gertie Posted September 12, 2009 Report Share Posted September 12, 2009 Do any of you drink regular caffeinated coffee? I had to go to decaf about 25 years ago because caffeine made me to hyperactive & triggered migraines. Now they are telling us seniors it is good for us to drink a lot of caffeine coffee. I would like to have more energy but I don't think I can go that route. Thanks. Quote Link to comment Share on other sites More sharing options...
Rachel Posted September 12, 2009 Report Share Posted September 12, 2009 I have a cup of coffee every morning, and it helps me. I recently tried to go off of coffee, but was worse off without it. It might be worth trying again, but that's up to you. Everyone is different. Some of us can tolerate coffee, others cannot. Rachel Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted September 12, 2009 Report Share Posted September 12, 2009 I use coffee as a tool, as a medicine and very thoughtfully.Coffee does get my bp up and hr down. I make a weak brew so I am hydrating too. The coffee ritual makes me get hydrated and better able to function. What I learned from experience of drinking coffee for years, is that you can become tolerant and then need more. Now, I have to come off coffee every couple of months for a couple of weeks and then I can use it again.I also have success with taking a pure caffeine tablet and cutting it to get the dose I need. The tablets are usually 200 mg of caffeine, which is too much for me at one time. I take either a 1/4 or 1/2 of a tablet and then if needed, I take more. It is good to be able to manage just how much I take so I don't take too much for just the management I need. If not drinking my coffee nectar, I usually need about 100mg of caffeine to help.You must try things out in your own body! Even with my hyperadrenergic POTS, my condition is not worse with coffee/caffeine. I am quite improved with it.best regards,tearose Quote Link to comment Share on other sites More sharing options...
chipper Posted September 12, 2009 Report Share Posted September 12, 2009 Coffee would make me so sick, for at least ten or more years, but now about two to three cups, through out the day, with food is ok. That is because of the improvement in my dys. I still have lots of dizziness. Standing, light house work, and trying to exercise makes me sick. I spend my days in and out of a recliner. I do my best to stay out of the bed in the day time. Rest and as much movement as I can do, is my best medicine. I have so many migraines, but not from caffeine. Hormones cause migraines for days in a row and heat does the same.Mary Quote Link to comment Share on other sites More sharing options...
potsgirl Posted September 12, 2009 Report Share Posted September 12, 2009 I feel absolutely horrible in the morning, and the first thing I do when I successfully make it down the stairs is to celebrate with a cup of coffee. I just have one cup (ok, a rather large one) every morning first thing, and I believe it helps me start to function. I never drink pop or have other caffeine, but my morning coffee stays. Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted September 12, 2009 Report Share Posted September 12, 2009 I don't like coffee (smells great, tastes terrible) but I drink a TON of hot tea. Probably nine cups a day, though I reuse teabags, so probably three tea bags for those nine cups. I feel better when I drink a lot of water, and the tea warms me up in my cold office.The caffeine seems to bother me less than not drinking enough. And tea is supposed to be very good for you.Amy Quote Link to comment Share on other sites More sharing options...
potsgirl Posted September 12, 2009 Report Share Posted September 12, 2009 Yes! I do the same. I drink several cups of decaf green tea throughout the day. Love it. Quote Link to comment Share on other sites More sharing options...
daisy Posted September 12, 2009 Report Share Posted September 12, 2009 Ughghg......caffeine is NOT my friend! I have to drink decaf everything - coffee and tea. I usually have some decaf in the morning and drink water or decaf iced tea throughout the day. I guess it depends on what type of POTS you have or what else is going on with your body. I definitely cannot have caffeine..... Quote Link to comment Share on other sites More sharing options...
carinara Posted September 12, 2009 Report Share Posted September 12, 2009 coffee has always been a big no go for me. I cant tolerate it at all, it makes me shaky and tachy. Quote Link to comment Share on other sites More sharing options...
