AmberK

Thanks for your replies. Is it that the people it helps, are the ones with very low blood pressure all of the time? My BP is "normal" most of the time, with frequent sudden drops. It does sound important to try not to be supine too much, so thank you for the advice. I will try and sit propped up as much as possible. I've bought a BP monitor so that I can keep an eye on what's happening. Thanks again.

About to begin Midodrine, I'm wondering what kind of improvement I can expect? Has anyone had any dramatic improvement from taking it?

Hi everyone, I've just been prescribed Midodrine, and have a couple of questions if any of you wouldn't mind sparing a few minutes to help me please... 1) My concern is that I keep reading that you have to be careful when supine if you're taking it, but I lay down a lot because the symptoms are almost constant. Neither my GP nor consultant have warned me about this, so I figured you would be the best people to advise me about it. I try and lay propped up as much as possible, as I'm aware of how excessive laying down can worsen symptoms, but not laying down at all during the day just isn't an option. 2) The other thing that I wanted to ask, is could anyone tell me basically how Midodrine works please? I've read quite a bit about it but medical terms are used so often in these articles, that most of it has gone in one ear and out the other! Can anyone explain it to me in simple terms please? Many thanks, Amber (Edited to remove lots of unnecessary gabble)

Oh, one more thing... How long should it take to see some improvement with Labetalol? Thanks.

Thanks all. HyperPOTS8, I haven't found a summary article, but am making my way through a longer version, thanks. It's been very interesting reading so far.

Arizona Girl, thank you so much! I really haven't been told much of what's going on, so your post has been really informative and helpful, thank you. I did buy a pulse oximeter, and have been doing my pulse with that, but haven't got a bp monitor. The GP took my pulse yesterday after a few minutes resting, and it was 88, a bit different from the 105 stated as my resting rate on the test! I've found it to be between 80 and 85 most days. It makes sense what you're saying about the bp raising and then a sudden drop and faint when we can't maintain the high bp anymore. A few minutes after I fainted yesterday at the doctors appointment, they took my bp and it was higher than my usual reading, which confused me, until they explained the bp often does that after a faint as you're in recovery again. Just one question, if you don't mind me taking advantage of your help. You said I also have some form of syncope or hypotension not just pots, but I assumed the syncope was part of the pots? Syncope is one of my main symptoms so it's why I was being investigated for pots. Is syncope a separate condition then? Thanks again Arizona Girl, I really appreciate your post.

A brief update for anyone that hasn't seen my previous posts: After almost 19 years ill, and finally getting somewhere when investigated for POTS, I had a tilt table test, but no resting heart rate was taken. My pulse went up to 126 in the first 10 minutes, and I fainted at 32 minutes, but it was concluded as "not classic POTS" because the heart rate didn't raise 30 bpm or more (as the "resting" rate was taken with only seconds horizontal). The consultant has decided to treat me for POTS anyway, and after going to the GP yesterday (and waiting in a hot waiting room, -resulting in another faint) I have been prescribed Labetalol. I used to have asthma, so the GP is reluctant to start me on anything other than a very low dose (50mg twice a day), and is also concerned that a beta blocker may lower my blood pressure instead of just my heart rate, which would be unfavourable. I am so relieved that even though it looks like still a long road ahead for a firm diagnosis (I've written to my consultant about my concerns over the lack of resting heart rate taken, so we will see what he says), I am at least being treated for the thing that it's looking very likely to be! So my question is, has anyone had any luck with Labetalol? Has it been effective for any of you?

Excellent tips, thanks everyone

That does make sense with the heels/wedges, Wendy! Thanks! Thanks for yours too, Peregrine, we're building up a good long list now. One that I forgot to mention is that my husband bought a dining trolley very cheaply from a local auction, and it's been an absolute godsend. If I'm making something like sandwiches, I just load the trolley up with everything that I need, then wheel it into the lounge to sit comfortably to make it, then wheel it back to unload again.

Thanks for the reply, Wendy, and for the helpful tips. Could you please explain this one in a little more depth: "-wear wedge high heels, even around the house, if the compression stockings aren't strong enough at certain times of day". I always tend to avoid any heels, as assumed they would make me feel less steady and worsen the dizziness. Do heels actually help to stop pooling? If so, what's the process that causes them to help? I would be fascinated to hear more about this if you wouldn't mind sharing. In the meantime, I'd also love to hear more tips from anyone else!

