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About FileTrekker

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  • Birthday February 2

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    United Kingdom
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    Gaming, Railways and Tech.

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  1. To be fair I never noticed my feet going red / purple for a long while after getting the tachycardia symptoms, it may be that you wont notice it unless you've been stood for so long.
  2. I think the difference that confuses a lot of people is, generally, if there is a drop in BP along with the rise in heartrate on standing, that isn't pots but Orthostatic Hypotension, which is possibly what her cardiologist is saying. Some say BP can drop with pots, some don't, it seems very poorly defined and understood. Pots is basically a catch-all for a collection of symptoms that just don't fit anywhere else, it does not really explain much unfortunately.
  3. FileTrekker

    PVCs and PACs? — Irregular Heartbeats

    Haha, yeah, but given the average human being has (at least) 86,400 beats a day, often over 140,000 beats per day, even 3,000 in one day is only 3.4% of all heartbeats. So not very significant. In your case only 0.02% of your heart beats are ectopic, so you're laughing, lol. They're reaaaaaaaaaly annoying though.
  4. FileTrekker

    PVCs and PACs? — Irregular Heartbeats

    I'd be pretty chuffed with only 20 PVCs a day, I have nearly 3,000 a day! I think anything under 20,000 and the doctors generally don't consider it significant at all, indeed they just see it as normal.
  5. FileTrekker


    I do feel for you. I don't have it nearly as bad as you've clearly got it currently but I've also experienced, as most of us have, dismissive doctors, especially ER departments who are just not geared up at all to understand Dysautonomia or give us appropriate treatment / guidance. The only thing I've found that has helped is to try and stay calm when dealing with Doctors and other medical professionals, try not to seem anxious, nervous, upset etc. As hard as it is to do, and believe me I know, the more calm and rational you come across, the less likely they are to start dismissing you as having panic attacks or other mental health issues. It's a chicken and egg situation and although the Dysuatonomia often can lead to health related stress and depression, it's not the cause, but it's easy for Doctors to see someone panicking and afraid and put it down to stress / anxiety. But as others have said the best thing to do is find a good doctor / cardiologist who understands pots and who you can trust, it can be hard to do but searching online for a doctor / cardiologist with an interest / specialty in the subject is the best way to go.
  6. FileTrekker

    PVCs and PACs? — Irregular Heartbeats

    Same here. I was going to start a very similar thread, actually. With me, I didn't have many PVCs at first when I first had Dysautonomia / PoTS, but that was mostly due to being off work and mostly taking it easy. As soon as I had decided to return to work, even before my actual return, suddently the PVCs (had them defined via a 24hour holter) started back up, and have been back ever since, at a rate of 1 to 2 a minute at times, but what I have noticed is very key I think; - When I'm actively distracted, i.e. in a conversation, doing something that takes me away from all my worries and so on, they pretty much dissapear. - When I've not been doing much exercise or mostly sitting / lying / feeling sorry for myself etc. they come on worse. - For many, taking more magnesium via supplement is a big help, I've tried it with mixed success. I had a pretty good week last week where they were not gone but much less frequent / intense, but this week they're back with a vengeance. - Sleep. I know I've been worrying more and getting less good quality sleep the last few days and it makes them much more noticeable and intense. So yeah, unfortunately getting exercise, not worrying about our health, etc. etc. is not easy for us to control so we're probably far more predisposed to PVCs / PACs and other ectopic beats. Never had the fast heart rate / tachycardia due to PVCs though but again try magnesium citrate, start small and work up, you'll find this very well may help. Also check out Dr. Sanjay Gupta's videos on the subject, I find them very helpful and reassuring when they're running away from themselves and it can help break the cycle of getting them when you stop worrying about them;
  7. FileTrekker

    How do I know what I'm dealing with here?

    Thank you. I can imagine I can’t get a diagnosis but I’m just looking at possibilities. Sorry you’re in the same situation, it does sound very similar. I have a follow up with cardiology in January so I can push for it again then and if he still refuses, I can ask. I believe a good cardiologist in the UK is Dr. Sanjay Gupta in York who I am sure many here are familiar with from YouTube so I am strongly considering paying to see him privately. hope you get some answers too :)
  8. FileTrekker

    How do I know what I'm dealing with here?

    Thanks for your reply! luckily so far, other than generally feeling a bit yucky at times, I can still stay stood and move around, get to work and so on. It’s not been quite as easy as it used to be as I get tired easily, but so far I can cope. The biggest issue has been when I’ve had anxiety or stress to deal with. When I do I find myself feeling a lot worse. Despite this I’d quite like to get my situation defined properly. My biggest fear is a possible deterioration down the road.
  9. FileTrekker

    Any gamers around here?

    I’m the community manager for GameFront, so I guess I’d have to say yes. RDR2 and Fallout 76 mostly atm.
  10. Hi, I'm new, at the end of August of this year I suddenly felt unwell and noticed my heart rate was in the 90-100 BPM range sitting down, and increasing on standing. I went to A&E who ran tests and said they could find nothing wrong. This happened again a week later, rinse, repeat, etc. At this time it was when I noticed that upon standing my Heart Rate would go a lot higher than when sitting. There were a few incidents, mostly after overeating where my heart rate was also higher either sitting / lying, or when moving around i.e. rolling over in bed, but still, higher when standing. Since changing diet and so on the symptoms now occur only when standing, except last week when it happened again, along with flu like symptoms, which the Doctor reckons was viral condition. I have been tested by ECG (EKG), Blood Tests and X-Ray, but my doctors refuse to do an ECHO as they say people with a normal ECG don't usually get an ECHO test on the NHS because they can find nothing to indicate a need to do so. The only thing the ECG found was PVCs (premature ventricular contractions) ectopics. I also had a 24hr Blood Pressure Monitor which was mostly normal with a few drops in BP but not many. My blood pressure does not drop significantly on standing, although does slightly, but gets slowly worse the longer I stand. My voice is also a little weaker than it used to be, but I find this mostly due to being difficult to catch my breath, I run out of breath a little when laughing or talking. My hands are cold quite often, I also get momentary dizziness when sat down. One other thing I have noticed is when I am relaxed / resting, especially in bed, my heart rate will go a lot lower than it used to, often in the low 60's and 50's. at one point high 40s (Bradycardia) despite being 6ft 5in and 220lb, but again, the doctors do not seem concerneed (There aren't really any symptoms when I have brady however) Cardiologist suspects POTS and made a diagnosis of "Probable POTS", but feels little reason to do any further diagnostic testing as he says there's little benefit and that the cause can not often be found, but he did not do any real testing. My symptoms do not seem to fit any category of dysautonomia very well. I listed the symptoms of every common form of Dysautonomia and listed all the known symptoms. I then matched my symptoms to each and did a percentage match to each to see which fit best. The results are; PoTS: 54% Autonomic Dysreflexia: 28% Pure Autonomic Failure: 25% Autonomic Neuropathy: 20% Multiple System Atrophy: 18% Autoimmune AAG: 0% So my question is how can I know for sure what I am even facing, given PoTS seems to be simply a collection of symptoms and the underlying reason (PAF, MSA, AD etc.) is not known. These conditions vary wildly from the begin to fatal. Is there a way to make more sense of this? Anything that will give me more certainty in likelyhood of which condition it is?