AmberK

Batik, I really feel for you. You seem to be in a very similar position to where I was a year ago. If they do offer you a TTT, it might be worth checking out yourself to see if whoever you're referred to, has the necessary experience. I don't belittle the problem with this at all though. As soon as you start questioning them, hostility rises. I know you've replied on one of my threads before, and so know that I had one done incorrectly. I finally got a proper one done at Papworth hospital, but that's a bit far for you to travel! My main advice to you, though, is STARS. http://www.stars.org.uk/ They have been absolutely fantastic for me. I contacted them during the hassle over my TTT last year, and just having someone in the UK with some knowledge of it all, is such a welcome relief. There's lots of info about POTS on their site, and if you ask them, they will send you some free leaflets about POTS, and also the TTT. I hope this helps, and good luck!

I've no experience with the compression, so will be interested to read the replies. I got my wheelchair from the hospital, on the NHS. I don't know if the situation will be different in the U.S, but it might be worth asking your doctor or consultant if you can get a free one? I got mine about ten years ago, and they come and service it free of charge when anything goes wrong with it. It officially belongs to them, but I've been told to keep it as long as I need it. Wheelchairs can be pretty expensive to buy, especially to get a sturdy one which was essential for me. Mine also has a seat belt so that if I faint whilst in it, I don't fall out of the chair. I'm sure other people in the U.S will be able to give you more thorough advice.

Thanks for the advice, Shona. I am seeing the consultant again at the end of next month so will ask then if I can have my blood checked for salt levels. I've not heard of Nuun tabs or pedialite, so will check them out too. This forum is invaluable! It's so weird suddenly learning about the illness that has had my life upside down for the past two decades! Very very exciting that there may be things that can help though.

This is really interesting! I gave up on bras years ago (unless going to hospital for tests) and often either go without, if I'm at home, or else wear a loose fitting swimming costume under my clothes, without wires. I thought I was just a bit odd, but it's reassuring to know it's a common problem.

Thanks for your reply Batik That's really helpful advice with the making your own electrolyte drink, I will definitely try it this week, thanks. I've often craved salt but assumed I should keep it to a minimum. I'm overweight so asked the nurse that did my TTT about it, and she said as I don't have high blood pressure, I should be salt loading. It's apparently no extra risk being overweight, it's all about the blood pressure. I've been adding salt to my food since wednesday, so will see how it goes

Hi, Can anyone give me advice about salt loading please? I've been told to do it by my consultant, but he didn't say how much extra salt I need, or what kind of things I should be eating. Also, does anyone know how best to make electrolyte drinks?- the advice from google seems very mixed. I've had POTS for a long time, but only just been diagnosed, so any other advice in what I should be doing would also be appreciated, thanks

Thanks everyone for your support, it really helped Yesterdays test went MUCH more smoothly than the first. I was a bit horrified, but not entirely surprised, when I was repeatedly told that the place where I had my first tilt test, don't actually do tilt tests! This time, my knees were properly strapped in, I had a good 5 minutes rest for the resting heart rate (They said they would like to do longer, but they aren't allowed to. Still, it was 5 minutes more than the first one!) I automatically tensed when I was tilted, and kept tensing up my leg muscles until I remembered that I read on here that that is exactly what NOT to do! I immediately relaxed a bit as soon as I remembered, and then seconds later I fainted, so thank you sooo much to everyone on this forum, for helping my test to last such a short time rather than go through a longer torture! At the point of losing consciousness, my heart rate went up by around 50 beats per minute, and my blood pressure dropped significantly. I was told the test was positive and my diagnosis has changed from "strongly indicates POTS", to a more definite "POTS". Phew! After 20 years, I finally, definitely, know what's wrong with me, and I can't tell you how much of a relief it is. Last time, I was sent straight home, but this time was given tea and toast, and had to stay for almost two hours to stabilise properly before being allowed home. Last time, I kept regaining and losing consciousness while they worked out how to put the bed back to supine , in a room with several panicked-looking nurses that had rushed in. This time, I was horizontal when I came round, and everything was calm. All in all, a MUCH better experience. (Still not my idea of fun though )

I find it really interesting that no one has voted fainting. I voted lightheadedness and then looked at the other votes, and expected there to be lots of votes for fainting. People have always found it weird that I'm more concerned with the feelings of presyncope than fainting itself, but finally I'm not alone! When I faint, although really distressing (not to mention the fear of head injury), no one expects anything of me at that time, and it's clear to everyone that I'm ill. The pre syncope is worse in a way because I can look absolutely fine on the outside, while inside I'm going through ****. It's isolating and scary, and it lasts far longer than fainting.

