andybonse Posted August 7, 2013 Report Share Posted August 7, 2013 Hi,I was reading caffeine is a vasoconstrictor, so shouldn't it help us if blood pools / falls down to our legs? I wouldn't mind drinking a cup of tea a few times a day, I havent since I got pots and was too scared to! Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted August 7, 2013 Report Share Posted August 7, 2013 Andy,good question.I've cut coffee and tea cold turkey as soon as I became symptomatic (I didn't know I had POTS back then) as I was/am afraid it would make my tachy worse. (I get tachy episodes at rest though). There are days when I'd really like to enjoy a cuppa, so I'd be interested to learn what other people's experiences are.Alex Quote Link to comment Share on other sites More sharing options...
Kooky Posted August 7, 2013 Report Share Posted August 7, 2013 Hi Andy,Everyone is different, obviously, but for me tea doesn't have any adverse effects at all. I have one, maybe two cups a day and am perfectly fine. I can't tolerate coffee anything like as well though. Fresh ground coffee is a complete no go as it makes me tachy and feel absolutely awful. With instant coffee it seems to be a game of chance depending on how funky my body is being on the day. Sometimes I can have a cup and be fine and other times it has a similar (but not so severe) effect as fresh ground coffee so when I fancy coffee it depends on how brave I'm feeling as to whether I have one or not.I also can't tolerate energy drinks. I only tried one once and have been too scared to try again. I got the shakes, feel absolutely dreadful to that point of having that feeling of impending doom and my heart rate went through the roof.Unfortunately I think the only way to find out how it affects you is to try a cup and see. Quote Link to comment Share on other sites More sharing options...
Katybug Posted August 7, 2013 Report Share Posted August 7, 2013 I, think the caffeine question is a slippery slope for us. I mostly can't drink caffeine and have to do decaf. But everyone once in a while, I feel like I need a jolt of caffeine in a very small amount (like making coffee with 1/3 caffeinated and 2/3 decaffeinated coffee grounds). It will sometimes allow me to get a little more usable time in my day. But sometimes it backfires and it makes me tachy and have tremors amongst other symptoms. I have to be prepared to pay for it when I drink it. I can't drink caffeinated tea anymore because there isn't a way to dilute the caffeine like I can with coffee. Quote Link to comment Share on other sites More sharing options...
Hope Posted August 7, 2013 Report Share Posted August 7, 2013 I accidentally had a cup of regular tea last week instead of decafe. It wasn't good, My resting HR was 114, I was shaking and getting pricklies down my back, and I felt very panicky. I couldn't figure out what was wrong for about an hour and then I realized what I had done. I had been in a fog when I made the tea and grabbed my husbands regular tea bags instead of mine. Now I keep my decafe in a in a totally seperate area. It may or may not help the pooling, but my body can't take the caffine. Quote Link to comment Share on other sites More sharing options...
kayjay Posted August 7, 2013 Report Share Posted August 7, 2013 I have hyper pots- I can have some caffeine but I cannot tolerate licorice. For a few years I wanted nothing to do with coffee. Now it depends on the day. For me it is a real "listen to your body thing". I bought some tea that has some licorice in it. Oops. The second time I drank it I realized that it needed to go into the trash! Quote Link to comment Share on other sites More sharing options...
Jan Posted August 7, 2013 Report Share Posted August 7, 2013 I gave up caffeine when I got POTS. The doctor at the Mayo suggested I try drinking caffeine in the AM because it vasocontstricts and getting going is really hard for me when I get up. It really helped me so now I drink Diet Pepsi on ice (so it gets watered down and is more hydrating) through out the day. I HAVE to drink it during a movie or if I am going to sit for awhile or I get super symptomatic and a headache.For me, my blood pressure drops first and then my heart races to keep me from fainting. So my theory is that the caffeine prevents the blood pool in my legs so it doesn't cause tachycardia. For people whose heart races first, and then their blood pressure drops to lower their heart rate, I would think the caffeine might make their symptoms worse. Quote Link to comment Share on other sites More sharing options...
YolaInBlue Posted August 7, 2013 Report Share Posted August 7, 2013 I drink 2-3 cups of tea a day without a problem. I make leafy black or green tea.I can't have more than a sip of coffee, though. It makes me tachy and jittery.My heart rate is controlled well with medication nowdays,but I have blood pressure drops throughout a day and moments of feelig dizzy, black dots in my eyes.I don't see any difference on days I don't drink tea, so for me it doesn't have a possitive or negative effect. Quote Link to comment Share on other sites More sharing options...
khaarina Posted August 7, 2013 Report Share Posted August 7, 2013 Caiffiene helps me a little when I need a little extra vasoconstriction on top of my Midodrine or before it kicks in. I just have to be careful not to dink too much or it will make my tachy worse. Quote Link to comment Share on other sites More sharing options...
corina Posted August 8, 2013 Report Share Posted August 8, 2013 For me coffee is a huge help. I always have two mugs in the morning and two in the evening (after dinner). Quote Link to comment Share on other sites More sharing options...
