Preparing To See First Cardiologist

[Batik]

I'm finally getting to see a local cardiologist on Thursday next week. He's a general cardiologist, not an electro-physiologist, and quite frankly I'm lucky to be seeing anyone at all, considering that some other random cardiologist cancelled my first referral, without telling me, based on the results of my 24 hour ECG (Holter monitor). The woman from the complaints department who got me the appointment (I had to go through her as they'd been messing me around with the waiting list) said that she's spoken to him and he's aware of POTS.

Before anything else, please remember that this is in Scotland, on the NHS. If you're in America, don't assume that our medical system works the same way as yours. Also the main point of this visit is not to get a POTS diagnosis necessarily, but to get referred to Professor Julia Newton in Newcastle, who is an expert in both POTS and ME/CFS. Unfortunately, Scottish referral rules mean that I can't just be referred to a specialist outwith my area by my GP, I have to be referred by a specialist. If I turn out not to have POTS but some other form of dysautonomia, she's the one to see.

I've got severe ME/CFS, Auditory Processing Disorder, memory/concentration problems, and will be generally exhausted and have trouble remembering what to say. So I'll be turning up with notes, which doctors don't tend to warm to, but it's better than forgetting everything. I'll be coming with a friend, who will push the wheelchair and take notes. I need to find some info on POTS to show her beforehand too.

Problem 1 is this wretched 24 hour ECG. I think I may have a mast cell problem, but no one around here has heard of it let alone can tell me how it will affect tests, so I went off my antihistamines in advance, and also stopped eating salt that day and was less careful than usual about meal timing and avoiding sugar. The result was that my resting heart rate was much higher than usual, 90 instead of the usual 60s, with lots of heart thudding that day, and when I stood up, not long after a nap, I lasted two minutes before blacking out and falling over. At that point my HR had gone up by 26. Whoever looked through my test had just been told "30 bpm rise", not the full "within ten minutes and from lying to standing", so didn't realise that a) it was from sitting to standing, and I would no doubt have gone up higher than 26 bpm if I'd managed to stay on my feet, and c) blacking out and falling over is a sign of problems in this area.

I've taken plenty of readings at home, and while my HR doesn't always go up by 30 within ten min, or takes a bit longer to do so, it does so on a regular basis. A lot of those tests are from sitting to standing through necessity, and I am incapable of staying completely still when I stand up (if nothing else, the itching that starts up a few minutes in makes it impossible to stay still), so that's probably affecting the test. Plus I never even try to do the test on days when I feel really bad, it's not possibly for me to manage all the getting out of bed and faffing around with BP monitors.

I don't know if a cardiologist will be interested in my home readings. My GP wasn't, when she was telling me about how I hadn't shown up as POTS on that test. I'm also worried this will turn into an argument about how to diagnose POTS!

So my first question: is there a short, simple handout I can print out which explains about POTS, and makes it clear that it is *not* something you can simply rule out by seeing how much someone's HR goes up from sitting to standing within two minutes. Nor do I want them thinking it's something you can test by merely taking my HR when I'm sitting down and then immediately after standing. As for TTTs, I'm nervous about having that done locally, since they're not POTS experts, so I'm not sure what to do if they offer that.

Next, advice about bringing in home readings? When I wrote to Prof Newton, I included the following:

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Here is what is more typical for me, using a blood pressure monitor recommended by the British Heart Foundation.

Lying down - heart rate usually in 60s, sometimes 50s or 70s.

Sitting - heart rate usually 70s, sometimes 60s or 80s.

Standing - anywhere up to 120s.

Heart rate changes from lying to standing, various times in the morning, not standing up for long:

11 Feb - 63 to 101

17 Feb - 55 to 95

21 Feb - 62 to 96

8 March - 63 to 103

9 March - 64 to 98

10 March - 67 to 101

When I've managed to stay more or less upright for longer (not this week, as I'm getting a lot of pain in my feet at the moment), it's dropped a bit after that, and then taken anywhere from 2 to 15 min to rise again, although sometimes it's just steadily risen, sometimes going up to 123 or so. My blood pressure usually goes all over the place after I stand up, e.g. from 109/62 to 142/116 at 4 min and then down again. Usually my pulse pressure goes both up (e.g. to about 132/70) and down (e.g. to 90/75) after standing. I also tend to get quite low blood pressure, sometimes down to 75/40, though I've had higher readings such as 167/103 and 152/62. This is all since going on the antihistamines and some of it since going on the other meds - it was worse before this, but I wasn't monitoring it. I've had quite a lot of collapses, numerous blackouts or whiteouts, and a few times where I think I actually lost consciousness during a fall.

