Drinking ORS gets difficult.

[Pino]

I am drinking about 1000ml ORS a day for my POTS and Polydipsia for about four month now and got my electrolytes checked last week, best stats since measuring them. Sounds like everything is fine, but i do struggle these days.

Drinking ORS is a little bit like the preparation drinks for a colonoscopy, not that bad, but you get an idea.
During the last days i drank perhaps half the amount, resulting in more liquid intake absolut and more bladder problems.
I went 25 times yesterday and had about five accidents, all of them at home. I needed to be diapered the complete day, in the evening it got better. After some hours i gave in and barely tried to reach the toilet, using the diaper mostly. Usually i try to avoid that. On top i leaked two times.
I can't await the next Botox injections.

I ordered XP5000 for a try, because the Betterdry could not handle it yesterday and i am out of Megamax and Incontrols.

 

[ltaluv]

There are various recipes for ORS. You could always try a different one to see if you like it better.

Most rehydration recipes focus on sodium, which is ironically missing in many "sports" electrolyte drinks. There are lots of ways to get additional sodium through your diet, though, so as long as you're getting plenty of salt in your food, you could try a rehydration solution with just potassium in it. That might be a little less like a colonoscopy prep.

 

[OmiOMy]

Please explain what ORS is to a dumdum elf.

You mentioned POTS, so I probably need to know

 

[Pino]

Please explain what ORS is to a dumdum elf.

You mentioned POTS, so I probably need to know

Oral Rehydration Solution, i mix it myself, i got the idea from here:

• "Many ME/CFS patients suffer from polydipsia – a condition that involves unquenchable thirst, dilute urine, a worsening of thirst during post-exertional malaise (PEM).
• An Irish ME/CFS patient used to suffer from this symptom at its most extreme – to the point that he developed life-threatening hyponatraemia and was hospitalised. In the hospital, he was diagnosed with a mental health condition, ‘psychogenic polydipsia’, in which it is assumed that patients drink enormous quantities of water in the absence of physiological needs and because they are mentally ill.
• Excessive thirst in ME/CFS is mainly caused by the low blood volume that is characteristic of the illness. Research has consistently found that ME/CFS patients do not have enough blood, with some patients short by a litre or more. The most significant reason for this reduction in blood volume appears to be the suppression of the renin-angiotensin-aldosterone axis, a hormonal system which controls salt levels in the body.
• The brain actually has two distinct thirst centres: osmotic (triggered when the body’s water content is too low) and hypovolemic (triggered when the plasma blood volume drops by 10%). It is this little-known second thirst centre that is likely being triggered continuously in ME/CFS patients.
• Crucially, the hypovolemic thirst centre is not ‘looking’ for water in order to be ‘quenched’. Blood is salty stuff and, in order to boost blood volume, the ingested fluids need to be appropriately salty.
• Researcher believe that most ME/CFS patients fall into the understandable trap of just drinking pure water in response to their thirst (for who doesn’t drink water when they are thirsty?). When this water is excreted by the kidneys, though, the blood volume will remain low and, as a result, the thirst will continue – and even grow – as sodium levels and blood volume continue to drop.
• When the patient switched from drinking pure water to drinking ORS (oral rehydration solutions), he experienced a profound decrease in his thirst along with a significant improvement in his quality of life. In previous research, ORS has been shown to increase blood volume as effectively as a saline IV in POTS patients.
• „Psychogenic polydipsia“is a condition which has received little research and which is generally regarded as a ‘medical mystery’. In fact, several leading academics have suggested that the supposed ‘psychogenic’ basis might be a mistake and that the real mechanisms simply haven’t been identified yet. The earliest papers into the condition are from the 1940s and 50s. Those patients had symptoms reminiscent of ME/CFS such as ‘aching everywhere’ and profound ‘weakness of the legs’. Among other reasons, this led to believe that, at least in many patients, what has always been termed ‘psychogenic polydipsia’ may have been a misreading of the biomedical thirst experienced in ME/CFS patients."

