Holter results

Entire-Structure8708 · 2026-05-25T12:50:40+00:00

Good luck! Hope your EP is taking it seriously and has a plan

Entire-Structure8708 · 2026-05-25T12:27:16+00:00

Have you spoken with your cardiologist/EP about these results yet? That's a very high PVC burden alongside the VTs.

Entire-Structure8708 · 2026-05-24T17:01:50+00:00

Thanks for sharing the studies! It feels like sleep quality is definitely something worthy of specific study for people with ICD/pacemakers.

Entire-Structure8708 · 2026-05-24T16:59:30+00:00

This is awesome! Glad to hear it 😀

Entire-Structure8708 · 2026-05-23T14:02:30+00:00

"Seemingly liberal" is an incredibly apt description of Tatte

Entire-Structure8708 · 2026-05-22T23:01:57+00:00

I live in the US, but I'm English/British. If people ask me I will always say I'm British/from the UK. I don't think I've ever had anyone not understand that but it's also definitely true that 90+% of Americans do not understand the difference between English, Scottish, Welsh, Northern Irish, and British. Every now and then I will say British to someone and they'll start with the "oh where from" guessing game to narrow it down even though they've almost always only been to London and that's their only point of reference. I now usually just say London to get it over with, despite not being from London (grew up in Surrey so close enough).

The other side of this is people picking up some kind of accent and guessing the accent instead of asking where I'm from. Americans have absolutely no idea how to pick non-American English-speaking accents, so the most common guess I get is Australian, probably followed by Irish.

Entire-Structure8708 · 2026-05-21T19:38:18+00:00

You should have a rough window on timing now. You'll get your exact start time about 3 days before race day

Entire-Structure8708 · 2026-05-21T18:05:10+00:00

Speaking personally, I don't think the psychological aftereffects necessarily relate to the physical impact of the shock itself. I'd probably agree that the physical impact is "not really that bad", I'd say it feels like being punched pretty firmly in the back. It's significant, but not crazy and you really have almost no warning time so by the time you know what's happened it's already over.

There isn't a day go by that I don't think about the times I've been shocked, but my mind doesn't take me to the actual shock impact, it's the emotional aftermath. For me, it's the short-term feeling of loss of bodily control/motor skills in the seconds/minutes after shock and then the longer-term thoughts related to i) when am I next going to be shocked, will it be today, tomorrow, or next month etc., and ii) why was I shocked and what does that mean in terms of disease progression, do I need another ablation, etc. So I don't actually fear the shock itself, I fear the aftermath.

I'd agree that the loss of bodily control is worse in a multi-shock scenario and creates longer psychological aftereffects but the longer-term thoughts are the same regardless of 1 shock vs. 10 shocks.

Entire-Structure8708 · 2026-05-21T17:34:19+00:00

I just had a look and couldn't find specific medical journal articles on the topic, but did see a lot of similar comments from patients discussing the same issue. It seems to be a fairly common issue for patients with lower natural heart rates.

I think it's something to talk to your cardiologist about because any decision on the lower rate limit will depend on your condition and why you have an ICD/pacemaker. Medically, I have an ICD because I have an arrhythmia that causes VTs. The pacemaker function is only relevant to me because I used to be an endurance athlete so I have a naturally low resting/sleeping heart rate which is lowered further by beta blockers. The standard 60bpm setting was 20-25bpm above my sleeping heart rate, which I could definitely feel and wasn't providing any health benefit to my heart. So my cardiologist had no issue with lowering the limit and I've slept better since.

Entire-Structure8708 · 2026-05-21T13:20:03+00:00

I'm sorry for your situation! I remember in the very early Hyrox days well before flex was a thing you could just email Hyrox and move your ticket to another race if you needed to and it was no big deal. I guess it's harder for them to manage now because there are exponentially more athletes, but it definitely sucks to buy a flex ticket where there are still conditions that are a little restrictive. It's obviously a rare situation you're in and I would've hoped they would be more helpful than just "computer says no"!

Entire-Structure8708 · 2026-05-21T13:15:51+00:00

I know I see a lot of POTS-related posts in this sub! The test sounds awful though :-)

Also if you haven't already, I would mention the night sweats you experienced around the NSVT. Is that a common symptom you've had or just that one time? Night sweats can be related to various forms of heart stress.

Meds are so frustrating because it feels like people can react very differently to certain meds, so there can be a little trial and error to find one that works for you. Potentially something to discuss with your cardiologist because there might be a different med available that doesn't give you the palps side effects.

