too much water

[Moiraine]

I was just watching a video on YouTube on dysautonomia. The doctor said to drink 2 1/2 liters a day. I sat down and figured out my water intake because I thought it was more than that. Yes, it's about double that...and has been for like the past 30 years, especially in the summer. I don't drink quite so much in the winter, but still probably 4 liters. I know people with dysautonomia need more fluid, but is this too much? If I don't drink this much I start to get muscle cramps, and the slow sluggish feeling of dehydration.

Anyone else drink this much?

[Pistol]

@Moiraine it is important to consider that when you increase your fluid intake you must also increase your salt intake. Water goes where salt goes, so in order to keep the water in your vascular system ( and to ensure that excess gets eliminated ) they both have to be increased. My M-I-L has Sjorgens syndrome ( an AI disease attacking the saliva glands, causing the body to not make enough digestive enzymes like saliva ) and since she has dry mouth and eyes she has to drink about as much as you do every day. She does not seem to have any problems with it but also does not increase her salt intake. Her body soaks up the extra fluid it needs to lubricate and the rest gets eliminated, she pees a lot. However - in dysautonomia it is important that the extra fluid stays in the blood vessels to boost our intra vasal volume, and that can only be achieved by also increasing salt. 

Have you been eating more salt?

[Moiraine]

@Pistol Sometimes I am good about increasing the salt and sometimes I am not. Unless I write it down I forget. I've written it down on my to do list for the rest of the week, so I'll be good. I'll need to keep up with it. I have developed Sjogren's in the past five or six years to go along with the dysautonomia that I've had for decades. Trying to stay hydrated has been really difficult.

[MikeO]

@Moiraine I take 80 oz of fluid a day so far has worked reminder is not to drink just water. Corking up with salt with a heart issue does not work even with prinzmetal angina just makes it worse. I just had this conversation today with my cardiologist. Yes staying hydrated can be difficult drugs can take fluids out of you as well.

Wish you luck!

[Pistol]

@MikeO - I have prinzmetal angina and do well with lots of salt, it does not make mine worse. I also have Reynauds syndrome ( exact same mechanism as prinzmetal, just limited to the toes ) and what I see as a trigger to both of them is stress, sudden temperature changes and overeating. 

[MikeO]

14 hours ago, Pistol said:

@MikeO - I have prinzmetal angina and do well with lots of salt, it does not make mine worse. I also have Reynauds syndrome ( exact same mechanism as prinzmetal, just limited to the toes ) and what I see as a trigger to both of them is stress, sudden temperature changes and overeating. 

I know it can be difficult to find what works for an individual and a high salt uptake is a good solution for the right person. i agree that ( stress, sudden temperature changes and overeating) has triggered an event for me but so does just laying in bed at night. A prinzmetal spam also can be triggered by ischemia.

When i do intake too much salt i start to build up fluids and will (swell up) gain sudden weight, joints hurt etc... Salt can increase fluid retention and worsen edema which in turn stresses my heart more and causes poor blood circulation and will trigger episodes of a prinzmetal spasms. My only recourse is to take lasix to loose the fluid which puts me right back in a vicious cycle of having to try and get back to state that works for me.

 At one time the cardiologist talked about putting me on a CCB which will help the spasms but this class of drug can cause edema in the ankles which is not good for my PVD so as long as the episodes are infrequent i will just take a nitro tab  

 

I

[Moiraine]

Thanks for the replies. I wish you both well.

[Nelson G.]

Plain water sometimes feels good, but overall I just avoid drinking plain water (even though I filter it).   I still use my filtered water to blend fruits, and cook. Or make oatmeal, tea/infusions, etc.  I recommend everyone to get a water filter!

Now
The most optimal way I have to drink and make sure I hydrate myself is to take a sip of whatever I'm drinking every 5 minutes,  just a sip,  no matter how thirsty I am I try not to 'chug' that thing.  It is a bit a test of patience and going against our thirst senses sometimes.
And unless my drink is less than 500ml, I tend to use a straw, to prevent me from 'chugging' big drinks 'accidentally'.
I also sip pedialyte 60 every now and then during the day (you can drink anything similar) just a sip or two every few hours. 

