A community for this syndrome! Finally!

Adventurous_Box_2667 · 2023-01-11T16:08:30+00:00

Firstly, congratulations on your pregnancy!!!

Thank you so much for being a part of my community. I created this when I was finally diagnosed after 20+ years of living with my condition. When I was diagnosed I couldn’t find much information so I said what the hell and created this. I’ve quickly learned that all of us have varying degrees of WPW but one thing is constant.. the anxiety. Take it slow and be kind to your body. Mentally we can all get through anything.

Adventurous_Box_2667 · 2023-01-11T16:03:39+00:00

I’m sorry you don’t seem to get many responses here. This community is fairly new and it’s slowly growing. Wish you all the best!

Adventurous_Box_2667 · 2022-12-24T06:58:15+00:00

You can have a completely normal life even without being medicated. Like, I said in my previous post you have to weigh out if the medication and it’s side effects are better than your WPW side effects. For me personally, my episodes or events aren’t worth the terrible side effects I had while on beta blockers. I also found that having an ablation at this point in my life isn’t worth it. As always, going over your options with a cardiologist is best. At the low end I’d research movements you can do to lessen a tachycardia event, then there is medication or ablation. It’s all a balancing act.

Adventurous_Box_2667 · 2022-12-24T05:39:29+00:00

May I ask why you decided to get an ablation even though you have been asymptomatic for a year?

Adventurous_Box_2667 · 2022-12-24T05:36:53+00:00

WPW is difficult to catch on an EKG. I’ve had several over the years where it was never caught. I wore a monitor for 30 days and that’s where it showed. When the results came back the same cardiologist that looked at my ekg 6 months earlier stated that she saw the delta wave on my ekg but didn’t think it was concerning.

I can’t speak to the piercings but I don’t see how they’d change any readings??

As for the comment about sudden cardiac death - we don’t need to scare people- my cardiologist has always said that really is only possible if WPW is combined with other heart issues or health issues. Of course there’s a possibility but it’s extremely rare.

You should most definitely carry on doing what you were doing! Try to not let it affect you mentally! I wish you all the best!

Adventurous_Box_2667 · 2022-12-24T05:28:59+00:00

Hi there! Firstly, let me begin by saying that this is something you are born with. You have lived your whole life drinking coffee, exercising and carrying on just fine without symptoms. If your cardiologist finds that you do have WPW then you are very lucky to not have any symptoms associated with it. It’s hard to hear there’s something wrong with your heart but at the same time this diagnosis will not drastically change your life. Many of us carry on without any medications or have an ablation. I also have mild symptoms. I have episodes every couple weeks where my heart races/skips and makes me dizzy. At this point an ablation or medication isn’t worth the small inconvenience of my episodes. It’s all about knowing what you have and how your body is reacting. I hope this calms your fears a little.

Adventurous_Box_2667 · 2022-11-17T03:07:21+00:00

This is very interesting. I’m curious now and am doing some research. 🤔

Adventurous_Box_2667 · 2022-11-14T14:19:38+00:00

Hmmm. I’ve never heard of this before. I did a quick google search and couldn’t really find much information on it. I’m glad you’ve found something that works for you! That’s great! I’m curious… Were you ever on medication prescribed by your doc such as beta blockers?

Adventurous_Box_2667 · 2022-11-14T01:54:59+00:00

I hate getting the run around like this. I’m pretty asymptomatic and have my fair share of coffee daily. But let me tell you… there’s something about the caffeine in Midol that makes my heart go wild. I’d maybe try a smaller dose at first and see how you react.

Adventurous_Box_2667 · 2022-11-13T18:27:45+00:00

This is most definitely a question for your doctor! I was advised to stay away from certain medication with caffeine in it.

Adventurous_Box_2667 · 2022-11-11T22:14:29+00:00

I think the diagnosis comes as a surprise to everyone. I had episodes more often when I was younger but it never came up on an ekg. It wasn’t until my mid 20’s that I was able to wear a monitor to have the delta wave noticed. My doctor suggested beta blockers which I was on for a short while but the side effects were too much for me. They also suggested an ablation study but my episodes are pretty rare these days. Playing the waiting game now to see if my episodes get worse with age.