I thought it might be helpful to share each of our useful tips on managing day to day life with POTS or POTS-type illnesses. These are my helpful tips that I've found useful over the years... * washing line coat hanger hooks to hang stuff on the line without having to stand for long (if anyone isn't sure what I mean, just ask and I will provide links) * knee pads to get around the house on bad days without killing my knees *memory foam kneeler, to do the washing up or those other usual standing tasks, without having to stand. *grab rails around the house for those sudden dizzy spells *microwave steamers, pasta cookers, egg boilers, etc to cook things more safely when dizzy than using the cooker or hob There's just a few to start us off, please all add your own, as I'm sure they'll be of some help to everyone

Thank you all I will definitely push for a second opinion.

Thanks so much for your replies. My resting heart rate is usually around 80 bpm, and during the test I was laying down for seconds rather than minutes. I was miffed at the time, but assumed the nurse knew what she was doing and so didn't mention it. I get the impression that the test had been done very rarely, due to the numerous problems I noted: I wasn't told to prepare in any way for the test (no fasting, for example), my legs weren't strapped and the nurse kept getting irriated when my legs buckled, which I assume brought the blood back up every time I moved, and when I fainted the nurse apparently set the alarm off and I came round to a room absolutely packed with panicking nurses! I would have thought they would be prepared for a faint on a TTT It's so frustrating, as after an almost 19 year wait to find out what's wrong with me, I feel like we may be finally at the answer,... but now I'm left at the edge of a possible diagnosis, with people that don't seem to know much about the condition.

Thank you Puppylove and Katybug. Puppylove, that was as I understood it. Katybug, I hadn't heard that it has to be for a period of 10 minutes or more, do you know where I can find more info' about that please? I have no idea if mine was for more than 10 minutes, just that it was within the first 10 minutes.

Sorry, that second from last line should read "the raise in heart rate" not "the raise in BP".

Hi, I posted here a couple of months ago but can't seem to find my thread so am starting a new one. Basically, I will have been ill for 19 years this August, and have been diagnosed with M.E. Whilst trying to find what's causing my main and most debilitating symptoms which don't fit into the "M.E" category, I've been repeatedly diagnosed with anxiety. Until now. I had a TTT but no resting heart rate was taken. My legs weren't strapped in and as my muscles are weak my knees kept buckling during the test. I fainted at 32 minutes into the test, and a week later was told that it didn't look like "classic POTS". Today, after a month of waiting since the TTT, I finally got my results. I assume that the number they use for my "resting" heart rate is from sometime in the period when I was hooked up to monitors whilst sitting up, then told to lay down, then was immediately tilted, chatting with the nurse throughout until the moment of tilt... My results: "Resting" heart rate: 105 bpm. 9 minutes into the test: 126 bpm. When I fainted at 32 minutes, my BP "significantly" dropped, but no measurement was given. The consultant has stated to my Dr that this could be "some mild form of something between the spectrum of POTS and innappropriate sinus tachycardia" but isn't classic POTS due to the raise in BP not being 30 bpm or more. Am I right in thinking that even without the proper resting heart rate, this should have been a diagnosis of POTS? Any advice would be greatly appreciated.

Aha, thank you very much Chaos.

I don't know what my HR readings were on the TTT, just know that it was high throughout but I was told that one of the reasons that my test was inconclusive is because I didn't faint until 32 minutes. This, together with repeatedly reading that the diagnostic criteria for POTS is a 30 BPM increase or a HR over 120 within the first 10 minutes of the test makes me wonder why any TTT is longer than 10 minutes. Can anyone explain this please, as I'm very confused?

mama_destiny I am so sorry for what you're going through but at the same time it's comforting to know that someone else is going through the same, so I hope that you get comfort from my situation too, and that it makes you feel less alone with it. I had my TTT a couple of weeks ago and am facing exactly the same situation (I wrote about it on the forum here: http://forums.dinet.org/index.php?/topic/20414-tilt-table-test/ The only difference, is that I haven't been told any of my readings, just been told that my HR was high throughout. Like you, I didn't have a resting heart rate taken. I'm still deciding what to do about mine, but whatever else I do I'm pretty sure I will voice my concerns to my doctor. I have the same reluctance as you that why would they listen to me when they are the 'experts'. Much of the information about POTS and the tilt table procedures online seem to be American sites, as does this forum. I live in the UK and feel that if I take in any information from American sites I will simply be told that it's different in the UK. I know this would be rubbish though, as surely if they are diagnosing people with the same illness, the test should be the same?! I'm very reluctant to go through the awful experience of the TTT again, but just don't think that I can let this go, when their incompetence seems glaringly obvious. Thinking of you, and I hope that my situation helps you feel less alone with this.

