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Everything posted by FileTrekker

  1. Indeed. Personally I don't even know if cardiologists are the right people to even be looking at POTS beyond initial workup and checks for other possible causes. Surely the focus once a healthy heart and no other heart conditions is ruled out is to look at an autonomic specialist and neurologists?
  2. "inhibiting atrial-ventricular conduction, and extending the refractory period of the heart rhythm" This sounds like a bad thing? I mean in certain situations. Especially in someone with PVCs or PACs / other arrhythmias? I often find it curious how focus on treatment seems to be to try and surpress the pacemaker in some way when the pacemaker is just doing what it's being told to do. Interfering with it seems like playing with fire to my mind.
  3. What is Rauwolfia? I'm not sure why anyone would even be taking it / want to based on that? How does it relate to reserpine / what is that?
  4. I feel like this every day at some point or another. Or all of it. I think it is Anxiety in my case as my heart is constantly flip flopping around and bothering me.
  5. It's disappointing to hear he does not seem to be as knowledgeable or reliable as it seemed.
  6. It seems like a LONG way for me to travel in my current condition and it would cost me a lot to do so if they don't even know as much as you or I probably do. 😕 What would they likely be able to do? Apparently the website for the Autonomic Unit there says they only accept referrals from specialists or GP's on the advice of specialists.
  7. I am aware of him but I can't afford to see him privately. I believe he does see patients on the NHS also at York but as I am in Greater Manchester he is not under my NHS trust.
  8. There's something called the PALS (Patient Advice & Liason Service) who I can appeal to, but I've not had the strength to go through the miles of red tape. My GP has written to my cardiologist but my next appointment isn't until the end of May, asking him to consider further testing / care. My only other option is private medical care. But even my GP said because my ECG is fine they normally wouldn't do an Echo and indeed I was told no. Hence why I did it private. The raft of other tests for the multitude of possible causes even if they did agree to them will take literally years at the rate it's going. I've been under my cardiologist at the hospital since September last year and in that time I've only seen him twice and an assistant doctor once, and every time it was a 5 or so minute appointment and all they did was give me beta blockers / shout at me for not taking beta blockers.
  9. Thanks. It's just frustrating because on the NHS they don't want to entertain diagnostic testing, they just go "you prolly have pots" and just throw beta blockers at me. They wouldn't even do an echocardiogram. I had to pay for my own privately. It cost me a fortune.
  10. You've said this before but as I've said before the doctors say it's impossible, most people with POTS seem to never be able to find out the cause??? So this is anxiety provoking honestly because how am I supposed to deal with this when I can't find out the cause yet you're saying all these possible things that will kill me P.S. I have no vascular doctor / have never heard of that?
  11. I just read on this forum elsewhere that; Is this correct? Does having POTS or whatever it is I have mean I'm going to get blood clots / PE / stroke / heart attack???
  12. Sorry I think I've posted in the wrong forum by mistake, can the thread be moved?
  13. So, I developed POTS almost instantly one day, infact I can pinpoint it to Sunday, 5th August 2018. My fitbit tracking my HR and vitals shows I was fine up to that, and this was the day all my symptoms started and I ended up in the hospital. I have been living a nightmare ever since. I was wondering, as I was advised by JimL in another thread that I need to find out the cause of my POTS as it could potentially be fatal, but my doctors have told me that there's no point in looking as they almost never find out. Is there a way to narrow down causes based on weather the onset was so sudden? So I can eliminate certain potential causes? I feel like this would then give me a place to start with my GP as just diagnosing one of the many many causes can involve lots of testing and on the NHS just getting one test is months of waiting so it could take me years, assuming they'll entertain me at all. I feel the more educated I can be the better.
  14. The only issue is I get thousands and thousands every day now whereas before I got dysautonomia I had maybe one or two a month if that. I was never unfamiliar with them just they've gone from being very very sparodic and occasional to just constant every minute of every day around the clock nonstop. ECG, Echo, XRay, Blood Tests and Holter all came back fine bar all these PVCs.
  15. I don't smoke and all my chest x-rays have come back normal. I've had blood tests for Addisons and pheochromocytoma and both came back fine. I've got slightly elevated liver enzyme levels but other than that my bloods always come back fine. I've had an echocardiogram and that came back fine. All my ECG's come back fine. I've had 24hr monitoring which showed frequent PVC's but other than that normal sinus rhythm with no couplets or runs or anything like that. They won't do a CT, nuclear, tilt table etc. as they don't see any value in it, so I've never had any of the other tests you mention. So I've never had any other testing. Thanks for your information. It seems as you say it's likely that I have little hope for the future as I can't find out what it is and I have no way to know. I can't afford to change doctors.
  16. So it's likely I may have these? Is there a way to tell / find out if I have these fatal ones?
  17. Video today by Sanjay Gupta caught my attention; I have a business trip in a few weeks and I am dreading it. Has anyone tried this and does it help / work for you?
  18. Not sure I have anything scientific to bring but it seems likely there's a connection?
  19. Thank you for the information. there isn’t much that sets MSA symptoms apart from pots that I can see there on those pages? I’m worried because I’m male and pots is supposedly not found in males often but MSA is?
  20. ...not sure. All I know is I have suspected POTS. They dont see value in looking any deeper into it than that. I don't think I have diabeties though.
  21. The first thing my cardiologist said to me was that it's almost impossible to find the cause and there's no point trying. How can I know I dont have the fatal kind of POTS? Also what is PNS or carcinoid syndrome? Never heard of it. Could I have these?
  22. I am a bit worried as I have suspected POTS but its not confirmed as POTS (how can it be?) and Wikipedia says; This has set my anxiety off somewhat..... I thought POTS wasn't fatal??? I have orthostatic intolerence etc. so this is sort of implying I am at risk of these things. My hands often get very cold, epsecially my right hand. Is this what leads to pneumonia? I also find breathing can be harder at times.
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