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Derek1987

What's the best drink for POTS sufferers?

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Reading these forums I see people mention getting IV fluids etc. Is there a drink out there that will also help? I bought some Gatorade but it doesn't seem to have many ingredients in it. Mostly sugar water. 

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Hi @Derek1987 - I respond extremely well to IV fluids given over 8 hrs  but I do drink Gatorade inbetween - it is high in sodium and potassium. Other drinks that help me are salty broth and ginger ale with added salt ( tastes better than you think and the sugar/salt mix in addition to the GI friendly ginger are good for my POTS symptoms. 

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I drink water and try to get my nutrients from the other foods I eat and drink.  I usually add a wedge of citrus to spike it for flavor. I also mix soda or nectars 50/50 with water.

 

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14 minutes ago, yogini said:

In my opinion broth is the most effective drink is broth followed by lots of water.

Broth can also be nourishing and comforting. Chicken soup to the rescue.

 

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3 hours ago, Pistol said:

Hi @Derek1987 - I respond extremely well to IV fluids given over 8 hrs  but I do drink Gatorade inbetween - it is high in sodium and potassium. Other drinks that help me are salty broth and ginger ale with added salt ( tastes better than you think and the sugar/salt mix in addition to the GI friendly ginger are good for my POTS symptoms. 

How often do you get IV fluids? I was on my feet earlier doing the dishes for about 20 mins. I was okay until the final couple minutes. Shaky and flushed. I want to sleep to stop the suffering. It's been a few hours since. I did drink a Gatorade though.

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For me, there's nothing that's remotely as helpful as IV fluids, which I could get daily... but I want to keep my veins nice, so I don't. 

 

The next best thing is salty broth, or my homemade electrolyte drink. My doctors recommend Banana Bag oral solution, and it's good, but I make my own with a little juice, some Lite Salt which is potassium, and sea salt dissolved in water.

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Dear @Derek1987 - after years of having to be frequently hospitalized for IV fluids when I was in a POTS flare I now have a port and get IV fluids at home weekly. I am greatly improved with NO syncopal episodes in over 4 months ( my previous record wax shy of 11 weeks ). However - current consensus is IV fluids for POTS only to be given in emergency situations or on a short-term basis. The risk of repeated IV access peripherally or long-term access as in a PICC line or port ( blood clots, infection, phlebitis ) has to be carefully considered by the physician. So - methods such as increased fluid and salt intake, compression hose, exercise, lifestyle changes and medication are usually tried first and IV fluids only if nothing else helps. It took years of displaying continuous improvement following IV fluids and no improvement from other avenues in order for me to be approved for long-term IV fluid therapy.

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14 minutes ago, Pistol said:

Dear @Derek1987 - after years of having to be frequently hospitalized for IV fluids when I was in a POTS flare I now have a port and get IV fluids at home weekly. I am greatly improved with NO syncopal episodes in over 4 months ( my previous record wax shy of 11 weeks ). However - current consensus is IV fluids for POTS only to be given in emergency situations or on a short-term basis. The risk of repeated IV access peripherally or long-term access as in a PICC line or port ( blood clots, infection, phlebitis ) has to be carefully considered by the physician. So - methods such as increased fluid and salt intake, compression hose, exercise, lifestyle changes and medication are usually tried first and IV fluids only if nothing else helps. It took years of displaying continuous improvement following IV fluids and no improvement from other avenues in order for me to be approved for long-term IV fluid therapy.

That's crazy. I'd probably have more fainting episodes but I'm glued to the bed because I feel worse if I'm not laying down. When you have your fainting episodes, do you pass completely out every time? I only went completely out once but have had several near fainting episodes or as if I'm going out but stay awake.

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@Derek1987 - to answer your question: yes. I usually am out cold when I faint unless I respond to the early warning signs and lie down before it happens. In that case I am conscious but cannot move and sometimes loose my hearing for a few seconds. This is called presyncope, in other words the state right before the blood loss to your brain shuts off completely. 