Thanks so much everyone, this forum keeps me sane (well, as sane as I've ever been ). I really appreciate the replies.

Thanks Kimbelgirl and AllAboutPeace. Kimbellgirl, I agree that it's not all about the label. However, if I can find out what is wrong with my body, I can finally begin to understand the mechanisms behind what's causing it. It's looking like it is still likely to be POTS, and I haven't been given a "no", but I'm not sure whether to voice my concerns about the way the test was conducted, as they may see me as a problem patient. The symptoms can be so frightening sometimes, that if I could find out what happens to my body inside when I'm feeling this way, and indeed why, then it would go a long way to helping. Obviously, the main thing is getting improvement, but that would be a lot easier to do if I knew what it was that's causing it AllAboutPeace, I'm so pleased to hear you say that. I have wondered over this weekend if maybe there is another way of doing the TTT and by somehow guessing the resting heart rate The fact that the nurse freaked out so much when I fainted, I think shows how rarely they do the test there. I'm glad that I haven't been told that it's definitely not POTS, but to be in the same uncertain position after going through all of that, has baffled me a bit. Still, one thing they do have now is my body was fully monitored while I fainted and they can see it for themselves, which is a step forward than I've had before, and hopefully will mean that I wont be pushed back towards an anxiety diagnosis again.

Thanks Anoj. Well, after they kept changing when I would finally get my results, I eventually received them yesterday, although it's left me more confused than ever. I was told it wasn't "classic POTS" as although my heart rate was high, it was pretty high throughout, so it didn't get the 30+ points needed for a diagnosis. However, as they didn't take a resting heart rate, I'm baffled as to what they compared it with, unless they are comparing it from the first minute of the test but I was upright then anyway! Has anyone else had a TTT without the laying down bit first? Can it still be accurate without it? I've waited so long for this test, and the consultant agreed that my symptoms fit into POTS accurately, but he said that without the 30+ points I can't get the diagnosis, and also because I fainted after the initial 10 minute slot. Umm, if only the initial 10 minutes count in the test, why the **** did I put my body through all of that after the first 10 minutes?!! I am very angry as I don't feel the test was done properly, but also very confused as it really looked like after 18 years of waiting, I was finally about to find out what was wrong with me all this time. Now I've been told that "It might be POTS, it might not." The uncertainty feels agonising after this long, and finally thought it was about to all become clear. He said he is going to try me on some medications (I don't know if they're medications for POTS, but I assume so. He didn't think to tell me what medications they are, and as I haven't been able to speak to him directly, I'm left with lots of unanswered questions) that are likely to have side effects. I'm pleased they will actually be trying something, but am so gutted that I've been told it may or may not be POTS, as if it was, at least I could finally get my head around what is happening to my body and start to understand the mechanisms of it all if nothing else. I'm sorry that this post is a negative one. I'm rarely negative, but today I feel so gutted and shocked after having the TTT, it being horrendous and my body went through ****, the nurses told me after I fainted that it looked like POTS and it looked like my 18 years+ wait was finally over, and then after almost a further 2 week wait after the TTT, I'm basically told they still don't know. I feel like the stuffing has been knocked out of me.

I don't know about POTS, but I'm certainly going potty with the waiting! I didn't hear from the hospital as promised, so I phoned today and have now been told that it's still in his 'in' tray, and I will hopefully get a diagnosis or some sort of answer later this week. This forum is really helping during the wait though, it reminds me that no matter whether it turns out to be POTS or not, I'm not alone

Hilbiligrl, I'm at present still waiting on a diagnosis (any day now! ) but just wanted to reach out to you, as I know this feeling so well. It will be 19 years for me this August, and I have the same feelings of is this forever? I haven't had any periods of remission longer than 7 days during this time, so I'm sorry that I haven't anything helpful to give you, but just wanted to let you know that you're not alone *hug* On the plus side, you look very young in your picture for your age

Endure, you have the right name! You poor thing, I was absolutely horrified reading that, and I'm in awe of your bravery. I'm so glad that that horrible bit is over, and really hope that you get some helpful results. I'm shocked that they hadn't already been informed with your medical records from your doctor, it shouldn't be up to you to let them know what might kill you,- THEY are the medical professionals and should make it their business to keep you safe! "Grrrr"ing on your behalf! x