Having a tilt test for a POTS diagnosis is definitely a little anxiety-inducing. There is something very strange about going for a test where you know that there is a strong possibility that you will pass out. It is particularly strange when you have a fear of fainting. So it was with great trepidation that I went for my first tilt test to see if I had postural orthostatic tachycardia syndrome (POTS), and perhaps even more so on the second and third ones. All in all though, it wasn't nearly as bad as I expected it to be and it really helped us move forward with managing my symptoms.
This is just my experience of having a tilt test for a POTS diagnosis and the reasons I had this test done. It does not constitute medical advice in any way. Always follow the advice of your doctor.
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Why have a tilt test for a POTS diagnosis?
Alongside other investigations, a tilt test is often used to assess whether a person has POTS. A diagnosis is made (typically) if the patient has an increase in heart rate of 30bpm or more within the first ten minutes (POTS UK). Patients often have other investigations such as an electrocardiology (ECG), 24 ambulatory blood pressure and heart rate monitor and 24 hour urine collection, amongst others (POTS UK).
As I explained a little more fully in the ‘my diagnosis story’ post on the blog, I had been experiencing dizziness, breathlessness and a feeling that my heart was beating too quickly for quite a while. These are common symptoms of having POTS, along with fatigue and feeling light-headed. It took me quite a while to get a referral to see a cardiologist who then referred me for a tilt test, which I suspect is fairly common.
What is having a tilt test like?
My first tilt test was what I would call a ‘regular’ tilt test. The second and third were the same except that for one I had to drink a meal replacement about 45 minutes beforehand, and for the other I also had EEG monitoring.
In basic terms, the tilt test involved lying on a bed for a period of time. From memory I lay flat for about 15 minutes or so. Then the bed was ‘tilted’ upright (60-70 degrees) so you are in a standing position.
There was a strap across my chest to prevent me from falling when the bed was tilted and I was monitored for heart-rate and blood pressure with sensors on my fingers and arm. The doctor also asked me to tell her when I felt dizzy, light-headed or sick and she took observations such as blood pooling in my feet.
I was quite nervous about having the test as I have a bit of a fear of fainting. From a fairly early age I have had occasional faints for no reason, and when I was in my late teens and early twenties I would faint fairly regularly when I had period pain. Although I did mention this to doctors on several occasions, I didn’t have any investigations at that time and it was just put down to 'hormones'.
So, on the first tilt test I did panic a bit when I had the sensation that I was about to faint. I felt the usual swirling head, weird sensation in my ears and nose and very light-headed. The doctors and nurses that were there quickly tilted the bed back to flat so I didn’t actually pass out. Although having a needle shoved in my arm about ten seconds after that happened wasn’t really appreciated!
Several years after that first tilt (and the one involving meal replacement which was done the day after), I had a tilt test with EEG monitoring. This was to rule out any form of epilepsy (which was ruled out). The procedure was the same except I had electrodes on my head to monitor my brain waves.
However, on this tilt test they wanted me to faint to see what my brain waves were doing, and would do if I lost consciousness. Just what you want to happen! So after about 15 minutes or so of not fainting I was administered with GTN spray to try and force this to happen. Again, lovely! I was so nervous that I was doing a silent crying thing, which luckily the doctor didn’t notice as he was on the other side of the room (either that or he just didn’t let on that he knew!).
My autonomic system appears to be improving though, as I didn’t pass out. It felt like quite an achievement! The GTN spray did give me a pounding headache for about an hour or so afterwards though. Again, lovely!
All in all, is the tilt test something to be scared of? Well, it depends. I have a bit of a fear of fainting so it was a test that I was nervous about. But it isn’t painful (unless you also have blood tests, which is a moment of pain and I think all us spoonies are used to blood tests) and the doctors and nurses were kind and understanding that I had a fear of fainting. If you have the same fear then definitely let them know so they understand.
Outcomes
My diagnosis of postural orthostatic tachycardia syndrome is complicated . . .
My first tilt test, the one that I almost fainted on, was described as not showing that I had POTS, but only low blood pressure and orthostatic hypertension. This seems strange to me given that I would have certainly passed out if I had not been quickly laid flat. I was later advised that this interpretation was a little strange and advised to be re-assessed at a different clinic, which is why I had the other tilt tests.
The second tilt with EEG was described as showing that I did have POTS. My heart rate increased to the level that meets the diagnosis for the condition. However, as other tests (autonomic function tests, which I am about to have repeated) did not show I have POTS, the situation is a bit complicated!
My cardiologist says that it is not uncommon for people to have such test results. That symptoms change day-to-day for many people and can be affected from everything from weather, food eaten and hormonal changes, and that it is symptoms that are important. For this reason, he says that myself and other patients are ‘potsy’ rather than having POTS, but treats us with the same medications and lifestyle advice.
I hope that this post on having a tilt test for a POTS diagnosis is helpful. Please don’t be worried about having a tilt test. It isn’t painful as such, and is a great diagnostic tool for understanding your symptoms.
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Living with POTS / dysautonomia
Next steps after a POTS / dysautonomia diagnosis
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