TorturedSoul Posted March 28, 2021 Report Share Posted March 28, 2021 Hi everyone. I'm just curious. It's 2:50 and I had 2 cups of decaf coffee. My blood pressure is fine and heart rate good. Would that be enough to cause feelings of lightheadedness. Acetyl l carnitine is really helping me but there are some days I have this lingering lightheaded feeling. Now if vitals are normal does hydration still matter? Looking back I never drank a lot. I don't have that feeling of thirst. It's very strange. I have to force myself to drink. Would drinking 16-20oz each day of liquid cause chronic dehydration even those blood pressure is not affected? Quote Link to comment Share on other sites More sharing options...
TorturedSoul Posted March 28, 2021 Author Report Share Posted March 28, 2021 I should add most days I drink about 30-40 oz Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 29, 2021 Report Share Posted March 29, 2021 @TorturedSoul - I can totally tell if I don't get enough fluids, my POTS gets very bad right away. Most people here drink a lot just to stay upright. I have to make myself drink too, I barely get thirsty. But it is really important for our BP and HR as well as symptoms like brain fog and fatigue that we drink a lot. And it is important to increase salt along with the fluids - it keeps the extra fluid in your blood vessels, where it is needed to increase volume. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted March 29, 2021 Report Share Posted March 29, 2021 Decaf still has caffeine right? I was discussing this in another thread but caffeine cuts off 30% of cerebral blood flow so it could cause the lightheadedness you describe. Do you have salt tablets? I dissolve them in water then drink it quite diluted and it's the only way I can retain fluid. I don't drink what they recommend my bladder problems are horrific and I can't spend all day in the bathroom so it's kind of just do your best. A lot of people drink electrolyte drinks, there are all kinds my bladder just can't handle the citric acid or potassium so I go with the dissolvable salt tablets. Quote Link to comment Share on other sites More sharing options...
yogini Posted March 29, 2021 Report Share Posted March 29, 2021 1 hour ago, CallieAndToby22 said: Decaf still has caffeine right? I was discussing this in another thread but caffeine cuts off 30% of cerebral blood flow so it could cause the lightheadedness you describe. Do you have salt tablets? I dissolve them in water then drink it quite diluted and it's the only way I can retain fluid. I don't drink what they recommend my bladder problems are horrific and I can't spend all day in the bathroom so it's kind of just do your best. A lot of people drink electrolyte drinks, there are all kinds my bladder just can't handle the citric acid or potassium so I go with the dissolvable salt tablets. Decaf has trace amounts of caffeine. Caffeine increases blood pressure and HR. I'm not that caffeine's impact on cerebral blood flow rules it out for dysautonomia. Some people need it and can't function without it. Others can't tolerate it. I've always heard that those who can't tolerate expereinced an increased HR. I never heard the cerebral blood flow discussion before. Salt only works to increase your BP if you chase it with water. If you are not taking the recommended amount of water with your salt, you will be less likely to see the benefits of the salt. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted March 29, 2021 Report Share Posted March 29, 2021 11 hours ago, yogini said: Decaf has trace amounts of caffeine. Caffeine increases blood pressure and HR. I'm not that caffeine's impact on cerebral blood flow rules it out for dysautonomia. Some people need it and can't function without it. Others can't tolerate it. I've always heard that those who can't tolerate expereinced an increased HR. I never heard the cerebral blood flow discussion before. Salt only works to increase your BP if you chase it with water. If you are not taking the recommended amount of water with your salt, you will be less likely to see the benefits of the salt. I'm not ruling it out, I'm merely pointing out how it can affect the brain. Another member and I were discussing why stimulants and vasoconstrictors make us both very very ill and he/she pointed out that caffeine at certain doses a day decreases an average of 27% of cerebral blood flow according to government research articles and studies that can be found googling. I'm not telling people to stop using it b/c my mom is an RN needs it and drinks it every morning; I'm sharing information that may be helpful. Our discussion on this is under the food sensitivity topic. Last time I was on vacation near the Grand Canyon I drank part of a chai tea not realizing it was caffeinated and as we left I was stumbling and falling over on the side walk, just the way I react and my blood pressure tends to run low. I was recommending the salt tablets that you put in a glass of water, it dissolves, and you drink the water either at that moment or like me, I drink it through-out the day. Dr. Thompson got me started on the tablets. My mother can only find them at one specialty pharmacy here. But when used with a full glass of water it really doesn't taste salty at all, this is the only way I can retain fluids. Quote Link to comment Share on other sites More sharing options...
