I was recently diagnosed with mild mitral valve prolapse, mild regurgitation, and mitral annular disjunction. According to my doc, I’ve probably had these things for a long time, but they just now became symptomatic (I started having a near-constant arrhythmia in the form of PVCs). I’ve had heaps of tests, and my doc has decided I’m not currently at high risk for sudden cardiac death (strongly associated with mitral annular disjunction), and he feels confident letting me continue to train, race, and overall enjoy life for now. He’s going to continue to monitor me closely. He’s put me on a beta blocker and a calcium channel blocker to control the PVCs, and I might have to continue that regimine indefinitely. Due to the location of my PVCs, I’m not a great candidate for ablation (sucess rate of 60-80%), although my doc is certainly willing to try. So I’m still trying to decide if I want to go that route. He said valve repair/replacement is probably in my future, especially given the mitral annular disjunction, but not anytime soon.
My problem is that this has all been shocking news, and has really taken a toll on my brain! I am not looking for medical advice - I have a great doctor from a solid cardiology practice, and I trust his judgement. He printed out copies of studies and European guidelines for me to read. He’s caring and seems to not want me to die. But the meds don’t work perfectly for the PVCs, they cap my heart rate, and for many reasons, I can’t seem to enjoy riding like I used to. I know many TR users out there have been through similar, or a lot tougher, and I’m wondering if you have any advice or encouragement on how to move forward and still enjoy the bike like I have for the past 30 years. I normally love endurance events, races, brevets, gran fondos - anything at least 100 miles, and preferably at least 10,000 ft of vertical. But now I’m not really even enjoying my local climbs, my commute to work, my trainer sessions. All the plans I had for the future (bike packing this summer, gran fondo nationals, becoming a super-randonneur) are on hold til I figure out how to manage to ride without fear and with my meds perfectly timed so I don’t have PVCs while riding. How do you get through a suprise diagnosis about your heart, which you’ve relied on for so long? Any encouraging stories or advice is appreciated!
Figure out why you train/ride/race, then lean on that. For me, the bike is my medication and the cause of my healing. If your doc has cleared you, then proceed as directed. I’d also recommend some “mindfulness/meditation” training to come to terms with your condition. I actually can’t recommend this enough. With daily practice this has helped me so much, even though I was a skeptic for months. I have several severe chronic conditions that I deal with every day all day. I’m grateful for what I do have and focus on the positives in my life. The old saying holds true, mind over matter. If you don’t mind, it doesn’t matter.
I prefer Headspace. I’ve tried others over the years but keep coming back to Headspace (5+ years now). Something about his voice (Andy) and some of the meditation series really speaks to me.
While not anywhere near as serious as your situation, two years ago I was diagnosed with an aneurysm. Luckily, it was eventually determined that it was an enlarged aorta vs. a bulge / weakness of the aortic wall. Two different cardiologists gave me the go ahead to train as normal (one of which was a cyclist himself, so he “got it” in terms of mindset)
But there was a time period where every time my HR went up, I’d question whether I was gonna blow a gasket. It took time to get to the point where I didn’t think about.
Let yourself work through the process emotionally……and be patient with yourself. Maybe stepping away from the bike for a short period will help as it may trigger a resurgence in motivation to ride again, albeit with different goals / mindset. But if your docs say you are OK to ride, you’ll eventually come back around to being comfortable with it.
Excellent advice! And that experience sounds scary. I think just hearing from other people who have been through a hard diagnosis and worked through it is really helpful for me.
It does help having a cardiologist who gets it. Although mine isn’t an athlete, lots of his patients are, so at least he’s used to us.
Hey there. I developed some really frightening palpitations back in early 2020, which persist to this day. Luckily in my case repeated testing has revealed them to be benign, but I can completely empathize with the impact this can have on your psychology when racing and training. To this day, I’ll occasionally find myself turning pessimistic mid-interval and somehow momentarily disregarding the conclusions of multiple trained professionals in favor of that terrifying voice telling me “you’re going to die”.
