Gena Posted August 27, 2004 Report Share Posted August 27, 2004 I have read contradictory reports on whether POTs patients should drink caffeine or not. I no longer drink caffeine but was considering trying a little bit of green tea or soda in the mornings to help elevate my BP. Has anyone had luck with this? I know some people can't tolerate it at all.Normally my HR and BP are quite low, except of course when I feel anxious or eat something that my body doesn't like, then my pulse goes up. My worst episodes of tachycardia are at night if I wake up to use the bathroom and try to stand up. My BP gets very low while I'm sleeping. Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted August 27, 2004 Report Share Posted August 27, 2004 I have NCS and POTS, I drink 10-12 oz of brewed coffee in the mornings and it seems to help. I couldn't tolerate Florineff or Proamitine. I have a pacemaker but it hasn't helped. But the coffee does. On mornings when my digestive system just can't handle it I drink tea or a Coke. It's really the only thing that has helped. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted August 27, 2004 Report Share Posted August 27, 2004 Ive found that caffiene makes me more spaced out and dizzy rather than less = i get very cold and my arms get all cold and prickly - and when you have to get a blood test and they cant find a vein its frustrating Quote Link to comment Share on other sites More sharing options...
JLB Posted August 27, 2004 Report Share Posted August 27, 2004 I have low BP, and the coffee is very helpful. I tend to get the irregular h/b when eating, as the blood rushes to my stomach, and I get dizzy and short of breath - a small cup of coffee evens me out in a few minutes. One of the worst episodes I've had to date was abruptly stopped after a few sips of coffee, so I have a little bit 2-3 times a day. Quote Link to comment Share on other sites More sharing options...
goldicedance Posted August 27, 2004 Report Share Posted August 27, 2004 I find that caffeine helps in the morning. Also, have you tried to drink V-8--it is loaded with salt? Quote Link to comment Share on other sites More sharing options...
leah1321 Posted August 27, 2004 Report Share Posted August 27, 2004 Hey Dawg Tired- I can't do soda or tea caffeine either. Only coffee! Weird, right? I think that caffeine does help raise bp. It also causes us to have bad symptoms. It is great in a quick fix, or if you have really low bp in the mornings. Vanderbilt told me to try caffeine every day. However, it makes me sweat in a weird way, it dehydrates very quickly (you MUST PUSH FLUIDS AFTER YOU DRINK CAFFEINE), it makes my hr irregular, and it bothers my stomach. It also makes my migraines better when used sparingly and it helps a huge amount with brain fog for an hour or two so i can get work done. If I am in the mall and I get dizzy or cold sweats or any other sorts of dysautonomia signals of low bp/low blood volume to the brain (perfusion or profusion? I think per-, but I have not gotten much sleep this week and am so so so out of it, sorry), then caffeine is fantastic. Again, remember to rehydrate because caffeine dehydrates quickly. The best thing in the morning is to drink 16 oz of water 20 minutes before you get out of bed and then if you still need caffeine, give it a try. Only have small amounts at first-we are very sensitive. Start with a half-caf and go from there. Caffeine amounts in different drinks is listed online. Just google it. You would be surprised. Quote Link to comment Share on other sites More sharing options...
blackwolf Posted August 27, 2004 Report Share Posted August 27, 2004 Personally, caffeine is the worst thing in the world. I hate the "high" of it and my heart races away(140) even on a very small amount. I even have trouble with chocolate, especially syrups. I currently am useing theophylline, an asmtha drug to help control my tachy, chest pain and shortness of breath. The change has been remarkable. I have more stamina and feel much more awake then before. I still have trouble but not like before. With this med you cannot have caffeine anyway so I just don't worry about it.Everyone is different, I hope you find what works for you.Blackwolf Quote Link to comment Share on other sites More sharing options...
