u/Impossible-Number-60

I recently got an ILR implanted in my chest to monitor for SVT after having an episode in my doctor’s office. I’m conflicted on whether I think it’s SVT or just normal sinus tachycardia as I have POTS/dysautonomia but my cardiologist (who specializes in POTS) is already calling it SVT.

Would triggering an episode be unnecessarily risky? From what I’ve read SVT isn’t life threatening it just feels scary? When my POTS is well managed and I’m not sick I have to push myself really hard in order for an episode to happen. My nephew also has SVT and has had two unsuccessful ablations, his mom had him run hills to trigger an episode which was then caught on his holter monitor and I’ve been debating doing the same.

I guess I’m just hoping to get confirmation asap and find out if I’d be a candidate for ablation. I do understand there are risks that come with ablations but the thought that I could potentially be a part of the majority that finds relief is really tempting.

So far my triggers have been high adrenaline and cardio-heavy intense exercise, especially if I’m bending over a lot during the exercise. I feel a slight pressure/buzz in my chest when it’s about to happen, and then a squeezing sensation around my heart followed by shortness of breath, dizziness, and obviously a really fast heart rate. I’ve always been able to use an ice pack on my neck and lay down, and then it stops after a minute or two as long as I’ve calmed down.

I should add that these episodes started at the same time my dysautonomia was triggered or worsened enough to become an issue. I went most of my life without daily palpitations or a racing heart beat and then I got covid and strep throat at the same time and was really really sick, my autonomic functions haven’t been the same since. Structurally my heart is healthy and I did all the normal heart tests to rule out other issues. The tachycardia also got more frequent after I started to wean myself off of my beta blocker, I assume the extra adrenaline receptors my body made to compensate for the beta blocker were ultra sensitive when lowering my dose and just causing this issue to become more obvious.

I’ve had a histamine intolerance for a few years with worsening symptoms, cut out gluten and got on a low histamine diet which helped a lot at first. The hives came back a few months ago after briefly reincorporating gluten into my diet. I believe my intolerance for gluten was making me deficient in a lot of things, my medications were also not as effective when eating gluten. I was supplementing methyl b12, D3/K2, iron, C, and getting plenty of nutrients in through whole foods but it just didn’t seem to be helping anymore.

I cut out gluten again and at one point I tried to supplement methylfolate and it made me feel insane. Anxious, jittery, etc. I guess that should’ve been my sign that I could be deficient in folate, but instead I just stopped taking it. About 2 months ago I started supplementing folinic acid because I read it was much gentler on your nervous system and since then I’ve hardly broken out in any hives at all. I used to break out in hives from the temperature change of stepping out of the shower, a sharp wind on my skin, and skin irritation of any kind. That all has seemingly resolved in a matter of weeks.

Has anyone else improved after consistently supplementing folate?

I’m trying to figure out if this is a reaction to the gluten I’ve been in contact with or just my body being weird, or potentially my other chronic issues just flaring randomly.

I’ve been strict gf for about 5 ish months, before that I was off and on with bad results during the “on” periods. I am NOT diagnosed celiac, but I have symptoms that have lead me to believe it’s not just NCGS. Some being: my heart medication for dysautonomia becomes ineffective when I’m eating gluten, my chronic neck pain from disc degeneration becomes unbearable, lots of neurological symptoms, tremors, irregular periods, weird food intolerances (couldn’t eat potatoes for a few months the last time I tried gluten regularly), etc etc. I do have digestive issues but they’re very much not the worst symptom and they don’t seem triggered by CC. My neurological and cardiovascular issues do seem to worsen from CC but I’m not sure if it’s correlation or causation at this point.

Anyway, my husband has eaten gluten out of the house, which of course I’m totally fine with as long as he like washes his hands and stuff. I’ve been a little lax lately and he’s been eating gluten in very close contact with me, in the house and on shared surfaces. A few days ago a wind caught us as we were eating outside in a partially enclosed area and blew his crumbs all over and since then my sleeping heart rate has gone up by about 5-10 bpm (significant for me because I’m on a beta blocker that has kept me steady) and my neurological tremors, adrenaline dumps and just general dysautonomia has been acting up after being steady for months.

