Ongoing Dehydration - Best medication to use long term to intentionally increase water retention?

[Replenished]

Hi all, I've posted many times before here about my main symptom being unbearable Dehydration, thirst, frequent clear urination which leaves me completely depleted.

I most certainly have POTS as well now. At the end of lady week I got to the point where I was just so depleted, Dehydrated and felt my blood/hydration volume was so low I needed to do something and therefore decided to start taking some of the Fludrocortisone I had from a previous prescription to try and create some water retention. The Fludrocortisone does seem to have reduced my Dehydration somewhat. I'm nowhere near normal/replenished/hydrated but I'm not absolutely unbearably Dehydrated like I typically am and I'm urinating less.

I realise though Fludrocortisone is not a good drug to be on long term due to its negative effects. But needs must currently. How bad is this drug long term though really if say I stayed in 0.1mg per day?

I seem to also have a similar effect of slight water retention from Nsaids. For me Fludrocortisone and Nsaids work better than Desmopressin which seems do very little for me nowadays.

My question is what is the best option in terms of these water retention drugs to be taking long term? Are there any others out there that might be less damaging long term?

The pots symptoms are also less since starting the Fludrocortisone. I'm pretty sure all of my symptoms are down to some form of low blood volume/hypovolemia but I don't have any idea how to correct it. I'd appreciate your wisdom guys. Any ideas?

Edit: Please no electrolyte suggestions. I've tried hundreds and they do nothing for me as I just urinate everything out. I need something to help me retain fluid.

 

[heapsreal]

I don't have pots but have diabetes insipidus and frequently blood tests show some dehydration.

I use minirin at night and it works well for me. Occasionally I have used it through the day. When I first used it I took it morning and night. After a few days it felt like it wasn't working. Once I backed off to once at night only it was fine. I don't think its directly tolerance to the medication but your body trying to get rid of the fluid as now that you retain more fluid, your sodium and other electrolytes can become diluted and your body is try to adjust everything.

A few times when I was on minirin twice a day, my sodium would drop, realistically became more diluted and fatigue was bad from low/diluted sodium. I starting taking salt tablets and it helped alot with fatigue and correcting low sodium from minirin.

I was losing alot of fluid through urination. With diabetes insipidus it can be neurogenic or nephrogenic. Minirin supposedly only works in neurogenic diabetes insipidus but not nephrogenic. Other word it's brain signalling, not directly from kidneys.

If it's low blood volume you could ask your dr about regular IV fluid treatments. You can get a permanent port/cannula port in and then do your own fluid treatments without needing a cannula put in every time. My daughter has EDS and POTS and was looking into this but has been managing with support stocking and pilates, strengthening her lower legs which somehow can help her with low BP. She did start the pilates in winter which I think helped get her going. It's now getting really hot here so see how well the pilates works for her. She doesn't have cfs so maybe abit easier to exercise????

Good luck.

 

[heapsreal]

Hi all, I've posted many times before here about my main symptom being unbearable Dehydration, thirst, frequent clear urination which leaves me completely depleted.

I most certainly have POTS as well now. At the end of lady week I got to the point where I was just so depleted, Dehydrated and felt my blood/hydration volume was so low I needed to do something and therefore decided to start taking some of the Fludrocortisone I had from a previous prescription to try and create some water retention. The Fludrocortisone does seem to have reduced my Dehydration somewhat. I'm nowhere near normal/replenished/hydrated but I'm not absolutely unbearably Dehydrated like I typically am and I'm urinating less.

I realise though Fludrocortisone is not a good drug to be on long term due to its negative effects. But needs must currently. How bad is this drug long term though really if say I stayed in 0.1mg per day?

I seem to also have a similar effect of slight water retention from Nsaids. For me Fludrocortisone and Nsaids work better than Desmopressin which seems do very little for me nowadays.

My question is what is the best option in terms of these water retention drugs to be taking long term? Are there any others out there that might be less damaging long term?

The pots symptoms are also less since starting the Fludrocortisone. I'm pretty sure all of my symptoms are down to some form of low blood volume/hypovolemia but I don't have any idea how to correct it. I'd appreciate your wisdom guys. Any ideas?

Ps
I don't know if your male or female but my hormones, testosterone dhea and cortisol were low. Getting on dhea and testosterone replacement helped me with DI.

 

[kangaSue]

Have you tried just some form of oral rehydration solution? When dehydrated, water alone is not particularly hydrating and needs the addition of both salt and a glucose source.

Many online sources have recipes, for example;
https://rehydrate.org/solutions/homemade.htm

 

[Replenished]

Have you tried just some form of oral rehydration solution? When dehydrated, water alone is not particularly hydrating and needs the addition of both salt and a glucose source.

Many online sources have recipes, for example;
https://rehydrate.org/solutions/homemade.htm

Thanks for the suggestion but I have tried so many electrolyte powders etc etc and they make no difference to me as I just urinate everything out. I need something to help the body hold on to fluid.

 

[Rufous McKinney]

Some of the traditional chinese herbs help with profound dryness. I can't recommend which herbs specifically, instead you should find an expert who can treat your individual situation.

to find such a person, is not necessarily easy. There should be 600 raw herbs in the office. If there aren't, you did not locate a chinese herbalist.

 

[Replenished]

I'm reading several positive reports of people using saline IVs that for some reason are being retained better than simply drinking.