Guest tearose Posted February 12, 2009 Report Share Posted February 12, 2009 Here is a little reflection on my struggle for brain clarity with POTS:NECTAR OF THE GODDESSRising from the night's ReclineDespair will end, with drink DivineBeans cook swiftly, this caffeine NectarToxins help, yet also wreck HerCoarse the grains, the brew is SmoothStiff right now, soon brain will MoveAwakened mind where neurons SleptJoyful at last, though she has Weptcopyright 2008raising my cup to us all for a clear day!tearose Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 12, 2009 Report Share Posted February 12, 2009 What a beautiful "Ode to Joe!" We've recently discovered that caffeine plays a huge part in helping my son. He's got bradycardia, at times his HR is in the 30's; very slow speed processing (7%ile- common with autonomic issues); and is very fatigued. He takes a huge thermos of coffee to school because he says it helps him learn better. He's recently begun taking Concerta with the coffee and the result have been near miraculous. His schoolwork is so much more do-able. Mack is quite intelligent, but has struggles because of his speed processing/cognitive fog. Coffee has been a godsend for him.Julie Quote Link to comment Share on other sites More sharing options...
Rachel Posted February 12, 2009 Report Share Posted February 12, 2009 I like it!I drink coffee daily to help with my blood pressure, fatigue, and mental clarity.Thanks so much for sharing.Rachel Quote Link to comment Share on other sites More sharing options...
Guest brianala Posted February 12, 2009 Report Share Posted February 12, 2009 When I first started seeing my cardiologist several months ago he told me to cut out all caffeine. I miss it so much I can tell a huge difference in my mental clarity. I feel like I'm not ever completely awake without coffee. I still have decaf in the mornings (old habits die hard) but it's not quite the same. Quote Link to comment Share on other sites More sharing options...
summer Posted February 12, 2009 Report Share Posted February 12, 2009 Love the poem! When I first realized I was having tachycardia, I thought the obvious thing to do was to eliminate caffeine. After a couple of weeks I realized that this was making me feel worse, not better. I have found that a couple of cups as soon as I get up boosts my blood pressure and helps me avoid the nausea and faint feeling that goes with low BP in the early morning. I now consider it an important part of my treatment plan. It also gives me a little temporary relief from my brain fog.Summer Quote Link to comment Share on other sites More sharing options...
iheartcats Posted February 12, 2009 Report Share Posted February 12, 2009 Yup. My Daily Latte helps me, especially on days I work. It doesn't make my HR any worse. I did a month-off coffee/caffeine and felt horrible and my tachy STILL varied just as much. Coffee helped morning BP + Brain Fog more than it harmed anything. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 12, 2009 Report Share Posted February 12, 2009 I wish I could enjoy coffee! Giving up caffeine was one of the bigger bummers of POTS for me . Too much increased adrenaline-symptoms (flushing, tachy, pounding heart while laying down, abdominal cramps, big D, etc.). It sure does make me feel more awake, though. Just not worth all the side effects. It sounds like many of you can still enjoy caffeine, so that's great!I did enjoy the poem Quote Link to comment Share on other sites More sharing options...
juliegee Posted February 13, 2009 Report Share Posted February 13, 2009 I can relate to those of you who struggle with caffeine. Even though it helps my son; I use it very judiciously. In the AM, I brew a separate pot of coffee for me- 2 scoops of de-caf, one scoop of the good stuff. It still kick starts me, without the tachycardia, adrenaline surge, and resulting low blood sugar that I get from real coffee. Dr. Rowe at Hopkins said it best- "Experiment with caffeine. It helps some and hurts others!" Juloie Quote Link to comment Share on other sites More sharing options...
yogini Posted February 13, 2009 Report Share Posted February 13, 2009 You guys are so lucky. Caffeine makes my HR beat faster and keeps me up at night. Some times are better than others, but overall I'm better off without it. On long days, a can of Diet Coke in the late morning gets me through the day and wears of in time to let me sleep. I don't like coffee or tea anyway, but I do miss my Coke! Quote Link to comment Share on other sites More sharing options...
