EP.207/ My Experience of a tilt table test, ecg and echocardiogram
Last week on Instagram I asked if anyone wanted to hear about my experience of two ECGs and a tilt table test as part of my ongoing chest pain investigations, and the majority of those who voted said yes!
So, I wanted to record this whilst the experience was fresh in my mind.
If you’re not sure why I had these tests, you can listen to episode ep.204/ the thing that’s been happening with my heart and why it’s important to talk about it in the endo community.
So, as I said in my last episode about this, I am not a cardiologist, and I am not a health coach specialising in heart disease or any heart related conditions. As an endometriosis health coach however, I do see a lot of postural tachycardia syndrome and mast cell activation syndrome, both of which can cause symptoms like chest pain, dizziness, shortness of breath, palpitations, etc. and so many of my clients do have to go through these processes and tests to get the right diagnoses. Again, I recommend you listen to my previous episode for more information and I’ve also linked to a couple of other episodes to help with your own symptoms, if you suffer the same.
So, having said all of that and getting that disclaimer out of the way, from what I gather, I didn’t just have a standard ECG, I also had two echocardiograms. So, I’ll explain the difference…
An echocardiogram, according to the NHS, is “a scan used to look at the heart and nearby blood vessels”. It is an ultrasound scan that can look for heart damage and signs of conditions such as inflammation or structural issues. I’ve linked to the NHS page for more info on the type of issues they can detect with an echocardiogram.
There are a few types of echocardiograms, but the standard is known as transthoracic echocardiogram, where you are lying down on your side. For ease of this podcast episode, I’m going to call it a resting echo.
There’s also a stress echo, which is what I did as well. And that’s when the scan is performed during or just after exercise.
Then we have the electrocardiogram, commonly known as an ECG and according to the NHS, this test checks “your heart's rhythm and electrical activity”. This test is the one you may normally think of when you think about heart tests, and it’s the one where you have lots of sticky patches over your chest, with wires coming from the patches and attached to a machine. So, those patches are sensors that pick up on your heart beat and rhythm to check that everything is operating normally.
There are a few types, but what I had was a resting ECG and a stress ECG, so just like with the echocardiograms, I had one lying down and one whilst I was exercising.
So, these two tests were looking at whether there’s something going on with my heart, and I had these performed on the same day and the tilt table test separately, so I’ll get to that after.
Now, as I explained in my previous episode, in the past I guess two or so months, I’ve managed to get my chest pain and racing heart to a milder place, it’s less frequent, less persistent, and much, much less scary. I’m no longer having pain that causes me to gasp out loud and stops me in my tracks, or even causes me to fall over.
I was quite nervous that as a result, these tests would miss what this chest pain is doing at the time of it happening, as it comes on at specific moments. For example, after I use a face tool which uses electrical muscle stimulation and after I eat high histamine foods. Devices that use electrical muscle stimulation are not supposed to be used by people with heart conditions or with things like a pace maker, because the electric signals could interfere with the electric signals of the heart or pace maker, and it took me a while to figure that out, but when I stopped using it is when - combined with high dose quercetin - I started experiencing relief.
Anyway, it occurred to me that I could be spending £2500 on these tests which may not pick up on anything if I don’t get the pain at the time of testing, so I asked my doctor’s secretary if I should induce symptoms. Once I got the confirmation that I should indeed induce the symptoms, it was only a day beforehand, so I didn’t have long to build up the amount of histamine and exposure to the EMS eye mask. I also didn’t want to have so much pain that I ended up in A&E before we even got to the test, so I was quite nervous about how to balance the whole thing and get the results without being woken the night beforehand with extreme chest pain or spending a two hour car trip on the way there feeling like I was having a heart attack.
So, I ate some high histamine foods the day before, and I ate a lot of high histamine foods the morning of. Then, as we got nearer to the hospital, I wore the mask. Unfortunately, for safety you can only wear the EMS mask for 10 minutes at a time, so I was restricted with how much I could expose myself to. If I had known a week or two before the test that I needed to induce symptoms I would have booked some time off work and spent a week building up the intensity of the mask and wearing it once a day every day, as the worst of my chest pain came when I had been wearing the mask consistently on a daily basis and had built up to the highest frequency. Then I wouldn’t have had to worry so much about the pain coming on before the test because I wouldn’t have been working and worrying about also managing clients, etc.
