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AmberK

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Everything posted by AmberK

  1. 37 now, 17 when symptoms started
  2. I've heard of possible genetic links with POTS before, but had dismissed it in my case as the rest of my family are reasonably healthy (except my sister has ITP, which seems completely unrelated). This week, however, I've been wondering. My nan, who is the grand old age of 91, has had Parkinson's Disease for many years. She was rushed into hospital this week as her Parkinsons had worsened, and she's been told she has a severe sodium deficiency. This in itself made me wonder, but then they briefly thought that she might have Addison's Disease. I was told a year before my POTS diagnosis, that th
  3. Thanks everyone for your responses. It makes me feel a little less odd now I was beginning to think maybe I'd been misdiagnosed again, as the main drug of hope hasn't made any difference. Thanks to your posts, I will just look forward to trying the next drug instead and see if that helps. Florinef has been mentioned as a possibility by my consultant, but I was a little reluctant as I'm already overweight and he said it can cause weight gain. On the other hand though, if it did help then I could exercise, so that would then help bring the weight down. Thanks for the link too, it's interesting
  4. Both myself and the consultant had been really hopeful that I would have some improvement on Midodrine. Apart from a couple of days early on where I felt a mild improvement, I've now been on it for around 6 months. The consultant seemed genuinely surprised and disheartened that it hasn't helped, and so I'm left wondering if I'm a bit odd or if others have had a similar result with it? If so, have you found anything else to help?
  5. Thanks everyone. It does sound like Polar is the way to go then. I had previously ruled those out because of how many of them are focused around running. I manage very little exercise, so this is mainly for just learning about what my body is doing and to give me some warnings. Ultimately though, I would like to start some regular floor exercising, and an HR watch could be invaluable to me with that. I think it was all the mention of laps, etc that was making me think perhaps Polar wasn't the one for me, but it certainly sounds worth a revisit to consider those. Thanks for all your input.
  6. Well, I used the watch for a couple of months, and then suddenly I was getting major dips in my heart rate as well as spikes. I felt ok at the time, but as sometimes it just kept dropping, I did the opposite of what the hospital told me to do when I have the high spikes. Then a couple of minutes later I felt much worse, but the heart rate went back to normal. It was pretty scary and very confusing, until I realised that the watch is faulty! No wonder I was feeling so much worse after forcing myself to be more upright! So, I've decided to invest in a more expensive one. My parents are kindly he
  7. Really sorry to hear this, Charlotte. Trial and errors are so frustrating. I really hope it's onwards and upwards though, and that you find some improvement with other methods very soon.
  8. Thanks Charlotte. Yep, I would be pretty miffed at having counselling as the alternative! Unfortunately, when some specialists hit a brick wall with treatment, they settle on the psychological route. It's ridiculous. Thankfully, I have a great cardiologist, I'm just a bit deflated with his recent lack of hope for my improvement. I have decided to be hopeful anyway
  9. Hi Charlotte, I'm glad you've had some improvement now I read this thread with interest. I was put on 2 x 5mg midodrine a day, about a year ago, for a short period of time. For the first couple of days I had some improvement, then I went back to how I was before. I was taken off the midodrine a short time later, but then was put back on it at 2 x 2.5mg daily. No improvement at all. I saw the cardiologist today, who has upped it to 3 x 2.5mg to begin with, moving on to 2 x 5mg. He seemed very disheartened that I'd had no improvement with midodrine, and said that most people do respond positiv
  10. Hopefully someone will come along who will be able to answer your question. I'm unable to, but just wanted to say how sorry I am to hear what you went through. It sounds absolutely horrible
  11. Thanks for your reply Emma I faffed about for ages and eventually ordered the Timex T5G971. From this thread, it does look like there's quite a range of decent ones to choose from. Thanks for the tip about the lubricant too.
  12. Usually, my blood pressure is around the recommended 120/80. I frequently faint, and at such times my blood pressure dips rapidly. I've noticed though, that after a particularly bad dizzy spell or faint, I have high blood pressure. When I fainted in the doctors waiting room, they took my bp afterwards and it was high. The doctor explained that my body had gone into recovery, which increased the BP. But why then does it go too high? I had a near-miss today, and managed to get to the floor to avoid fainting. I took my BP shortly afterwards and it was 151/104! On the tilt test, my BP dropped to s
  13. Also, I highly recommend STARS (www.stars.org.uk) They are an amazing bunch of really helpful people, and have a full list of UK specialists on their website too.