Thanks so much both of you for replying, it really helps to know I'm not alone with my worries. Alex, don't worry, I've a twisted sense of humour too I think it helps keep us sane with these symptoms! It really was ridiculous, and she didn't seem to know how to work the tilt properly so I kept regaining and losing consciousness as she couldn't get the bed down. I did put in a complaint, but they covered eachothers backs, insisted my knees were strapped in, etc, so it ended up my word against hers. Thank goodness my doctor transferred me to a more competent hospital for a second opinion! Jknh9, thanks for your feedback too. Regarding the straps, that's very reassuring. When I regained consciousness I was in a most bizarre position, due to a strap under my arms but not much anywhere else! That's also helpful to know for 2) as well. Hopefully the straps will solve both problems. I'm shocked that you had so long to rest! I had to sit in a chair for a few minutes while she asked me questions, then was transferred to the bed, the things hooked up to me and then told to lay down and was immediately tilted! My resting HR was 105, when in reality it's usually around 80. It went up to 129, then the nurse repeatedly scolded me because my knees kept buckling. The whole thing was really stressful, and I didn't faint until 32 minutes, which is a miracle for me to last that long usually! That is reassuring what you've said though, and they've told me that if the test is positive I will have a bed for an hour afterwards, which is a whole lot better than being wheeled into the waiting room and sent home straight after fainting, like I was before. I've got an echocardiogram two hours after my tilt test, so I hope whether it's postive or not, they will let me rest for a while in between. I'm not to eat or drink anything after 9pm the night before. The test is at 9am, but is two hours drive away, so I'm worried about fainting before I even get on the table, but hopefully there wont be much waiting in the waiting room at that time of the morning. I usually drink a lot on journeys, so it should be interesting, anyway! Roll on thursday when it's all over and done with Thanks again for your feedback, I do feel much better about it all.

Aha, those posts all finally make it make sense, thank you all! My test next wednesday will be the second tilt test I've had. The first one didn't go well at all, as I didn't have a resting heart rate taken, and my knees weren't strapped in. I'm pretty sure that judging by her panicked reaction when I fainted, that the nurse hadn't performed the test before. It's taken almost a year since then (and 20 years since becoming ill) to finally get a diagnosis of POTS, based on some elements from the first TTT and some further ECGS. I now have a fantastic cardiologist at a different hospital, and I feel in much more capable hands than the first time around. I know that things should go much more smoothly this time, but I've a few questions if you don't mind please... 1) Firstly, last time the test was prolonged because I have very weak legs (especially knee joints) and my knees kept repeatedly buckling. I've since found out that this in effect "reset" the test as it pushed blood flow back up when they buckled. Obviously, I'm pretty sure that this hospital will actually bother to strap my knees in, but I was wondering if anyone else has weak knees, and if so, did the straps prevent your knees from buckling? I think this is probably my biggest worry about it this time around. 2) Whenever I feel particularly ill, I seem to subconciously compensate by fidgeting, which holds it off a bit. How do I override that urge? 3) Last time, I didn't have a resting HR taken at all, it was simply taken seconds before tilting, and straight after hooking me up to everything whilst still chatting. Presuming I do get a chance to relax a bit first this time, how do you relax? My HR is always higher when taken at the doctors or hospital, partly due to sitting up in the waiting room, and partly nerves I think. I want to give my body the best chance to get to my usual resting HR before the test, to make the test as accurate as possible. Sorry if these questions seem silly.

I know exactly where you're coming from, Robert. I've had periods where I've felt completely mind-mashed from self doubt. Is it something I'm inadvertently doing to myself? IS it all in my head and I somehow make the faints happen, or let them happen? It's a horrible, horrible place to be, and I found myself swinging from complete self doubt, to outraged chip on my shoulder for not being believed. Having a diagnosis doesn't make the illness go away, but suddenly I can put all of that mind chaos behind me and begin to understand what's happening to my body.

Oops sorry for the starred out word! It wasn't a bad word,- honest!

I describe it as wonky or unsteady. Neither really fully covers it, but I find myself fidgeting a lot to counterbalance the weird sensations of movement that go on inside. It's nice to find other people who have similar symptoms. It can make you feel a bit of a freak, as with a broken leg or something, it's easy to describe and understand what's happening. With POTS, you can look completely fine on the outside, while on the inside all **** is breaking loose!

I'm absolutely disgusted by this, jknh9. I completely understand why you're so worried,- I would be too You've had good advice on here, I really hope it works. Please keep us updated.In the meantime, it does sound like a change of doctor would be a good idea. It sounds like your current one has a lack of manners, let alone empathy!

Can anyone tell me why the TTT is 45 minutes long, when the diagnosis has to be made from the first 10 minutes please? I'm a bit confused.

Thank you Zap and Lejones1. I don't know if they offer the saline after fainting at the TTT here in the UK,- I was simply wheeled back to the waiting room for my husband to take me home after the last one.This one is at a different hospital though, and they seem to be quite a few differences for preparation this time (no drink or food before the test, having a bed for an hour afterwards, etc.) The echo sounds fine, I'm pretty sure this is just an ordinary one, so maybe I can have a little kip for another hour while they're doing it Thanks for putting my mind at rest.

