A question about water

[Jyoti]

I finally was able to see a sensible doctor with expertise in dysautonomia who diagnosed POTS (of an ordinary, non-hyper sort) and suggested that I start out with increased salt and water, along with the compression hose I already wear.  He mentioned 3-4 litres of water a day as being a minimum and additionally told me that his wife, who has POTS, often drinks 6 litres a day.

I am the sort to 'go for it', so I immediately began trying to manage 6 litres a day.  Then I started wondering about electrolytes, and the danger of washing them all out of my system.  The vast amount of water is DEFINITELY  helping (hurray!) but I wanted to inquire here about how much others of you drink and/or consider healthy and therapeutic to drink.  I am sure it varies, but I am curious about the range.  If you could share how much you imbibe or what your daily goal is and how that works for you, I would be grateful.

 

[E pots]

I drink probably 6 liters but its constant drinking and peeing.  I feel horrible but less horrible.  I can see the BP go up n HR down w/ each drink but worried about electrolytes too.  

 

Been having twitches and spasms a lot

[cmep37]

There is no way I could drink 6 litres a day!  I drink between 2.5 - 3 litres of fluid a day (about 50-75% of that electrolytes) and I am never done peeing.  I go to the loo about 18 times a day and am up 3 or 4 times during the night.  The fluid just doesn't seem to stick with me but no-one in the UK will prescribe me IV fluids.  The other reason I couldn't drink that much is that I would have no desire to eat and my appetite is poor enough already.  

[Dystasysta]

Can you add propel powder the sugar free it gives you the benefit of electrolytes which is what we need . If you buy the Powder it’s much more economical and you can take packets with you if you are out 

[E pots]

On 5/24/2021 at 7:19 AM, cmep37 said:

There is no way I could drink 6 litres a day!  I drink between 2.5 - 3 litres of fluid a day (about 50-75% of that electrolytes) and I am never done peeing.  I go to the loo about 18 times a day and am up 3 or 4 times during the night.  The fluid just doesn't seem to stick with me but no-one in the UK will prescribe me IV fluids.  The other reason I couldn't drink that much is that I would have no desire to eat and my appetite is poor enough already.  

Having trouble eating but drinking fluid helps with other symptoms.  Losing weight.  Sick...so tired  

[cmep37]

 

12 hours ago, E pots said:

Having trouble eating but drinking fluid helps with other symptoms.  Losing weight.  Sick...so tired  

I do get where you are coming from - I'm 5 foot 10 and weigh 138 pounds on a good day -- over the last 17 years of POTS I've lost about 30 pounds and I really, really have to work at keeping weight on.  I lost 5 pounds with Covid and only managed to put 3 back on again and even that was a huge struggle.  I vomit about 5 days out of 7 as I retch until I'm sick when my HR rises quickly enough to stimulate my vagus nerve.  As standing for more than 5 minutes or walking more than about 500m makes my HR double you can see the problem!  The only thing the doctors have been able to do for me is give me Zofran/Ondansetron which gives me a couple of extra minutes before I start to gag.  It is so embarrassing when I'm out of the house/with people I don't know well as I can't move very quickly and it is impossible to hide that I'm throwing up....  

Are you on any meds or are you trying to manage solely with increased fluids and compression?  It definitely sounds like you might benefit from trying a BB or fludrocortisone or midodrine.  I've been on all 3 plus ivabradine without success but I know I'm very unlucky and that most people find something that helps control their HR.

[E pots]

I was on fludrocortisone and then I went into the last appointment and my blood pressure was really high 150 over 110 I was on a player he wanted me to go off of the fludrocortisone then they put me a few weeks later on propranolol.  The drawing was so bad I was just laying in bed for weeks on my chest hurts so bad and my heart was irregular and Rapid laying down I couldn't get any relief sitting or laying down no 8 weeks in I am extremely anxious and jittery I just want to get up and move but it makes me worse I'm drinking like crazy all I do is drink and pee.  Before the square I was feeling good no I just wish I could sleep in and not have to drink constantly. Will it go back to normal or am I going to stay like this

[Pistol]

1 hour ago, E pots said:

Will it go back to normal or am I going to stay like this

@E pots - there are so many treatments and drugs you have not tried yet, and most of us need a combination of drugs, rather than just one pill. Don;t be discouraged - now that they found your bP to run high it opens up a whole new avenue of treatment approach! Most of us had to go through a period of years of trying different meds before we found the right combo. Treating POTS is hard, and frustrating to both patient and physician. Just hang in there and keep going back to the doc until you find relief. 