I’ve read so many people’s perspectives on their CC reactions, lots of which are digestive upset, and am just curious if there’s anyone here that has mostly neurological and/or just atypical reactions to cross contamination in general.

Looking for any advice on how to prevent drops while the temps are high. I’m new to treating my insulin resistance/reactive hypo and was doing really well until it got hot where I live. I’ve also got dysautonomia and take a beta blocker so my heat intolerance is ridiculously bad. I’ve read that some people experience high blood sugar in the heat but I’m definitely not one of those people. Are we just supposed to stay holed up inside until this passes? Luckily I live in a climate that’s cold most of the year, but when the heat hits June-August it hits hard.

I’m curious if this is a common phenomenon. I went gf at the end of 2024 for gerd and started eating it again last fall. I didn’t suspect celiac at all at the time or even NCGS. I realized after eating gluten again I’m even more sensitive to it than I was before. My meds quickly stopped being effective, stomach issues worsened, chronic pain worsened, dysautonomia/POTS worsened just a week or so after eating gluten again. Maybe I just lost my tolerance for it? I spent most of my 30 years prior eating gluten daily, had some issues off and on some of them chronic but they never seemed to be effected so dramatically before.

Disclaimer: I have already switched back to a GFD and am working on eliminating wheat from my home altogether. I will be speaking to my doctor about this and seeing if celiac testing is right for me.

I’m curious if anyone here has an experience like this. I’m not super educated about celiacs, never been tested, and I suspect I just have non celiacs gluten sensitivity. In recent years I’ve had worsening chronic conditions, dysautonomia, cervical spondylosis, hormonal imbalances, weight gain etc.

I decided to go gluten free a year and a half ago because I developed gerd and a worsening histamine intolerance. When these issues let up a little I incorporated it back into my diet. Everything seemed okay at first, but slowly my chronic pain and inflammation worsened, I also, for the first time in my life, could not tolerate potatoes in any form after a few weeks. I cut gluten back out of my diet and am able to eat potatoes again. I’m not sure if it was a coincidence or if gluten sensitivity can cause more food intolerances.

The last time I got an A1C test was about a year ago and it came back as 5.6%. At the time I didn’t realize how close that was to actual pre-diabetes and I was not educated by the provider about it at all. I suspect it’s because I live in an area where diabetes is extremely common and they’re used to seeing values much higher.

I have been diagnosed with both dysautonomia and cervical spondylosis which have both worsened in recent years and been aggravated by Covid. I now heavily suspect my Spondylosis, which is just a blanket term for arthritis and other degeneration issues, and dysautonomia are directly related to my (potential) insulin resistance and reactive hypoglycemia.

I’m attempting to cut carbs slowly but I’ve found the calorie drop and false lows really aggravate my dysautonomia, which causes adrenaline rushes, palpitations, hot flashes etc. I feel like I’m in a low when my blood sugar is a steady 90–115 throughout the day. Does anyone here have any tips for adjusting to lower (not low) carb and tapering off of sugar? Any advice is welcome.

I should say I do have a glucose monitor and check my blood sugar frequently. I’ve found a carb heavy meal will spike my blood sugar to the 150s within an hour and often drops back to 100-110 in another hour. These ups and downs have been hell. I also have a histamine intolerance, I suspect mast cell issues too, and my food options are so ridiculously limited.

Curious if anyone here has carotid sinus hypersensitivity? I suspect I could have this. I use a neck massager on my neck and shoulders because I have cervical spondylosis and extreme tightness in those areas. Have also had pretty bad whiplash in the past. I noticed recently almost every time I’m using the massager on my neck my heart rate goes down into the 40s and will go back up when I remove it from the neck area. After researching this phenomenon it could also explain my hypotension. Definitely not touching my neck with an at home massager anymore and will be speaking to my cardiologist about it.