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noodlemaster

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  1. Like most of you, I have been told that I am simply anxious and doctors have sent me away feeling like a time-waster or worse. I was diagnosed with POTS and joint hypermobility earlier this year. A few months ago I had a "click" moment when I read about functional illnesses. These are, as far as I understand, illnesses where the body does not have an obvious problem with its structure, but it is functioning incorrectly. In short, I believe that POTS, in my case, has been caused by chronic anxiety, with hypermobility as a predisposing factor. It doesn't feel like anxiety, because I am always worrying and I have few relaxed times for comparison. I believe my body is frequently stressed by becoming ready for fight or flight, and that this has caused a semi-permanent change in how the body functions, but not in the structure of my body. Even when I do feel noticeably more relaxed, my body is still dysfunctional and feels odd physically. I think that there is a spectrum of ways that anxiety or stress can express itself, from anger to panic attacks to longer-term insidious effects. I think that for me, my body has changed itself in response to being stressed by my thoughts. If a doctor had told me this a year ago I would have been angry at them. I had to sort of feel this for myself. This realisation made me concerned at first, but I now feel more in control. I think I can beat it mainly by changing my lifestyle and outlook. I believe this will help me feel more in control and, over time, allow my body to spring back into its original functioning - at least some of the way.
  2. It took me a little while to accept because I was so used to "fighting my corner" when seeing doctors before diagnosis that it wasn't anxiety - directly - because I experienced symptoms all the time and I did not have panic attacks. And I had a silly misconception that psychosomatism meant that you were consciously making yourself ill and being over sensitive. I'd been reading a lot about different lab measurements of PoTS people - the chemistry and other objective stuff, and I think I just assumed that this meant it was a problem with the structure of the body. I am glad that I have been diagnosed with PoTS and that I fought for it, but coming to terms with what I believe is an emotional cause has made me more positive and determined to get better. My cure - partial or complete - might not be quick and might have setbacks, but it's already started.
  3. This is probably contentious but I have recently come to the conclusion that my PoTS is most likely to be the result of chronic undiagnosed anxiety, with joint hypermobility as a predisposing factor. I don't see another explanation of my autonomic nervous system having a measurable problem with its function and no measurable problem with its structure. I think it has been stressed frequently and as a result has become (semi) permanently distorted. It cannot be reversed in the short term by relieving anxiety, only in the long term. It doesn't mean I'm making symptoms up and it doesn't mean I can just think myself better - in the short term. What can be done is to address the chronic anxiety as best as possible, which is what I'm currently investigating. This could then reverse PoTS, I believe, along with possible medication and other lifestyle changes to help the PoTS itself. I've reached this conclusion myself.
  4. I often feel better after a small drink. But I have to watch it as I also get drunk and a hangover with only a little bit more. I haven't measured it recently, but I did have a higher HR the morning after having three drinks over an evening last year.
  5. Cool designs! I think number 3 is the clearest, although I find that the message gets a little mixed. When I see green on a traffic light I think "go", which doesn't fit the logo of someone lying down and the slowest heart rate, to my mind. But then again red fits well because it says "danger".
  6. I saw a mug today which said: 'I'm awake and dressed. What more do you want?' Edit: not that this would be a good mug for someone with dysautonomia! The owner of this mug turned out to be very helpful and not at all lazy!
  7. Hi Blueskies, I have a BP increase of around 20 diastolic and 15 systolic on standing (to around 115/75), from my home measurements. I have POTS secondary to joint hypermobility syndrome - not sure how this ties in with your question on whether it is a sign of hyperadrenergic POTS, I haven't learnt enough yet. I've read in other posts something similar to what sunburnt said - salt and fluid have been known to even out the blood pressure, not simply raise it across the board. I have been on high salt and water for a month now, but no change in symptoms yet, unfortunately. I was under the impression from my specialist that me going on to use medication is quite likely. I'm intending to do a poll on POTS sufferers' BP responses to standing. I don't think that a rise is all that uncommon. nm
  8. Hi toddm, I was interested in your post. My BP goes up when I stand (diastolic by around 20, and systolic by around 10 - to around 120/75). I was wondering if you have any more information on the orthostatic hypertensive group of people with POTS? I'm not sure if my increase matches this. Thanks, nm
  9. Well I've been going on this site: http://convert-to.com/table-salt-amounts-converter.html which says that 5g salt is nearly one teaspoon, and that a tablespoon is 17g. I'm assuming this applies to regular fine-grained table salt, none of the chunky stuff. I wonder if POTS patients noticed a rapid change in their symptoms when they first started taking extra salt and fluid (without medication) ? It's been a month for me now, and there has been no difference...
  10. Thanks Jana I'm on the look out for some Gatorade type stuff. Not sure if there's an equivalent in normal UK shops
  11. Hi thanks for the replies. Yes I agree it makes sense to add things gradually. I guess I'll add more salt to my current intake which is approximately constant, and keep measuring my BP. Cheers
  12. Hello, I've been reading the DINET website and different medical articles about POTS, and I'm STILL confused about the amount of salt that I should be aiming for. My dysautonomia specialist didn't tell me any value. The DINET 'What Helps' section refers to two articles, one of which suggests 3-5 g per day, and another that suggests 10-15g per day. I wonder if someone could help me out? I realise that there is in no way specific guidelines for POTS meds or approaches that work across the board, but these values differ by quite a lot, and I've read that some people eat even more! I'm also worried that I could eat too much. Some info that might be relevant: I'm male, 6 ft tall, 68kg. My blood pressure tends to be around 100/60 - 110/65. My HR response to lying to standing is on the order of 60-90. POTS secondary to JHS. Thanks, nm
  13. It's really interesting to read this. One of my symptoms is very cold extremities. In winter it's bad on cold, clear days, but worse on wet, warmer days. I'd noticed the correlation with damp weather, but I'd never thought about the barometric pressure. Does barometric pressure have a significant effect on blood pressure and/or blood volume? Since developing POTS, I have been in the UK, which I think has few very high or very low pressures. But they do change a lot (hence Brit's obsessive weather chat). I'd be very interested to see what I'd be like in a different climate.
  14. Hi Shimoda, I think I can relate to how you're feeling. I was really going off alcohol when my POTS started, and I was studying at the time. I've also studied in North America so I have an idea of what it might be like. Lots of people around me were letting off steam by going out to parties and getting drunk. I was frustrated, but I started to realise that generally I wasn't actually missing out on much when I didn't drink and went home earlier than everyone else. It wasn't worth feeling like crap. I realised that I could still have a good time with my friends, and I like to think that I'm seen as someone who has good ideas of things to do that DON'T involve drinking. It's not very imaginative to just go to the pub. So I would ring them up and do something as simple as just going for little walks with them. Often we'd end up in an unfamiliar part of town, and get rained on. Stuff like this is more memorable than being drunk at another party. Plus sometimes my friends would be hungover and I felt a little pleased that I wasn't the only one feeling dizzy and nauseous etc. hehe. But yes, I certainly understand that it's hard when alcohol is generally used so so often as a way for people to be able to get to know each other.
  15. Hiya, I'm not sure if you've seen this article on orthostatic hypertension, which mentions dysautonomia. It might be useful: Orthostatic hypertension: when pressor reflexes overcompensate http://www.nature.com/nrneph/journal/v2/n8...cpneph0228.html
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