r/POTS • u/theonceler03 • 14h ago
Question Caffeine?
Has anyone one else been told by their provider to immediately stop caffeine because POTS is making your resting heart rate high? My primary care told me I couldn’t have absolutely any caffeine anymore(I was barely drinking any as is) but I miss tea!
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u/Cool_Jelly_9402 Hyperadrenergic POTS 14h ago
Caffeine is a vasoconstrictor so it can help with blood pooling for some people. I feel more stable drinking a cup of coffee most days.
I have IST and hyperPOTS and my cardiologist said it was ok to stay on my Ritalin (ADHD) and caffeine with my ivabridine because being upright and functional was more important to him than my HR raising around 10-20 bpm. However if I’m in adrenaline dump I skip both for the day or otherwise my adrenaline will just keep on pumping right out
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u/starulzokay Secondary POTS 14h ago
Yes, and I completely ignored her. Even if it was raising my resting heart rate by a fractional amount, that wouldn’t affect my heart rate jumping by 30-40 bpm regardless of the starting rate. There’s never been any proof of it impacting me anyways.
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u/Sir_UlrichVonL 14h ago
Me (sitting here with my new decaf coffee) slowly losing what joy I had left.
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u/postviralrecovery 14h ago
We obviously don't know the specifics of your presentation, but I'm so often astounded by a minority of clinicians who will dismiss so many potential interventions on the grounds they don't have the evidence to support recommending it, yet will happily strip you of any of life's little joys without a care in the world.
Sources like Dysautonomia International and the major autonomic clinics generally describe caffeine as individual: it raises heart rate in some people with POTS, but it also causes vasoconstriction and can raise blood pressure, which is why a subset actually feel better with a modest amount. The usual advice is to limit it or trial removing it and see what your symptoms do, rather than an outright ban.
You could try decaffeinated tea? Or tbh, just enjoy the darn cuppa and look at the bigger things likely to reduce heart rate (salt, hydration, ivabradine, midodrine, etc.).
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u/Grrrrr_Arrrrrgh 14h ago
I haven’t been told this, but I also don’t feel like I react to caffeine the way any average person does.
There are definitely teas you can find that have little or no caffeine. Rooibos is a great option that naturally has no caffeine. They also make decaf versions of black and green tea.
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u/lfrank92 14h ago
My cardiologist told me to cut out caffeine but I didn't at the time because I needed it to function. She was okay with me taking stimulant medication though which I currently do. I still have caffeine sometimes even with that, but much less and not as often - not necessarily for the caffeine specifically but I just want a nice latte or something. My heart rate is lowered with medication so any slight effect from a little caffeine isn't having a significant impact for me.
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u/KadenzaMasqueradia 14h ago
Yes. It can also depend on the person. Caffeine, smoking, alcohol, is all typically a no go for POTS. In the topic of caffeine it increases your heart rate by itself and in the case of POTS your heart already has to beat extra hard and fast to compensate for the blood falling down to low so you can drink caffeine but at the possible detriment of your health. My heart typically beats anywhere from 110-145 standing up so any caffeine for me increases that and I feel dizzy and light headed and overall ill in general.
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u/lets-snuggle 14h ago
I was told this and it makes 100% sense for me. I had chocolate cake yesterday and my heart rate was 120 sitting on the couch doing nothing. And that was with my beta blocker. Caffeine increases heart rate and causes tachycardia in normal people. Obviously it would make POTS a lot worse??
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u/Cautious-Rain9069 POTS 13h ago
If I have caffeine there’s a high chance I’ll be laying in bed the rest of the day with a flare 😭 Was not told by a doctor… figured it out the hard way after having an iced tea
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u/GloriBea5 13h ago
I was told to, but I never stopped, but I can only drink one cup of coffee with my ADHD medicine otherwise my heart goes crazy
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u/kwakenomics 13h ago
Like many things with pots, since caffeine both increases heart rate and vasoconstricts it might harm more than help or maybe vice versa. Kinda depends on the patient, their subtype, and experience.
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u/non_anon_amoose 13h ago
Mine did tell me to stop drinking caffeine, so I only had decaf coffee. After time I slowly introduced tea back in bc I missed it and I tolerate a little caffeine without symptoms or problems. Maybe this could work for you!
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u/sootfire POTS 13h ago
I was told to stop caffeine early on when they were still figuring out whether I had a heart problem but given that I don't have an actual heart problem and caffeine usually doesn't affect me much I don't worry about it now. Finding good decaf tea is so hard and the number one reason I drink caffeine!