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I decided that was better than waving graphs about or indundating them with data. Should I just print that out to show the cardiologist?

Next question: which symptoms do I mention? The problem is that I have umpteen symptoms due to the ME, and indeed umpteen diagnoses by now. A lot of doctors glaze over when they have an ME patient and wave off everything as "it's probably just the ME". Some of my symptoms will be relevant to POTS, some won't. And do I mention the possibility of EDS, including a cousin who has it (and who also has POTS)?

Actually, by this point it's probably easier to just copy in the whole letter I wrote, especially since I have my support worker due in a few minutes.

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Dear Professor Newton,

I am writing to you about the referral my GP, Dr [name], has been trying to organise on my behalf. I understand that you have communicated with her about the 24 hour ECG I had three months ago, and told her that in your opinion it does not look like POTS.

Unfortunately, I was not told the results of the ECG until a few days ago. It wasn't at all typical for me. Dr [name] said that my resting heart rate on that day was 90, so that when it went up to 116 before I collapsed, this was less than the 30bpm rise necessary to suggest POTS. (Although isn't that meant to be from lying down to standing? I was going from sitting to standing, quite slowly in order to reduce dizziness, as I'd just woken up from a nap with my heart pounding and feeling overheated.) As well as all the times my heart rate has been checked by doctors or nurses, I've been keeping an eye on my heart rate for a while now, and my heart rate when I'm lying down is mostly in the 60s, though occasionally 50s or 70s. The other issue is that I can't stand up for long at all, and when I do stand, I have to lean against something, move around and clench my leg muscles in order to keep upright, right from the start. On the day of the ECG, I blacked out and fell over after two minutes of standing propped up. Judging from other times, my heart rate would have continued to rise if I'd been able to stay on my feet.

This mix-up is possibly my fault! I've been experiencing these symptoms particularly markedly for a year now, since I had gallbladder surgery, and since the referral process takes a long time, I've been put on quite a bit of medication by now. I was put on two antihistamines (cetirizine and alimemazine) for the dermographism in August. A few months later I had a particularly bad episode one day after lunch. As well as the symptoms I frequently experience from standing up or eating - dizziness, heart racing, breathing problems, pouring with sweat, feeling hot, painful cold extremities, tinnitus, nausea, abdominal pain, itching, flushing, swelling, shaking, blacking out (not all of them every time, of course) - I also developed a rash over my upper body, and the itching was more severe and went on for days. I don't have any food allergies. So at that point I was put on cimetidine, and recently omeprazole was added for stomach pain.

Anyway, I noticed that these symptoms, including problems I get all the time with temperature fluctuation, vulvodynia, dizziness, GI problems, nausea and the like, were markedly improved on these medications. Nowhere near gone, but enough of an improvement to notice, and my heart rate and blood pressure were also varying less. No one was able to discuss why this might be with me, and I didn't want the meds to mask my symptoms for the ECG, so I went off them beforehand. I also didn't get as much salt as usual, and was a bit less careful about eating - lunch was an hour late and I had a sweet dessert. I honestly didn't mean to mess things up. I'd noticed that my heart was thudding a lot that day, but hadn't realised it was going that fast, and chalked it up to being exhausted from the effort of going to the hospital, as I am almost entirely housebound from the ME and have problems with sensory overload in busy places.

Here is what is more typical for me, using a blood pressure monitor recommended by the British Heart Foundation.

Lying down - heart rate usually in 60s, sometimes 50s or 70s.

Sitting - heart rate usually 70s, sometimes 60s or 80s.

Standing - anywhere up to 120s.

