AmberK

CarrieJessica, I totally feel for you. Unfortunately, although these doctors have years of knowledge about certain conditions, they don't seem to get any empathy training!. Him even saying that "It doesn't matter" speaks volumes at his lack of awareness of the emotional impact of a long term, debilitating condition. I'm waiting on a yes/no reply as to whether I have POTS at the moment, and when I first saw my consultant before I had the TTT, his words were "It does sound like POTS but I don't know why you want to know". They have no idea how much difference a diagnosis can make, let alone your need for living closer to someone that knows what they're talking about. To have a diagnosis means you can start to understand what is going on inside your body. With symptoms like these that are so terrifying at times, that in itself could make a heap of difference. I do hope that he gives you more definite answers very soon. Hang in there.

Thanks Kimbellgirl. I'm not on any medication for the POTS-type symptoms, just for a thyroid problem. I've tried various things over the 18 years that I've been ill, but without a diagnosis they don't really know where to start with treatment. I finally feel like I'm getting very close to finally finding out the answers though, so this last bit of waiting is making me impatient! I phoned the hospital today though, and asked if they could let me know before my appointment, as two months is so long to wait. The consultants secretary was lovely, and she's promised to phone me back on tuesday with the results! Fingers crossed...! Thanks for your reply, Kimbellgirl

Well, I had the tilt table test on tuesday. The first ten minutes were awful, and although I was feeling calm by the time the test arrived, my body was shaking uncontrollably, like my body had gone into shock. After that, I was very dizzy and kept having trouble with my legs, and my knees buckled a couple of times. I was strapped in but my legs weren't strapped so was able to move a bit. I shuffled about and straightened up again, then the dizziness restarted again. Eventually, at 32 minutes, I fainted, and the test was stopped. Afterwards, I was told that my heart rate was fairly high throughout, although they didn't give me the 15 minutes laying down before tilting me up, so I wonder if this didn't enable them to get a resting heart rate first. At the moment of fainting, my heart rate shot up, and although my blood pressure dropped, it wasn't a major drop. My consultant only works at that hospital one day a month, and I received my next appointment date with him... July 26th! After an 18 year wait, I know a couple of months shouldn't make much difference, but it's already an agonising wait. I hassled the nurses a bit to tell me, but all they would say is that it looks likely to be POTS, but that they weren't allowed to diagnose. They confirmed that I definitely fainted, and that my heart rate shot up, but didn't tell me by how many beats per minute. More waiting, aaaaah!! I'm going to phone the consultant's secretary tomorrow to see if she can tell me anything, but at the same time I'm wary of coming across as a pain in the bum! Thanks for all of your support on my previous post, it's much appreciated.

Thanks Mary I've just received the results of my 24 hour ECG and 24 hour Blood Pressure monitor tests. The ECG showed heart rates varying from 67 bpm to 127 bpm, so this is why they decided to refer me for a tilt table test. The Blood Pressure, however, didn't dip below 96 throughout the 24 hour test. The consultant has stated that it could show signs of autonomic vagal neuropathy, but surely the blood pressure would have to be low too? I'm confused. I did wonder why they carried out these tests, as they tell you to go about your usual daily activities, which for me is largely laying propped up slightly in bed, so I will be glad to have the tilt table test, but wonder if I should lower my hopes at the outcome, given the results of my 24 hour tests?

Thanks Corina

Thanks everyone As I await phoning the hospital tomorrow, I'm thinking it may be a good idea to fast anyway. My concern is that if I phone the hospital and the receptionist tells me I don't need to fast because she hasn't been told to tell me to, then maybe I will be risking a false negative. I am apprehensive about going without food or drink for that long, as my symptoms definitely worsen when I'm hungry or thirsty, but would rather do this than risk a false negative. My hopes really have raised that they may finally be about to find out what's been affecting my life so severely for the last 18 years, and I'm trying to stamp on those hopes a bit as I got this way last year when they were almost certain that it was Addison's Disease and then I got a negative. If only the consultants had some insight into just how much all this affects you emotionally as well as physically, I bet they would be a little more sensitive at times. Again, thank you all so much for your support. I've been told this is the final route in the testing as they don't know what else to test for if it's negative, so I will return back to the diagnosis of M.E and anxiety. The prospect of that feels such a heavy weight on my shoulders at the moment, as I know people with both of those conditions who don't experience these symptoms. I'm feeling incredibly emotional about all of this right now, and your warm welcome has helped a lot.