10 hours ago, Derek1987 said:

. I'd probably have more fainting episodes but I'm glued to the bed because I feel worse if I'm not laying down

That is a common problem in POTS but be aware that bed rest makes everything worse b/c you decondition and the body looses the ability to adjust to being upright. So - if you get up you faint and if you stay in bed your fainting will be worse once you get up. So here is what has helped me in the past: exercise in bed, get up several times an hour and stand leaning against a wall for a few seconds, increasing the time standing gradually each time. However - in my case once I got to the point where you are at right now my PCP would put me in the hospital or send me to the ER for IV fluids ( even without the DX of POTS IV fluids are a common way to treat syncope and presyncope ). My specialist has given me several times a prescription to get weekly IV fluids at the local hospital infusion center for one month at a time for those times when I am non-functioning. You might ask your PCP for this to see if it works for you as an emergency treatment. 

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Derek, you might try Pedialyte.  It has lots of sodium and potassium.  I get more benefit from my DIY recipe than I do from salting my food and drinking plain water.  Without having some of my salt and water this way, It is as if the salt and water are completely ineffective at making me feel less lightheaded and fatigued.  Something about the sugar helping get the salt into the bloodstream perhaps? 

 

DIY Pedialyte-like drink:  1/4 teaspoon regular salt, 1/2 teaspoon low-sodium salt, enough juice for 15 - 25 grams of carbohydrates, enough water to make 1 quart (or liter) total.  

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Pedialyte has been helpful to me, also coconut water, which is actually even richer in potassium.  I add salt to the coconut water when feeling particularly badly.

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I have a 32 ounce drink of water with a half serving of Genius Electrolyte powder mixed in every morning before exercising and getting to it with chores followed by work and etc.

A single serving of Genius Electrolyte Powder (which can be had at Amazon - I'll leave you to search the product out) contains both potassium (390 mg) and magnesium (50 mg) in easily absorbed chelated forms. It also has small amounts of zinc and phosphorous and (100% daily recommended amount of) vitamin C and is sugar free. At a cost of $22-$24 per (30 servings) container it's not inexpensive, thus I halve the amount I use while adding 1/4 teaspoon of salt (500 mg sodium) per 32 ounces water.

A cost comparison to Gatorade: A 32 ounce container of Gatorade usually sells for $0.99 at Target/ my local food stores. On occasion, it will be on sale for $0.79. 32 ounces of Gatorade provide 112.5 mg potassium, 400 mg sodium and 52.5 grams of sugar. The Genius Electrolyte product (again, using half the recommended per serving amount in combination with one quarter teaspoon of salt added) mixed in 32 ounces of water provides 195 mg potassium, 25 mg magnesium (again, in a more easily used form), 500 mg sodium, the trace amounts of zinc and phosphorous, Vitamin C and no sugar. The cost per serving of the Genius product (using half servings) is approximately $0.40 per 32 ounces water. (This using the $24 per container price of the powder but not factoring in the cost of the salt or water you provide.) 

An alternative to broth (which I also like and some times use) is adding 1/8 to 1/4 teaspoon of salt to some diluted juice. (I usually use cranberry.) If, at the same time, you eat (an average sized) half of a banana you'll take in approx. 210 mg potassium and 13.5 grams carbohydrates (half of which are sugars). Supplementing magnesium can be tough. You can always munch on a tablespoon of hemp seeds or a small piece of dark chocolate.

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35 minutes ago, ScottS said:

 

An alternative to broth (which I also like and some times use) is adding 1/8 to 1/4 teaspoon of salt to some diluted juice. (I usually use cranberry.) If, at the same time, you eat (an average sized) half of a banana you'll take in approx. 210 mg potassium and 13.5 grams carbohydrates (half of which are sugars).

I do this as well as find it effective.

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I love hemp hearts and chocolate. Part of my treatment plan is soaking in Epsom salts, and I take chelated magnesium each night. That said, I know some people add a little Epsom salt to their electrolyte drink.

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I will use a combination of sources, water, Powerade Zero Isotonic drinks, salty soups/broths and salt sticks.  

 

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Salt-sticks:

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I use Trioral. usually 2-3 litres a day. works out more cost effective than any others I've seen & it is also based on the World Health Organisation recipe for oral rehydration salts which is specifically designed for fluid replacement in places without access to IV fluids. 