Heart rate changes from lying to standing, various times in the morning, not standing up for long:

11 Feb - 63 to 101

17 Feb - 55 to 95

21 Feb - 62 to 96

8 March - 63 to 103

9 March - 64 to 98

10 March - 67 to 101

When I've managed to stay more or less upright for longer (not this week, as I'm getting a lot of pain in my feet at the moment), it's dropped a bit after that, and then taken anywhere from 2 to 15 min to rise again, although sometimes it's just steadily risen, sometimes going up to 123 or so. My blood pressure usually goes all over the place after I stand up, e.g. from 109/62 to 142/116 at 4 min and then down again. Usually my pulse pressure goes both up (e.g. to about 132/70) and down (e.g. to 90/75) after standing. I also tend to get quite low blood pressure, sometimes down to 75/40, though I've had higher readings such as 167/103 and 152/62. This is all since going on the antihistamines and some of it since going on the other meds - it was worse before this, but I wasn't monitoring it. I've had quite a lot of collapses, numerous blackouts or whiteouts, and a few times where I think I actually lost consciousness during a fall.

There's also a family history of dysautonomia, for instance my cousin who has EDS and tachycardia. My GP has diagnosed me with fibromyalgia, and I have assorted tendon and joint problems too, possible slight hypermobility, but I've not seen a rheumatologist yet. Also random things like not responding properly to local anaesthetic, flat feet, and eye problems, which I hear may be related. Some friends have suggested that I might have a mast cell problem, especially since I have an increasing number of small brown markings over my upper body, and I've wondered about that myself, particularly since I've been diagnosed with dermographism, interstitial cystitis and so forth, and am reacting strongly to the antihistamines and H2 blockers.

At the moment it feels like I'm still not getting anywhere with referrals, particularly after the strange results of this ECG, which do not appear to reflect my regular monitoring. It feels like with the particular mix of symptoms going on, no one around here can work out what to do with me. For instance, the antihistamines have almost entirely stopped the vulvodynia, and my gynaecologist is very happy about this but has no idea why it's happening. I've been taken to A&E after collapsing several times by now, and they just don't know what to do with me. I understand that your range of expertise covers many of these fields, and therefore I would really appreciate being able to attend your clinic. As I'm in Scotland, the referral to your clinic has to be done by a specialist and not a GP. I've had ME for sixteen years now, the diagnosis was long ago, and I'm not under the care of a local ME clinic at this time, so my GP seems to think that this will not be a viable path for getting referred to your clinic. My GP is now talking about trying to refer me to somewhere because of the collapsing, but the nearest Falls and Syncope clinic is your clinic.

Do you think it would be useful for the referral process to do a longer ECG, with advice on how to handle medication that affects my heart rate, or an event monitor? Are there any other tests you can recommend to assess my blood pressure and heart rate, or indeed anything else, that would more accurately reflect what's happening? They haven't run a 24 hour blood pressure test on me yet. We weren't sure whether it would show up anything useful, as the changes I experience in blood pressure are relatively rapid. Is there anything else you can think of which would get this moving again?

Kind regards

[my name]

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Which bits of that should I mention when I go to the cardiologist? I usually make two copies of my notes, one in large print for me to refer to (and even so, my eyes skip a lot, it's best to keep it simple), and one in normal print for the doctor to read (and if there's too much, they won't bother). And in case anyone is confused, no, I will not be writing to this cardiologist, I will be having a consultation with him, which I will be bringing notes to.

[Hope]

I'm sure you will get a lot of responses on this that will be of more help to you. I just want to say on the Dinet home page there is a pamphlet, but I think it's a little too vague for your purposes. But on the same home page you can find detailed info to print out that might help. I have printed a lot off of that to give to people. Keep us posted. I'm starting to follow all the CFS information I can since I feel my POTS is a symptom of my CFS. I didn't realize CFS was so damaging and progressive. I always thought it was just a matter of me being more tired than others until I was diagnosed with POTS and I'm finding out that many of my symptoms are probably coming from the CFS and the POTS is more of another symptom of it.

I hope you will find the answers you need.

[Batik]

Yes, a lot of people don't realise how serious ME is. Considering that it's one of the most disabling medical conditions in existence, and that it knocks twenty years off your life expectancy, this is something of a problem.

I'm hunting for that leaflet you mentioned, but so far all I've found is a PDF file which isn't displaying properly. Do you have any links you could recommend? Thanks.

[Batik]

Right now I drink electrolyte drink throughout the day. It's just potassium and sodium in water, and I feel a lot better when I do it. I also salt my food heavily. Is it worth stopping this a day or so before I see the cardiologist?

[corina]

I think it depends on whether you will be tested the same day. If so I would stop as I'd want the results to be as clean as possible. OI not I would take them as you might get in trouble when you don't take them. Just a thought of course! You can mention it to your cardio and see what s/he thinks. Good luck on your appointment Batik! I hope you will be getting the answers you need!

