leydengs Posted September 27, 2012 Report Share Posted September 27, 2012 From everything I've read people with POTS need to drink LOTS of water but whenever I do that I start to feel horrible. I tried all last week to increase my water intake and it was the worst week I've had in a year. I was exhausted, sick to my stomach and really dizzy all the time. Has anyone noticed that water does this to them as well. I've tried adding salt to my water like my doctor said but that doesn't seem to help much. I've switched to gatorade but there's so much sugar in that I really don't like that option. Any suggestions? Quote Link to comment Share on other sites More sharing options...
puppylove Posted September 27, 2012 Report Share Posted September 27, 2012 YES! I have struggled with this since I was diagnosed with POTS. My doctor and my parents are always telling me drink, drink, drink but it makes me feel so sick. I'm sorry I don't really have any advice, but I wanted to let you know that I'm the same because I thought drinking was supposed to make potsies feel better. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted September 27, 2012 Report Share Posted September 27, 2012 yes me too!!! I hate drinking any fluids and feel worse after. I have actually completely lost the urge to drink. My specialist says my thirst receptor does not signal my body to drink properly because of chronic dehydration. My body is used to not drinking now...this was the reason we started IV infusions but I have had bad reactions to them so all I can do is force myself to drink Quote Link to comment Share on other sites More sharing options...
leydengs Posted September 27, 2012 Author Report Share Posted September 27, 2012 PHEW! Thank goodness because everything I've ready about POTS says to drink tons of water and if I drink more than 1 or 2 glasses in a row I start to feel really bad so I have to drink a pop (sounds insane but it helps) which I'm guessing is due to the sodium. Thank you ladies, I was starting to feel like I was going a little crazy. I mentioned that to my cardiologist, who supposedly knows about POTS but he looked at me completely dumb founded and had no explanation as to why that was. Puppylove - no worries about not having any advice just hearing that I'm not the only one that feels that way after drinking water helps a TON!! Brethor9 - I'm sorry you had such a bad reaction, that's frustrating!! I am thirsty all the time, I always have to have something to drink with me but I tend to stay away from water which isn't good. Maybe I can alternate 1 glass of water and then Gatorade or something with sodium. Maybe that will help. Quote Link to comment Share on other sites More sharing options...
lfreem02 Posted September 27, 2012 Report Share Posted September 27, 2012 I have been drinking a 32oz bottle of Powerade Zero (no sugar or calories), then I fill the bottle with water, Crystal Light (to disguise the salt), and salt, and then I drink 16oz of coconut water. I order the coconut water through Amazon on a regular basis. I am still having issues with lightheadedness, dizziness, tremors, and vision issues, so I haven’t found the magical combination yet. Quote Link to comment Share on other sites More sharing options...
leydengs Posted September 27, 2012 Author Report Share Posted September 27, 2012 Thanks lfreem02, I'll try some of those options. I appreciate it! Quote Link to comment Share on other sites More sharing options...
StephL Posted September 27, 2012 Report Share Posted September 27, 2012 I too have been told I need a LOT of water but it makes me sick.I have found that it helps to keep water in a bottle next to me all the time and to take small sips.My biggest problem, for me, is the constant nausea. Adding anything to my stomach makes it worse, water included. If I take small sips though, rather than trying to gulp a bunch, its easier.If I'm not too careful and drink too much water, I won't have any desire to eat all because the water is filling me up. I've already dropped 50 pounds and I can't afford to lose much more weight. Quote Link to comment Share on other sites More sharing options...
micheller Posted September 27, 2012 Report Share Posted September 27, 2012 I'm like Steph. Any amount of food or liquid makes my nausea so much worse. If I do drink anything, even a little sip, it feels like it just swishes around in my stomach. For some reason water makes my reflux awful. I've found I can tolerate cherry pepsi well in very small amounts. Quote Link to comment Share on other sites More sharing options...
E Soskis Posted September 27, 2012 Report Share Posted September 27, 2012 Yep - not sure it's the water itself making you sick...probably the overall volume dumped into you stomach at one time. There are a lot of nerves connected to the stomach and GI system so, when loaded down, feel sick, nauseated, light-headed - also, a full stomach diverts blood circulation to the stomach to aid in digestion - diverting blood away from brain and other areas also contributes to sick feeling - I keep a bottle of water at my side and take a swig frequently but, I never sit down and gulp down fluid because...well, I like to stay conscious as much as possible! I still manage to take in 80-100 ounces per day of fluid. I never rely on my thirst mechanism - it almost never works correctly. Quote Link to comment Share on other sites More sharing options...