It doesn't taste very nice but a small amount of fruit juice or other flavouring can be added. 

I've tried making my own according to various recipes but am never confident in getting the proportions right to maximize absorption. 

What I like about Trioral is 1 sachet makes up a litre whereas many other commercial products make up only small quantities about 200ml which is worthless to someone with POTS!

B x

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In my case I was unable to take oral salt/ electrolyte supplements b/c they really irritated my stomach ( I was diagnosed with GERD, Barrett's, duodenitis, IBS ). I just was unable to take them due to extreme nausea unrelieved by medications as well as diarrhea. Due to my inability to tolerate salt supplements or large amounts of liquid I am now on scheduled IV fluids which help tremendously. 

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I use gatorade over diluted with water and add some fruit juice. It's really challenging for me to drink enough because I've never had normal thirst triggers. I find the need to drink a certain amount every day exhausting. I really hate it. It's odd that this bothers me more than so many other things in my life that are much worse for most people. But I just have to force myself to drink.

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I've been doing mostly water, some milk once in awhile and gatorade. I want to try gatorade zero. I try to keep the suger lower if I can, just because. I've been adding salt to my diet too. I use coarse kosher in my cooking. I've been averaging about 4700mg a day, with a high of over 9K once. I think my pots symptoms get a little better with more sodium, but my BP goes up a little and I retain some water. Even 4700 sounds high compared to what daily recommended is. Funny thing is, water seems to calm my GI symptoms a bit... This stuff is totally new. I never thought about how much I drink. I just drink when I feel the need to. 

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16 hours ago, toomanyproblems said:

I use gatorade over diluted with water and add some fruit juice. It's really challenging for me to drink enough because I've never had normal thirst triggers. I find the need to drink a certain amount every day exhausting. I really hate it. It's odd that this bothers me more than so many other things in my life that are much worse for most people. But I just have to force myself to drink.

Ditto for me, I absolutely never have any thirst, so forcing all that intake is a big chore... and sometimes I choke on water too. I find it bothersome to track my water intake.-I have enough to keep tabs on. I also don't have much positive effect even from drinking multiple liters of salty water in a day. No matter how much liquid and salt I take in, there's very little effect. If I run IV saline, I have a lot of improvement. It makes no sense, but it's the way I am.

 

I SO wish someone would do research into the lack of urge to drink and link it to dysautonomia or something.... my mother, sister, and grandmother all share the lack of thirst.

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@RecipeForDisaster I too rarely feel the need to drink, except for first thing in the morning ( I am up peeing all night ). When I used to drink 2-3 liters a day along with lots of salt I just peed it all out, it never did anything to my POTS symptoms. In addition the fluid would add to my stomach problems and make me feel very full all the time. IV fluids are definitely the way to go in my case as well. The results are IMMEDIATE and LASTING!!!! With drinking fluids my BP was till high - with IV fluids my BP is normal to low and I can manage ( and feel ) a lot better. 

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6 hours ago, Pistol said:

@RecipeForDisaster I too rarely feel the need to drink, except for first thing in the morning ( I am up peeing all night ). When I used to drink 2-3 liters a day along with lots of salt I just peed it all out, it never did anything to my POTS symptoms. In addition the fluid would add to my stomach problems and make me feel very full all the time. IV fluids are definitely the way to go in my case as well. The results are IMMEDIATE and LASTING!!!! With drinking fluids my BP was till high - with IV fluids my BP is normal to low and I can manage ( and feel ) a lot better. 

How often does one have to do IV fluids?

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For me it hasn't been as important as to what I'm drinking as much as that I keep drinking regularly.  I can handle a soda or sugary drink, but only one at a time.   Instead, I normally (try) to go for tea or water.   What has been helpful are the Ozark Trail tumblers (knock-off Yeti) I picked up at Walmart.  I'm much happier drinking ice cold water and these will keep it cold with ice for 24+ hours.  With one of those full and nearby, I'm constantly reaching for it and drinking water.  

One luxury I do enjoy is squeezing my own orange juice.  There's no comparison between real orange juice and the artificially perfumed junk they sell in the stores. Not even close.  Not even the same color, taste, or smell.    At least where I'm at, it's also cheaper to make the real thing too.

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