Unless you have a reason not to eat a banana daily,  I would recommend doing it, potassium is great for muscle cramps, and many other things.  IME potassium should be recommended for us just like sodium, along with magnesium and well,  that's a different topic,  but minerals in general.

 

I have an anecdote about why I usually sip my drinks:

When I was a child I used to have days where I had lots of vomiting out of nowhere.  My mom would try to hydrate myself with water, or sugarless juices, even pedialyte like drinks,  but I would vomit them right away,  this putting me in a state of dangerous dehydration.  That day (I was like 8 years old) in yet another visit to emergency due to heavy dehydration my pediatric had an odd change of mind,  he didn't gave me my usual IV, but made me drink about 1L of lets say, unlabeled hospital pedialyte,  it tasted like h***! like some dirty sea water,  even the doc described it that way, and made a legit disgust face, and apologized it had no fruity flavor, or color. 
He asked my mom very firmly to make sure,  I sip that thing every 5 minutes and rest.  I sipped once, and felt nausea, but not vomits, after a few more sips I was simply disgusted by it's taste and I was also bored because I didn't bring a toy or anything to play with (no TV in the room!),  I was in a really bad mood,  I was really mad at him, and even at my mom,  but after several minutes (more than an hour),  most of my dehydration symptoms were gone I was much more better,  but I was really thirsty,  that thing tasted horrible but I wanted to 'chug' it down,  mom told me not to,  but I still went on and had more than a sip of it.   Nausea came back.   So I kept on sipping it.  And fell asleep. 
I recovered fully that same day.

 

Many years later got diagnosed with pots,  and now I use the same technique that kind man gave me   not sure if intentionally. 

 

 

[Pistol]

5 hours ago, Nelson G. said:

My mom would try to hydrate myself with water, or sugarless juices, even pedialyte like drinks,  but I would vomit them right away,

@Nelson G. - that is funny, I had the same problem growing up, and still do! One of the reasons I get IV fluids every week is because I cannot keep down fluids, especially anything non-carbonated. Even a sip or two makes me nauseated and - of I continue despite the nausea - makes me throw up. As a child I was diagnosed with a psychological problem! Now, in hindsight, I realize that all of that ( plus the frequent faints that also were contributed to psychological reasons ) were due to POTS!

[MikeO]

9 hours ago, Nelson G. said:

I tend to use a straw, to prevent me from 'chugging' big drinks 'accidentally'.

I use straws as well. I tend to aspirate quite a bit and the straw helps me keep my neck in the right position and close the esophagus flap 

[Nelson G.]

On 11/4/2021 at 4:21 AM, Pistol said:

@Nelson G. - that is funny, I had the same problem growing up, and still do! One of the reasons I get IV fluids every week is because I cannot keep down fluids, especially anything non-carbonated. Even a sip or two makes me nauseated and - of I continue despite the nausea - makes me throw up. As a child I was diagnosed with a psychological problem! Now, in hindsight, I realize that all of that ( plus the frequent faints that also were contributed to psychological reasons ) were due to POTS!

Wow...  it's so great when you find people who had the same issues... specially if they also got told it was psychological 😡
I find interesting that you have problems with non-carbonated fluids.  Because on the contrary I have problems with carbonated fluids,  they kinda,  fill my stomach with gas,  it feels like I can't burp (sorry if too much info),  I tend to feel bloated, as if I had take a large meal, and well,  related POTS/Dysautonomia symptoms arise.  Ever since I was a kid I have difficulty to burp and it feels bad when it can't come out. Now, it sometimes happens,  it sometimes it doesn't, I would say it improved as I enter my adulthood.  But overall I avoid fizzy/carbonated drinks, because most of them are sugar-sodas,  but maybe someday I'll tray carbonated water.
If my stomach is feeling really bad and I need hydration I can only get drinks with lots minerals/electrolytes.  It's been a while since I had vomiting thank god... 

I wish I could get regular IVs 🥺  I'm having a hard time finding a cardiologist (any) because my health care sucks/or they're suddenly busy,  but once I find another one,   I will try to convince him IVs are good for us.  
Only a while ago I find out IVs can be a treatment/therapy.   I knew I felt different (for good) every time they gave me one!  I had that hunch.