Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
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  1. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    How do you get your extra electrolytes? My son doesn't like Gatorade, ElectroMix makes his nausea worse, and extra salt isn't enough, given that he consumes 5-6 liters of water per day. Any suggestions would be most appreciated. Quantities and frequency would be great to know as well.
     
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  2. SOC

    SOC Senior Member

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    5-6 liters daily seems excessive and possibly dangerous. Is your son doing this under the care of a physician? Is he having regular testing to make sure he is not depleting his mineral and water-soluble vitamin stores?

    I have heard Power Pak recommended for PWME. It looks to me not to have as much electrolytes per package as ElectroMix and isn't as well balanced, but if it works, who's arguing. ;) It comes in several different flavors, if that helps.

    Some people don't realize that ElectroMix is supposed to be mixed in a full liter of water, not just a glass. If mixed in 8-12 oz of water it can be pretty strong tasting and maybe a bit hard on some people's stomachs. My daughter, who doesn't like the taste, sometimes mixes one packet in 2-3 liters of water which she drinks over the course of the day. At that level of dilution, it's hardly noticeable.
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    There is also Vitalyte, Nuun, and Salt Stick tablets (three different products in case that makes more sense.). I can type more about them tomorrow if it would be helpful.
     
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  4. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Yes, this is a lot of water. I've asked, doctors never have anything to say about it. He does mix the ElectroMix with a full liter of water, we'll try half a package per liter tomorrow. Thanks for the suggestions.
     
  5. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Yes, please do elaborate when you can. Thank you.
     
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  6. Alea Ishikawa

    Alea Ishikawa

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    @Never Give Up - What are his electrolytes currently at?

    Typically, a good deal of water is about 2 liters (64-72 ounces). Your son is taking about 2-3x that amount. Assuming 1/2 ounce of water per 0.45 kg (1 lb.), the amount he's drinking might work if he weighed 153-184 kg (338-406 lbs). If he weighs less, then I would very strongly suggest lowering the amount - unless there's a reason for keeping him higher.

    Like @SOC hinted, excess water can affect mineral levels. If levels drop too low, it can be life-threatening. Some years ago, a woman died from water intoxication from a contest ("Hold Your Wee for a Wii"). There are multiple horror stories like this.



    Recently I've been putting magnesium and/or potassium in powdered nonfat milk, which has some calcium and sodium in it already, shaken with some water. It's cheaper than Pedialyte, maybe more wholesome.



    Is your son having trouble walking/balance issues? Shaking? Calf cramps? "Out of it" - any more than normal? If so, then I would suggest getting him tested at your local clinic. I'd also suggest you have him avoid straight water and getting only electrolyte-filled stuff in him - but there might be a point where he would need an IV (for example, if he can't keep liquids down). This is really not something you want to risk!
     
  7. Gondwanaland

    Gondwanaland Senior Member

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    @Never Give Up is your son thirsty all the time? Is he dehydrated? He surely needs more electrolytes than he is currently taking .
     
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  8. Sherpa

    Sherpa Ex-workaholic adrenaline junkie

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    I like LoSalt - it's cheap... and 66% potassium, 33% sodium
     
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  9. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Yes, he is excessively thirsty all of the time. He does not have diabetes. He does have POTS. Doctors have no explanations to offer. Does anyone have any idea why he is so thirsty? I agree that he should be consuming more electrolytes, just trying to figure out how to best do it.
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    @Never Give Up Vitalyte is a powdered mix that comes in different flavors and you add it to water. The two flavors that I have tried are citrus and fruit punch and they are really good and make it far easier for me to tolerate drinking (versus plain water or Pedialyte.) I have the opposite problem of your son and am now finally drinking eight glasses (two liters?) of water per day but it is a struggle for me.

    Nuun is also a large tablet (more like a wafer) that fizzes and dissolves in 16 oz of water and comes in many different flavors. You just have to be careful to buy the ones that do not have caffeine (at least in my case b/c of tachycardia.)

    Salt Stick tablets you can buy on Amazon or also in person at a bike store. You want the blue bottle (not green) which is the version without caffeine. You swallow them with regular water (or any drink) to add sodium and electrolytes and I usually do one tablet per eight ounces of water.

    I use all three in the same day and also drink coconut water which has a lot of Potassium. Hope this helps!
     
  11. anciendaze

    anciendaze Senior Member

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    If he has polydipsia, as you seem to be saying, and has dehydration, I strongly suspect polyuria as well. I would just guess the amount coming out of him is close to 7 liters per day.

    One wild idea in this case would be pituitary hypophysitis. Unfortunately, I don't know any simple, cheap test for this. Since this often is the result of leukocyte infiltration of the pituitary, there is considerable suspicion of infectious or autoimmune etiology.