I've got my second tilt test next week, and am having an echocardiogram afterwards. I've been told that I will have a bed to rest in for an hour after the tilt test, but during and after my last tilt test I was very ill, so I'm mainly nervous about having to sit in a waiting room after my recovery period. I'm aware that an echo is the same equipment used for baby scans, and that I thankfully get to lay down during it, but I was surprised to hear it takes an hour. Has anyone else had an echocardiogram, and if so can you tell me a bit more about it, what to expect, and why it takes an hour? Thanks.

I found this poll interesting. I've just been diagnosed with POTS after almost 20 years of illness. It seemed that everytime I was sent to a different specialist, if it turned out that whatever was wrong with me, wasn't their specialism, then they would send me back to my doctor with a diagnosis of anxiety. I do have anxiety, but as a result of the illness, not the cause of it. What astounds me the most is that no one ever offered me treatment for anxiety, and also that none of the people diagnosing me, had any qualifications in mental health. I wish they realised how hard it then makes your future road, as every time that diagnosis comes up again, the next doctor takes you less seriously in finding out what's really going on. I finally had a breakthrough after another batch of blood tests suggested Addison's Disease, but when further tests proved negative, I was pointed in the direction of possible POTS, and finally to a specialist that knew what they were talking about. At last! One of the most disturbing occasions on the road to diagnosis, was seeing a new doctor, who told me that I'd been abused as a child. Horrified, I told him that he was completely wrong and that I had a very happy childhood. His response to this was that the abuse was so painful that I've blocked the memory out, which has caused me to keep fainting. I really wish I'd reported him now, but at the time I was so upset I just withdrew from medical professionals as a whole.

Hi Misstraci, I've been on the mini pill for around 7 years now, and it's been such a godsend! I take Cerazette, which has stopped my periods completely (although every now and then I stop for a couple of months to check that I will still have a period, and do). I used to have awful periods, and it would make my POTS symptoms worse around the time of my period. I thought I just had to put up with it, and didn't ask for a change in pill. I was only put on Cerazette when I was struggling hormonally at really wanting to have children but not being well enough to. I went to my nurse who listened and then suggested Cerazette to balance my hormones. I still get very broody occasionally, but the unexpected side effect of getting rid of all the period problems has been a real blessing.

Yes I have, especially early on in the illness when the sensations were so new and terrifying. You just think it's not possible to feel that ill and survive it, especially when it's a severe spell. I'm so sorry you're feeling so ill.

Hi Pam. I'm so sorry you're having such a hard time emotionally at the moment. Those times of looking back and seeing what we've missed out on are so incredibly hard. My life is nothing like I had planned, I got ill at aged 17, at a time when I had just started to enjoy the independence of soon becoming an adult. I had firm plans to become a child behavioural therapist, was keen to have children of my own in time, and was loving life doing exercise classes and going out socially with my friends. Then I became ill, and gradually I had to let go of each of those things and plans. I had some amazing luck though, and met my now husband in an online support group. I never got to have children, but when I married my husband I gained a wonderful step daughter who I can't imagine loving more if she was my own. My best friend is someone that I also met online, 6 years ago and we've barely gone a day of not catching up with eachother despite never having met eachother. I had to ditch my career dreams, but now have a job that I do from home laying down (no, I'm not a prostitute ) I taught myself a new skill and am now a freelance cartoonist, laying down to draw using a tablet and stylus. I really do believe that good things can come from bad situations, and I really hope that some good things can come along for you soon out of your illness too Pam. Those dreams and plans are so hard to let go of. I really hope that you get some good luck soon too. Thinking of you. x

Just thought of something else that I was wondering... what dosages are you all on? I've started on the lowest dose of 5mg/day, doubling to 10mg after four weeks, although I'm not sure if that is going to be 10mg in one dose, or two separate 5mg dosages. Then I'm due to see the consultant again to review dosages further.

This is interesting to me, as I actually walk a bit quicker now than I did before I was ill. It's because I feel so unsteady on my feet, that moving a bit quicker creates a bit of momentum that I feel more in control of. I think it's similar to when I'm going along in a car I feel better than if the car is stationary. Maybe it's because subconsciously I put the unsteady feeling down to the momentum then instead of it being me, so it somehow feels better. Is anyone else like this, or am I a freak? The problem that I have is if someone stops me when I'm walking, as the unsteadiness increases dramatically then. I can only walk very short distances, but definitely find it easier to go quicker than slowe.

Thanks everyone for your replies. I stayed propped up most of the time, but when I felt particularly ill I took my bp which was a little low, so figured I could shuffle down on the bed a little safely enough. I'm glad I got the BP monitor as it's been handy to make me feel a bit more in control and knowing what's going on.

Thanks so much everyone for your replies. Well I took my first dose today, and even though I'd been told about it, the scalp tingling was a bit of a surprise! I expected a mild sensation, but it was crazy! lol. In a strange way, I enjoyed it once I decided to view it as a new age massage! No major difference in symptoms yet, but I did definitely notice a slight improvement. I had a bad spell about two hours into it, which passed much quicker than usual. Other than that, I just felt a little less foggy for the morning, which although didn't rid me of my symptoms, was very welcome especially as I'm only on 5mg at the moment so it makes me wonder how much more of an improvement I could get when the dose is upped!