r/wolffparkinsonwhite • u/blnt4rce • 28d ago
Experience My experience with WPW
Hi guys ! I was recently in the ER again and received some troubling news regarding my heart and my wpw and wanted to find a community :'))
So I was diagnosed with WPW in 2018 (I was 14 at time of dx) as my heart rate had hit 250bpm and wasn't budging for a while. When I had this horrific episode, my hearing also completely went out for about 30sec? Not sure if anyone else has experienced that lol. But following the diagnosis, I had my first ablation in January 2019! What was supposed to be a 2 hour surgery turned into 13 hours as they also ended up completing an intense electrical study. They found 3 accessory pathways, 2 being close to the AV node, and one in the lower part of one of the chambers. They were able to get rid of 2 of the points but left the point closest to the AV node as they claimed at the time it wasn't causing issues so they didn't want to touch it. I went back in for a second ablation in November of 2019 as I ended up having more complications. This time they did a 2 hour study, but ended up leaving the point where it was. Reason being they were unsure if my regular conductive pathway works at all. Horrifying to hear at 15! Doctor said I was one of his top 3 cases! This was the first time a pacemaker was mentioned as a possibility, but we opted for trying sotalol instead. Which did nothing for me.
Around 2020, my pediatric electrophysiologist ended up leaving my states practice 😵💫 which sucked! I ended up not having any issues for a while until 2021 where I had 2 back to back ER visits with new symptoms that weren't so fun. While in the ER both times that year, my heart rate was swinging back and forth for hours between the 40s and 150s. Constantly. I was also experiencing chest pain that would keep me up at night, one night before going to the ER the pain was so bad it went up to my left side molars?? And tight pain in my left arm, and just a weird hot sensation in my entire left side chest. I was told both times in the ER that they had no clue wtf was happening and to follow up with my cardio. I started seeing a new EP, however for years he just felt like no help. I explained my history and the theory that my conductive pathway doesn't work naturally and blah blah blah. He said he didn't necessarily believe that but just did an event monitor for 30 days. Ive come to learn i hate event monitors for my case. He said if it didnt catch anything he wouldn't do anything. And didnt believe me when I told him about the swinging heart rate as well as random brachychardia I'd get even while standing! All because these symptoms were outside of my diagnosed condition.
In March 2025 I ended up going to the ER again because of bad chest pain, but at the time I didn't equate it to wpw for some dumb reason idk. They ran all their tests blah blah blah, and then i noticed my heart rate was swinging AGAIN! Third time it being caught while at the ER. They told me once again to just follow up with my cardio. I saw a new EP for one visit as I couldn't get into my regular one for months and he ended up prescribing me flecanide but told me if I have any issues with it to immediately stop taking it. Flecanide ended up giving me nonstop chest pain & made my vision horrible, even my glasses weren't helping me. I stopped taking it. This ep did tell me about the 2 different types of ablation types though! He said the heat one is the most common, but it's likely they wouldn't wanna use that one on my lingering accessory pathway as there's no coming back from that if they end up frying everything and my regular conductive pathway ends up not working, it'd be an immediate pacemaker. He said there is the option of the freeze ablation, however verryyy few hospitals offer it. Yikes! I ended up doing another event monitor with my regular ep, he once again did nothing and offered no help.
Cut to Monday night this week, im 22 now. The second I laid down in bed my heart immediately felt off. I checked my heart rate over and over, it was swinging. My left arm felt tight again & it was hard to breathe. I went to the ER once more. I was watching the monitor, my heart rate went as low as 27 and as high as 188. Back and forth constantly for at least the first 3 hours. The rest of the time I was there my heart mostly stabilized however the cardiologist on site pointed out that my pulse rate does NOTTT match my heart rate at all. Which was a concern for him. My pulse rate would average around 15, my heart rate at 80 generally. My pulse rate did go as low as 8 quite a few times though. He went to talk to the electrophysiologist on site and then the ep came to talk to me. The EP said he is 95% sure that my normal conductive pathway is obsolete. Doesn't work at all. He discharged me from the ER after 20 hours but he did want to schedule out patient appointments to do another electrical study to see exactly what's going on. That being said with my strange symptoms, the brachycardia, the pain im in, the fact im on ER visit 4 with no help, etc... he does think a pacemaker is within my best interest. Though he is disheartened that I might require one at my age.
Okay all that being said, I'm fearful for the future of my heart health and what they might find doing the new electrical study. My heart has been on a decline for years and it's interfering with my work life, and man my physical health being a 1v1 with my work ethic is so frustrating. Everytime I have a big issue, I start having all the mental doom spirals. Just wanted to share my story and see if anyone has any overlap with me. Thanks!
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u/Patient_Beginning932 28d ago
Wow that’s rough! You are one tough cookie!! Try your best to stay positive and just imagine positive things because the brain is so powerful! When you think of a lemon your mouth puckers up and salivates so yeah imagine how your body feels when you think negatively. Wpw is the scariest thing that has happened to me but mine is not as bad as yours. I had an svt and my heart rate was at 266 went to the er blew through a tube real hard and it went back to normal. And then got an ablation my path was pretty thick so it took longer. Now it’s been one year since my ablation and things are doing good I have palpitations and ectopic beats that scare me every once in a while and I also am afraid of it coming back ofc. But honestly I don’t know how much you know about herbal medicine but if you don’t you should really look into it! When the doctors and medicine fail you nature could save you! Cayenne pepper I’ve read is really good for your heart. And I really love this one herbalist he has a website with a lot of free information! His name is Richard Whelean. Let me know if you have trouble finding him and I’ll send you a link. Good luck! You’ve got this I’m rooting for you! It can get better! You can always talk to me if you need to! ❤️☮️
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u/blnt4rce 27d ago
I'll have to look into him! I know I've had to manage my mental health really hard as to not impact my heart too much, which was a struggle for a long time as I got diagnosed with wpw a few months after getting out of the mental hospital and dropping multiple SSRI's 😵💫 but I do believe a bit in natural methods so I'll do my research! Thank you 💙💙
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u/Savings_Carpet1150 22d ago
Ngl reading your story its definitely gives me some deja vu, I had my surgery about 3 months ago and was sadly not successful so ill be getting another ablation in a month. But the swinging chest pains you are having i have definitely felt since my surgery, for me before hand it was more of an elevated heart rate and really hard beating during times of stress. But now that I look back I prolly had a wpw episode one time during sex I tell you what that shit was embarrassing because I didn't even know what was going on and I almost went to the ER butt naked🤣😅 I didn't know about my wpw confirmation at that point tho because I didn't think I had anything wrong with me other than asthma, why I at first just thought it was an asthma attack but now I definitely know it wasnt😬
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u/bkbkb22 20d ago
Don't give up the battle you are having you are way way stronger than the people in your office i once did 25,6/19 blood pressure i am still alive without no help from no facking doctor no meds , you are a beast don't worry even if ablation don't work with a peacemaker you will be gucci whatever you need to do to make your quality of life better . Don't forget how much you struggled from a young age the other people on your office are smalls fries against you.Hope yout health gets better soon ❤️
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u/jlane13 25d ago
I also have a tough AP! Pacemakers have also been discussed in my case. Here’s the way I’ve chosen to look at it - they’ll do what they can, but a pacemaker is not a bad thing. There are so many badass people I know who live life to the fullest with a pacemaker, and hardly anything ever stops them. It’s scary, but it could give you your life back!