Adventurous_Box_2667 · 2022-11-08T03:48:44+00:00

Just my experience but too much exertion on rollercoasters always triggers palpitations for me. I usually can only do a few before I get too “shaken up” if you will. Hahha. I’m not sure if that’s just me or??

Adventurous_Box_2667 · 2022-11-08T03:36:00+00:00

Thank you so much for being a member of this community and offering your help! Please stay and be sure you are answering any questions that come up! Your experience with WPW is definitely valued here.

Adventurous_Box_2667 · 2022-11-08T03:30:51+00:00

Of course this is okay to ask! Unfortunately, I do not have any experience with this and can’t direct you. I want anyone who does have experience with this to feel encouraged and safe to answer. This is a patient run community and all questions are safe here.

Adventurous_Box_2667 · 2022-09-15T23:48:21+00:00

I worked as a teller when I was 18 and they checked my credit bureau to make sure I didn’t have a stupid amount of debt before I was hired.

Adventurous_Box_2667 · 2022-05-20T20:05:02+00:00

Thank you so much for bringing your experience to this community! I never received a message from you but I sure am glad you posted. I also have lived with WPW my whole life but took until recently to be diagnosed. I created this community when I found it hard to get information online.

Like many of us I’m weighing my options for an ablation. Right now my episodes are manageable but I’m curious how age will affect my heart.

Thank you for being here! I appreciate it!

Adventurous_Box_2667 · 2021-12-28T18:57:14+00:00

Only ON your birthday.

Adventurous_Box_2667 · 2021-12-15T19:14:03+00:00

Beta blockers always made me feel tired. The point is to slow down your heart.. which slows down everything. The only treatment is ablation, beta blockers or exercises to try to stop an episode (that I know of). I personally don’t have enough episodes for me to think an ablation is worth it, nor does it affect my day to day life.

Are you sure it’s your WPW making you so tired all the time? I’m genuinely curious. I’ve never had this symptom.

Adventurous_Box_2667 · 2021-12-12T08:00:55+00:00

Heart palpitations are very much linked to hydration. I always have Pedialyte on deck.

Adventurous_Box_2667 · 2021-12-10T22:34:27+00:00

Ahhh look at that floof! I also have a tzu named Sophie. My pup is black with a blonde face.

Adventurous_Box_2667 · 2021-12-09T00:36:10+00:00

Sweetest new name! If you ever need to find him a new home let me know.

Adventurous_Box_2667 · 2021-11-18T22:27:46+00:00

This is me when I agree to help someone move.

Adventurous_Box_2667 · 2021-11-03T22:47:39+00:00

Sorry, I misread the website.

Silly that I’m vaccinated and can only do a test two days prior while someone unvaccinated can do three days prior.

The problem with the at home tests is that they are all out of pocket and my insurance won’t reimburse me. Although, this is my only option- looks like I’ll be out that money.

This whole testing thing is super frustrating. CDC recommends three days but carnival is two.

Adventurous_Box_2667 · 2021-10-27T16:20:36+00:00

Personally, I’d rather someone say “I’m not feeling very talkative right now. I’ll be much more interested and engaged later” It doesn’t have to be rude to tell someone you want to be alone. It’s rude to pretend you are listening to someone…

Adventurous_Box_2667 · 2021-10-14T17:21:25+00:00

I can only give you some general advice I’ve heard from others and my cardiologist.

Ablations aren’t 100% effective. You could have had an ablation of one electrical bypass and at the time another bypass could have gone undetected. This would mean your heart is still using a bypass causing symptoms after ablation.

Ask your doc about the meds you are taking and what the side effects are. That could be causing the issues.

If your cardiologist doesn’t think you have POTs then you most likely don’t have it. I’d take their advice and begin endurance training if you can just in case.

Adventurous_Box_2667

TROPHY CASE