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When I am sitting I can forget about it when absorbed in work or with friends unless I am in a flare. But the minute I move I remember. Haven't had a day free from symptoms since diagnosis 16 months ago. Seem to stay in this grey area - not well but not awful.

Would you take Losartan OR Florinof. They seem to have a similar outcome from different actions.

Yes, I have wondered the same. I don't want to have to be on it forever but when i reduce the dose my symptoms return slightly. At the moment I only take .033mg - a third of a tablet. It seems to be the right does for me as it pushes my bp up too much otherwise. The other problem for me is it is causing slight depression - i think this is quite unusual. So like you Annaliese I want to know how easily people increase and decrease doses.

Jen - don't worry - your not alone - I think of myself as educated and find it difficult to follow. But I do appreciate the research that is being done - this one Issie - and try and follow, mostly members are respectful of this. Gradually we all learn more and more.

Good poll. it's an issue for alot of us I think. Like you Forevertired - my tachycardia is not so bad these days but i feel ill alot of the time. It is many faceted - I can't tell from one hour to the next how i will be and which symptoms will be next. I do get frustrated with the doctors. The other day my doctor raised her voice saying she can't help if i just explain my symptoms by saying"i don't feel well" but that's exactly it - i feel ill. Somehow it doesn't count unless i can be more specific.

Managed 10 minutes on exercise bike today. Yes! Think it's great that everyone has encouraged each other. I'm really pleased with my progress. Saw doc today and she says i will only get better when I rest? That approach has not helped for a year - so I am exercising now.

I have wondered about this too. Some days I can do more than others without tachycardia but my other symptoms which I put down to pots are still there and I can still feel quite ill. Was thinking about this over the weekend about how a lot of medication controls the hr but there are lots of other symptoms as a result of ANS dysfunction. But this seems to be the defining test. These days I can stand quite well but any exertion causes tachycardia - so is that pots?

Really good positive stuff. Totally agree with "I am going to feel terrible no matter where i am or what i am doing. So i might as well be doing something" I was told to take it easy and not to work so much and to see a psychologist for symptom management but that would seem like focusing on my problems more. While i am busy at work, which i really enjoy, i forget about pots. This seems the best therapy.

Hi sorry you seem so uncertain about your condition - it takes a while to get what is normal for you and whether it is similar to anyone else. If it helps I get chest pain - and not just on exertion - often it will go off if I lie down but not always and no medication seems to help it. I never feel quite satisfied that there isn't a reason for it but all the docs say they don't know what causes it. So long as you get all the tests to check it is not something that needs attention. My chest pain eased with Fludrocortisone but it has returned and it doesn't always seem to be related to HR. My bp fluctuates and i can almost feel it and know when it is higher than i would like - however a doctor would probably think it was well within normal. Sometimes our symptoms do not seem to have much to do with bp or hr. Hope this helps.

Sorry you are going through this and your experiences are not being acknowledged. It is very upsetting. Yes, i get constant chest pain, have started to get short of breath and nothing corresponds everytime with the monitor. It's random. Sometimes i feel very ill and this doesn't correspond to any great deviations with bp or hr. Sometimes it does.

Whats the test for eds. It is suspected but not been tested properly. Seems like this is another thing I need to get sorted. Thanks for bringing this up Rissy.

Hope the bio feedback goes well. Do you mind me asking is the beighton test the basic test for EDS? I think I probably have it but have not been officially tested. Thanks

Jangle, Have you any knowledge of HIITs - High Intensity Interval Training - there's been info about it on tv and there was a post last week with another member who has been using a version of it called Tabata. However whether it would have any impact on POTS i don't know. ?

I asked for copies of my medical notes and it contained all the monitor recordings. I have also been tested recently in London and have asked for all those records so that i have all my info centrally with me. But you are right - cardios are looking for irregular rhythms - so long as your hr rises and falls in a smooth sequence they do not seem bothered by how high the hr goes. I had a tape on during a terrible episode but the cardio only noted my hr went a little high. The tape show how ill I felt.