KittyMama Posted August 8, 2013 Report Share Posted August 8, 2013 For me coffee is at best helpful and at worst has no effect. As far as I can tell tea has no effect. I have them both pretty frequently.If you want to see how they affect you, I would recommend choosing a day when you have nothing planned, and making a really weak cup of green tea. If it doesn't bother you, then on another day you could try something stronger. But I would proceed with caution, since it seems like some people have a really bad reaction to it. Quote Link to comment Share on other sites More sharing options...
Potsluck007 Posted August 8, 2013 Report Share Posted August 8, 2013 For me I stopped Drinking coffee when I got sick didn't know I had Pots, I haven't had a coffee in six months, Two weeks ago I started drinking coffee half-Coffee and Half water, one a day after drinking the coffee I walk for an hour. I used to drink 8 to 10 cups of coffee a day sometimes two or three an hour. I think I might try the cold coffee Starbucks coffee , maybe the heat increases the body temperature of the hot coffee. I get a warm feeling throughout my body after drinking hot coffee. But then again it might be from the walk. Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted August 9, 2013 Report Share Posted August 9, 2013 I can tolerate one cup of coffee first thing in the morning after salt/water and medications. It helps get me going so I can walk. I don't tolerate regular tea as it causes nausea. Must be the acid. Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted August 10, 2013 Report Share Posted August 10, 2013 It is interesting to see how many of us quit drinking caffeine inititally. Prior to my diagnosis (I searched for 4 years and back then, I just thought a resting HR of 95 was normal) I'd max on caffeine... we're talking popping caffeine pills (200mg) throughout the day. It really effected my resting heartrate, but my standing heartrate didn't get worse. About 6 months ago I started really limiting caffeine because I didn't want the "false" energy and I didn't want anything making the tachycardia worse when I'm taking beta blockers to slow it down.I recently have added caffeine back and I am so happy about this decision! Too much caffeine (100mg or more) at a time increases my tachycardia quite a bit, to the point it isn't worth the extra energy or vasoconstriction. However 40-70mg (I know big window) does the trick for me. It slightly increases my heartrate, but not too bad, and it gives me a little boost. I do notice blood not pooling so easily in my legs after taking caffeine, but not so much that I would proclaim caffeine a miracle drug in my case. I take it in the form of caffeine pills cut into smaller portions most often (I love coffee but have easily stained bonding). I am switching over to guarana tablets soon which naturally has caffeine. Jan -- I think that is an excellent thought on when caffeine may help versus when it may hurt. Quote Link to comment Share on other sites More sharing options...
AshleyPooh Posted August 10, 2013 Report Share Posted August 10, 2013 I find that caffeinated coffee makes my heart race, so I avoid that. Decaf coffee is okay, I just make sure to drink a lot of non caffeine fluids behind it.I drink tea everyday. I have found decaffeinated breakfast tea, which is awesome. There are some teas I have that aren't decaf, but I make sure to test them out and see how strong they are. Don't drink caffeinated tea in the evenings, just decaf.I'm pretty intolerant to caffeine. Makes me shaky, and causes heart palpitations like really bad. The cardiologist said I should just stay away from it period, but that's hard sometimes, especially when you are a tea junky! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 19, 2015 Report Share Posted June 19, 2015 Interesting read Quote Link to comment Share on other sites More sharing options...
Nymph Posted June 19, 2015 Report Share Posted June 19, 2015 I drink 2-3 cups of tea a day, mostly black. I make sure to stop by 2 or 4 pm, depending on my bedtime. I drink coffee occasionally - more so when I'm exhausted and can't function otherwise, or as a treat (espresso with whipped cream!). Sometimes coffee can trigger a migraine for me, so I have to be careful about how I feel. Also it can increase the anxious stomach feeling that goes along with the worst POTS symptoms. If I am having those I actually crave caffeine, but it's dangerous! So it depends. Most of the time, I think that it helps me - probably the vasoconstriction. I find that tea is also quite soothing. Quote Link to comment Share on other sites More sharing options...
statesof Posted June 23, 2015 Report Share Posted June 23, 2015 I can't tolerate caffiene at all even decaf tea/ coffee has too much caffiene for me. It might be worth while to try decaf first because it still has some caffiene and then move over to regular tea if you tolerate it well. Quote Link to comment Share on other sites More sharing options...
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