Caffeine and POTS/Dysautonomia: Why to Avoid and Alternatives to Try

My sister and dad are massive coffee enthusiasts– they cannot start their mornings without that tall cup of joe. My friends swore by 5-Hour Energy and Red Bull, but caffeine and I have never formed that close of a relationship. My roommate would prepare a liter of coffee before class and I would make my own coffee drink: ½ cup of coffee, 2 cups almond milk, and 5 packets of sugar. But even that ½ cup of coffee was too much, and I would soon feel my heart racing for hours.

I realized that caffeine and I would be mortal enemies when an ex gave me a box of caffeinated chocolate balls for Valentine’s Day. As a chocoholic, I immediately downed five of these chocolate balls of terror– only to find out that every two balls was equal to a cup of coffee in caffeine. Let’s just say I never drank water faster in my life to try and flush it all out.

I turned to decaf, which still gave me some palpitations, but who needed coffee anyways? I survived college without the caffeine boost and was fine without it.

But then I was diagnosed with Postural Orthostatic Tachycardia Syndrome, or POTS, and learned with a heavy heart that all stimulants, not just coffee were on the goodbye train.

Sugar, soda, chocolate, coffee, caffeinated teas, sweet tea, desserts… all GONE.

Now let’s refer back to my old coffee drink recipe and my sugar packet preference. Yes, five packets of sugar. Sugar and I are a tale as old as time and it was a rough break up.

Some fellow POTsies may be questioning this advice, but when you have a 65 BPM to 180 BPM within thirty seconds of standing AND you are allergic to beta blockers, you will quickly realize all advice is welcome.

But in the end, was the advice helpful? More than a year has passed since I’ve had chocolate or any caffeinated drink and I have only had sugar a handful of times. Even a small slice a cake, a spoonful of ice cream or a few jelly beans raised my resting heart rate. Sometimes for hours. So I’d say sugar and caffeine are off my radar for the near future.

Although I’m now at the “acceptance” stage in grieving my loss of delicious Ritter Sport Marzipan and Bojangles sweet tea goodness, I still try and find alternatives to quench those sugar cravings.

However, finding alternatives that also work with my old and newer dietary restrictions are no easy feat.

Is it possible to make a brownie that is gluten, dairy, soy, nut, and sugar free? Not to mention low histamine.

A year of struggle has led me to some surprising and yes, TASTY goodies and I want to share this informational gold with you that is MCAS friendly and without the top food allergens:

  1. Carob!

Carob has been an interesting new addition to my pantry. It tastes like a slightly burnt version of dark cocoa and can be an excellent caffeine free cocoa substitute for baking and for hot cocoa. Personally, I love Chatfield’s carob powder. It is gluten free and doesn’t have any additives in it. Chatfield’s also has the only carob “chocolate” chip I’ve ever found that is also dairy and gluten free. And a bonus is that it’s sweetened with beet sugar!

This recipe will get you back to those brownie days without making your heart go crazy!

Substitutions: I use stevia or a mixture of stevia and coconut sugar (if I’m feeling bold) instead of regular sugar and dairy/soy free butter.

2. Chamomile Tea

As a southerner, I love me some sweet tea on a hot summer afternoon. Unfortunately, that is a double whammy, as sweet tea contains both black tea and sugar. Instead, I have created my own “sweet tea” for summer days:

Heidi’s Summer Sweet Tea

Bring 4 cups of water to boil in a saucepan. Add 2 chamomile tea bags and bring to a boil. Add ½ cup of blueberries, turn off the heat, and let steep for 10 minutes with the lid on. Pour tea into a pitcher, then add 6-8 basil leaves and stevia to taste. Refrigerate until cold. Enjoy!  

Note: You can also use mint tea bags as well!

3. Stevia

STEVIA (stee-vee-a)!! Stevia is the best of the best for sugar alternatives and actually comes from a plant. It has a glycemic index of 0, meaning it will not affect your blood glucose levels. No sudden bursts of sugar, no insulin spikes, and no icky racing heart. It does taste somewhat bitter and I find that people either love it or hate it. Luckily, I love it, so it has been a Godsend. You can buy it in either powdered or liquid form and I find powdered works better for baking, while liquid works better as a drink sweetener. Careful on the stevia though, as a little goes a long way!

