Why do we lose fluids?

[Ninan]

Does anyone know exactly why some of us lose fluids when we crash? I have to drink many liters/hour to keep up. I read some research that pointed towards changes in renin/aldesterone activity, is that it? Or something else? Low mitochondrial function in some way? Has anyone tried any treatment to counteract this? I have tried IV saline but it doesn't help when I crash.

 

[MeSci]

Does anyone know exactly why some of us lose fluids when we crash? I have to drink many liters/hour to keep up. I read some research that pointed towards changes in renin/aldesterone activity, is that it? Or something else? Low mitochondrial function in some way? Has anyone tried any treatment to counteract this? I have tried IV saline but it doesn't help when I crash.

I don't know why we lose so much fluid, but I take desmopressin to stop it.

 

[lansbergen]

I noticed for many years during flares mucosa are dry and at the end of a flare mucosa leak fluid.

I think during flares the immunes system uses water and oxygen to produce hydrogenperoxide.
Cells even have organells ( called peroxisomes ) to make hydrogenperoxide.

 

[Gondwanaland]

I guess in my case it was my body trying to dilute and excrete excess lactic acid, uric acid, oxalates

 

[Ninan]

I don't know why we lose so much fluid, but I take desmopressin to stop it.

Does it help? What kind do you take? Dosage?

 

[JaimeS]

I always wondered if it was an inability to produce enough ADH (anti-diuretic hormone) to keep us from peeing it out. ADH is produced by the hypothalamus and released by the pituitary, and there is some evidence that one or both of these have impaired function in ME patients.

 

[*GG*]

Does anyone know exactly why some of us lose fluids when we crash? I have to drink many liters/hour to keep up. I read some research that pointed towards changes in renin/aldesterone activity, is that it? Or something else? Low mitochondrial function in some way? Has anyone tried any treatment to counteract this? I have tried IV saline but it doesn't help when I crash.

Is it when we crash, or some time before that? I have a scale that gives me % water, I am usually around 50%. Had a High reading for Osmolality, range is 278 to 305 mOsm/kg. My test result was 426, need to look this up now. Saw my specialist back in November, and he mentioned going back on E-lyte, 2 to 3 capfuls a day.



GG

 

[MeSci]

Does it help? What kind do you take? Dosage?

Yes, it almost always helps - a lot.

I take about 50 micrograms at a time during the day, and about 100 micrograms at night, but it varies. I take the oral form, in pills, and divide them in a pill-splitter. I take between 100 and 200 mcg a day.

There are quite a lot of threads in which I refer to this - if you search for 'desmopressin' (using my name as author in 'posted by member' if you want) you'll find them.

 

[msf]

Because we have holes in our bodies.

According to KDM, and this makes sense with my own condition, it´s a result of a decrease in ADH, as JaimeS suggested. From what I´ve read, this might be a response to an increase in LPS, which may be present during a ´crash.´

 

[ryan31337]

I read some research that pointed towards changes in renin/aldesterone activity, is that it?

If you have POTS, more than likely yes according to studies. I don't think there's any consensus/evidence of what causes it though - some suggest neuropathy at kidneys, others think brain. Would assume different causes for different patients.

I exhibit the so-called “renin-aldosterone paradox”. Renin 1nmol/L/h (low normal), Aldosterone 70pmol/L (low). I knew it was out of range but hadn't realised how low until I just looked up a study...

 

[MeSci]

Yes, it almost always helps - a lot.

I take about 50 micrograms at a time during the day, and about 100 micrograms at night, but it varies. I take the oral form, in pills, and divide them in a pill-splitter. I take between 100 and 200 mcg a day.

There are quite a lot of threads in which I refer to this - if you search for 'desmopressin' (using my name as author in 'posted by member' if you want) you'll find them.

In case you don't see it, there is a risk of hyponatraemia (low blood sodium), so make sure you have plenty of salt. There is more info on this here:

http://forums.phoenixrising.me/inde...s-on-hyponatraemia-at-last.28712/#post-436677

 

[roller]

actually, i dont think that we loose fluid.

the homeostasis (water balance in the body) changes for "some reason".

then the ADH production adjusts, and we run into problems:
we may feel thirsty, more peeing or urinary retention, as well as dizziness/fainting and so on...

it may be that we just sense thirst, due to the changes. its a misperception.
liquid is not lost, imo.

 

[MeSci]

actually, i dont think that we loose fluid.

the homeostasis (water balance in the body) changes for "some reason".

then the ADH production adjusts, and we run into problems:
we may feel thirsty, more peeing or urinary retention, as well as dizziness/fainting and so on...

it may be that we just sense thirst, due to the changes. its a misperception.
liquid is not lost, imo.

Have you looked at some of the links? I had severe fluid and sodium loss - not far off fatal. I have had to have intravenous sodium and fluid more than once. I suffered severe sodium loss to my bones, resulting in a wrist fracture.

People must check their sodium if they suspect this.

 

[JaimeS]

Because we have holes in our bodies.

According to KDM, and this makes sense with my own condition, it´s a result of a decrease in ADH, as JaimeS suggested. From what I´ve read, this might be a response to an increase in LPS, which may be present during a ´crash.´

Absolutely! I think it's not just a sign of dysfunction / source of symptoms, but a sign that the body is trying to protect itself. Lowered blood volume at least implies a decrease in the circulation of pathogens.

I'm finding that I view a lot of our symptoms this way, in the light of being a protective measure rather than a downstream 'mistake'.

As always, though, let me add the disclaimer that I don't have hard evidence for this. It just seems sensible, but I'm well aware how wrong things can be that "seem" sensible on the surface.

-J

 

[JaimeS]

If you have POTS, more than likely yes according to studies. I don't think there's any consensus/evidence of what causes it though - some suggest neuropathy at kidneys, others think brain. Would assume different causes for different patients.

I have a lovely book on NS dysfunction that lists multiple causes for POTS. Since it's a 'syndrome' more than one thing can cause it. Different in different patients, as you say.

 

[JaimeS]

actually, i dont think that we loose fluid.

Several studies show reduced blood volume in ME. Here's a good synopsis by Solve : http://solvecfs.org/slow-flow/

 

[RL_sparky]

Yes, it almost always helps - a lot.

Hey MeSci,
Do you ever get headaches from the desmo? I tried it a few times and it helped substantially but even at the lowest dose I would get a bad headache.

 

[MeSci]

Hey MeSci,
Do you ever get headaches from the desmo? I tried it a few times and it helped substantially but even at the lowest dose I would get a bad headache.

No, I haven't had a headache from it. No side effects as far as I am aware, except possibly inflation below the waist, which usually goes in the evening. Was it tablet-form?

 

[RL_sparky]

Was it tablet-form?

Yes. I ended up even grounding the pill into powder and taking just a tiny bit but I always developed a headache from it.

 

[MeSci]

Yes. I ended up even grounding the pill into powder and taking just a tiny bit but I always developed a headache from it.

That's unfortunate. I see it's common in the side-effects lists.