Anyone's Thirst Drive Lessened?? Dehydrated?

[little_blue_jay]

Hey all I've been having a flare-up for a good couple of weeks now. Two weeks ago today it was so bad with the racing heart and shortness of breath that I went to the ER (again - been there a couple times over the last couple years with this) and they took blood and urine and it came back that I was slightly dehydrated and my potassium was a bit low. Not extremely low potassium as I was able to follow up with my doctor only a few days later (thanks to someone who cancelled or else its very difficult to get in to see him!) and he said that my potassium was only 1 hundredth of a point out of range (range is like 3.5 to something and I was at 3.4) so he said that wasn't the cause of all my symptoms. (I've since bought "No Salt" and been sprinkling it on every meal!)

They also said it got flagged on my lab work that my ketones were high (I do eat low carb, my doctor told me to eat this way) Is it possible that as my body was trying to get rid of excess ketones that that made me dehydrated? And potassium gets caught in the crossfire?

My doctor was more concerned about my being slightly dehydrated, and that really took me by surprise too as I *thought* I drink enough water throughout the day. I do try to not wait till I feel thirsty to drink but try to have a bottle of water near me and just keep taking swigs every so often. I do drink perhaps one or two cups of tea but not strong, I take the tea bag out, and consciously try to balance it with a cup of plain water afterwards.

Now ever since then I've been paying attention to my pee which I've noticed sometimes is too dark yellow which I know means dehydration, but it's odd that I have so little thirst drive, I've never had to pay attention to my pee before but I don't want to be dehydrated again either as I know that's bad! When I wake up my pee is kinda too dark for my liking but I can't drink alot before bed or it'll just make me get up to pee before I can sleep.

Even though it's June it hasn't been really hot here lately either (S. Ontario) so it's not like I'm sweating buckets and not replacing it! In fact I've been finding it downright cool, wearing sweaters in the evening, etc. but then again when I'm POTSy my hands are perpetually cold!

I thought with POTS you're supposed to be excessively thirsty, says so on our symptom list! I even use nice pink sea salt on my food. Why should my thirst drive be lessened?? Anyone else find this odd? Anyone else ever gone to the ER and been told they were dehydrated (but not from something obvious like diarrhea)?

[Katybug]

I go through periods when I have no thirst drive. I force myself to drink anyway but it's hard because when I'm not thirsty, drinking liquid, particularly water, makes me nauseous. I've never been diagnosed with dehydration but my POTS doc says I likely have low blood volume (haven't been tested though).

[little_blue_jay]

Yes darn it that's exactly what happened to me a couple of times lately! I noticed my pee was too dark yellow for my liking so even though I wasn't thirsty I made myself drink a full bottle of water immediately and started on a second one within 5 minutes as the shade of my pee was a bit alarming (to me, I get freaked out easily by such things!) and almost immediately I felt nauseated! I was thinking 'what the heck is going on here'.... my pee tells me I'm dehydrated, I drink water and I feel slightly sick???! I did not 'chug' the water, just drank it within about a 3 minute period. I thought it very odd! Glad to see I'm not the only one!

Any ideas as to why our bodies would not signal the thirst drive instead of just letting dehydration set in?

How do they even test for blood volume anyway? I really should ask my doctor about this!

[Katybug]

I don't know. Before I got pots, if I drank 24 oz. total a day, it was a lot. I have always felt nauseous when I drink a lot. It's actually not as bad now that I have pots, I can drink much more than I used to, but, there are those days when I struggle to balance the nausea and staying hydrated. And, I sweat profusely now even in the "arctic vortex" that has hit the east coast the last 2 winters, so losing all of that fluid makes the whole situation even more challenging.

Oddly, sometimes during the day I won't be thirsty, then I will lay down to sleep and I become crazy thirsty. That always starts a bad cycle of drinking, peeing, not sleeping, repeat.

I have to think it is part of the autonomic dysfunction and I think "although I have no scientific proof) that it must be affected by hormones and neurotransmitters that contribute to the many weird symptoms I experience.

[little_blue_jay]

I have to think it is part of the autonomic dysfunction and I think "although I have no scientific proof) that it must be affected by hormones and neurotransmitters that contribute to the many weird symptoms I experience.

I'm beginning to think so too. I am during a certain time of the month right now and it's weird because usually I'm nonstop thirsty during my period! This time, nothing. Bizarre.

Also during this flare-up I'm having (lovely that it coincides with my period ) I'm getting this thing where after a few bites of food the tachycardia starts. I have rotated my food for several days, not eating the same thing twice a day, and it still happens. I've concluded it's not what I'm eating, it's the fact that I'm eating at all. Or sometimes I'll barely eat a few bites and I'll feel slightly nauseated. I'm getting fed up! Pun intended!

[Nymph]

I usually get worse with my period.

I have found that 4-6 g of salt a day helps me to be able to drink more and not be constantly peeing. You mentioned sprinkling salt but you didn't say how much. When I was taking only 3 g it didn't help at all. I had to take more. Balancing it with potassium is a good idea. I am still trying to figure out how to do that but the no/low salt thing is a good idea I had forgotten.

One more thought. Friends of mine used to have trouble drinking enough during pregnancy due to nausea. One found that sparkling water went down better. Another drank iced white tea. Experiment with what works for you. There are so many options.