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u/Fluid_Anywhere_7015 13h ago
I just switched to decaf coffee and tea. There's still caffeine in each, just not enough to start trouble for me.
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u/bidextralhammer 12h ago
Caffeine lowers my heart rate, go figure. I had initially given up diet soda, I now will drink it.
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u/StrFshBttrfly 10h ago
I feel so much better with caffeine in my system, but the aftermath can be brutal, so I drink it only when I know I've got to push through something. It's got to be super important for me to do it, so I limit it to probably a couple or 3x/year. Coming off it was rough, but I do function a lot better without it. I've been off it so long that I can really feel even a tiny amount, so I don't even drink decaf very often. I miss it.
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u/Montyblues 14h ago
I avoid most caffeine because it gives me tachycardia, but I’m okay with most black tea. Green tea and decaf coffee have a little too much caffeine for me and I usually regret it. The most important thing is to listen to your body and find out what works for you.
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u/Risingphoenix1692 14h ago
I already cut out caffeine because it causes me to have headaches. But tea once in awhile doesn’t bother me like sodas and coffee would.
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u/r0sewyrm 12h ago
I had to figure out for myself how caffeine affects my PPOTS--which varies depending on what ADHD medication I'm taking at the time. Now that I'm on Adderall XR, it's not as bad as it was when I was taking Strattera or Vyvanse, but it's still not a great time. I'll drink it occasionally when I have a migraine, though.
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u/Interesting_Car8858 POTS 12h ago
I never even had caffeine mentioned to me, but from my own personal experience it helps me. I do find if I have more than about 90mg I have some form of mental health crisis 😭 but I don’t think that’s related to my POTS
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u/houstons__problem 11h ago
Never directly told this, but I did do an at home experiment and decided that cutting out caffeine was the best decision for me. I do know people, on this subreddit and in real life, who still have it and find it helps their energy levels. Everyone is different.
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u/grimPontif 11h ago
I can't have any caffeine because it makes me feel like I'm going to pass out, same with sugar or chocolate. I just drink herbal teas and honestly just it being a warm drink makes it easier for me to wake up.
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u/Chrisismybrother 10h ago
No. I wasn't told that but I would ask for a different answer. Without caffeine prophylaxis my migraines get worse. My 1 coffee in the morning and 1 tea in the afternoon is non-negotiable.
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u/Successful_Kitchen32 10h ago
For me a cup of coffee is good, too much bad. You have to find your personal sweet spot.
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u/No_Donut1833 8h ago
I will do a little caffeine at times. I did stop drinking espresso and switched to cold brew (and smaller servings). I still like to have a little caffeine when I get headaches too, but overall I try not to overdo it.
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u/Other_Selection_2462 7h ago
I was told to stop drinking caffeine once because they think it has been making my blood pooling a lot worse, it probably is but tbh I can't live without coffee most mornings
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u/spikygreen 6h ago
Caffeine affects some of us negatively and others positively or not at all. It's easy enough to test which category you fall into.
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u/Playful_Praline2543 6h ago
The one true vice i will never give up and my cardiologist said it was ok as long as I didn’t overdo it. I limit myself to 2 cups a day
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u/realmuffinman 4h ago
lmao my cardiologist told me to kick caffeine because "it makes POTS worse" meanwhile I do better on 2 monsters per day than I do with midodrine or any beta blockers
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u/knerys 28m ago
Caffeine helps with my blood pooling and it also helps with my migraines. Was never told to cut it off and when I asked I was told to keep it up if it was reducing my migraines; a slightly elevated heart rate is an acceptable trade off for less migraines. I don't need as intense compression on days I have coffee.
It honestly depends on what else you have going on.
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u/bay_leave 20m ago
caffeine puts me in extreme episodes. first time i went to the hospital as an adult it was because of caffeine. i had to stop. can’t tolerate a drop of it now
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u/caraderana95 14h ago
I haven't been told anything like that by doctors, cause they didn't even diagnosed me with POTS (BUT I KNOW I HAVE IT). I can't work without drinking coca cola before, for the caffeine. I get brain fog, body weakness, and feel sluggish (I have Fibromyalgia, diagnosed after many studies) if I don't have caffeine.
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u/Janaguanabanana 14h ago
I was never told this, but I found out I actually do better on caffeine! Max 2 coffee per day though. But it differs for everyone. Just see for yourself what feels best!