So anyway, that 24 hour build up was quite stressful because even though I can tolerate more histamine foods now, large amounts make me feel quite unwell with numerous symptoms from dizziness to bladder pain to nausea. And additionally, I was of course scared of having that extreme chest pain again because it’s such a horrible experience, and every car journey I go on is traumatic for me because of my PTSD, so I was worried about a long car journey ahead of the testing.
I mean that’s all a side note, but I tell this you because as you all know very well, these tests don’t happen in a vacuum. We tend to have to navigate work, our fears, other appointments and so much more when we’re going for different tests, and the management of all these moving parts can be exhausting and stressful, and I will say that that was my experience. Had money not been an obstacle, I would have stayed the night in London, near the hotel the night beforehand, and had taken time off work, and just spent a week focusing on making the entire experience as easy as possible, because even though the tests aren’t distressing, the emotional weight of them is quite a lot to carry, knowing that you’re getting your heart checked, and then couple that with trying to work on your laptop in the car, being scared of the car, whilst worrying about whether you’re about to get bad chest pain, and generally not feeling very well - well, it’s a lot.
So anyway, we got to the hospital, and this was London Bridge Hospital and it was very nice, a very easy and smooth process on arriving.
My first test was the resting echo and ECG, and so I was asked to change into my sports clothes and lock all my belongings in a locker, and FYI, Chris was asked to wait in reception. I’m not sure if he could have come in with me, I didn’t ask as I’m so used to having to do these things on my own, but you know, if you need someone present, I’m sure you could ask. So, anyway, I was met by I believe her badge read cardiac physiologist and she was very kind, and she asked me to remove my bra. Total side note, but I don’t wear bras and I don’t have a sports bra because I cycle or walk as my cardio, and thank god I didn’t buy one because I had to take it off anyway, so I was just wearing two like crop tops layered over each other, but I had been intending to buy a sports bra because I was like thinking I would be running. So anyway, I had to take my tops off and put on a hospital gown that was open at the chest, and then she stuck on I believe 10 sensors, attached to wires. I’m just bringing this up in case you’re uncomfortable with being topless and in case you’re about to spend money on a sports bra!
I was then told to lie down on my lefthand side, with my left arm above my head and I think my right arm just lying on my side. A cardiologist then came in the room and put some gel across my chest, pretty much on and around my left breast, and then he used an ultrasound tool, which I guess was similar in shape to a jade roller, you know those face rollers, and he would press it in certain positions around my heart, and hold it for a while to scan the area. I would say this took about 10-15 minutes and what was so interesting is that one of the first places he went to, is exactly the spot where I get the chest pain and where the chest pain stems from, so again, it really does make me think that an artery is spasming when I get this pain, but we’ll see.
I was told everything looked normal on the scan and there was no damage, so that’s obviously great news, but I worried about the fact that I was experiencing no symptoms during this time, which was really frustrating. So no heart pain or palpitations.
I should also mention, if you’re uncomfortable with having your chest out in front of the doctor, you are facing away from them and they have their arm across you with the tool and they’re looking at the screen, not at you.
Next up, in the same room, they then moved me to a treadmill. I had a blood pressure monitor attached to my arm and I think from memory a pulse monitor attached to my finger, but perhaps I’m remembering that incorrectly because I’m not sure why you would need that with all those sensors attached!
So I was still topless, with a gown over me that was open, but I was pretty well covered – just for anyone wondering or nervous about that part.
It was explained that I would mostly be walking at increasing speeds with an increasing incline, so as if I was walking up a hill that was getting steeper and I was going faster and faster. I would be at one pace and one incline for 3 minutes and then it would increase, and I think the test was something like 10 to 15 minutes long.
I was allowed to stop at any point if it got too much as well, so it’s not like you’re forced to stay on if you feel like your heart is pounding and you can’t breathe!
So, the first 3 minutes was fine, easy. The next 3 minutes I began to feel uncomfortable and I should give a bit of context here. I get out of breath and find my heart races very, very easily. The chest pain however, isn’t brought on by exercise. If it’s bad and I started walking for example, I often can’t carry on walking because it makes it worse, yet the chest pain doesn’t come on from walking, but shortness of breath and a pounding heart does.
Now it not because I’m unfit. I started working out as a teenager and for most of my teen years and twenties I also did heavy cardio like spin and the stepper for an hour at a time. Now because of my knees I generally do walking and cycling every day, plus I use a trampoline, though I haven’t used that much the past month or two, and I strength train for about 30 minutes, usually using weights, resistance bands or my body weight, and I do this about 5-6 days a week. So, I’m not unfit, that’s not the problem, but I only have to go up the road before I’m out of breath.
