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cmep37

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  1. Thank you everyone for taking the time to reply! @Sushi and @Krista I am really glad to hear your pacemakers have helped you. It is nice to not feel quite so alone - when you say you have POTS and bradycardia most people assume you meant to say tachycardia! I still need to do a lot more research into dysautonomia consultants and pacemakers but of course I'm still in a flare so I've no spare energy at the minute! As my GP is forever reminding me having a chronic illness is a marathon, not a sprint so I just need to sit tight for a bit and wait until my autonomic system calms down a litt
  2. Thanks very much @Pistol. I just spoke to my cardiologist's secretary who has told me he's looked at the Holter results but doesn't think they merit an urgent appointment. I asked her what would and apparently it's got to be life threatening which I agree my bradycardia isn't. It is having a really detrimental effect on my health and quality of life though but that doesn't seem to matter. His secretary was blaming coronavirus for the long waiting lists (my usual routine appointment which should have happened this summer is now unlikely to take place until 2022 at the earliest) Of course h
  3. I was diagnosed with POTS over 4 years ago (I've had symptoms for about 30 years but was always misdiagnosed). I'm not on any medication for POTS as I've not been able to tolerate anything. In the last 6 months as well as the POTS tachycardia, I have also developed increasingly worse bradycardia in the afternoon, evening and at night. My GP arranged a Holter to see what was going on and I got the results today - my HR ranged between 37 - 153 with episodes of sinus tachycardia and sinus bradycardia but no arrhythmia. My HR follows a fairly predictable pattern - when I get out of bed my
  4. Was your antibiotic a fluroquinolone like Cipro or Levaquin? Fluroquinolones can cause a lot of problems in the autonomic nervous system (search cipro and POTS if you want to check) and if you already have a problem I would imagine it could make it a lot worse. My GP knows not to give my antibiotics in that class unless there is absolutely no other choice.
  5. Snap - if I eat in a hurry I will get a spasm! Fizzy drinks are also a trigger for me so I try to avoid them. I can never swallow anything without a spasm for a couple of minutes after I sit up after lying down - weird!
  6. I get bad heartburn during flares too - my gastro says during a flare my whole digestive system just slows down and my stomach makes more acid to compensate. I take Omeprazole ( a proton pump inhibitor) during flares to cut down on acid which works for me. However like @Pistol I think you should get it checked out by an expert - before being prescribed the PPI, I had a gastroscopy just to make sure everything was OK.
  7. Has anyone seen him? In person or just through a web consultation? If so what did you think of him? Was he worth the money? I have had POTS symptoms since I was a teenager (I'm 42 now) but was undiagnosed until 4 years ago. My POTS is severe, my average HR after 5 minutes standing is low 140's. I have seen several cardiologists in my area and have tried all the usual drugs - Fludrocortisone, Midodrine, Propranolol and Ivabradine without success. I am currently not on any meds and just increasing fluids, salt, wearing compression tights and doing as much exercise as I can manage. Th
  8. I have lost around 35lbs from the weight I was 15 years ago when my POTS became severe. I didn't lose it all at once but when I'm in a flare I just seem to burn through calories. Despite eating the same amount as usual I can easily lose 2lb a week and I find it so much harder to put weight on than it is to lose it. I now weigh 140lbs which I think is OK for my height (I'm 5 foot 10).
  9. Thanks so much for your support @Pistol. It is very interesting to hear your explanations for what is happening with my ANS - it makes a lot of sense! I live in Northern Ireland which is part of the UK but separated from the mainland by the Irish Sea. There are no autonomic specialists in my area; I have seen 3 different electrophysiologists. The first didn't understand POTS at all; he told me my symptoms were psychosomatic and that I was just trying to avoid work! I begged him for a TTT and he finally agreed but I refused to ever see him again. After the results of my TTT
  10. Thanks for taking the time to reply @Pistol especially as I know you're not doing great yourself at the minute (I hope you are feeling a little better). What is an autonomic seizure? I sometimes have full body tremors when I am in a flare which can last anything from a few minutes to a couple of hours but I am fully conscious. I must confess that I no longer go to A&E when I'm in a flare - I have had really bad experiences of doctors assuming my symptoms are all psychological and the bright lights and noise of hospitals together with lengthy waiting times to be seen means that I just wa
  11. I'm seriously struggling; I really overdid it last week when the weather was hot and my parents were away (I'm usually housebound and live with my parents so normally my Mum does nearly all of the cooking and cleaning). Anyway I was doing OK until I wasn't - you all know the story ... Saturday evening I got really bradycardic - HR was around 42 and I was very short of breath. Sunday morning I woke up with what I call adrenaline surges - I'm not sure if that is what they are as I don't get tachycardic or hyperventilate or have anxious thoughts although I do get very nauseous and sometimes
  12. I'm not hyper POTS but do flush and sweat when standing although not to the degree you describe. I have found Driclor a great help in helping my armpits, back and under boobs stay dry! I started putting it on every day, I can now manage with just once a week. It does sting and itch a little when you put it on but is worth it IMO.
  13. You can do what's known as a poor man's tilt table test yourself with a cheap BP monitor or get your PCP to do it - lie down for 5 minutes and measure HR and BP. Then stand up and measure HR and BP after 5 and 10 minutes. For a POTS diagnosis you need a rise of at least 30 bpm in your HR which is sustained or for your HR to be higher than 120 bpm and for orthostatic intolerance I think it's a drop of 20 points although I'm sure @Pistol can confirm that.
  14. I've tried a wide variety of SSRIs and SNRIs as every GP I saw before I was diagnosed with POTS was convinced my problems were psychological and if we could hit on the right anti-depressant I'd be fine. Finally I got a referral to a good clinical psychologist who said he didn't know what was wrong with me but I wasn't depressed or anxious and he believed my symptoms had a physical cause. He said that if the anti-depressants weren't helping my symptoms I should stop taking them. I've been on sertraline (Zoloft), escitalopram (Lexapro), fluoxetine (Prozac) and venlafaxine (Effexor). I had no
  15. I am so sorry you are going through this Amyque. I have had symptoms since my teens (I'm 41 now) but began to have severe symptoms in my early 20's after a bout of glandular fever but was not diagnosed for almost 15 years (I suggested POTS to my GP myself who had never heard of it!) . I had a TTT to confirm the diagnosis where my HR was 172 after less than 15 minutes standing and I usually average 140 after 5 minutes standing so my numbers are similar to yours. The important thing to remember is that if your PET scan comes back clear, POTS will not kill you, however bad you feel! There are
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