Have to drink tons and tons of water or I'm dizzy

waif

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Hi all,

Im extremely thirsty all the time and I have to drink a LOT of water, frequent urination. At night I pee nonstop, never wet the bed or even come close. Just the need to go dramatically increases. I have h-eds. Is this a CFS sx? I feel like I have to drink water moving around or I'll become dizzy? So before I walk around in public I chug tons and tons of water

I've avoided mentioning to anyone because I don't want to talk about diabetes (I have *very* mild but controlled IR). Also relative to my other sx it's trivial.
 

Judee

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Make sure you are getting electrolytes with that water. I have ended up in the ER twice with hyponatremia (low sodium). It can be dangerous. The bad part for me is when I should get salt cravings, I don't...not at all. Instead I get cravings for more water.

I make my own electrolyte if you need to know how. Also I find drinking the electrolyte makes my bladder pain get better.

I suspect I have IC - interstitial Cystitis but have never gone through the testing to determine that.

(I didn't understand some of your abbrieviations so if I missed something, I apologize.)
 

waif

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Oops sorry
sx = symptoms, ir= insulin resistance, heds = hyper mobile ehlers-danlos syndrome

I have numb hands so super lazy typing


Yes I drink electrolytes and they don't come back low unless the lab work is faulty
 
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Make sure you are getting electrolytes with that water. I have ended up in the ER twice with hyponatremia (low sodium). It can be dangerous.
You totally read my mind, @Judee .... I drink a lot of water (3 liters a day and a little more if I can manage it), not because I'm thirsty, but because I tend to feel a little better if I stay hydrated.


ELECTROLYTE DRINK
I start my morning with my own eccentric electrolyte drink on a completely empty stomach, which includes ginger, cinnamon, about 1/16 to slightly less than 1/8 teaspoon of salt, 1/8 t, of Bulk Supps magnesium, about the same amount of potassium gluconate, 1/2 t. plain old table sugar, 550 mgs of powdered garlic (glutathione assist), a clutch of herbs I whisk in cause I think they help, 1/2 t. of plain gelatin, and enough stevia and warm water to turn it into a pleasant sweet tea. I whisk it til it's foamy, and down the hatch. Aside from the benefit of the electrolytes and herbs, it's a pleasant way to start my day.

Not a morning person.

I repeat that about 4-5 hours later, and earlier if I can feel my body asking politely, which it usually does by causing crankiness, pain and fatigue. On really bad days, I'll repeat it up to 4 times, slightly reducing the amount of potassium if I sense that's not as needed as the other stuff, usually indicated by slightly elevated heart rate, tho not always, and not until my third round. I've got it down to a science, so even on my bad days, I can prop myself against the kitchen island and whip it up in a jif.

I think it's been part of my slow improvement, tho I have no way to prove that ....

PS @waif .... I totally loooove your avatar .... can I have one? I hope you feel better. I agree with @Judee, electrolytes might be the thing .... not a cure all, but a healer-helper ....
 

Mouse girl

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I need to eat salt on everything. helps alot. I almost ended up hosptialized due to low sodium levels. electrolites and salt can help some people. I was insanely thirsty when i stopped eating salt and thank goodness my doc had blood work done and i found out.
 

lenora

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Hi @Mouse girl.....Have you been to an endocrinologist? This is important b/c if it is diabetes you need to have immediate treatment. Not to scare you, but you can have internal organ damage, loss of limbs and many other things that can too late to reverse if they aren't caught in time.

That's a lot of water that you're drinking, so I suspect there is some reason behind it. Find out why. I also have pre-diabetes, have had it before, and managed to get myself out of it. I'm hoping the same will be true this time, and I'm overdue for both blood and urine tests. Trust me, I don't want one more doctor involved but it is a snowball effect. (Should mention that I had to take medication for a time.)

Please get properly checked out....and that may take time and many tests. But once it's done, it's behind you and that's a rather good feeling. I know your energy must be low at the moment, but it's something you should do for yourself.

Salt is one of the electrolytes that Judee mentioned. You'd be surprised at the things that can be caused b/c of low electrolytes or some imbalance of them. Too much water can wash them out of the body. Yours, Lenora.
 