[pooter18]

when i went to mayo i was told drinking to much water tea coffee can cause you to be dehydrated because they do not have salt in them and the more you pee the more salt you loose and your not replacing it by drinking those..i was told to drink G2 Gatorade and V8 ..so i drink a glass of each during the day along with the water and tea (decaffeinated only) and i feel much better and my labs have been great..i also eat extra salt on my food and sometimes will just grab a salty snack during the day for a just in case..my blood pressure readings have also been more stable.

.so even though i was drinking a lot of water and tea and thinking i was doing myself good i was actually making my symptoms worse by deleting my salt ..learn as we go

i never leave the house with out one of those little bottles of G2 if i feel by b/p dropping or get light headed i drink it and i feel better..i almost panic if i forget it and head for the nearest store and buy one-security blanket of sorts

a little yellow to the urine is the best.. to dark and you need to drink fluids..sometimes i drink to much and mine is clear as water that is when i know i have drank to much and that is when i feel my worse..i have had urine test done when it was clear as water and it could not even be tested due to it being to diluted..so find a happy medium ..

[statesof]

I found that a lot of the time POTS tends to make me more thirsty, especially if it is hot or humid and I've been standing a lot I almost start craving water. That being said, I had to start drinking more water than I originally was just on my doctor's recomendation, he told me that first thing in the morning I should be drinking like 2-3 glasses of water because you loose a lot of hydration during your sleep. 2-3 glasses first thing in the morning feels like a lot when you drink it too.

[SarahA33]

Hi bluejay

Here are some links on blood volume testing. I had mine done at the Cleveland clinic

http://my.clevelandclinic.org/services/heart/diagnostics-testing/nuclear-imaging/blood-volume-testing

http://m.circ.ahajournals.org/content/111/13/1574.full

The last article offers some insight as to how they do the calculations.

[gjensen]

I find drinking water etc. is a habit either way. I do well in spells, and then not well at all. I have to keep drinking to keep drinking. If that makes any sense. Kind of the body in motion stays in motion . . .

[sue1234]

I drink ALL day long! I am always thirsty. I drink iced tea in the morning, but water the rest of the day. I eat my salt all day, and get potassium from my fruits. I pee ALL day long also. My urine is slightly yellow, which surprises me. I would think with all that I drink, it should be clear.

I have had my Vasopressin tested twice about 7 years ago, and both times it was low, so maybe that's why I am always thirsty.

[angelloz]

I was tested at the Cleveland clinic and was hypovolemic. I drink all day but I am never really thirsty. That was something I noticed when I first began to have odd symptoms. It was like I lost my sense of thirst. Once in a blue moon I get very thirsty before bed but this is rare. I keep on drinking though....

[Jemima]

On 18 June 2015 at 12:20 AM, gjensen said:

I find drinking water etc. is a habit either way. I do well in spells, and then not well at all. I have to keep drinking to keep drinking. If that makes any sense. Kind of the body in motion stays in motion . . .

I have totally lost my sense of thirst. I am so weak i can not get out of bed and breathing is flat dry and airless for me. My body feels numb.

[toomanyproblems]

Some people simply lack an adequate signal for thirst by nature. I've been like that since I was a child. I would get so dehydrated my pee would burn coming out and even as a kid I somehow knew to drink more to help it because I never mentioned it to anybody. I'm 63 and still like that. I very rarely ever actually get thirsty. I have to force myself to drink. I have my whole life. If I get distracted from it I just forget to drink.

OP if you are getting so nauseated with little water or food you might look up gastroparesis to see if symptoms fit or ask your doctor. It's common with dysautonomia. I have that.

[Peter Charlton]

Since I suddenly got all this Autonomic Neuropathy symptoms, I seem to have lost my sense of hunger as well as thirst. I did a little experiment a few weeks back, didn't eat as much as a peanut for 42 hours, and still didn't feel hungry, though I was feeling even more drunk than this business is making me feel anyway.

[yogini]

I would not worry so much about the color of your urine.  Everyone doesn't drink overnight so we all wind up a little dehydrated.  Make sure you are getting enough salt and electrolytes to help you retain water.  Yo might want to measure how much you are drinking. If you have like 3L per day, that should be more than enough.

I think many of us get tired of drinking water and we are also busy. It is easy to forget.

Sports drinks like gatorade can be better than water.  (I personally don't like gatorade because of the sugar, but there are other options too)

[RecipeForDisaster]

I absolutely never get thirsty, except once in a while if I'm very shocky (cold and gray on the floor time) but then I'm too nauseous to drink. In the past few months I have started to lose my hunger as well. I went more than a day without eating and just never felt the urge, nothing looked that appealing, not even my favorites. I didn't try a zofran because I wasn't really nauseous, just not hungry. My doctors don't seem to be interested because I haven't lost weight lately. I'm already fairly thin, and when I force myself to eat, it's fortified high calorie stuff to make up for missed meals.

 

i make myself drink and I do get my salt and water in, I just wouldn't drink at all if I didn't "need" to. Not even when it's hot, although I hardly sweat.

[bunny]

I've mostly cut out sodas and other sugary/processed drinks from my diet and noticed a big improvement in overall hydration levels. 

The interesting part is that since I did this, I'm drinking fewer drinks, BUT my body's overall hydration level seems to be higher.   My guess is that it's the excess sugar & salt in processed drinks that was causing my body to crave more drinks (salt) and yet need to urinate more often (sugar).