And it’s not just exercise that brings this on either, hot baths and showers take me to the point of feeling faint, and as if I’ve just run a marathon because my heart is pounding so hard in my chest and I feel like I’m not getting enough oxygen in. And this of course is quite common in POTS, so is one of the reasons why POTS is being investigated in my case.
But back to the stress echo and ECG, quite quickly I felt out of breath and my heart was pounding, but it tends to get much, much worse when I’m working out at home, so when they asked me if I wanted to keep going, I did. I will say they both looked a little concerned at how quickly I responded like that, but they didn’t say anything other than ask me if I was okay. So it pretty much went on in this way: I felt my heart rate go up and found it a bit harder to breathe with each incline and speed increase, but not as bad as I would feel at home, like I didn’t feel like I feel in the shower or like when I’m working out really hard with weights, so I kept going and they would ask me if I was okay and I would say yes and we’d carry on. I think it was probably unusual to see someone of my weight and age struggle so much with a walking exercise, though they did say they were working me hard.
During this time, my blood pressure would be taken at regular intervals, so I would need to keep my arm down whilst she was doing this and hold on to the treadmill with one hand. It’s a little tricky to do as you’re going quite fast but not impossible or anything to worry about.
As we neared the last few minutes, I looked over and I don’t know anything about BPM, or at least I didn’t at the time, and I noticed my heart rate looked very high, like it was somewhere between 191 bpm and 200 bpm. I think maybe it got up to 198 bpm but honestly I can’t quite remember, I just remember thinking that it shouldn’t get much higher!
I will say that I never needed to break out into a run, so I walked the entire time. They told me that it varies from person to person, some people find that they eventually need to break into a run, others it’s a very fast walk.
Then the test came to an abrupt halt, and I was quickly ushered back to the hospital bed, and lay down on my left side, back in that resting echo position, and another shorter echo was performed.
Following that, I was asked to sit up and my heart rate was monitored for the next five minutes.
I wasn’t given much information except that my echo looked normal, but my heart rate exceeded my target heart rate and what they had expected me to reach, but that it wasn’t dangerous. They also said my heart rate was taking a while to come down but they weren’t concerned about that.
I’ll get back to the heart rate pieces towards the end of this episode.
Because I didn’t get the pain symptoms which is my main issue, or any of the palpitations I get, the cardiac physiologist did think a seven day ECG test would be a good idea, and so recommended I speak to my doctor, Dr Gall, about this, which I have done and am waiting to hear back from.
So, after the tests were finished I had a quick shower because I was literally dripping with sweat, and then we headed home, and I did start to feel quite unwell on the way back. I didn’t get heart pains, but I just had all of my other histamine symptoms, bladder pain, dizzy, really really nauseous, heavily fatigued yet wired and anxious, I just felt very unwell and wiped out.
I don’t think the everyday experience of an echo or ECG would feel like that honestly, they’re pretty straight forward tests. Of course, the stress test is tiring, but it’s really just a 12 or maybe it’s a 15 minute (I can’t remember) fast walk up a hill, which you can stop at any point. I think I ended up feeling so unwell because I was stressed about fitting work around it, the car journey, the pain itself and having to eat a lot of my trigger foods. On top of that I get really bad car sickness and I was working on my laptop in the car too, so it was just quite a lot to manage and by the time I got home I was a bit of a mess!
So, the next day we had to return for the tilt table test, which is a test for postural tachycardia syndrome. To remind you, PoTs is a condition that falls under dysautonomia, which means a dysfunction of the autonomic nervous system, the part of our nervous system that controls involuntary functions like our heart rate and breathing. It causes an abnormal increase in heart rate when someone goes from sitting to standing and is accompanied by symptoms such as dizziness, chest pain or shortness of breath, as some examples. Symptoms can vary from being mild to debilitating.
So here’s the definition and diagnostic criteria of POTS according to the charity POTs UK:
Patient must experience PoTS symptoms mostly when upright over a period of at least 3 months.
A sustained increase in heart rate of greater than 30 beats per minute within 10 minutes of standing.
Those aged 12-19 years require an increase of at least 40 beats per minute.
These criteria may not apply to those with a low heart rate when resting.
There is usually no drop in blood pressure on standing.
Many symptoms are experienced in the upright position (usually standing) and relieved by lying down.
