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About FileTrekker

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    Advanced Member
  • Birthday February 2

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    United Kingdom
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    Gaming, Railways and Tech.

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  1. The appointments with GP's are supposed to be 10, with cardiologists 30 minutes, but anyone who uses the NHS will tell you this is wildly unrealistic. Doctors in and out, Cardiologists 5, 10 minutes or so if you're lucky. Ok. Just been staying off the internet as best as I can as it just seems to wind me up more than anything.
  2. Never heard of that. Did it work for you?
  3. 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?
  4. "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.
  5. 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?
  6. 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.
  7. It's disappointing to hear he does not seem to be as knowledgeable or reliable as it seemed.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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?
  13. 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???
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