[Batik]

I think I'll stop, it's not the end of the world and it won't mess me around as much as stopping the antihistamines does. What kinds of tests are you talking about? I assume he'll take my BR, HR, listen to my chest and so forth.

Actually, what sort of physical exam is usual for a first cardiology appointment? I'm concerned about how much I'll have to undress, partly for personal reasons, partly because it's physically difficult and exhausting to undress and then I get nastily chilled.

[corina]

I'm in The Netherlands, in a first time visit the cardio does a heart film and asks for weight and length, he listens to your heart and asks lots of questions (when do you start feeling bad, what were you doing, was it nighttime/daytime etc). I had a bikingtest but needed to scheduled for that at another time, I had a stress echo (got adrenaline via IV) at a different appointment and in the end I had a heartcath (which showed low pressure in my left heart chamber). Hope this helps Batik!

[Batik]

Thank you, that does give me some idea. Do you mean my weight and height, or my heart's measurements? I'm not quite sure what a heart film is either, do you mean an ECG?

I am discovering that water without salt in it now tastes really weird and is strangely unsatisfying. I'm absolutely freezing now I've reduced the salt, and if I could manage stripping off enough to get the BP cuff onto my upper arm, I wonder what it would show.

[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!

[Batik]

I'm thinking I'd be better having the TTT in Newcastle, assuming the referral goes well. If they want to do one here, would I be OK to ask something like, "I understand you need to keep the test going for longer to check for Neurally Mediated Hypotension, is that something you can diagnose?"

I've printed out the STARS leaflet on POTS to give to the support worker who is coming with (I hugged her with relief when she told me. Of course, this means two or three days where I don't get washed or fed will be coming up in the next few weeks.) but I'm not planning to give it to the specialist. Under the "treatment" section, it just has CBT. I really, really don't want to get sent down the "it's all in your head, you just need to think the way we tell you" route. It does enough damage with ME patients already.

*looks up Papworth* Cambridge? Ahahahahaha no.

My memory is appalling due to the ME - remind me what happened with your TTTs?

[AmberK]

I wanted to ask further things, like with the NMH, but the U.S seem to be much more clued up about POTS generally than the U.K. Having said that though, Papworth is the leading heart hospital in England and they really were fab. All I've been told so far is that it's POTS. I suspect NCS because on both TTTs, I had a very sudden and dramatic drop in blood pressure, but I've decided to wait until my next appointment with the Cardiologist to ask about that, rather than risk them thinking I'm bossing them around and trying to self diagnose. I've always found that a tricky balance, with the M.E too.

Don't worry about the CBT, as with POTS the TTT (all these acronyms! ) actually shows what's happening to your body, and I've found that it's taken more seriously. CBT for POTS isn't to tell you it's all in your head, but instead to help you cope with the dramatic changes to your life, as it obviously effects patients emotionally as well as physically.

In my first cardiology appointment, I had an ECG (they just got me to lift my top up. I didn't have to remove any clothes) and then consultation with the cardiologist, nothing else.

In answer to your question about my TTT, I originally had one in Norwich, and several things weren't done properly: I had no resting HR taken, which is a bit of an essential! My knees weren't strapped in, and as I have M.E and weak muscles, my knees repeatedly buckled through the test. They didn't know how to work the tilt bed, so when I fainted, I kept regaining and losing consciousness again as I was still tilted. The nurse panicked, and hit the alarm, resulting in me finally regaining consciousness in a room full of flapping nurses Please don't worry though. My second TTT couldn't have been more different, and I was looked after really well.

[Batik]

I saw the cardiologist today, and it went reasonably well, I think. The TTT has been booked for Tuesday at the Western General in Edinburgh. I've been told to stop salt on Sunday, take my meds as usual ("because I doubt they'll have an effect" - I didn't even try to go into possible mast cell stuff), and stop eating and drinking, I think 12 hours in advance.

Any advice? Bear in mind that I definitely have severe ME/CFS, that I have a friend coming with, and that I don't mind pushing myself into a relapse if it means diagnosis and referral. Should I just run myself into the ground over the next four days? I messed up my Holter monitor by making myself so ill that I fell over before my HR could climb more than 26bpm, but am I right in thinking that the worse I am, the more it'll show things up? I could probably knock myself out reasonably well by exercise, and I'm not sleeping well at the moment anyway.

