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Thoughts on coffee after POTS improves?


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I never really drank coffee until I was 18, and even then I only had one cup a day if that, sometimes two if I needed it. However, once I realized it made me feel awful and I thought it caused my anxiety episodes (before I knew that these episodes were POTS) I only drank it once or twice a week and eventually stopped it all. 

Now, after a few months, my POTS is way better and is on the way to being almost gone which is a miracle, but I do still have a long road of building my body up to exercise and be back to normal functioning. I was wondering if anyone who has gotten a little better with POTS started coffee again, or is that a bad idea? I don’t plan on drinking coffee until at least December to give my body more time, but to be honest I’m afraid to ever drink it again in case it brings my symptoms back. I know we’re all different, but I’m curious because I miss my iced coffee in the mornings. 

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Try decaf. Seriously. I have hypoPOTS, so I can drink a pot of coffee and then take a nap, provided it is daylight outside. Frustrating!

Our bodies seem to do the opposite of what is logical. Decaf does still have some caffeine, but maybe it would be low enough that you can tolerate it. Most of us find what works by trial and error, even my doctors do that. I would say pick a day that you can have a bad day and experiment. My experiments tend to wear off within 48 hours. 

Maybe others will comment who share your kind of POTS.

Drinking a mocha now, but I have a doctor's appointment in a couple of hours, so no nap for me.

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Depending upon my doctors I have mixed reactions from them about drinking coffee. The colorectal surgeon thinks it is evil and wants me to never drink a drop. The cardiologist is fine with me having two twelve ouncers in a day. The brain institute that did my memory testing has a glorious all you can drink keurig bar in their waiting room. For me, coffee is my go to stimulant. I have next to no energy and my numbers frequently drop into 70s/40s. The supermarkets here all have gourmet beans so I've been enjoying the world of caffeine. Right now I'm drinking Costa Rican, after the rains

If it makes you feel better do it, but don't be foolish and go overboard with a quart of espresso. Find a brew that works for you and drink an eight ouncer as needed. If it makes you feel hyper drink less and/or find a weaker brew.

 

 

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I have hyperPOTS and I tolerate 1 cup each morning without any problems. I think it is up to you - if you miss drinking coffee and you would like to slowly introduce it back into your life then I would totally go for it. See what happens - that is all we can do. It's not like a cup will start a flare … as far as I know. 

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I also just drink 1 cup in the morning and that's it. Even the odd times when I have more or less it doesn't really make a difference for me. For some, they tolerate soda better than coffee, but that's up to you. 

Try it out and see what happens! If you don't feel well after, then you know for sure :)

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Personally if I were lucky enough to ever recover from POTS I wouldn't risk touching anything with a track record for exacerbating your symptoms. I can't tolerate caffeine at all since developing POTS, and even when I was healthy coffee used to have a strong diuretic action for me. Caffeine is a known diuretic. Some people do seem to benefit from caffeine as it is also a vasoconstrictor and can raise BP which is helpful for some dysautonomic types - we are all very different - but I think I would be wary if you are someone who hasn't done great with it in the past. I drink lovely green mint tea nowadays which is caffeine free and I don't miss caffeine. There are some great caffeine free alternatives. I was also never much of an alcohol drinker prior to POTS and also cannot tolerate that at all now either. 

My POTS was triggered by blowing up a water bomb which I thought was a balloon, i.e. a very forceful valsalva. If I recovered, I wouldn't even risk blowing a whistle or candles on a cake:)) !

B x

 

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3 hours ago, KiminOrlando said:

Try decaf. Seriously. I have hypoPOTS, so I can drink a pot of coffee and then take a nap, provided it is daylight outside. Frustrating!

Our bodies seem to do the opposite of what is logical. Decaf does still have some caffeine, but maybe it would be low enough that you can tolerate it. Most of us find what works by trial and error, even my doctors do that. I would say pick a day that you can have a bad day and experiment. My experiments tend to wear off within 48 hours. 

Maybe others will comment who share your kind of POTS.

Drinking a mocha now, but I have a doctor's appointment in a couple of hours, so no nap for me.

Thank you @KiminOrlando, decaf was something I didn't consider. I don't mean to be nosy, but I notice that your tag says Kim in Orlando. One of the reasons my POTS is starting to clear up so quickly is the fact that I went to a brain center in Orlando. They help a lot of POTS patients (but say that they can't always treat them, it depends on what causes the POTS). I was wary at first because my autoneuro test from Mayo said I had no evidence of dysfunction in my autonomic nervous system, but the brain center found plenty of things wrong with my brain that I didn't know about. I still have some other symptoms, but I am so much more mobile and can stand for a long time. The downside is they don't take insurance and it's very expensive, but if you want to try it, I'd look them up! It changed my life and I'm on the road to recovery already. 

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@bombsh3ll I understand your caution. This is why I'm asking, because I am a very cautious person and I would hate to mess anything up. My POTS does not usually cause intense fatigue, so I don't necessarily need coffee it's just the act of drinking it and the taste that I miss. I will also need it when I return to my normal life and can't rest as much. Also, I know I don't know your story, but I wouldn't lose hope on recovering from POTS! It's chronic but so many people tell me they get to almost normal even if it takes years. I am not fully recovered, but I am trying everything I can to get better including acupuncture, brain centers,  reiki, chiropractic care, diet, some meds and supplements and I'm slowly making progress. 

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Since I have gotten better I have tried cappuccino. I never liked regular coffee unless it had lots of sugar and creamer. I can not tolerate a cappuccino. It makes me tachycardic and jittery. That being said I can drink 3 bottles of Mt dew and it not bother me. Doctors seem the vary on their opinion of coffee. Most say black is fine for most health issues. I think you just have to experiment. It might have been just that day was a bad day to try considering I had already had Mt dew. I just don't miss it that much at this point so I don't bother. That being said every morning I have a 16 oz. bottle of Mt dew to help jolt me awake. Without it I feel dazed and out of it for hours after I wake up. 

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17 hours ago, Steph2397 said:

I went to a brain center in Orlando.

Would you mind sharing the details of the centre? I am always interested to learn more about novel therapies and although I would not be able to go there physically or financially I would love to read about what they are using. Others on here may also find the details helpful.

B x

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I tried 1/2 a decaf mini pumpkin spice latte from Starbucks the other day... my body did not process the caffeine properly. It made me so sleepy yet restless and just very strange feeling.

turns out I can tolerate synthetic caffeine from soda; but not natural caffeine from coffee or tea.

 

try very little first to see how you react. 

I’m literally only allowed a few sips of soda a day before I go overboard and it’s just enough to give me a boost and help me. 

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@bombsh3ll yes! It’s called Plasticity Brain centers in Orlando. It’s the only one of it’s kind in the world so if you google that it’ll come up! People travel from all over to go. They treat all kinds of patients including stroke, MS, autism, dementia, concussions and POTS too! They create a unique treatment based off of every patient and it’s all very personal and all natural no invasive examinations or medications. They can’t help every POTS patient, it depends on what causes the POTS, but I thought my POTS wouldn’t work with this treatment but it worked for me! 

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I think many people can tolerate caffeine/coffee while their POTS is active. In fact many of us need it to keep up our BP.  Others obviously can’t tolerate it at all.  It is something that leaves your system quickly. Unless your doctor tells you you shouldn’t, it’s probably safe to try it every now and then and see what happens.  If you want to be really safe try just a half cup or a few sips at first.

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