I have to say this is a little confusing because some sources do also claim that a drop in blood pressure when going from sitting to standing is also required to be diagnosed with PoTs. PoTs UK address this on this definition page and state that a drop in blood pressure is not required for a diagnosis but can follow an increase in heart rate with some PoTs patients.
So a tilt test is a test where you are strapped down onto a bed (so that you don’t fall), and there’s a foot rest for your feet at the bottom, and you are tilted upwards from a horizontal position. Some sources say you are tilted to a 60-70 degree angle whilst others say 90, so you’ll need to check with your doctor if you want to know what it’ll be for you. You are then held there for up to 45 minutes, and during this time, your blood pressure and heart rate is monitored and you are asked to report symptoms.
The idea of the tilt test is to essentially induce symptoms to see if it’s the position change that causes them. This means in people with severe symptoms, they may faint during this test, which is why you are strapped onto the bed. If you do faint or have very bad symptoms, the test will end early because it will normally indicate a positive test, if accompanied by an increase in heart rate of more than 30 bpm.
So, mine was a 45 minute test. I had the sensors attached to me again, just like with an ECG, but this time I was allowed to keep my crop top on, I just had to remove my other top that I had layered over it. I lay down on a typical hospital bed and had a blood pressure monitor attached to my finger and arm. I was then strapped down to the bed, but not uncomfortably so.
Going into this test I was nervous, honestly I was doubtful as to whether the test would show anything at all. As I’ve said before, I resonate with every single symptom of PoTs, except that they aren’t always or aren’t usually brought on by standing, or at least, I don’t think. I have them randomly, though there are times when I do notice the dizziness comes on or fast heart rate comes on with position changes, usually if I go from say crouching or being on the floor to standing, or if I’ve had some histamines or caffeine and then I go from sitting to standing or lying from standing – that’s when I notice it. It’s as if the whole thing has been exaggerated, which could be still caused by PoTs, as many PoTs patients cannot tolerate caffeine and have MCAS, which causes issues with histamines. But I don’t come across as a classic PoTs case, despite having all the symptoms.
So I kind of had gotten to this place in the past few weeks where I was doubtful it was PoTs, but as soon as the table tilted, I started feeling light headed and short of breath. I was actually surprised by these symptoms. I felt this shortness of breath and chest tightness on and off for about the first three quarters of the test, and every time it got worse or changed, I had to communicate it to the physician.
The final quarter I started to get very tired and sleepy. I thought maybe it was because my body had relaxed into the position and my brain had given up fighting not having anything to do, but I didn’t communicate that to her very well. I mentioned it briefly, but now I look back I really think I should have emphasised it more because it was almost like I was drowsy, and since the test, I’ve read that this is the experience of some PoTs patients with the tilt test. It certainly could have been that I just relaxed into it, but I do wish I had made it clearer how noticeable it was.
Annoyingly, I didn’t have any chest pain, yet again, and the dizziness and racing heart weren’t anywhere near as bad as they can get.
In terms of how I felt about the test itself, I was quite unnerved by being strapped down to the bed, I’m not really sure why! At first, it was actually a little too tight and I couldn’t breathe properly because I couldn’t expand my lungs fully, but she quickly adjusted it and then that was fine. You also can’t talk and have to keep very still, so it’s a very strange feeling to realise you have to stare at the same spot on the wall for the next 45 minutes with no stimulus whatsoever and no ability to talk or move unless you absolutely have to.
I also have knee issues and find my legs get very heavy when standing on them for really, any more than 10 minutes, and so after a while my legs and knees got quite painful and uncomfortable. With PoTs patients, it’s typical for them to have leg swelling and heavy legs because the blood is struggling to flow back up the body, but I don’t seem to have swelling, despite having the heaviness and broken veins that usually accompany the swelling, so again, it’s another sign yet not a sign of PoTs – very frustrating!
Generally I just didn’t feel right, and I kept having this urge, like a physical urge to sit down, and it was almost like instinctive – like if “I sit down, then I’ll feel better”, which like I said, is unusual because I didn’t think these symptoms came from position changes.
After the test, she said she would send the results to Dr Gall, but I pushed her a little and she sort of reluctantly said that every time I mentioned I was having symptoms, my heart rate had increased. I have no idea whether that was an increase that was sustained and above 30 bpm, indicating PoTs, or whether it was just random spikes in heart rate, either way, she said I needed to discuss it with Dr Gall. In her opinion, she felt that my symptoms are related to heart rate and not blood pressure, as that stayed normal throughout, so that sounds suggestive of PoTs - but I kind of wondered had it been a clear positive, I feel like maybe she would have said. I don’t know, maybe there’s policies against that.