Next problem: how do you stay warm during a TTT? I run cold with occasional hot flushes (they handed me a nice cool wad of wet paper when that happened today, it was surprisingly helpful), and I mean really cold. People are suggesting a loose cotton short-sleeved top and jogging bottoms over on the Facebook POTS group, and that sounds perfectly reasonable, but unless something surprising happens, that is likely to leave me shaking with cold. Today, for instance, I wore cord a strappy top, a long-sleeved cotton top, a lightweight sweater, a very heavy ankle-length cardigan, and a big scarf, plus cord trousers, two pairs of socks (one very thick), and heavy winter boots, and I still needed fingerless gloves. But then if I wrap myself up in lots of layers, can they get at me to put the equipment on? And what if I start overheating? Or will that actually help show up my symptoms for the test?

[AmberK]

First of all, I'm glad your appointment went well and that you have a TTT booked It's a very good sign that they've told you to stop eating and drinking 12 hours in advance,- my second test I was told to do that, but the first didn't tell me to prepare in any way at all, so it sounds like they have some idea of what they're doing.

I can relate to the ME/CFS problems, so my main advice is to definitely make sure you're strapped at the knees so your legs don't buckle with weakness. I wouldn't bother running yourself into the ground beforehand. I rested up, as I was concerned about fainting before even getting on the test. It still showed plenty up, despite being well rested.

I have the opposite problem re: heat, so I can't really help with that. They will need access to your chest and arms for the monitor. In my first test I wore a hospital gown over trousers, and in my second a loose top over trousers. I wore black pyjama bottoms, as it's important to wear comfortable clothing. Also something like flat pumps or trainers, as you keep your shoes on for the test.

[Batik]

I just spoke to the department. Not sounding terribly promising. The test lasts an hour, which I assume includes the lying down part and indeed quite a while to set everything up. I explained about being cold, and she said that they have blankets, but it sounds like they're the thin cotton hospital blankets which I find to be totally useless. Oh well, at least they're warned. She also read out the info about the test, and said that they check my BP and HR every five minutes. That rang an alarm bell. I thought they were meant to check it continuously? Possibly they check the HR continuously and the BP every five minutes? I know that Julia Newton has said somewhere that you need to do continuous fingertip monitoring for ME patients, and I'm wondering whether it's worth digging that out, printing it out and bringing it with me.

[lejones1]

I wouldn't worry, Batik, everything you've said sounds typical. My test lasted an hour - 15 minutes lying down, 45 up. That's the max you'll ever get for a TTT. Even if you don't get 45, I wouldn't worry. I have POTS and NMH (diagnosed at the very end of my test) and they've been treated exactly the same. My cardiologist pretty much said that with the POTS diagnosis the NMH is secondary. I don't have usually issues with hypotension so it may be different, but if you do have issues with hypotension in your daily life, while it's definitely worth knowing, you don't need a test to tell you that!

For staying warm, just ask for extra blankets. Unfortunately hospitals aren't really meant to be comfortable and the TTT certainly isn't. It's an hour, just try to get through it.

Also, while it's definitely ideal to get continuous BP/HR monitoring, I don't think it's uncommon, especially at smaller hospitals, to get them taken periodically. I think mine were taken every 2-3 minutes. It's possible that where you're going just isn't set up to do continuously monitored tests. If that's the case, maybe ask them to do it more frequently, every 2.5 min or so. This may not be ideal but if you have POTS or NMH it will still give them plenty of info for a diagnosis. Just view it as a step in the right direction - you're ultimately looking to see the specialist and hopefully this will get you there!

[Batik]

Thanks, that helps. The thing that worries me is that if I don't fit their criteria, and they've messed me around before in that respect, I won't get that referral and probably won't even get another consultation or any medical advice at all. I think I'll ring on Monday, ask to speak to a nurse, and ask about the monitoring, anyway. I rang the secretary of the specialist I'm trying to get referred on to and she said it sounds unlikely that they'd only check at 5 min intervals, maybe it's just a bad patient info leaflet. For instance, they need to know your highest and your lowest numbers, and for that they need continuous monitoring. She said maybe it means that they leave the monitoring on for later analysis, but check on it every five minutes during the test. I hope this doesn't mean that they leave me alone in the room while the test is going on! A lot can happen in five minutes, considering that some people's hearts stop during a TTT.

The current plan is to put a couple of fleece blankets in my wheelchair bag. I really don't think shivering would help the staying still part of things.