I don’t know that I have any concrete advice, but perhaps it helps to know you aren’t the only one facing this type of struggle. For me, therapy has been essential, as have regular yearly follow ups with the doctor just to reassure myself things are still ok, but it’s an ongoing process and I doubt I’ll ever be as confident in my own body’s resilience as I was before this whole ordeal began. After my most recent round of testing the cardiologist and I sat down for a long discussion, and he specifically said to me “You’re not going to drop dead from this” and I have found replaying this quip in my head when I feel a palpitation and my mindset turns negative again has been really helpful.
It absolutely helps to know I’m not alone! The feelings you describe are so similar to what I am feeling. I really appreciate you sharing your experience.
The medication you have been prescribed will impact your training. I was prescribed them for different reasons but the effect on heart rate and response is real. It is frustrating when you are accustomed to pushing yourself hard and you just can’t due to the limitations from the medicine and for safety considerations from the condition. It took me a while to adjust and get over that frustration, but eventually I did. I enjoy riding again and you will too.
Had an RTA whilst out training which led to cardiac arrest and subsequent resuscitation and CPR by a passing surgeon (I was a lucky boy) fitted with an ICD after countless tests and was told to carry on with my life, that was 9 years and 60 odd thousand miles ago, some racing and plenty of hard training, currently the fittest I have been for a long time, 52 years old (300+ ftp) listen to your Dr but life and cycling is possible after cardiac events, I was more or less dead, so I took all I could tbh, I hope it turns out positive for you.
The significant stuff began in January 2023 (albeit with some long-term history of paroxysmal SVT which was deemed not an issue). I had open-heart surgery with an ascending aortic graft and aortic valve replacement Dec 2023. I’m very blessed in finding things before I was in the ER or worse, and also blessed with a crack medical team (beginning with my primary care guy, then to a very good cardiologist and top-notch surgeon) and as of mid-March I’m back in the gym and on the bike outside with no limitations. On a beta blocker (metoprolol) which does limit my max HR and still figuring out what that means for power and HR training zones. I have some work to do making up for both the surgery and a year of restricted activity before that, but very thankful for being where I am today.
I’ve written about this elsewhere, but I am on acebutolol to control PVCs and to keep my blood pressure lower after open heart surgery back in 2018 to control a congenital defect with one of my coronary arteries. (I had the same exceptionally-rare condition that killed Joe Strummer.)
I’ve found the following to work for me — and my cardiologist approves:
I often ride before breakfast and before I take my daily med. My heart rate is still capped at about 140-150 BPM.
I am pretty useless for any kind of sustained effort other than endurance work for about 3-4 hours after I take the BB. If I take my pill at breakfast, by around lunchtime I can ride harder and it feels good doing so.
I’ll often do my harder workouts in the afternoon where the BB has worn off some. I am talking 5 minute efforts, sprints, etc.
I no longer do very hard/extreme workouts or rides where I am at the rev limiter for extended periods. I was advised to avoid long sustained efforts at threshold.
As for #4, this required some mental recalibration as I used to race XC and CX, but I got there with time.
Yes! Training on beta blockers has definitely been a whole different experience! I haven’t been able to get my heart rate over 145 yet. But my power is still increasing, so I guess that’s good. Thank you for the encouragement!
That is SO scary. I am really really glad you are okay and still riding and doing well. It’s also really encouraging to hear. My doc mentioned an ICD, though I don’t need one at this point. I’m so glad to know someone is out there riding with one and enjoying life! This really helps me!
This sounds great! I am playing around with meds to try to get it timed right. My arrhythmia comes back as soon as my meds start to wear
off. I’ll have to talk to my doc to see if he has any ideas/advice for training around it.
Also I’m so glad your heart issue was discovered! I’m still sad I never got to see the clash live!
Thank you sooooo much to all of you. Every single reply here is really helpful. I feel more hopeful and motivated and less scared than I have since this started a few months ago! My future on the bike might end up looking a little different, but it doesn’t feel bleak right now.
Figuring out the timing and how my body reacts to the medicine was a process of trial and error. I kept a diary of med timing and how it intersected with workouts and power/HR/RPE and got to a process that largely works for me. You may want to do the same just to give yourself some reference points.
I saw Joe Strummer live with the Mescaleroes back in the early aughts and it was a fantastic concert — it was so sad we lost him not much long after.
Anytime Joe Strummer comes up, it gives me an excuse to post one of the greatest tributes ever…Bruce, Dave Grohl, Elvis Costello and Little Steven at the Grammys just after he passed.