My personal recipe:

1. 5g Glucose (i do use black currant sirup)
2. 2,5g Sodium-Chloride
3. 2,5g Sodiuem-Citrate
4. 1,0g Potsassium-Chloride

in 1000ml (round about 36oz water).

It helped me to get my water intake significantly down, and my thirst is much less now.

 

[ltaluv]

That's a lot of sodium in your recipe! For reference, the WHO recipe is 3/8 tsp (900 mg) salt, ¼ tsp (1200 mg) potassium chloride, ½ tsp (3g) baking soda (sodium bicarbonate), 8 tsp (34g) sugar, and tap water to make 1 liter. Gram measurements are approximate and based on conversions i found online, so take them with a grain of salt.

I have to wonder if switching to sodium bicarbonate from sodium citrate would make it taste better or worse.

 

[Pino]

I found different amounts of salt, but all are called WHO recipe. Strange somehow.

Wikipedia Germany says: "Die WHO empfiehlt folgende Zusammensetzung für einen Liter Wasser:"
(The WHO recommends following composition for one Liter of water

• 13,5 g Glucose
• 2,9 g Natriumcitrat (Sodium Citrate)
• 2,6 g Natriumchlorid (Sodium Chloride)
• 1,5 g Kaliumchlorid (Potassium Chloride)

I am very close to that, but reduced the Glucose and Potassium, because i got problems with that, my heard was sometimes racing and pounding (more than usual with POTS), and the Glucose made me gain weight a lot in short time.

Important: Without Glucose that seems not to work for me either!
Before going ORS i tried to "salt up" my diet, that did not work really and i could not reduce the fluid intake at all.
Usually "take more salt" is what most doctors say when you are diagnosed with POTS, as i said, did not work for me, ORS does.

I will give the Sodium Bicarbonate a try.

 

[OmiOMy]

I found different amounts of salt, but all are called WHO recipe. Strange somehow.

Wikipedia Germany says: "Die WHO empfiehlt folgende Zusammensetzung für einen Liter Wasser:"
(The WHO recommends following composition for one Liter of water

• 13,5 g Glucose
• 2,9 g Natriumcitrat (Sodium Citrate)
• 2,6 g Natriumchlorid (Sodium Chloride)
• 1,5 g Kaliumchlorid (Potassium Chloride)

I am very close to that, but reduced the Glucose and Potassium, because i got problems with that, my heard was sometimes racing and pounding (more than usual with POTS), and the Glucose made me gain weight a lot in short time.

Important: Without Glucose that seems not to work for me either!
Before going ORS i tried to "salt up" my diet, that did not work really and i could not reduce the fluid intake at all.
Usually "take more salt" is what most doctors say when you are diagnosed with POTS, as i said, did not work for me, ORS does.

I will give the Sodium Bicarbonate a try.

It's because of the sheer volume of salt we just sorta dump. I don't know for certain what's causing my epic thirst, but I do know that if I don't start supplementing with added electrolyte minerals in my drink (I have a specific lemonade blend that I drink to help with cystitis pain) I'm bound to test for low sodium, potassium, AND magnesium at my nest labs. The one time I cut my sodium intake to 'normal' levels I was sicker'n'hell, and my doctor literally asked me "WHY?"

To a liter of water
I use commercial electrolyte packets (half a black Gatorade packet, the ones for cramping), half a cup of lemon juice, half a cup of monkfruit sweetener to sweeten, and this all gets reconstituted into my liter drinking bottle. Usually I do ice it. I work on a bottle of this on days I notice I'm in the bathroom all day. This seems to cool things off in there, and after a while things act normal again.

I use the monkfruit sweetener because my doctor wants me to watch my sugar intake.