I suspect the itching I get on standing up will be the most annoying, and will make it the hardest not to wriggle. So I am definitely not stopping the antihistamines beforehand, although I've just taken the B12 out of my meds box for the next few days, as I think that's helping me a bit with things in general. I have booked my support worker, who normally comes in at lunchtime, to come in at 9 instead to get me showered, covered in calendula oil (helps the itching) and dressed. It should help wake me up at least, and hey, being tired from a shower should also help knock me out for the test.

[lejones1]

When you say you don't fit the criteria, what do you mean? You don't get enough of a rise in HR or drop in BP to fit a diagnosis? Do you know if you would possibly get an IV med to induce symptoms? Also another tip: try to stay really calm before you're tilted up - the whole time, because they may use your highest rate as benchmark. I was really nervous and my resting heart rate, usually in the 60s, was recorded as 96. If you're kind of on the edge and don't usually get big increases, that could make a big difference!

Also they definitely will not leave you in the room alone! I had two people in the room the whole time, one watching me and one watching my vitals. The HR monitoring was continuous because I was hooked up to an EKG machine but blood pressure was not. I had a cuff on each arm that would inflate every few minutes. I suspect that the nurse watching vitals could manually choose to take the measurement as well because if you're crashing they like to get a measurement before you faint.

[Batik]

I had the TTT yesterday, and I don't know how useful it will be. As per the cardiologist's instructions, I fasted from the evening before and ran myself into the ground, including exercising and repotting half my houseplants. The result was that the night before I was up half the night with pai and nausea, and eventually took an anti-nausea tablet at 3 am. I don't think I got more than 3 hours' sleep in total. I checked my HR on waking up and standing, and it went up about 40, then went down to a 30 rise and stayed there. I kept on getting dizzy and breathless while showering, dressing, or indeed moving at all, so I thought it would show up nicely for the TTT at 10.30. Nope.

I think one problem was that they only let me lie down for 5 min. It takes way longer than that for my vitals to return to normal. Halfway through the test, I remembered that the anti-nausea tablet is also an anti-vertigo tablet (Buccastem, also known as prochlorperazine or Compazine). This is possibly why I just didn't get tachy. I had no idea how much my HR went up, but after a while it was pretty obvious that it wasn't jumping around, and when I said to the physiologist (who was a sweetie), "I'm not getting tachycardia, am I," she said, "No." Tachycardia is something I don't get every single time I stand up, but I do get it a fair amount. I've done a lot of poor man's TTTs at home. Half my usual symptoms were either missing or normal. Not much itchiness, mild visual disturbances but no blackout, no fainting, no tinnitus.

What I did get was breathlessness on and off throughout the test, hands and feet got colder while my torso got very hot and sweaty, pain around the head and neck (not sure how much that was the angle of the pillow), and for the second half of the test I kept on going into convulsive jerking. I've occasionally had the convulsive jerking before. We don't know what it is or what's causing it, although it's been suggested that it's a vasovagal thing. I did get a chance to discuss that with the physiologist and stress that it wasn't shivering from cold, it's an entirely different thing. As for my BP, it was about 115/84 when I was lying down (my usual BP is 105/65), and then went down. Usually my BP goes up after standing, but they were only measuring every 5 min, so I'm guessing they missed the rise. The lowest was 86/76, although it varied between that and about 105/70, and the lowest in terms of pulse pressure was 94/86. Does any of this sound like enough to warrant further investigation? I'm really worried that I won't even get a return appointment with the cardiologist, let alone the referral to Prof Newton.

[AmberK]

Hi again

The TTT is done slightly differently in the UK, one of the things being that a 5 minute rest period is the norm' here unfortunately. I've been told that it used to be 15minutes but they were told to cut back that timing (costs, I expect ) so pulling them up on that point wont come to much unfortunately. I had 0 rest time on my first, but thankfully had the 5 minute rest on the second test.

That does sound like a low BP to me, so it could be something to pursue in trying to see a cardiologist. The convulsions are something that I get too, and it showed itself in both tests. They were unconcerned, and I put down to weakness from having M.E and having to be upright.

Have you had 24 hour ECG? If not, that could be something to ask for, or do the poor man's tilt when you see the cardiologist. Another option is to ask for a repeat test. If you're convinced the problem is in this area, then ask to be referred anyway. Good luck