things that help me deal with POTS

“More than 50% of patients whose condition was triggered by a viral infection get better within five years” - source

well, fuck

on january 2nd, I reached 5 years of Postural Orthostatic Tachycardia Syndrome, a condition I got as a result of Covid. There’s a lot of us out here. National Geographic reported the amount of people with POTS doubled after Covid.

(okay but what is it)

POTS is a nervous system condition that affects many different parts of the body from heartrate to blood pressure, digestion, cognition, temperature regulation, sleep. It presents as a huge heart rate spike on going from a reclining to upright position, but that spike is just a result of everything else going on in the body. In my case – there are different types of POTS – my body is no longer producing enough blood, and it isn’t constricting blood vessels properly. That means when I stand up, the blood sinks and pools in my legs, away from my heart and brain, so the heart overreacts and I have absolutely zero thoughts inside my head. I have had years of fatigue, and it has completely changed my life.

In the past 5 years I’ve seen doctors go from knowing fuck all to having a basic understanding of POTS, but still largely being unhelpful. Or it’s like, they have to take my lead because I know more than they do. But if you don’t know the stuff, and neither does your doctor, you’re kind of fucked. I saw an interview with someone recently whose doctors told them they’ll always feel like shit, but a few pills will help them feel a bit less shit. And I just clenched when I heard it. I think I am writing this blog post to unclench. And so,

things that help my POTS ->

1. Midodrine.

I wasn’t given a Midodrine prescription until I reached year 4 of POTS. I’m currently on 7.5mg a day. Midodrine constricts the blood vessels, doing the job my body is so bad at. When I first got sick, the go-to prescription was beta blockers to lower the heart rate. There is no specific POTS medication, so doctors are just having to pull from other places, and I have found beta blockers just help with the effect of POTS whereas midodrine stops the POTS effect happening. By far the most helpful thing. I had to have an echocardiogram and a 24 hour ECG before I went on it to make sure nothing else was going on. I give Midodrine ⭐️⭐️⭐️⭐️⭐️ and also the Nobel Peace Prize for saving my life. Like, I’m glad I was on beta blockers. But they just don’t compare.

2. Only eating food that has a low-medium glycemic index

I can’t lie, I didn’t consider how food played into things for the first 2 years because I wasn’t mentally prepared. My whole life had been taken away from me, I wasn’t losing food too. I was falling asleep after meals though. Brainless and hot. And then I listened to this nursing podcast about POTS and learned the lower blood volume means when you eat food that has a high impact on the body (see sticky rice, which i was living on at the time haha) the blood rushes to the stomach to digest it and you have no blood left in your brain so you fully conk out. I stopped eating white bread, white pasta, potatoes, white rice -> switched it for sourdough, wholewheat pasta, sweet potatoes, wholegrain brown rice. It is a ⭐️⭐️⭐️⭐️⭐️ difference, and even though it has made life a bit more complicated, it is worth the pain.

3. Cutting out caffeine

It took me four years before I cut the caffeine, which I hope speaks to my misery and the sheer dependence I had on it for energy. Because the low glycemic diet was more a case of stopping doing stuff that took so much energy from me, but nothing was giving me energy like caffeine was. I have since learnt that people with POTS experience massive spikes after ingesting caffeine, as in you feel a big effect from it but then a big fast drop-off too. At the beginning of year four, I drank a full cup of matcha latte and then fell asleep for an hour and I was like wow something is going on here, and when I spoke to all the POTS friends I’ve accumulated all the years they were kindly like ‘what the fuck are you doing still having matcha’ and they were so right haha I give this ⭐️⭐️⭐️ for SPITE. I MISS MATCHA SO MUCH

4. The CHOP protocol and the Visible app

After I got my Midodrine prescription, I had a bit of excess energy for the first time in years but given how STILL my body had been in that time, I just had no strength left in me. So this is what I have been doing for almost a year now: I bought a Visible armband to track my heart rate and how much ‘energy’ I use per day, and then I started a graded exercise programme for people with POTS (that is called the CHOP protocol because it was designed by the Children’s Hospital of Philadelphia). Now, some caveats. POTS is closely aligned with chronic fatigue and conditions like ME, where graded exercise can be a red flag and make people much worse. It’s possible to have both conditions at once. I just have POTS. After I started Midodrine, and I had the app to closely monitor things, I decided to try it – it being 3 minutes on a rowing machine to start with, building up incredibly gradually over 8 months until you progress to an upright exercise bike, and then an elliptical. I couldn’t have done this pre-Midodrine. I was so ill. But the help with blood pressure has changed everything for me. It felt like my body had edges again. I am writing an overly detailed blog post about the CHOP protocol here with a new update added to the bottom of the page every time I complete another section. I couldn’t have managed it without the Visible app either, which has been the only thing that has got me to pace in all this time because it attaches actual numbers to the vagueness of ‘oh wow I don’t feel so good.’ I have a referral code for that here ⭐️⭐️⭐️⭐️⭐️ for Visible and CHOP gets ⭐️⭐️⭐️⭐️⭐️ and a kiss on the head. Because it’s making me feel like my actual body is getting better at dealing with POTS, like i’m beefing up to fight POTS in battle.

5. Salt and water

These almost don’t need repeating because ‘drink lots of water’ and ‘make sure you have extra salt than normal people’ are the first things you hear after a POTS diagnosis so I guess I’m just here to say: make sure it’s good quality salt full of nutrition and not shitty 30p salt. And don’t chug water, just sip it gradually over the course of the day. 3 litres? I have recently been diagnosed with silent reflux which many people with POTS develop on account of the janky nervous system, and chugging water can overfill the stomach and push acid into your throat and damage it. A sore throat is so….unnecessarily triggering for me, wow. Thinking I have Covid again makes me feel like the world is ending. So I just mention it here to be careful. I dont really know what the star system is for anymore. Salt gets ⭐️⭐️⭐️⭐️⭐️ but endless water I give ⭐️⭐️⭐️ because I miss coke more than anything

Okay they’re my top 5.

Added bonus is finding a friend online with POTS so you can commiserate together. Added bonus is family and friends who are understanding and interested. Added bonus is PIP. Added bonus is work adjustments. Added bonus is winter so your body can cope a bit better.

Maybe I will have it forever. if I find more things that help me i’ll let you know in case they help you too