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About cmep37

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  1. I am so pleased you had a wonderful day. I have a similar attitude to doing things - you weigh up the pleasure you will get against the flare you will inevitably suffer and decide if it's worth it. A couple of years ago I decided to go to a friend's wedding - I just thought stuff POTS, I'm going! I planned it all out - my parents and brother were invited so I had plenty of support, I had my hair, tan and nails done the day before so I could stay in bed until the very last minute. We turned up just before the ceremony started so I could sit down right away and after the ceremony was over th
  2. Oh yes, I passed out several times as a teenager and then learnt to recognise the warning signs that I was about to faint so well that I never actually fainted again. When my ears started to ring and my vision to grey out at the sides I would sit down regardless of where I was (in the middle of my own high-school graduation ceremony was probably the most embarassing!) It didn't really happen that often or affect the rest of my life, it was just a little quirky thing of mine that I struggled to stand in the heat or when I had my period. I then got mono/glandular fever and this little quirky t
  3. I think it's part and parcel of dysautonomia. I have to close my eyes travelling in a car if I'm going at motorway speed as my brain just cannot process the images. Loud noises, bright lights, funny smells all affect me far more than the "normal" person. I just try and avoid what affects me as much as possible and if someone drops a plate next to me and I jump a foot in the air and then have to lie down to control my HR, I try to laugh about it.
  4. I've had severe POTS for 17 years and I do understand exactly where you're coming from - that awful feeling where your whole body is screaming at you that something awful is about to happen and however much you rationalise that you are safe and there is no danger your body just doesn't believe that. I have to say that I agree completely with @Pistol - the more you push it, the longer and worse that feeling will last. After awful advice from several GPs, I continued to work and actually increased the amount of exercise I was doing which left me bedbound for a couple of years. Once I started
  5. I'm having it as well although I don't get the flu jab as I'm largely housebound and my family all get the jab so the chances of me getting flu are small. Considering Covid can trigger POTS in previously healthy patients I dread to think what sort of a flare it could create in someone who already has dysautonomia. As I don't get the flu jab and I am under 50 I probably won't get access to the Covid jab for a long time and will have a chance to see what reactions people are having to it before I take it.
  6. Mine was 14 this morning! Mind you I felt awful, my BP was 84/70 and my HR 149 BPM. It's never more than 25 when I'm standing and I find the lower it is is a better indicator of how bad I feel than HR - sometimes my HR can be 130ish (which is good for me) but I'll feel worse than when it's 140ish (which is more normal) if my pulse pressure is less than 20. My GP doesn't like it - her advice is to lie down and drink a litre of water if it gets below 20 which usually helps a bit.
  7. The only one that I've had was the massage of the carotid sinus which the doctor did before the TTT. He was a junior doctor and said to me, I need to do this test but it might trigger a stroke - is that OK? Luckily I'd read up on it and knew the risks of a stroke were tiny but I know if he'd told my Mum that she'd have been out of there like a shot! The technician rolled his eyes and apologised when he'd left - he said he would have to have a talk to him about scaring the patients unnecessarily!
  8. Ooooh thanks for the reminder @DADofPotsSon. I'd forgotten about tracing my family tree - I started working on it years ago and got a bit stuck around the 1870s. I must get back to it and see if I can get any further back.
  9. I love reading but I have had to change the books I read - no more literary fiction or historical biographies for me, I now read much easier stuff! I've found card making or scrap booking to be good POTS hobbies, but a top tip is to have a cupboard or shelf where you keep work in progress so you don't waste time and energy putting it all away and getting it back out again. I like to cross stitch and I taught myself to crochet watching YouTube videos and I love it (I've made some lovely baby presents for friends). I find socialising difficult (I can only cope with one person at a time and if
  10. I'm really sorry to hear that - mine wasn't too bad but I think that's because I'm so used to having severe symptoms. On my TTT my HR went from 96BPM to 172BPM within 15 minutes - the technician and doctor carrying out the test decided to stop it there as my HR was still climbing and they got scared! I've seen higher figures on my BP monitor when I'm in a bad flare so although I felt awful during the test I've felt worse! I think it's quite common for doctors to start POTS patients at a low dose and then work up if necessary. Personally I couldn't tolerate 2.5 mg of Ivabradi
  11. Probably cos none of them had ever heard of it!! Before I read about it myself and realised this was what was wrong with me, I had seen 3 rheumatologists, 1 neurologist, 1 clinical psychologist, 2 gynaecologists, a dermatologist and 2 gastroenterologists none of whom suggested I might have POTS or EDS. None of the GPs in my practice or even in my area knew anything about it (they do now!! - my own GP has a patient who's granddaughter was initially diagnosed with ME but after chatting to my GP they got her a TTT and low and behold - POTS!) My GP was quite helpful - she said that she wou
  12. I completely understand - I paid privately to see the only consultant who specialises in POTS in Northern Ireland and he diagnosed me and set me up with a treatment plan consisting of the standard POTS drugs. He told me he couldn't treat me on the NHS as I don't live in the right area and referred me to a colleague. Once I'd tried all the drugs on his treatment plan without any success my NHS consultant wrote to him, telling him he didn't have enough experience to treat me and asking him to take me on as an NHS patient. He just wrote back saying the NHS trust won't allow him to treat any mo
  13. Big hugs @CallieAndToby22 POTS is bad enough but POTS and cancer must be nearly unbearable. I can definitely relate to this! I'm 42 and have had severe dysautonomia since I was 26. My fiancé left me when I was 29 after caring for me through 3 years of severe dysautonomia where I was almost completely bedbound. I couldn't blame him, he was never going to have a normal life with me and he desperately wanted children which I clearly couldn't cope with! I have a law degree that I worked enormously hard for and had to give up a job that I loved yet I can't even manage to do voluntary le
  14. @Pistolthis is pretty typical of the UK! POTS patients tend to get foisted on to EP cardiologists who have absolutely no interest in POTS and don't want to educate themselves! As far as they are concerned POTS is not life threatening, therefore you are far less important than their usual patients who require pacemakers etc never mind how badly POTS impacts on your life. @NinHave you had a look at the POTS UK website? This was where I found the consultant who diagnosed me- at least anyone listed in the site has an interest in POTS and some knowledge of it. Your current consultant is c
  15. Thanks for the link @Muon - really useful information! And thanks very much for the tip about getting rid of the waving girl @H. Potsland, Oregon- it was bugging me too!
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