leydengs Posted October 2, 2012 Author Report Share Posted October 2, 2012 I think I saw someone mention this before but does the temperature of water make a difference? I tried increasing my water 2 weeks ago and I had 2 of the worst weeks. I've notice that if I drink cold water my limbs are like ice. I'm always cold anyway but my fingertips feel like they are freezing and I'm starting to feel dizzy and I'm only about 8 oz into this bottle of water. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted October 2, 2012 Report Share Posted October 2, 2012 me too! I have to drink tap water at room temperature or I get sick........ Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted October 2, 2012 Report Share Posted October 2, 2012 Yep, same with me temperature - wise. I don't tolerate any cold liquids. I have no problem drinking lots of water (and it definitely helps with my symptoms), but it has to be room temperature. Quote Link to comment Share on other sites More sharing options...
leydengs Posted October 2, 2012 Author Report Share Posted October 2, 2012 I feel worse when I drink a lot of water, no matter the temperature but when I drink cold water I notice that I feel like I'm sitting in a freezer, my fingers are ice cold. Quote Link to comment Share on other sites More sharing options...
Chaos Posted October 2, 2012 Report Share Posted October 2, 2012 My POTS doc says at least half my fluids should be something other than water...like gatorade, broth, etc. as free water will actually dilute your sodium levels and make the hypovolemia worse. He suggests those NUUN tablets that you add to your water- no sugar and adds electrolytes.Personally I have to drink cold water. Room temp water makes me really nauseated. I think it was Rama who had mentioned that a doc had told him that cold water would make sense for those of us who tend to pool blood in the splanchnic vessels as it might make you vasoconstrict more and thus feel better. I have to just carry it with me all the time and sip it constantly. Luckily I have dry mouth issues so I can always take a swallow or two. More than that leaves me nauseated frequently. Quote Link to comment Share on other sites More sharing options...
nephilimencased Posted October 3, 2012 Report Share Posted October 3, 2012 For those of you who have issues with drinking water: do you have moderate to severe appetite/gastrointestinal issues as well? I have severe chronic abdominal pain, nausea, and a serious lack of appetite. I also don't get thirsty a lot of the time and I have to be careful about how much of anything I put into my stomach, water included. It's important to remember that anything someone with an autonomic disorder puts into their stomach might cause issues depending on how severe their condition is because the digestive tract requires blood to work. If you have low blood volume then blood diverting to one specific part of the body is going to cause problems and symptoms. For me specifically my symptoms get much worse after I eat, especially my pain and near-syncope issues. Quote Link to comment Share on other sites More sharing options...
imre Posted October 3, 2012 Report Share Posted October 3, 2012 Chaos is right you need salts or electrolytes with water to retain blood volume. I eat pretzels and drink a lot of water this seems to help a bit. Or drink Gatorade or coconut water. So yea just plain water is probably not the best. Quote Link to comment Share on other sites More sharing options...
puppylove Posted October 3, 2012 Report Share Posted October 3, 2012 Yes, gastro issues are my main problem. Eating or drinking large amounts makes me sick. Quote Link to comment Share on other sites More sharing options...
nephilimencased Posted October 3, 2012 Report Share Posted October 3, 2012 I have the same issue. I have been dealing with this stuff for years so I adjusted a long time ago to eating smaller meals. over time my appetite really diminished too.what about drinking gatorade? does that make you feel bad too? Quote Link to comment Share on other sites More sharing options...
leydengs Posted October 3, 2012 Author Report Share Posted October 3, 2012 Chaos - can you get those Nuun tablets over the counter?nephilimencased - I do have A LOT of stomach problems. If I drink too much water I start getting really bad reflux where my throat hurts and I feel like if I burp even a little bit I'll puke. I had to switch to gluten free which seemed to help. Now if I eat anything non gluten I feel HORRIBLE!! I typically do 6 smaller meals a day (I'm big into fitness) but I've even made those smaller and added a couple more meals to help as well.Imre - pretzels is a great idea. I've found that if I take a couple sips of water and then a couple sips of gatorade that seems to help quite a bit.Puppylove - I'm the same way so I eat little meals every 2 hours and that seems to help quite a bit. I try to avoide a lot of carbs since that makes it worse too. Right now I've been having a flare up so I've had to cut down even more than usual. I was feeling great yesterday, I mean awesome!! and then when tucking my kids into bed I felt like I was going to pass out. I lost strength in my legs and my bf had to help me walk to our bed because my legs were shaking so badly. It's so FRUSTRATING!!!! Quote Link to comment Share on other sites More sharing options...
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