Jan Posted September 12, 2009 Report Share Posted September 12, 2009 Diet Pepsi is my caffeine of choice.Caffeine is a vaso constrictor so it raises BP. I drink the Diet Pepsi on ice through out the day. I find it really helps, especially if I have to sit for awhile, like if I go to a movie. If I sit for a long time without it, I get a terrible headache. I quit all caffeine for a year when I first got sick. They Mayo clinic suggested trying it.For some it helps, for some it hurts. I have the kind of POTS where the BP drops and then the heart races to bring it up. Keeping my BP from dropping lessens the tachycardia. I would guess if you have the other kind, where the heart races, and the BP drops to bring it down, the caffeine might not help. Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted September 13, 2009 Report Share Posted September 13, 2009 Our ANS issues are like fingerprints. UNIQUE! What helps one will not help another.I've known folks with horrible POTS who drink coffee with caffeine all day to FUNCTION at work or even around the house if they have kids. If I drank to much would give me shakes. Then again, I have tremors/shakes that vary wildly with no caffeine interference.That said in the A.M. unless queasy I MUST HAVE COFFEE w/caffeine. I get the Maxwell House LITE with half the caffeine as I detest weak coffee flavor. I miss drinking real coffee and better quality but MH works for me like medicine. I might have a glass in summer time in afternoon and make Iced Coffee.Coffee is my friend.Oh and Decaff can affect me too..with bladder stimulation ...its the other xanthines in the decaff that does it. Quote Link to comment Share on other sites More sharing options...
erik Posted September 13, 2009 Report Share Posted September 13, 2009 I would say that a lot can change in the body in 25 years so it could be worth revisiting cautiously. I get a modest benefit from it overall, but like tearose have to quit it periodically to keep it "working". Also, I must keep a flow of plain water interspersed too... otherwise it can be a net negative. I haven't tried caffeine pills yet but as others mention, those could be handy to know (and minimize) a trial dose. Maybe being diligent about staying hydrated when trying could help?? Quote Link to comment Share on other sites More sharing options...
Tammy Posted September 13, 2009 Report Share Posted September 13, 2009 I think this is one of those things that depends on heart condition, etc. Also hyperadrenegic form versus non-hyperadrenegic. My cardio has told me to never drink coffee or any products with caffeine, including chocolate, etc. It really varies by person, but yes, I've read that for heatlhy individual without heart rhythm problems, a small amount of coffee is good. Quote Link to comment Share on other sites More sharing options...
Janey Posted September 13, 2009 Report Share Posted September 13, 2009 This is such a hard one. Coffee tends to be my "back up" if it's all going wrong. If I'm having a terrible symptom day and I just need to keep going because maybe I'm working to a deadline or it's somebody's birthday and I have to be there, I will drink coffee. It will do the job for the next two-three hours to keep me awake and moving. But I can't see myself "using" it every day. How about doing half a cup of decaf with milk/soya and then monitoring you reactions?Janey Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted September 13, 2009 Report Share Posted September 13, 2009 My cardio has told me to never drink coffee or any products with caffeine, including chocolate, etc.Oh no! I hope you aren't a chocoloholic like me! That would be awful! Quote Link to comment Share on other sites More sharing options...
green Posted September 15, 2009 Report Share Posted September 15, 2009 Has anyone compared energy drinks to coffee? I respond better to sugar-free energy drinks than coffee. I was not initially inclined to think that the extra ingredients in energy drinks (the herbs and B-vitamins) played a role in my greater tolerance of them, but after experimentation I think that the taurine may suppress caffeine related palpitations. I plan to test this by combining a taurine supplement with coffee. A big downside to caffeine (for me) is the diuretic effect. I have heard that there is a chemical similar to caffeine, called paraxanathine which is less of a diuretic. Wish I could get paraxanathine in a drink. Quote Link to comment Share on other sites More sharing options...
erik Posted September 16, 2009 Report Share Posted September 16, 2009 Funny. I noticed the same thing 'bout energy drinks for me... Monster Lo-Carb happens to be my preference. They work better overall for me than coffee but cost is an issue. While I love the aesthetics of coffee, I also get an odd sick feeling at times like something in there isn't so compatible for me.I happen to have a supply of Taurine as well as various B's (including 1 lipophilic variant, sulbutiamine) and a few other things for similar experimental purpose. I hadn't thought of a cancellation factor to any of the stuff but that is possible... like curbing side effects.Other than guarna (which is mostly just another source for caffeine), I think the related chemicals get a bit touchy with potency or side effects other than diuretic effect, but maybe there's one out there or that can be found or formulated. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 16, 2009 Report Share Posted September 16, 2009 Even small amounts of coffee give me uncomfortable palpitations and cause sleeping problems for me. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted September 16, 2009 Report Share Posted September 16, 2009 I drink decafe till yesterday I couldn't find the can opener and so I mixed half and half. I thought my heart was going to jump out of my chest. My body was shaking so bad...The green tea decafe, neuro and her fellow both looked at each other and said. "no more than two cups a day." BellaMia~ Quote Link to comment Share on other sites More sharing options...
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