Pyrrhus

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I believe hypothalamic dysfunction can result in low levels of the hormone vasopressin. Low levels of vasopressin could result in poor water retention in the body, excessive thirst, and low blood volume. The low blood volume could worsen orthostatic intolerance, resulting in dizziness...

Related discussions:

Is thirst a thing for us ?
https://forums.phoenixrising.me/threads/is-thirst-a-thing-for-us.83297/

Is your Hypothalamus up the creek?
https://forums.phoenixrising.me/threads/is-your-hypothalamus-up-the-creek.81181/

Is POTS a central nervous system disorder? (Blitshteyn, 2021)
https://forums.phoenixrising.me/thr...ervous-system-disorder-blitshteyn-2021.83181/

I hope this helps.
 

Woof!

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@waif - Have you ever tried drinking only through a straw? It would limit how much you take in at a time, so your blood pressure doesn't suffer from large highs and lows in response to your gulping larger amounts at a time. (That's not an original idea...it was something mentioned in a really good book I read once "You're not sick... you're just thirsty" about a prison doctor trying to treat sick prisoners with very little at hand.)

@Pyrrhus - what do you think about that?
 

waif

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I have pots but the thirst I feel like is disproportionate to my pots...like when I was younger my pots was a billion times worse my blood pressure got low. Now it's on the high side. I didn't feel this urge to chug water. I didn't have horrible pain tho!

I developed horrible neuropathy in my arms/neck/shoulders around the time I developed frequent thirst. I feel better skimming those threads maybe it's a weird vasopressin issue. My blood sugar is too stable for it to be prediabetes.

Lol I also have IC and have since I was like 20. Huge warning sign.
 

Mouse girl

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@lenora , I think maybe you meant to direct your post to someone else? I didn't put down how much water I was drinking, it was someone else. My doc did check my blood sugar in the past. I'm getting some hormone and vit D blood work and something else soon.
 

wabi-sabi

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I'm getting some hormone and vit D blood work and something else soon.
That's good. You might want the blood sugar checked again if it's been awhile. Needing to drink a lot can be a sign of orthostatic intolerance (which happens with ME/CFS), but it could also be other stuff too. Diabetes comes to mind, but I'm sure there's more.

Point is, get the tests and make sure it's "just" ME/CFS and not something else that's important and treatable.
 

waif

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Another thing that happened, I developed pretty severe dry eye syndrome. I'm jealous of anyone who can stare at a screen for hours. It kills me

For awhile I was worried I have sjogrens but my mouth is zero dry

T2 diabetics are only thirsty when their blood sugar is unstable right?
 

lenora

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@lenora , I think maybe you meant to direct your post to someone else? I didn't put down how much water I was drinking, it was someone else. My doc did check my blood sugar in the past. I'm getting some hormone and vit D blood work and something else soon.

You're quite right Mouse girl....sorry for the intrustion. Yours, Lenora.
 

lenora

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I have pots but the thirst I feel like is disproportionate to my pots...like when I was younger my pots was a billion times worse my blood pressure got low. Now it's on the

high side. I didn't feel this urge to chug water. I didn't have horrible pain tho!

I developed horrible neuropathy in my arms/neck/shoulders around the time I developed frequent thirst. I feel better skimming those threads maybe it's a weird vasopressin issue. My blood sugar is too stable for it to be prediabetes.

Lol I also have IC and have since I was like 20. Huge warning sign.
Hi @waif.....I sent a reply to Mouse girl instead of you. Sorry about that.

My BP was also exceptionally low and then once I hit about 40 it went in the opposite direction, very high.
I still think you should see an endocrinologist who may be able to shed some light on exactly what is occurring. It's possible that you may have more conditions going on....that becomes common with us.

Do you have any allergies? Sjogren's is always a possibility, but if allergies are common to your area, you may have them even if you never had any symptoms prior to now. Fans of course make them worse, it's common to have dry eyes and mouth if you're taking meds for allergies and while with most people allergies improve with age, it seems that with us they get worse. So just some thoughts....I'd still see a specialist, especially about the urination and thirst. Hope things are settled soon. Yours, Lenora.
 

Booble

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I feel very thirsty at night. I always need to drink a few big glasses of water. Luckily for now my bladder is like a camel and I can usually hold it the whole night if I pee a few times before going to sleep.