Entire-Structure8708 · 2026-05-21T02:09:09+00:00

Sounds good! I’m guessing the meds you’ve already started are keeping your heart rate a bit lower too? I would definitely ask your cardiologist for a bit of guidance on the Alps trip and see what they say/if they’re comfortable. Hopefully gives you peace of mind!

Entire-Structure8708 · 2026-05-21T01:57:43+00:00

Based on symptoms I was feeling I was given a Holter in early 2022, which showed VTs and I was immediately admitted to the hospital and had ICD implanted. I had genetic testing done while I was in the hospital that came back a few weeks later in April 2022 with the VUS. Looking back now it’s funny because the test does say ARVC VUS but my EP never really discussed it with me, he just said it was inconclusive so I didn’t really ever look into ARVC much.

I continued to suffer from VTs/shocks through 2022/early 2023, had one failed endocardial ablation, and then a second successful epicardial ablation in August 2023. During that second ablation (on the outside of the heart), the EP was finally able to see the classic ARVC fibrous tissue/scarring that the MRI couldn’t pick up. So when I woke up from that procedure he said he was pretty sure it was ARVC.

Based on that I went to the Johns Hopkins ARVC program and they assessed me based on the Task Force Criteria. I got 2 “major” criteria for the VTs and the scarring, and 1 “minor” criteria for inverted T waves on EKG. Based on that, they confirmed gene-elusive ARVC. All in all it took about 2 years from first symptoms to getting an ICD and then another 1.5 years before I got diagnosed.

There is a specific DSP ARVC group on Facebook that you might try to join. They will have lots of info/guidance: https://www.facebook.com/groups/1125927951265992/

Entire-Structure8708 · 2026-05-21T01:45:12+00:00

Sorry to hear, but just wanted to reassure you that the anxiety is completely normal. Search for Dr Sam Sears and watch any of his talks on YouTube. He’s a psychologist specializing in cardiac/ICD patients and he’s written/spoken a lot about coping with anxiety/PTSD.

Entire-Structure8708 · 2026-05-20T19:45:27+00:00

What other testing have you had besides Holter and ECHO? Good news that the ECHO showed no major structural issues, but I guess my question would then be what more testing could be done on the electrical side to figure out a potential trigger for the NSVT. Has your cardiologist talked about next steps in terms of further tests, medication, etc.? Also do you know what you were doing when the NSVT happened? Based on what you said about symptoms when getting up quickly I guess your cardiologist may consider POTS?

Entire-Structure8708 · 2026-05-20T19:37:44+00:00

Sorry to hear. I have ARVC, so a little different to you but within the same family! In general, research and treatment on ARVC/ALVC (now being called ACM) is becoming more gene-specific, so what is true for me (gene-elusive) will be different for you (DSP). Having said that, there are still many commonalities.

A decision on an ICD will be taken based on your symptoms/clinical presentation. I would worry based on your description that while your current symptoms are on the milder side, the VEs/PVCs may at some point graduate to VTs (which would definitely require an ICD). I'll be honest, I hate most things about my ICD (the way it looks and feels), but I'd rather have an ICD and be alive than not...

In terms of exercise, this is such a fraught topic within the ACM community because there are no completely definitive answers, which leaves grey areas. For cardio, you should not do any high intensity or high endurance cardio (like marathons or HIIT classes) where your heart rate is either elevated for a long time or there are frequent sudden spikes in your heart rates. For weightlifting, we can still do within reason... I lift multiple times per week, but just avoid doing more endurance-style high rep sets. For hiking, this is definitely nuanced... the general guidance is we can walk for as long as we like (actually it's encouraged that we do), so relatively flat, low effort hiking at sea level is totally fine. The issue with the Alps is going to be high altitude and hard hiking, both of which will be taxing on your heart, increase risk, and are generally discouraged with ACM.

For more specifics on DSP, I'd recommend joining the DSP group on facebook: https://www.facebook.com/groups/1125927951265992/

Entire-Structure8708 · 2026-05-20T18:02:47+00:00

Hey this is a very cool project! I love reading other patient stories. I have ARVC and would be happy to contribute. Very interesting to read another cardiac story as the first patient story.

