I thought this day may have never come, but I finally have my POTS diagnosis. I'll explain a bit about what POTS is first, then I'll chat about how I got my diagnosis and the time frame too.
Postural Orthostatic Tachycardia Syndrome (POTS) is an 'abnormal response by the autonomic nervous system to upright posture'. It means when someone with POTS stands up, different symptoms can occur but this will usually be dizziness (pre-syncope), syncope (fainting), fatigue, nausea, brain fog, temperature dysregulation, palpitations and headaches. Other symptoms can include cognitive impairment, excessively rapid gastric emptying, chronic headaches, tremulousness, sleep abnormalities, orthostatic intolerance, anxiety, visual problems, chest pain, blood pooling resulting in purplish discolouration and bladder problems. There are a number of causes of POTS, but I have what's known as secondary POTS because I have it as a comorbidity to my Ehlers-Danlos Syndrome (EDS), specifically the Hypermobility type.
Things that can worsen POTS are things like excess heat, standing up quickly, dehydration, menstrual periods, the time of day (worse in the mornings), alcohol, eating, and more. There are different ways for POTS to be diagnosed and this will depend on which country you live in and the preferred method of the medical professional. For me, I started off with a GP appointment in December 2019, and my lovely GP referred me to the Cardiology unit in the local hospital. Around January/February 2020 I had an appointment in Cardiology for me to go over my symptoms and I briefly mentioned my EDS and the Cardiologist there said it's common with POTS. I had a series of tests there before I had other appointments such as 24-hour ECG, 12-lead ECG, blood tests, and an Echocardiogram (ultrasound of the heart). 2 years prior I had already had 2 ECG's and one 24-hour blood pressure monitoring. In September 2020 I had a phone consultation with a different Cardiologist, and he said he would chase up on my Tilt-Table Test. This is where you lay flat on a bed that has a footplate (so you lie from the bottom up with your feet at the very end of the bed which felt weird for someone who is 5ft 4") and you are monitored constantly via blood pressure and heart rate. The two female medical staff were lovely but told me they couldn't have conversations with me once the test had begun as it can be distracted and can affect your results. They tilted the bed up (head up) 60-90 degrees (source: BHF) and they dimmed the lights. You stay like this for 20-45 minutes. For me, the test was cut short at maybe 10 minutes as I blacked out and lost consciousness (which is what they're looking for really). If you don't faint, they can give you a glyceryl trinitrate spray to see if it accelerates your symptoms to observe whether you will get dizzy or faint. I was so worried that they wouldn't have the results they needed that I was willing to start it again! I've attached my Instagram post below from my chronic illness account that I wrote directly after it.
Although POTS was first recognised in medical journals in 1993, a lot of medical professionals still have no clue what it is. It's really hard to prove you can faint unless you do faint, so having a written diagnosis is completely worth it. I felt like it took a lot of advocating on my part and being vocal with what treatment I'd like. Basically, from the September 2020 appointment, I was prescribed Bisoprolol which is Beta Blocker that slows down your heart rate and makes it easier for the blood to get around your body. Since getting my diagnosis, my Bisoprolol has doubled so I take one in the morning and one in the evening. Since December 2019 I've also been taking Ramipril which lowers your blood pressure and helps the blood get around the body. They both seem to work well for me and I'm very grateful that they have both reduced my palpitations and chilled my heart out a bit. I have also been 'prescribed' a high salt diet of 10g a day. The NHS recommends for most of the population the intake of salt is no more than 6g a day. The only other things to help are: making sure you don't stand up too quick, wear compression clothing to stop blood pooling, when standing crossing your legs and standing in different positions, drink plenty of fluids, avoiding long periods of standing, and reducing caffeine intake. Exercise is suggested, similarly to EDS, but I find this difficult. I get extreme headaches, cannot do fast exercises like HIT, things like using a cross-trainer make me incredibly dizzy, and things like swimming set off my Fibromyalgia. The best things I can do it using a rowing machine which I don't have, nor a gym pass, gentle stretches, and when I'm up to it, going on short walks.
I'm really glad that I've finally got my POTS diagnosis as it explains so many of my symptoms and has enabled me to get the treatment I need, particularly helping to lessen the heart palpitations and regular spells of dizziness I've been experiencing. If you are also going through the process of getting a POTS diagnosis or are experiencing symptoms that you are not sure about, then my advice would be to keep going, record your symptoms and do some research around POTS so when you speak with your GP you have a better understanding yourself which should help to explain what you are experiencing. If you ever have any questions you'd like to ask about POTS or other health issues then feel free to tweet me.