Delta Posted March 29, 2021 Report Share Posted March 29, 2021 20 hours ago, TorturedSoul said: Looking back I never drank a lot. I don't have that feeling of thirst. It's very strange. I have to force myself to drink. This is the story of my life. I was never a fan of drinking a lot, especially water (Boring)! But then a few years ago I had kidney stones (OUCH), and the doc said that I needed to drink more water so I wouldn't keep getting them (I had them three times). I said that I wasn't often thirsty and only drank when I was really thirsty. The doc's reply was interesting: She said that we're *supposed* to drink when we're not thirsty because if you get to where you actually feel thirst, that means you're already in a deficit situation. (!!) So between that and POTS, I've become one of "those people" who tote a water bottle everywhere! Quote Link to comment Share on other sites More sharing options...
TorturedSoul Posted March 31, 2021 Author Report Share Posted March 31, 2021 Thank you everyone. Yes I have a feeling I'm chronically dehydrated because even as a child I remember not having thirst. In fact, my whole family used to eat dinner together and none of us wanted to drink with dinner. My mother is the same way. She can go a day without drinking and if she does maybe she will drink one bottle of water. Growing up I remember seeing her legs turn red in the shower. She also seems to have other autonomic issues but nothing that affects her at all. It's very weird. She never complains of palpitations or lightheaded feeling or terrible sleep issues and yet my symptoms are debilitating. I don't get it Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted April 1, 2021 Report Share Posted April 1, 2021 Interesting about caffeine reducing cerebral blood flow--maybe not everyone with POTS is affected that way. But I believe that I am and this is the first I have heard this. I actually get increased orthostatic symptoms after drinking anything w caffeine or eating chocolate. It never occurred to me this was something documented in other people! Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted April 1, 2021 Report Share Posted April 1, 2021 11 hours ago, TorturedSoul said: She never complains of palpitations or lightheaded feeling or terrible sleep issues and yet my symptoms are debilitating. I don't get it This condition does seem to affect each person in a somewhat unique way. And in families some are only mildly impaired and others significantly. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted April 1, 2021 Report Share Posted April 1, 2021 Our family never gets thirsty and never had water on the table with meals either. None of us can tolerate heat well, either! Hmm. Quote Link to comment Share on other sites More sharing options...
yogini Posted April 4, 2021 Report Share Posted April 4, 2021 On 3/31/2021 at 10:44 PM, MomtoGiuliana said: Interesting about caffeine reducing cerebral blood flow--maybe not everyone with POTS is affected that way. But I believe that I am and this is the first I have heard this. I actually get increased orthostatic symptoms after drinking anything w caffeine or eating chocolate. It never occurred to me this was something documented in other people! Caffeine is a stimulant which increase the heartrate, That is also one of the reasons why some us have trouble tolerating it. It definitely increases my HR but I feel much more alert, awake and I suspect it helps keep up my BP so it's worth it for me. Quote Link to comment Share on other sites More sharing options...
CallieAndToby Posted April 5, 2021 Report Share Posted April 5, 2021 (edited) On 3/31/2021 at 10:44 PM, MomtoGiuliana said: Interesting about caffeine reducing cerebral blood flow--maybe not everyone with POTS is affected that way. But I believe that I am and this is the first I have heard this. I actually get increased orthostatic symptoms after drinking anything w caffeine or eating chocolate. It never occurred to me this was something documented in other people! Essentially all vasoconstrictors can potentially decrease cerebral blood flow in *some* patients. Every stimulant I've ever tried makes me very ill. I even tried Northera and I got very dizzy, fell asleep, woke up super dizzy and faint. Vasoconstrictors also make it very hard for me to urinate and I already have bad IC. They help some people and other it hurts them and Northera never even helped my blood pressure...... It would be nice to discuss what patients do when we can't tolerate stimulants, vasoconstrictors, but need increased cerebral blood flow. But again, we're all different and the autonomic nervous system and its dysfunction and malfunction are very complex and complicated; I doubt we understand much about it, so whatever works for you is fine but if it doesn't work that's something to be avoided. I actually do fine with chocolate but it has to be low on cocoa (milk). A study on caffeine: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2748160/ . Edited April 5, 2021 by CallieAndToby22 scaled down how much I typed and misspelling Quote Link to comment Share on other sites More sharing options...
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