Goodness I had not connected the two things up. Sorry you are suffering this. I have the same - really thin or worn enamel and and had to have an extraction 3 weeks ago as the tooth had become so wobbly. No decay, gums ok, but lack of enamel. Also get terrible mouth ulcers, sometimes a few together but hardly ever free from them. I possibly have eds 3 but not been tested yet. Interesting connection I hadn't picked up on.

Hi Puppylove, I think it is an easy label to say it is psychological. The cause is physiological as far as I am concerned so hang on to what you believe. Personally I don't think its helpful to think it has a psychological root if it hasn't. However there are thing we can do that help to keep the system as calm as possible like meditation etc. I had terrible problems before christmas and within a hour of Fludrocortisne it started to lift so I know that is the case. Claire, I too have wondered about PTSD - a psych doc friend said it seemed very similar. As mentioned above the trauma I went through before christmas was unbearable and it left a scar and imprint on me.

Thanks Kim, Just seem to be back in same position as a few months ago and looking for back up. I keep having the same problem of being put on drugs and then being tested which of course turns out negative - then it looks like you are neurotic - which I am not. I keep banging on about this and without doubt was involved in earlier posts but it was the chest pain that followed the svt's that was horrible but made me curious to see if i was alone. I have made a separate post specifically about this now. Curious about your MVP - how was this diagnosed? I have read a bit about it in my search for answers and can't quite understand it but it is strongly connected with dysautonomia.

In a flare at the moment, managed to get prof to bring forward my appointment to Monday. I have constant chest pain and now my adrenaline is on the rise and I am finding it difficult to cope. My chest pain has always been dismissed as " we just dont know" A couple of member have said they don't get chest pain with svt's so i want to check with others. Does anyone else get svt's and how long do they last? Do they cause chest pain and for how long? Do you know why? I really need to know whether to press about this at the appointment. Thank you.

Thanks Puppylove, Do you get pain after an SVT. Not sure whether this is a normal response to one but I do and it lasts for hours.

First hour of the day I am always good, gradually go down hill with the day.

Have now figured out that I get a few different types of disturbances of my HR: SVT - hr jumps suddenly 180-220 bpm and i have terrible chest pain and pressure afterwards, sometimes for hours. Surges - feel like they are adrenaline driven and hr climbs steadily up. Sometimes they are short 20 beat increases and go up and down despite sitting still or when they are bad 120bpm is normal for me but can be 170bpm. I feel very ill while they are happening. Lost all power - Suddenly feel weak / faint - assume bp has dropped - and hr climbs steadily up over 100. This has happened as a reaction to medication and it happened tonight after a sip of wine. Leaves me with sore chest and pressure. Slow hr - can be uncomfortable and cause chest pain. Irregular HR - no real symptoms but can feel odd. Exercise -HR increase with exercise or climbing stairs 140bpm - although this is faster than normal it does not cause pain afterwards. I would post as a poll but can't work out how to do it. Would be really interested to know if anyone else experiences any of these or all of these.

Rissy, My systolic falls but dystolic rises on standing So i filled in rises because it is more on the high side. Also i often have to eat to calm my symptoms eg in the middle of the night even though i don't want to and have put on weight but only a few pounds. This drops of each time i go through a bad patch - i seem to lose weight overnight.

Serbo, my rate is ususally between 50-60 and they do not want to prescribe bb. Rissy, I was diagnosed with narrow complex tachcardia and as they were short lived there was no action needed. Is this an adequate explanation and investigation? I get irregular rhythms as well but no one seems to have picked up or commented on this. Also well done for getting all you diagnosis in the uk. Struggling to get tested for anything. How did you do it.?

Just wondered if anyone else has a problem with B complex. Seems a good supplement to take but there is something in it that causes an awful increase in symptoms with chest pressure and pain, very slow hr, svt and just not feeling right, again. I am quite certain it's that so won't take it again but does anyone know the likely B vit culprit.

Hi Rich, Really sorry you are feeling so poorly. If it helps - when i get a virus even mildy, i react very badly and although i never normally suffer with dizziness i always become dizzy and weak and pots is much worse. Your hr is high - have you contacted a doctor - sounds like you need to get your temperature down, docs normally suggest paracetomol for this. Also lots of vit c. Last time i had a productive virus i took antibiotics and got better quite quickly. Hope this helps.