on yer bike

I’ve not written in a while because the last fortnight has passed in a blur. I woke up the day after my last blog post and madly decided to take the next step: exercise! I have seen research that claims exercise is the single best thing you can do to manage PoTS symptoms, but knew this would be impossible to start without the help of drugs to allow me to tolerate exercise.

As I was now on medication I decided the time was right and it felt good to unpack all my old running gear (yes I still hadn’t unpacked them from when we moved house!).  I’ve started on an exercise bike because I can sit down and go as slow as I want. I’m not going to see the benefits for months yet, so it will be worth it in the long term, although realistically in the short term it’s leaving me worse off. 15 mins on the exercise bike is leaving me in bed for the rest of the day!

My eventual aim to to be able to run again but the eight month plan I downloaded from the dysautonomia international website for PoTS patients advises to wait until month 5 at least before starting upright exercise.  It feels good to have something to work towards though, and it feels like I’m achieving something positive.

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4 thoughts on “on yer bike”

    1. Hi, I’ve been on it for nearly 6 weeks now, it took my body 2 weeks to get used to them and I had really bad chest pain and drowsiness. Now, on ‘good’ days they allow me to get out of bed and do little things around the house, and I’m able to start gentle exercise, but on ‘bad’ days I’m not really noticing a difference. Hope you’re ok xx

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  1. Thanks. I got my diagnosis on Friday and I started on fludrocortisone yesterday, the cardiologist said I could start ivabradine in 6 weeks if still needed. My blood pressure is quite low all the time, although does drop lower when I stand, hence the fludrocortisone. I was hoping ivabradine would be like getting my old life back but maybe not? I started on the little bike you can use from the sofa yesterday. Just 5 minutes. I’ll try to do 5 minutes a day and up it a minute a week. I’ve got a plan that I found online but don’t feel I’m ready to start in week 1 of it. I think it’ll be similar to yours as it says upright exercise after 5 months. I’d love to hear more abounthe plan you’re following and how you get on with it! Take Care. Xx

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    1. I’ve been told it can take a while to find the ‘magic’ combination of drugs and treatment because there yren’t and approved drugs specifically for PoTS, so it might be a case of tweaking doses and types of meds until you find the right one for you. I have to admit, on good days ivabradine does make a huge amount of difference, I could never have imagined a month ago that I’d be able to even sit on an exercise bike for 15 mins let alone pedal (even if it is very slowly!!).
      This is the programme I’m following, it’s actually from the children’s hospital in Philadelphia, I should be starting week 3 now but I don’t feel ready and I’m going back to the beginning to start again! http://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf
      I think you’ll know when you’re ready, just don’t push yourself too hard. Good luck! xxx

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