Jump to content


  • Posts

  • Joined

  • Last visited

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

dizzy55's Achievements


Newbie (1/14)



  1. This morning I decided to take some readings on waking and my pulse went from 65 to 104 in less than a minute on standing. Realise I probably had some sort of virus during the test as I was sleeping most of the day and didn't have any appetite (which never happens). Does anyone else find their symptoms abate if they're ill. Would be interested to know.
  2. Hi. Thought I'd update you. I went for the TTT last week and I knew it wasn't going to show up anything because, very unusually, I had no symptoms. I felt fine during the test and even when they sprayed the Nitro. Conclusion - you don't have POTS and you need to exercise. On telling the Dr. that I can't due to having M.E. she asked what that was. Really? I've been unable to stand for 14 years due to my BP and heart rate rising and in the past Specialists have said they thought I had POTS (presumably the hyperadrenergic type). The result was obviously disappointing as I had high hopes that they might be able to help me. I did ask if I would still be able to see the POTS Specialist and was told that they may want to do some more autonomic testing and that I was on his waiting list. Just wondering if anyone has any thoughts on the above and if it's possible to 'fail' a TTT but still have POTS. Any help would be appreciated please.
  3. Thanks for all the information Kim. Glad you're on something that helps. We visited Florida last April/May and my ankles had to be seen to be believed! Must be so hard living there all the time with that heat (although I can see the attraction!).
  4. Thank you so much for your reply Kim. I suffered from urgent diarrhea for 3 years but also had what I thought was slow emptying of the stomach as I used to feel as though I had a bowling ball in there sometimes. Despite repeatedly mentioning this to my Doc at the time he always ignored it and prescribed me Immodium which I always took if I went out the house. Due to your reply I have just googled gastroparesis and see that you can indeed suffer from it and diarrhea at the same time so suspect that might well be what I've got. I started taking Inulin a few months ago and this has been a huge turning point as I very rarely have the diarrhea now. I've also found that since eating Paleo bars containing dates that my stomach feels a bit more comfortable too. I will mention this to my new Doc and see what she says.
  5. Hi. Just wondering if anyone has problems with their fluid balance. I find I can't drink near mealtimes as this causes a dodgy tummy. I also find that my body appears to swell up at times. I bought a new coat which I loved but it didn't fit. Was about to send it back the next day but couldn't resist trying it on one more time and - hey presto - it fitted. Was wearing exactly the same clothes and am wondering what was going on. Any ideas would be appreciated please.
  6. Hi Green. That's a really interesting theory. I was kinda excited to have a proper TT Test. Good to hear someone else who's symptoms improve when they're sick. I had been ill with a virus when I had my autonomic testing - typical - but luckily (?) it still showed up that I had autonomic dysfunction, even though I managed to stand the whole 10 minutes! It's like when you take a very ill Child to the Docs and they end up running around the waiting room isn't it?
  7. Hi Sarah. Thanks for the links. After 10 years of symptoms, I diagnosed myself but the Doc rubbished me. I insisted on standing for the period of my consultation and he reluctantly referred me to a Heart Specialist in 2013 who thought I had POTS. It isn't until now that I've actually been referred to a POTS Specialist. The referring Cardiologist said, in view of my high BP, there might be one drug, Midrodine I think, that they could try me on so I didn't want to give them the impression that my BP was low! They did give me a 24 hr BP monitor the week before but I don't know the results yet. I've also had M.E. since 2000, hence the foggy brain and have other health problems. I felt awful cancelling the appointment but it's my one chance to get a true diagnosis and I didn't want to blow it! Has anyone else noticed that their symptoms improve if they've got something like a cold. Also eating only 500 calories occasionally in a day (now that doesn't happen very often as I love my food!) seems to help as well.
  8. Hi thanks for the replies. Think I got a bit confused there lol! I've potentially had POTS since 2002 but had the chance last week that I'd been waiting for and didn't want to risk the test being negative, but as you say, it's the pulse and not the BP which I forgot, doh!
  9. Hi. I'm new to this board and looking forward to chatting with you. I'm just wondering if anyone has got any ideas as to what was going on with me last week when I was due to have a Tilt Table Test please. Unfortunately I had to cancel it as my symptoms seemed to temporarily reverse. My problem is normally high blood pressure and high heartbeat on standing. When taken at the hospital the top figure has been as high as 195 over 110! The day before the TT test, after standing for about half an hour (I can never manage more than a few minutes before I'm forced to sit down) my BP was 104 over 73, yes really My pulse was about 119 though. I thought I must be going down with something (my POTS appears to be immune related) but I didn't. I'm totally puzzled as to what could have caused this. Has anyone else had a similar thing happen to them please.
  • Create New...