So, I thought it was interesting that both tests showed some increases in my heart rate, despite them not being levels to alarm.
I have a home ECG device which prior to these appointments I couldn’t get to work, but the physiologist told me to turn off some of the nearby plug sockets and electrics and it should start to work and so I did that, and I’ve gotten it working now. I was curious to see what my heart rate was doing during showers and baths and exercising giving these heart rate abnormalities. I’ve only just started to record it but I tested my heart rate in the bath the other day, which reached 162 bmp. I stupidly didn’t record my heart rate before the bath, but I started feeling my heart racing uncomfortably so and so jumped out and it was about 110 bmp, I got back in and across the next 15 minutes it went up to 162 bmp. Now, it’s normal for heart rate to go up in the bath and in hot weather, but according to one doctor I spoke to in one of my colleague community groups, it shouldn’t really go up by more than 20 bpm. I also submitted this reading to Kardia (the ECG app company I use) for a cardiologist review and it was recommended that this was investigated, so it might be fine, but it might also be something to do with this unusual spikes in my heart rate and I have forwarded this info on to Dr Gall.
So for now, I am going to try and monitor my heart rate more regularly with my Kardia device, and I’m also going to try and get a pulse monitor I can wear during exercise. I am waiting to hear back from Dr Gall about a seven day ECG, though that’s another £1700 so I would need to first get the finances together to do that.
So, overall, I would say that the tests aren’t invasive, but they can be emotionally and physically taxing, depending on your symptoms. I personally found that I felt just a bit vulnerable and unwell after my ones, as I said, a lot of that was to do with the histamines I had to eat, but if you think you may feel unwell, I suggest you have someone with you, you’re not driving yourself, you have food with you, plenty of fluids and you plan a comforting and restful day or afternoon ahead of you after the tests, and just clear your calendar in case, as I ended up having to cancel appointments because I didn’t feel well enough.
Now I’ve had these tests, if I ever need them again, I wouldn’t hesitate to have them, and I would feel less nervous, but I would do more prep ahead of time and ensure that I had the space to recover from them afterwards.
So, that’s it! I’m really not sure when I’ll have more info, or even if we’re close to an answer, but hopefully I’ll be able to offer some kind of update soon!
Let's get social! Come say hello on Instagram or sign up to my newsletter.
I’m excited to announce that I’ve joined a new podcast network called Connectd Podcasts. Connectd Podcasts is a new mission-driven network focused on helping podcasts like this grow and thrive! I’m thrilled to be a part of a network bringing positive content to the world through diverse voices and perspectives. Be sure to check out some of the other great shows including The Period Party by Nicole Jardim and Beyond Trauma by Lara Land!
My cookbook This EndoLife, It Starts with Breakfast is out now! Get 28 anti-inflammatory, hormone friendly recipes for living and thriving with endometriosis. Order your copy here.
If you feel like you need more support with managing endometriosis, you can join Your EndoLife Coaching Programme. A 1-to-1 three month health and life coaching programme to help you thrive with endometriosis. To find out more about the programme and to discuss whether it could be right for you, email me at hello@thisendolife.com or visit my website.
This episode is produced by Ora Podcasts. Ora provides audio editing, management and other services to make podcasting simple and sustainable for their clients. Health coaches, nutritionists, mediums, personal trainers, tarot readers, teachers, or just those striving for a better world, Ora can help you start and maintain your podcast. Get in touch today.
This episode is sponsored by BeYou. Soothe period cramps the natural way with these 100% natural and discreet menthol and eucalyptus oil stick on patches and CBD range. Click here to find out more and to shop: https://beyouonline.co.uk
This episode is sponsored by Semaine. Try their supplement for period pain and daily supplement for hormonal balance and PMS prevention with code ENDOLIFE to get 20% off your first order.
Show Notes
https://www.nhs.uk/conditions/postural-tachycardia-syndrome/
https://www.nhs.uk/conditions/echocardiogram/
https://www.nhs.uk/conditions/electrocardiogram/
https://www.bhf.org.uk/informationsupport/tests/tilt-test
https://www.potsuk.org/about-pots/diagnosis/
https://www.theendobellycoach.com/podcast/endo-and-chest-pain
https://www.theendobellycoach.com/podcast/endometriosis-and-ehlers-danlos-syndrome?rq=postural