justin Posted August 28, 2004 Report Share Posted August 28, 2004 caffeine is the worst possible thing i could do to myself. it's more terrifying to me than the prospect of, say...hiking for 10k with a 50 pound backpack.instant symptoms. Quote Link to comment Share on other sites More sharing options...
ethansmom Posted August 28, 2004 Report Share Posted August 28, 2004 Strangely enough, I don't notice much difference when I drink caffeine. I drank a whole soda the other day and felt just the same afterwards...although I try to avoid it ALL the time because of the sugar content, and I don't care for coffee. Maybe if I took my HR or BP I'd notice a change... Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted August 28, 2004 Report Share Posted August 28, 2004 Sometimes I have a little coke when i'm sluggish. I used to think my BP got really low in the mornings---70/something, but I was raisng my up up on my TV cabinet making the reading inaccurate. It's usually 90 /over something. If i'm needing to concentrate or just need a little pick me up----a half of a coke does it. I just love Coke... If I have too much---I get the skippy thing with my HR.I can tolerate chocolate-----thank GOD....................! DOVE milk chocolate, or even the dark......................love it. Only 1/3 of the bar though---then I give the rest to my husband. I don't want it to end up on my a--......LOL Julie Quote Link to comment Share on other sites More sharing options...
morgan617 Posted August 28, 2004 Report Share Posted August 28, 2004 no caffeine, no chocolate. no fun. i love diet coke but can't do nutrasweet either. i miss coke a lot. but not worth how it makes me feel. morgan Quote Link to comment Share on other sites More sharing options...
POTSparent Posted August 28, 2004 Report Share Posted August 28, 2004 For my 17-yr old POTS/NCS daughter, caffeine isn't a problem in moderation. However, since high fluids intake is required to help ward off your symptoms, one needs to be careful to avoid that your high fluid intake is including too many drinks with caffeine. That is, you've probably got to be very conscious to avoid caffiene most of the time, but don't feel that you can't indulge altogether. Quote Link to comment Share on other sites More sharing options...
shelby Posted August 28, 2004 Report Share Posted August 28, 2004 I don't drink caffeine at all really. I was told not only was it a bad thing for my migraines, but makes you have to go to the restrooom more frequently. My mom and dad have cut back too, using a half and half decaff/caff coffee that Foldgers makes. I never got hooked on coffee so that wasn't a prob for me. I do however like the chocolate and the soda. I drink Caffeine Free Pepsi and I don't find that it tastes a whole lot different. As for the chocolate I just eat it in moderation. One chocolate thing a day if that. That way I don't have to worry about the caffeine thing. There are so many more things that have caffeine that people are not aware of though. I have a list of them and I will try to get some on here so you can have that information. Shelby Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted August 29, 2004 Report Share Posted August 29, 2004 Well, now! THERE'S a mixed bag of responses! I guess as usual for us it is a trial and error situation. I will say that I started out avoiding caffeine like the plauge after being told it was the cause of all my problems ; then within a year I had come full circle to discovering that it was the only thing that DID help. I think it just illustrates that we don't have a "magic pill" or a one size fits all solution. JLB, I hope we have been of some help! Quote Link to comment Share on other sites More sharing options...
Gena Posted August 29, 2004 Author Report Share Posted August 29, 2004 Thanks everyone for the replies. Yes it's certainly a mixed bag of responses. I did try drinking some caffeine and here's the result of my "trial study". I had one cup of green tea mid-morning with just a teaspoon of honey and then another cup mid-afternoon. My blood pressure was actually in the normal range by the afternoon up through the time I went to bed. This was a first for me, as my BP is always quite low. I was a little tachy when I awoke in the middle of the night to go to the bathroom, although that is normal for me. I didn't check my BP in the middle of the night to see if the caffeine was continuing to keep it normal or not. Will try that in the next "study". I'm beginning to feel like a lab rat! Anyway, my body seemed to tolerate it okay, so I'll try it again. Thanks! Quote Link to comment Share on other sites More sharing options...
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