I found it difficult to find much information on exercising as a lot of things online talk about the basics like standing up for longer periods of time.

It’s been a trial and error for the past year and I’ve been scared to exercise too much and seeing my heart rate skyrocket. I maybe need to accept that I need to build it up again and not just jump straight in! I’ll take your suggestions into consideration and see what difference it makes. Thanks again!

[Blearyeyed in reply to Cookieisland]

Yes , the key to managing Stress free with these conditions is Acceptance, Adaption , Patience and Pacing.You can't jump straight in to anything if you finally want to consistently keep active and get some exercise. Some days you won't be able to do much , sometimes you may have other health reasons that means you need to go back down to the square one of slowness , but you can increase back to your new daily routine again at a sensible pace. For some months you can be motoring along at a good moderate level with few symptoms after you've gradually expanded your comfort zone , but you always need to remember it's better to keep doing that even if it feels easy than to push it and start an earthquake under the whole house of cards.

You need to accept that your " Old Normal" has changed and learn to be positive and grateful for your "New Normal".

By doing that you delay the progression of these conditions and actually find a more well balanced and relaxed quality of life , which you eventually realise most healthy people would be better off embracing as well.

It's the slow steady hare that always wins the race not the hasty hare.

Take care , Bee

[Elinor18]

Hi. In addition to everything that Blearyeyed has said look into the CHOP or Levine protocol for POTS for building tolerance to exercise. It includes a cardio program starting in a recumbent position, recumbent bike or rowing machine. Plus some floor and seated strengthening exercises. The Facebook group 'Exercising with POTS Dysautonomia' has a wealth of info and very helpful and knowledgeable admin.

[Elinor18]

There's also some exercise info on the POTS UK website under the section on managing pots.