  14. I'm seeing Dr.Fynn at Papworth hospital in Cambridge, if that's any help. I really hope you find one soon x
  15. Could anyone give me their opinion on this one please? I think it ticks all the boxes, but as I've never had one before, I don't want to get it only to then find out it's missing something vital. Thank you. http://www.amazon.co.uk/Sigma-Heart-Rate-Monitor-Berry/dp/B002Y0B2AQ/ref=sr_1_26?s=sports&ie=UTF8&qid=1370557908&sr=1-26&keywords=heart+rate+watch
  16. Thanks Alex and Michelle. That changes my mind, so I will look for one with a chest strap. It sounds like they work much better. I've had problems with watches with stainless steel backs before, but it sounds like I can either fix that or wear it elsewhere if I have the chest strap. Perfect I've just reread Iamcertain's post,..doh! Thanks for the correction. I don't think I will have a problem with it being too big
  17. Thanks everyone, I shall look into all of those. I was hoping for one without a chest strap, as I would imagine it would be uncomfortable to wear all the time? I'm very allergic to nickel so will have to ensure that whichever one I end up with, doesn't have nickel in it. I've not worn an ordinary watch for this reason for years, but am hoping to get around it somehow as I really think a HR watch could be helpful. If the chest strap didn't fit you, Iamcertain, then I wont even attempt it, as I'm much bigger than you
  18. I have a heart rate monitor, just one of those that you put on your finger. However, I'm thinking that it would be a good idea to get a heart rate watch so that I can just glance at it at any time, and know what my heart is doing. I don't always feel the palpitations, so don't always know I'm in trouble until I've fainted, so I'm wondering if one with an alarm would be a good idea. I know very little about the watches though, so is this something that an alarm could be used for? I've been having a look on Amazon, and the ones with alarms seem to be just general sports watches. Has anyone on he
  19. Hi again The TTT is done slightly differently in the UK, one of the things being that a 5 minute rest period is the norm' here unfortunately. I've been told that it used to be 15minutes but they were told to cut back that timing (costs, I expect ) so pulling them up on that point wont come to much unfortunately. I had 0 rest time on my first, but thankfully had the 5 minute rest on the second test. That does sound like a low BP to me, so it could be something to pursue in trying to see a cardiologist. The convulsions are something that I get too, and it showed itself in both tests. They were
  20. P.S- I know you can't give medical advice, just wondering about if any of you have similar symptoms or know of symptoms like that related to POTS
  21. Six months ago, I had a bad cold which I thought had caused me to trap a nerve when coughing. The symptoms started in my feet, very strong pins and needles, and a numbness up my right leg and buttocks. It gradually spread up my right side, making my right breast go numb and the pins and needles spread down my right arm and hand. I'm beginning to wonder if it wasn't a trapped nerve though, as six months on, although the numbness and tingling has gone completely from everywhere else, my right hand and particularly fingertips, still have the pins and needles. It's there almost constantly, but wor
  22. First of all, I'm glad your appointment went well and that you have a TTT booked It's a very good sign that they've told you to stop eating and drinking 12 hours in advance,- my second test I was told to do that, but the first didn't tell me to prepare in any way at all, so it sounds like they have some idea of what they're doing. I can relate to the ME/CFS problems, so my main advice is to definitely make sure you're strapped at the knees so your legs don't buckle with weakness. I wouldn't bother running yourself into the ground beforehand. I rested up, as I was concerned about fainting befo
  23. Phew! Bit rude of them not to reply, but great outcome anyway.
  24. Thanks everyone, that's really helpful advice. I bought 6 bottles of 1.5l water, and have added a teaspoon of salt to one of them. It's not as bad a taste as I thought, but I think I will put less in the next one and build it up if need be. I've ordered two jugs so that I can use tap water for the rest of the time, and alternate them in the fridge. Does anyone know why people with POTS should salt-load? I had a hair mineral analysis test done 11 years ago. I've just looked, and my sodium levels came back high on that I know it was 11 years ago, but I was just as symptomatic then.
  25. I wanted to ask further things, like with the NMH, but the U.S seem to be much more clued up about POTS generally than the U.K. Having said that though, Papworth is the leading heart hospital in England and they really were fab. All I've been told so far is that it's POTS. I suspect NCS because on both TTTs, I had a very sudden and dramatic drop in blood pressure, but I've decided to wait until my next appointment with the Cardiologist to ask about that, rather than risk them thinking I'm bossing them around and trying to self diagnose. I've always found that a tricky balance, with the M.E too
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