AmberK

37 now, 17 when symptoms started

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 they were pretty sure what I had was Addisons. Further tests ruled this out, as they have now done with my Nan too. She doesn't seem to have POTS symptoms, other than those that also correlate with an ageing body, but the link is interesting nevertheless. Thankfully, the docs are very hopeful that once they've sorted the sodium out, she will be back to her old self (and partying much more than me!)

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 reading and makes me wonder exactly what type of POTS I have.

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?

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.

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 helping me out, and so long as it's a more reliable one, we're not as concerned with the cost now as we were before, as it was just wasted money with that one. If anyone has any more suggestions for heart rate watches, I would really welcome any input. I'm checking out the other ones suggested in this thread again. Basically, I don't need a calorie counter or anything like that, just a heart rate monitor that constantly reads my heart rate and will sound an alarm if it goes above a level that I input.

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.

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

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 positively to it. I feel a bit flat after the appointment, and can't help wondering if I'm on too low a dosage. I'm not hopeful of improvement with this new dosage, as it's no higher than I started with. It's so awkward, as you don't want to tell the consultants what to do, and they must have reasons for the dosage they prescribe, but I'm concerned that it seems he will write midodrine off for me if no improvement with the new dosage. I would really like to give it a proper chance before giving up on it though.

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

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.

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 sixty something over forty something when I lost consciousness, but I don't know what it did when I regained consciousness. Does anyone else have such erratic changes?

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.

I'm seeing Dr.Fynn at Papworth hospital in Cambridge, if that's any help. I really hope you find one soon x

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