    It would be nice to be wrong about this, and find something easier to treat.
     
  12. ahimsa

    ahimsa Rarely on PR now

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    @Never Give Up - One option is to mix up your own electrolyte mix. You just need a source of sodium (e.g., table salt and/or bicarb) and a potassium source like potassium chloride (ingredient in salt substitutes). Then you mix them in water. It's a bit less convenient to use measuring spoons instead of just opening a packet but it is way cheaper.

    Optionally you can add some sugar source. I use powdered dextrose. This may help some people absorb the salt better. Here's the recipe that I use:
    This is fairly close to the WHO recipe for electrolyte replacement. I think it can be adjusted to suit the patient but definitely check with a doctor. Although it seems like this would be better than so many liters of plain water for someone with POTS and/or NMH.

    Most folks on the forum have said that they don't need any sugar and it does not make a difference for them. But it does seem to help me for some reason whether it is absorption (I'm drinking it on an empty stomach and often skip dinner completely) or something else. It's a pretty small amount (1 tablespoon = 45 calories = 12 grams carbohydrates) and it seems to be metabolized differently from sucrose or fructose.

    I was drinking the clear, unflavored Pedialyte before I switched to mixing up my own. Since that was working well for me, and it includes dextrose, I tried to find something close to the same when I looked for a recipe.

    Hope this helps.
     
  13. Gondwanaland

    Gondwanaland Senior Member

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    How about his bowel movements? High or low blood pressure? Body temperature? Food intolerances?

    Buy pH strips and test his urine in the evening. If it is in the range of 4.5-5, he could benefit from a neutralizing protocol with bicarbonate and magnesium.

    Right now you could mix 1/2 tsp of sodium bicarbonate in 2/3 glass of water and give him to do mouth swishes. If it's relieveng inside the mouth, he could do a foot bath with 1 Tbsp bicarbonate in warm water. Also bicarb scrub under the shower can be relieving.
     
  14. Alea Ishikawa

    Alea Ishikawa

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    @Never Give Up - Have doctors ruled out diabetes insipidus as opposed to diabetes mellitis? This does not involve blood sugar but the body dumping large amounts of fluid due to a hormonal issue. This can be caused by autoimmune hypophysitis, noted by Anciendaze, with antibodies to the pituitary and possibly the thyroid gland/hormones. Urine would be light in this case.

    Could be a liver problem (might have dark urine, perhaps with abdominal pain).

    His potassium level could also be low. I'm guessing he's getting a regular, good diet. Some other potential causes are noted by a doctor on HeathTap.



    Is he on any medications that cause excessive thirst?
     
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  15. sueami

    sueami Senior Member

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    Front Range Colorado
    I love you. I have been in an exacerbated crash for 3 days and freaking out because I suddenly developed tachycardia on sitting and standing.

    I'M halfway through my first liter and am able to sit with only 5-10 bpm rise over my supine HR. Standing still goes over 100 but 15-20 pts lower.

    So relieved! I take a time released 1500mg potassium tab and 800 mg magnesium but pro ably have been low in salt.



    eta: what is the recced amt per day? just the one liter?
     
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  16. ahimsa

    ahimsa Rarely on PR now

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    Wow, I'm so happy it has helped you!

    I'm also taking prescription strength time-released potassium every day, 10 mEq (750 mg, I think?). Yet I still drink a liter of this mix a few times a week on top of that. I try to drink -either- 3 liters of water -or- 2 liters of water plus 1 liter of this electrolyte mix ever day.

    I asked my cardiologist whether it was okay to take so much potassium and he said it was fine. But I always advise people to talk with with doctors just in case. It probably depends on other factors like how healthy your kidneys are, things like that.

    Oh, I also take salt tablets (5-6 Thermotabs or Biosalt brand) and magnesium glycinate (KAL brand, I think 600 mg) every day. I'm wondering whether I should add some zinc since that was in some of the generic versions of Pedialyte that I used to drink.

    I actually don't drink this every day. I drink a liter every other day or so.

    I don't want to derail this thread with details and conjecture so I'll post a new thread in a day or two on with some thoughts.

    But I am so glad that it helped you. It can feel pretty random, hit-or-miss, since we all have individual reactions and different things help/hurt.
     
    Last edited: Feb 8, 2015
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  17. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Thank you, this is very helpful. We'll work our way through your list. Just ordered the Saltstick from Amazon to try first.
     
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  18. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Yikes! What kind of physician would be skilled at investigating this idea?
     
  19. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Thanks you for the suggestions, I'll make sure to get these things checked.
     

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