You may or may not be aware that my PoTS got significantly worse in pregnancy. Pre-pregnancy, my PoTS was largely manageable with non-pharmacological measures. The only time I had significant problems was when the temperature was 27 degrees or above. My second trimester was worse than my first. My third trimester (post coming soon) saw no change in symptoms. I ended up unable to stand safely, not function before 11am at the earliest and struggling to eat even small portions of food. So, I thought I’d share with you what I did to to help with managing PoTS in pregnancy.
These are things that anyone can do to help ease their PoTS symptoms.
TW: Weight loss
Managing PoTS In Pregnancy: An Overview
Managing PoTS in pregnancy can be difficult. To be honest, this is true of any medical condition. There aren’t many pharmacological management options available during pregnancy, as most drugs are deemed unsafe. This makes it even more important for us to have non-pharmacological options available, to help ease symptoms. When my PoTS worsened, I adapted my life as much as I could to best manage my symptoms. I did this with with very little helpful input from medical professionals. The most I ever got from my maternity team was “eat more salt and drink more water.” That’s 101 of PoTS management and I’ve been doing both of these since before I got my diagnosis.
Unfortunately, I was told that if anything, pregnancy would improve my PoTS symptoms. As a result, I wasn’t able to ask about management options for pregnancy or post-pregnancy. While I’ve dealt with things as best I can, I’ve felt unprepared as a result. And I have very much been left to deal with my PoTS symptoms by myself, despite being told that I would receive support.
Managing PoTS In Pregnancy: My PoTS In Pregnancy
Just so you know where I’m coming from with these tips, the PoTS symptoms that became significant and problematic for me are:
- Dizzy
- Fatigue
- Increased palpitations
- Tachycardia
- Nauseous
- Breathless
My heart rate can and will easily spike up into the 150-175bpm zone with no trigger at all. However, there are a few things that are guaranteed to further exacerbate my PoTS symptoms, including:
- Eating
- Heat
- Stress
- Standing
- Sitting for long periods
- Raising my arms up
Things I’ve been doing to manage my PoTS include:
- Eating with my legs raised
- Eating in a cool environment
- Calf pumps
- Increased my salt intake as much as possible
- Increased my water intake as much as possible
- Using my wheelchair
- Staying lying down before 11am, then
- Sitting up in increments, then
- Staying sitting for an hour to let my heart rate settle, before moving to my wheelchair
- Keeping portions of food small – little and often
- Having Complan (nutritional drink) with water to start the day. (The dietician switched this to Fortisip, but this added to my nausea)
- Getting a dietician referral
- Reaching up for things as little as possible
- Using a long handled hair brush (Check out my Aidapt Long Handle hair brush review)
- Not bending down to reach things
Managing PoTS In Pregnancy: Eating
My biggest concern was about getting adequate nutrition. I’m only able to eat very small portions – a small piece of toast (wheat-free is smaller than standard) with ¼ can of beans would be enough to exacerbate my symptoms. As a result, I struggled to maintain my weight during pregnancy. I lost weight and then had a lot of difficulty gaining it back again.
At the start of the second trimester, I had to start using my wheelchair full time to help me manage my PoTS symptoms. This was the point in my pregnancy where I became unable to stand up without experiencing significant symptoms, including dizziness and breathlessness. I had the choice – either push myself too far trying to walk the few meters from the sofa to the kitchen so I could get food, only to end up having to lie on the floor for an hour to recover (and not being able to eat). Or, I could use my wheelchair, get to the kitchen safely and be able to eat a little food.
As well as using my wheelchair, I began to eat with my legs raised. This stopped blood pooling in my legs and allowed me to eat a little more before experiencing symptoms. Not much more, maybe only a few mouthfuls. But, those few extra mouthfuls make a difference when you’re only able to eat a small amount.
I spoke to various medical professionals about my nutritional concerns. Unfortunately, the only person who seemed to listen and want to help was my GP. By this point, I’d already started myself on Complan nutritional drinks. My GP agreed that this was the right thing to do and referred me to the dietician to discuss whether these were the most suitable nutritional drinks for my needs.
Because of the difficulty I had with eating, the hospital did 28, 32, 34 and 36 week growth scans, to keep an eye on Elise’s development. If you’re having difficulty eating, it’s worth asking about these if you aren’t offered them by your healthcare professional.
Managing PoTS In Pregnancy: Self-Advocacy
Something I’ve found really important in managing my PoTS during pregnancy has been self-advocacy. When the first few doctors weren’t able to help me, I kept pushing. I knew I needed help, particularly regarding nutrition. So when other doctors wouldn’t/couldn’t help, I went to see my GP. She’s someone I trust, who knows me and understands me. Not like the obstetric clinic, where I was seen by a different person each time, some good, some not so good.
I’m so glad I went to my GP about the difficulty my PoTS was causing with regard to eating. If I hadn’t, I wouldn’t have got a dietician’s input (though I still didn’t have the correct nutritional support in place by the time Elise arrived.
Knowing your own body and what triggers symptoms is important, especially so in pregnancy. If you were to faint or loose balance because of dizziness and fall, there are risks to your unborn baby. So it’s really important that pregnant women with any chronic illness don’t push themselves too hard.
During pregnancy, I found myself in a bit of a catch 22 with this. The obstetric physio wanted me to practice standing, as this helps the autonomic system to regulate itself. She suggested starting with 1 minute – I wasn’t sure whether to burst into tears or laughter at this!
Wanting to do as I’d been advised, Dan and I gave this a try (we knew that 60 seconds was never going to happen, so aimed to start with 10 and increase as we could). I had my watch on and set to monitor my heart rate so Dan could see it, while Dan had a timer going. After just 5 seconds of standing, my heart rate had reached 175bpm. My vision was distorted, everything sounded very distant, I felt like I was going to vomit and I wasn’t able to respond to Dan when he was asking me if I was ok. My brain just couldn’t think straight. Dan sat me straight back on the sofa and laid me down – that was it for the rest of the day. I was so exhausted I could barely open my eyes.
I’m so glad we did this in a very controlled manner and that I hadn’t attempted this on my own. It’s important to listen to the medical professionals involved in your care and try the things they suggest in a safe manner, but it’s also important to listen to your body. You know best what you’re capable of.
So, those are my tips for managing PoTS in pregnancy! PoTS is a condition that can improve, stay the same or get worse during pregnancy. If you’re wanting to start a family, please don’t let my experience put you off. Everyone is different and no two pregnancies are alike.
Want more suggestions for non-pharmaceutical options to reduce PoTS symptoms? Check out my Tips For Managing PoTS In Summer post.
If you have PoTS and had a baby, did your health improve, get worse or stay the same?
What are your most problematic PoTS symptoms and which non-pharmacological methods help you the most?
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