 

[babywolfboy]

oh wow, thank you so much for this thread, i learned a lot! i have fibromyalgia, but it has been a question of "do i also have comorbid CFS/ME as well?" for years with little to no answers because i've been intermittently homeless and thus lost progress with specific doctors. i had no idea there was so much that goes into it, but goodness, so much of that makes sense! my partner has Crohn's disease and also does not have enough blood in their body which makes them extremely exhausted... thank you this is a really informative thread!

 

[OmiOMy]

oh wow, thank you so much for this thread, i learned a lot! i have fibromyalgia, but it has been a question of "do i also have comorbid CFS/ME as well?" for years with little to no answers because i've been intermittently homeless and thus lost progress with specific doctors. i had no idea there was so much that goes into it, but goodness, so much of that makes sense! my partner has Crohn's disease and also does not have enough blood in their body which makes them extremely exhausted... thank you this is a really informative thread!

the whole 'not enough blood' thing threw me for a loop tbh...then I remembered how long it took to actually GET the blood for a simple blood sugar stick today. It should not have been that difficult ^_^;

 

[winterheart01]

I prefer one of the premade ones, the tablets from etixx : https://www.etixxsports.com/en/products/sport-hydro-tab
These contain an extreme low amount of carbs since i'm diabetic but they contain 2.08g salt per tablet, one tablet must be put in 1 L water.
and yes they do remind me of a colonoscopy drink but it's not that bad, I drink this more in the summer because I sweat a ton of fluids and honestly I really should drink more water too :s

for those who don't know this product: it's an electrolyte solution when sweating a lot, I learned this when I went fursuiting for the first time in germany and one of the others there was an army field medic and handed me a bottle of that stuff to prevent my muscles from cramping up after sweating so much.

One strange thing about this ORS brand is that I seem to be more thirsty after drinking it and produce less urine compared to drinking the same amount in water. I presume this is because of the salt in it.

 

[Pino]

@OmiOMy how about the acid from the lemon juice? My interstitial cystitis gets through the roof when drinking any kind of citrus fruits, but lemon or lime is the worst, followed by orange juice. Same for artificially stuff like Gatorade.

@babywolfboy Fibromyalgia and MECFS go hand in hand, i do have both, like about 30% of people with ME. There are a lot of problems with ME or Fibro many doctors do not know a shit about. The bladder problems are part of it either, same for IBS or MCAS.
Most time you end with "it all in your head", you need to figure out yourself a lot.

@winterheart01 strangely the ORS does not work for me without at least some Glucose in it.

 

[berrt]

I have POTs and really dislike the electrolyte drink mixes too. I have found that taking one dose of vitassium pills in the morning and one dose in the late afternoon really helps. They are pretty affordable compared to LMNT drink mixes (which are tough to drink and expensive). You could also throw in some magnesium vitamins to round it out better. I can enjoy my morning water bottle by taking the vitamin pills instead of the terrible drink mixes - it also reduces the sugary drinks by having to add sweeteners to the ORS.

I will admit that I still keep a supply of the LMNT drinks for my really bad days. They are an immediate shot of sodium, potassium, and magnesium that helps quickly. Sometimes you just gotta suffer through it to feel better.

 

[winterheart01]

@winterheart01 strangely the ORS does not work for me without at least some Glucose in it.

this could be , they offered lots of haribo candy in the headless fursuit lounge along with electrolyte drinks so maybe it depends on the condition, person or what you did to need an ORS.
for us it was mainly sweating large amounts and requiring salt + electrolytes was essential, there were also salty snacks like mini pretzels there too just to prevent muscle cramps but to be honest I personally cannot speak about the difference between the results of an ORS with or without carbs because one with carbs is dangerous for my health, but it could be glucose can be required in certain cases, otherwise they wouldn't offer candy in the headless lounge (a place full of ventilation fans , salt snacks , candy and where you could take your head off)

 

[Pino]

@berrt thanks for the advice, i am already taking NEMs (supplements), like vitamins and above all magnesium and zinc.
I will get really bad muscle problems and autonomic movement when not taking it for more than three or four days.