4. Izze Sodas

If you are a Whole Foods fan, you have probably come across Izze sodas. Did you know that they are made with no added sugar? They are a great soda alternative for those who are soda fans. But warning to those following a FODMAP diet– they are sweetened primarily through apple juice, so these may not be the sodas for you. Also, watch out for the grapefruit flavor– no one wants to mess up their cardiac meds with a food-drug interaction. 

5. So Delicious Coconut Milk No Sugar Added Icecream

For many years, the So Delicious dairy alternative food brand has been a personal favorite. They have never failed me, even to this day. Can you believe it? A dairy free, soy/almond free ice cream without added sugar? I have only seen it available at Whole Foods and it does have a hefty price tag, but sometimes you just gotta treat yourself to some ice cream. Try adding cherries and a drizzle of maple syrup to their no sugar added vanilla and enjoy a POTS/MCAS friendly cherry garcia!

 

8 Comments Add yours

  1. I know this is an old post but I just found it, I too have POTS and was diagnosed in 2017, in 2018 I got pregnant and my tachycardia went crazy. I started taking natural calm magnesium citrate and IT TOOK MY TACHYCARDIA AWAY. I asked my dr about it and she said that magnesium is a natural beta blocker. I’ve tried other forms of magnesium but citrate works the best. I actually started taking it while pregnant as a stool softener, needless to say it has many benefits. I’m glad you listed chamomile tea as a safe alternative, I’ve been trying to find something to help me sleep/relax but it seems like most herbs out there either lower blood pressure or cause dizziness! So frustrating.

    Like

    1. Heidi says:

      I’m glad it worked for you! I love magnesium!

      Like

  2. Alex. says:

    Hello and amazing blog! Thank you for putting that information up and sharing your story! I am just browsing the web in these days of quarantine trying to figure out why I appear to be hypersensitive to stimulants and everything in general – exercising, rapid body changes, stress, stimulants, and especially those that trigger norepinephrine. So in these lockdown days I can’t really see a cardiologist which I plan to do, but POTS has been on my lookout for some time. So thanks for sharing your story and I just want to ask how you got diagnosed? I am 29 years old and there is a drawback because all doctors generally dismiss any underlying medical conditions in young people. However I plan to get to the bottom of this, because my BF if 39 and he has far superior heart rate. My BP is low, everyone on my family’s female side is like this. But my BP can jump to 150 in seconds when I exercise and is often high when I am at home, standing at about 75-80-90. I would be really thankful is you can share about your diagnosis. I am thinking of asking for a 24-hour Holter and getting an echograph to rule out any serious disease. Another thing. I seem to be responding really well to beta-blockers and I am really sorry that they don’t work for you :/ They have been a lifesaver. Your determination and commitment is inspiring, I wish you all the best and stay safe 🙂

    Like

    1. Heidi says:

      Hi Alex! I was diagnosed by a poor mans tilt table test, aka by standing. Luckily for a diagnosis, my POTS at the time was pretty severe so I’d have over 100 bpm change from sit to stand within seconds. I was also an EMT which I think helped because it gave me more “cred” to the doctors when I said that something was wrong. I actually was living in India when this first started and it took about two weeks of aggressive testing for everything else (in which I was requesting most of the stuff) there then a week in the US being admitted at the hospital for a heart ablation that didn’t end up happening because they found out it was POTS for a final diagnosis.

      I’d say the most important thing is to find a POTS-friendly cardiologist in your area and go to them with a log of heart rates and blood pressures. I would suggest getting a waterproof chest strap like the polar to wear when doing stuff that shouldn’t cause tachycardia in people without POTS, like showering and standing still. They’ll do a heart monitor to make sure your rhythm is fine but to me those monitors don’t always show the real picture POTS-wise like recording examples of a sit to stand and then standing still + showering.

      I hope that helps!

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s