Thanks everyone, that definitely clears that question up!

Thanks so much everyone for your advice and your warm welcomes. I didn't get a chance to phone the hospital in the end today but will do on Monday. I would much rather fast and get the right results than always be wondering "what if?". My TTT is at 2pm in the afternoon though, so I'm not sure if it's wise to go without food or drink for the entire time before that? I've noticed on several posts on this forum, people referring to more than one TTT. If this one is negative, I'm pretty sure they're going to stop this route of investigation. Why do so many of you have more than one, especially after getting a positive? Thanks for mentioning the youtube clip, MomtoGiuliana, I've found and bookmarked it and will watch it as soon as there's some peace in the house I really do appreciate the warm welcome. I've sometimes felt like such a freak as my symptoms are so "odd". IF it is POTS, it would explain so much. By finding this forum, I finally feel like I've found some people who "get it", even if it's not whatever is wrong with me. Thank you.

I'm undiagnosed at the moment (please see http://forums.dinet.org/index.php?/topic/20104-18-years-undiagnosed/ ) but have noticed that all of you with profile pictures seem to be slim. I was slim when I first became ill, but a combination of inactivity and comfort eating has resulted in me being big now. I just wondered if it's usual for people with POTS to be slim? Is that a factor? I guess I'm trying to suss out the likelihood of this being POTS, and as I'm big whether this means it's less likely? Thanks.

Thanks so much Chaos and McKenzie for your replies. I will give the hospital a ring this afternoon and ask about the fasting. Thanks for the advice, McKenzie. I am dreading the test, but probably more at the possibility of it being another negative and still not knowing what's wrong with me, than anything else. I very rarely stand in one spot for more than a few seconds, as it makes me feel so ill so that part I'm definitely dreading, but it will be so worth it if I get some answers.

Hi everyone, I'm new here so thought I would give a background to my situation... I became ill in 1993, and was diagnosed six months later with M.E. Some of my symptoms don't fit the M.E but after my diagnosis, doctors were reluctant to investigate further. Last September, I went to see a doctor over a separate issue with eczema, and she began to read through my medical notes. She was shocked that I hadn't had further investigations, and so started the ball rolling to find out what might be causing the main symptoms. At one stage it was thought that I had Addisons disease, but I tested negative for that last year. POTS has repeatedly come up over the years when I've tried desperately to get some answers, but until I have the relevant tests for anything, I'm still left uncertain as to what on earth is happening to my body. I don't expect a miracle cure, but am desperate for some kind of medication to at least ease the symptoms. Also, to just know what is really wrong with me would be fantastic. I spend most of my days horizontal in bed, and long ago stopped trying to do things like go out for meals with friends or family, as the disequilibrium is severe and therefore makes sitting upright in chairs very difficult. I've been very blessed in other areas of my life, and eight years ago met my now husband on an online M.E support group. I'm 36, and having children is looking increasingly unlikely, but I'm lucky to have a wonderful 11 year old step daughter. The first symptom that I experienced was fainting, and fainted many times over the next couple of years. These days, thanks to making adaptations to my life, the faints are far less often, but I still have very frequent disequilibrium and frequent dizzy spells that feel quite violent but are generally short lived each time. Early this year I was referred to a consultant who treats people with POTS, and was hopeful of some answers finally. He stated that I could very well have POTS but that he was baffled as to why I would want to know as he couldn't do anything for me if it is. His whole manner was pretty upsetting and he showed no sign of awareness of what it might be like to have had such a limiting illness for almost two decades. He referred me for a 24 hour blood pressure test and a 24 hour ECG, and then after thinking that I had been dropped again, I suddenly got a letter through the post yesterday saying that I am to have a tilt table test next month. My questions are many, but I wont bombard you all with them now, as I'm sure this post is plenty long enough for you all already! The main thing that I would like to ask though, is if any of you had to do any preparation for your test? On my hospital letter there is no mention of fasting, and yet I've read elsewhere online that if you eat before the test it can produce inaccurate results. I really don't want to have waited for this for so long and then mess up the test by not preparing as I should. Any advice would be very appreciated. Thank you for reading.