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Dysautonomia: All the medical tests

 

Photo: NHS Choices
 
So by this point I've had a lot of different medical tests. Since all that fainting and stuff started going down I've had all sorts of wires and monitors on for various reasons. Each time I got a letter come through about a new test I'd be curious as to what this one would involve and so I thought I'd do a little post about the tests I've had to hopefully alleviate any anxieties if you're going through something similar, or at least share in similar frustrations.

Please note that your experience of these tests will inevitably vary - based on hospital or different kinds of the same test. Also everyone will have a different reaction to, and experience of, these tests, which I guess is the point. So basically, this is just how it's been for me.

Blood test
Pretty basic one but freaks a lot of people out. It really is very quick and is done before you know it so just take deep breaths and squeeze a loved one's hand if need be. I used to have to sing the chorus to Defying Gravity in my head to distract myself (stagey, yes, but also a little ironic..) then I got to the point I was in hospital so much, they'd stick a needle in my arm and I'd barely notice. You get used to things I guess.

Urine test
I always felt a little embarassed handing over a pot of my pee to a nurse to take away to test so I really wasn't a fan of the 24 hour urine collection. This was before I started fainting and I just had tachycardia (fast heart rate) and weakness. You can't really go anywhere on the day you have this unless you fancy carrying around a bag'o'wee. Well, it's more like a plastic container - but you get my drift. 

Blood pressure
Again pretty basic one but thought would include. The cuff goes round your arm, tightens for about 20 seconds and then releases. Ta da. It's worth getting a monitor to have at home so you can keep track of your own blood pressure and heart rate. 

ECG
A typical 12 lead ECG is where you lie on a bed with your top off and have 12 leads stuck to your skin with little sticky electrodes. You don't feel anything when the reading is being done so this is completely painless and not uncomfortable at all apart from a little embarrassment at lying there topless, which you soon get over. 

You can also have these on for 24 hours or a week, but this is only three leads so much easier to handle going about your day. The monitor can be attached to your belt or trousers, or can sit in a pocket of a jacket. Means you can't wear a dress so easily but a good trick is to wear shorts under a dress then you can keep the monitor in the pocket.

Also if you are having a 24 hour ECG done, don't stay home out of embarrassment - the point is to go about your day as normal to see how your heart is working. I found a pashmina or scarf also comes in handy if you feel a bit awkward about people seeing the wires - which I did when I had a 7 day ECG on three separate occasions (not fun).

The hospital should give you plenty of spare electrodes and explain where these go. So you can still have showers, you just can't leave the monitor off for two long. You also need to write down if you have any symptoms, when you sleep and if you have a big meal.

Tilt Test
This is the one that sounds the scariest written down but isn't too bad really. You lie down on a padded table type thing with your legs strapped down and a bar in front to keep you safe. There is a panel for you to put your feet on at the bottom. An ECG is going as is a blood pressure cuff on one finger. After so many minutes of lying flat the table is tilted and rotated until it is in a near upright position. If you feel symptomatic you can let them know - there were two nurses in the room when I had mine.

The only thing I didn't like was that I got bored standing doing nothing for 20 minutes, but then I lost consciousness. As soon as you are symptomatic or do actually pass out they will bring the table back down to a horizontal level and make sure you are okay. They then keep monitoring you until you are back to normal and can leave - even then I waited in the waiting room for a while so could get someone's help if necessary.

It's a good idea to take someone with you to this one. They won't be able to be in the room while test is happening - but can make sure you get home ok afterwards if the test does induce an episode.
 
I've heard if you don't pass out they can give you some medication so you will pass out and be monitored but I didn't need this when I had the test so can't really comment.

Autonomic Nerve Test
Felt a little bit like I was on The Cube or something with this one. It's several little tasks you do while also having ECG and blood pressure cuff on finger going. I think the tasks were: squeezing a blood pressure cuff and keeping it at a certain level for two minutes, blowing into a tube at a certain pressure for so many seconds, standing up etc. I can't remember all of them but they give you a break in between each one and it was quite funny really.

EEG
This one monitors brain activity with about twenty small leads attached to your scalp with tiny electrodes, using sticky stuff to get them in place. Immediate side note: bring a hat if you're planning on going out afterwards because as much as they try to get it out of your hair, it does leave your hair looking and feeling pretty greasy.

The actual test involves sitting in the dark with your eyes closed then open for periods of time. Then a bright light will be shined at various intensities and for various amounts of time including flashing - I found this a bit uncomfortable but it doesn't last long and there are breaks between the lights. You also take deep breaths while having the wires on.

Lasted about twenty minutes to half an hour altogether. The lady who did mine was lovely and really encouraging - which helps with the uncertainty of it all, and wanting the test to be over as it's boring/a bit weird.

CT scan
This was so quick it was ridiculous. Literally went in, lay straight on the table which then moved back into the tunnel (see image at the top of this post) and within a minute I was done. You don't feel anything when the images are being taken and you only go a very small way into the monitor so don't worry about feeling claustrophobic. There are some sounds while the images are taken but this is not very loud.

Echocardiogram
This is a sonograph of the heart so a cold jelly is applied to the chest (another topless one but you get to wear hospital gown) and this area is then scanned. A little pressure is applied but not in a way that is uncomfortable or painful.  A 3D echo does not feel any different - just another image that they take. I'd guess the test took about 15 minutes.

It was a bit weird as it does sound like how a pregnancy scan would sound and my mum was actually able to sit and look at my heart!
 
Exercise Tolerance Test
So this was my least favourite and I felt like a mix between Bridget Jones and Lady Gaga. A couple of ECG leads are applied and blood pressure is taken regularly throughout the test - a face mask is also worn to monitor breathing. This first one was on an exercise bike and started at a gentle pace and built up until the maximum of what I could do. Two nurses were with me the whole time and were very supportive and reactive so if you do feel unwell you are in the safest place possible. The difficulty with this one is that my pre-syncope warning is so split-second that I'm never able to warn people, so I did pass out and come off the bike but the nurses made sure I was safe and didn't injure myself.

I had another exercise tolerance test on a treadmill. The idea was to have an echo before and then after exercising when heart at it's highest. Again, ECG wires and blood pressure regularly taken but no face mask this time. Similar idea - starting gentle and increasing in speed/steepness every 3 minutes. As I could have predicted, I lost consciousness but the two nurses made sure I was ok.
 

Also see previous blogposts:
How to help someone with a chronic illness
POTS
Living with Dysautonomia
Living with Dysautonomia: How to cope
21 going on 80 (written back in December 2011, not long after I first started passing out and was very ill)

Comments

  1. Thanks for the share! Don't they also preform an ANS test as well? I think it is a combo of a HRDB, sweat test, tilt table test, and a valsalva test?

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