valliali Posted February 13, 2009 Report Share Posted February 13, 2009 oh what i would do to be able to drink coffee! i used to looooooooooooove coffee, and then, when pots came, i couldn't even have decaf without the adrenaline surges, panic attacks, tachycardia, psvts, and flushing. i felt much much better without it. however, i have such intense brain fog and am soooo sluggish, i would kill for a pick-me-up. the brain fog has gotten so bad, i'm actually thinking of giving the coffee a try again. i'm just so terrified from previous experiences, especially with the heart arrythmias. but two weeks just floated by, and i don't remember any of it i'm so checked out. can't win!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 13, 2009 Report Share Posted February 13, 2009 Caffiene is really interesting with POTS. When im in a particularly bad period I cannot tolerate it at all, one sip of coffee and im dizzy as and hyper as.And before POTS I was addicgted to coffee - LOVED THE STUFF!When i start to feel better and the sympathetic side of things settles down and im left with fatigue and brain fog, caffiene can be VERY helpful, but if I overdo it Im in big trouble. That being said, I find that it can give you a burst of energy and mental clarity and then make you feel worse afterwards, and can bring back the tachycardia and tremors hours later in me. I still cant tolerate coffee now, only coke and then i drink two sips every 15 minutes from 12pm to get me through the working day. Ive noticed that at the moment even this small dosage effects my sleep and exercise tolerance.When I go for my nightly walk if ive drank caffiene I find i get dizzier quicker, whereas on days where i have avoided it I can last longer but feel more fatigued. I cant really explain that. Before I first got POTS i developed a caffiene intolerance where if I drank more than one cup of coffee a day I felt achy and tired. I put it down to dehydration but it got worse, and then once POTS arrived I could not tolerate it.it ***** when i was in costa rica and all my friends were drinking great coffee so dumb old me orders one as well and then spends the rest of the day out of it and no fun to talk to at all... Quote Link to comment Share on other sites More sharing options...
valliali Posted February 14, 2009 Report Share Posted February 14, 2009 i think i would have similar reactions if i tried coffee again. but sometimes the brain fog is so bad, i'm almost willing to suffer those consequences just to be able to get through a work day. i hate that i have to make that choice - hmm would i rather panic, tachycardia and tremors, or brain fog so bad i just stare off into space all day???? Quote Link to comment Share on other sites More sharing options...
green Posted March 9, 2009 Report Share Posted March 9, 2009 I also experience the caffeine dilema: over-active CNS or under-active CNS? Also, I've found that there is a crash when the caffeine wears off. Weakness and fatigue.i think i would have similar reactions if i tried coffee again. but sometimes the brain fog is so bad, i'm almost willing to suffer those consequences just to be able to get through a work day. i hate that i have to make that choice - hmm would i rather panic, tachycardia and tremors, or brain fog so bad i just stare off into space all day???? Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 10, 2009 Report Share Posted March 10, 2009 green-A crash? Goodness, I wouldn't want that. For some like me, the coffee is medicine used to raise blood pressure and lower heartrate. I make a very weak brew so I am actually hydrating at the same time. It is not to be used one ounce more OR one ounce less than needed.I have absolutely no anxiety with coffee.I think my poems says it better. I wish the neurons didn't benefit, but they do.go figure,tearose Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 27, 2009 Report Share Posted March 27, 2009 Now im feeling better im finding coffee to be quite helpful although it worsens my body and hand tremors - so i stand their shaking, but i feel great and can think clearly. You cant have it all eh? Quote Link to comment Share on other sites More sharing options...
mkoven Posted March 27, 2009 Report Share Posted March 27, 2009 I had only been drinking one cup in the morning, but recently was having such fatigue in the afternoon, I've added in another cup in the afternoon. I don't know that it helps with all my symptoms, but does help with energy and concentration. I'm trying to be consistent though=-- just one more cup, no more, always around the same time of day. And I have to be careful if I have it out. Two days ago it was starbuck's which is WAY stronger than what I make at home, and I felt so wired I could barely stand it. Quote Link to comment Share on other sites More sharing options...
Miriam Poorman-Knox Posted March 27, 2009 Report Share Posted March 27, 2009 Tea thanks for the Poem. Sorry or not to say any caffeine is dehydrating. However I know that I do make up in water what I lose from coffee. I think in this syndrome its COFFEE==LOVE it or Hate it...............as for me need it! M Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted March 27, 2009 Report Share Posted March 27, 2009 Update...I have vowed to not take any type of caffeine anymore. (came off it soon after first posting) I started to experience tolerance again. Was very bad. If you google caffeine tolerance you will see how it can cause some serious problems. The fact that one cup of 45mg caffeine tea had an effect was the last straw and catalyst for this final decision.Hope you all figure out what will work for you.best regards,tearose Quote Link to comment Share on other sites More sharing options...
Tommyhoney Posted March 27, 2009 Report Share Posted March 27, 2009 Tearose,Do you get caffeine withdrawl symptoms when coming off the coffee? Since I was diag'd I cut way back, but afraid it would just add to my sicky symptoms, if I cut it out completely. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted April 21, 2011 Report Share Posted April 21, 2011 This revisited thread shows our/my journey to understanding the effects of caffeine.I wish for all of us to find a treatment that works with the least side effects or damage to our body.I keep a good balance now with using caffeine as needed. Quote Link to comment Share on other sites More sharing options...
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