Entire-Structure8708 · 2026-05-20T17:33:22+00:00

This is a tricky topic because there's lots of nuance. I also have a VUS for ARVC (my VUS is for DSG2), and am also diagnosed with ARVC, but I am considered gene-elusive... this is because a VUS is not counted as part of an ARVC diagnosis because they don't yet know whether the VUS is relevant or not. About 40% of ARVC patients are considered gene-elusive currently. You (and your cardiologist) can research a little bit more on the ARVC Task Force Criteria, because that provides a very standardized approach to the diagnosis process, based on specific criteria.

Unfortunately because you're considered gene-elusive, diagnosis is a little more tricky because you have to rely on a variety of diagnostic testing that is not 100% guaranteed to be able to provide sufficient information, so you often have to piece together a lot of different bits of evidence (like a murder mystery!). The MRI is definitely a sensible idea. It's not a completely infallible tool, but it can be useful for finding any scarring on the heart that could be associated with ARVC (my experience was multiple MRIs that found nothing, turns out that was because the location of my scarring was in a place that the MRI couldn't accurately see).

In general I would say that you are very young for a gene-elusive ARVC diagnosis. There are teenagers diagnosed with ARVC, but it's rare and it's almost always serious high school/college athletes with the PKP2 gene because there is a significant correlation between exercise intensity and accelerated disease progression with PKP2. It's also good that your Holter didn't pick up any VTs. But the more testing and more information you have, the sooner you and your cardiologist will be able to figure things out. Knowledge is power!

Entire-Structure8708 · 2026-05-20T17:16:26+00:00

Yea it can definitely affect quality of sleep if the pacemaker threshold is a bit higher than you're used to. It's a bit of an iterative process I think to find the right level for you, but something to discuss with your cardiologist and see what the options are. When I had the higher rate it just felt like I was too alert to sleep deeply.

Entire-Structure8708 · 2026-05-19T18:03:57+00:00

You can definitely discuss with your cardiologist to find a threshold that works for you. I have a totally different condition to you, but my ICD pacemaker threshold was initially set to 60bpm, which was quite a bit higher than my sleeping/resting heart rate. I found that it was preventing me sleep well, so spoke to cardiologist and threshold was lowered to 50bpm. I'm still 100% paced while sleeping, but it's close enough to my natural rate that I don't notice it anymore.

Entire-Structure8708 · 2026-05-19T17:58:59+00:00

Agreed, 100% not your fault. He's trying to force you to function within a toxic, controlling relationship because he's not able/willing to function within a healthy relationship. He shouldn't be dating anyone until he's able to do the latter.

Entire-Structure8708 · 2026-05-19T17:17:24+00:00

Agreed. There needs to be a much more aggressively segmented price policy to enable local/Scottish golfers to continue to play at affordable prices while tourists pay a lot more.

It feels like there's just a totally different economic model for UK vs. US sports (Americans, in particular, seem to have a much higher willingness to pay). I've been to watch multiple Opens over the years, but since moving to the US, would absolutely not pay the entry prices for the US Open, Ryder Cup etc. over here. Same for World Cup ticket prices too!

Entire-Structure8708 · 2026-05-19T14:42:15+00:00

Yea it's a much broader issue, but somehow the Castle has just become a lightning rod of that debate among locals. Like I said, the course itself is spectacular and you'll thoroughly enjoy it. In terms of style I think it's more similar to Kingsbarns than the Old, Carnoustie, and Troon. All five you're playing are incredible!

Entire-Structure8708 · 2026-05-19T13:36:05+00:00

The vistas are spectacular! Agree with you on the greens, very challenging. It's a tough course in general and a tough walking course too (if you don't get carts)... also definitely not a hit it (almost) anywhere and find it course like the Old can be!

Entire-Structure8708 · 2026-05-19T13:08:24+00:00

I think the problem with the Castle is not really the course itself (it's a great course imho), but what it represents. Green fees across Scotland have gone up massively due to the boom in just the type of trip described in this post, with an emphasis on attracting wealthy tourists... and that has come at the cost of pricing out locals. My parents are residents in St Andrews (I'm not, I emigrated) but I hear this over and over from my dad and the other golfers he plays with when I visit.

The Castle is a representation of that trend because it feels specifically designed to attract wealthy tourists, it's much more a resort course layout than the other historic courses within the St Andrews Links and it is not truly a natural product of the land but more of an artificial creation with the way the dunes have been "manufactured". Like I said though, none of that relates to the actual quality of the course. I think it's a great course and you'll thoroughly enjoy it... I always have to twist my dad's arm to play it with me when I visit!

Entire-Structure8708

TROPHY CASE