[E pots]

17 minutes ago, Pistol said:

@E pots - there are so many treatments and drugs you have not tried yet, and most of us need a combination of drugs, rather than just one pill. Don;t be discouraged - now that they found your bP to run high it opens up a whole new avenue of treatment approach! Most of us had to go through a period of years of trying different meds before we found the right combo. Treating POTS is hard, and frustrating to both patient and physician. Just hang in there and keep going back to the doc until you find relief. 

I'm a little concerned. I've never seen the neurologist because I couldn't get in to see him for a year. I saw the nurse practitioner. Now I can't get an appointment with a neurologist if I want to keep my appointment with the nurse practitioner. But the nurse practitioner seems to think that I'm fine and I I'm so sick but I think I don't do a good job of explaining to him perhaps I was too hopeful that I would get better and I elaborated on all the things I could do even though I felt like I was dying. When I left last time I felt awful that was 8 weeks ago I feel like I've been blown off

[E pots]

26 minutes ago, Pistol said:

@E pots - there are so many treatments and drugs you have not tried yet, and most of us need a combination of drugs, rather than just one pill. Don;t be discouraged - now that they found your bP to run high it opens up a whole new avenue of treatment approach! Most of us had to go through a period of years of trying different meds before we found the right combo. Treating POTS is hard, and frustrating to both patient and physician. Just hang in there and keep going back to the doc until you find relief. 

I am so wiped out I've got no energy to keep trying. How did I go from functioning sort of okay 2 completely non-functional we're all I can do is go to the bathroom drink take my meds and try to exercise for 5 minutes but I'm so shaky nauseous and unsteady for two months now. You're so afraid this is going to stay like this or will it go back to the way I was most likely?

[Pistol]

4 hours ago, E pots said:

But the nurse practitioner seems to think that I'm fine and I I'm so sick but I think I don't do a good job of explaining to him

Do you have anyone who can go to appointments with you, a friend or family member? It is always best to have someone who can jump in when you don;t remember what to say. Also - before every appointment I make a list of symptoms and questions. I keep a note book and throughout the day if a question comes up I write it down. I have a page for every specialist. When the appointment comes I just tear out the page and take it with me. That is the only way I can remember all the things I need to talk about!

[E pots]

29 minutes ago, Pistol said:

Do you have anyone who can go to appointments with you, a friend or family member? It is always best to have someone who can jump in when you don;t remember what to say. Also - before every appointment I make a list of symptoms and questions. I keep a note book and throughout the day if a question comes up I write it down. I have a page for every specialist. When the appointment comes I just tear out the page and take it with me. That is the only way I can remember all the things I need to talk about!

Identifying to a new nurse practitioner that I've never seen before maybe she will have some for you to say. It scares me though I've never actually seen the neurologist. And if he has at least two nurse practitioners working under him how thorough can he be overseeing their cases? I'm just desperate.. I think I might try to see a electrophysiology cardiologist I don't know if they can help or not

[Pistol]

8 hours ago, E pots said:

It scares me though I've never actually seen the neurologist. And if he has at least two nurse practitioners working under him how thorough can he be overseeing their cases?

@E pots - it is common practice these days to have NP's see patients under the direction of MD's. Nurse Practitioners are allowed to assess, diagnose and prescribe medications. They can refer to the neurologist but otherwise they can work independently. I know many, many NP's that are very capable, and in some cases I prefer the NP over the actual MD 🤫! However - whether you see a MD or a NP, there are always uninformed and ignorant ones. Unfortunately with POTS we more often than not have to contend with health care providers that don't take us serious or don't know how to help us. If you feel a doctor does not listen to you, or does not know anything about dysautonomia, it probably is a good idea to switch. 

8 hours ago, E pots said:

I'm just desperate.. I think I might try to see a electrophysiology cardiologist I don't know if they can help or not

Most EP's have minimal knowledge of POTS, if you are lucky they will diagnose you based on the results of a TTT and then prescribe the ususal - beta blocker, salt. fluids, compression. If that does not help it's all in your head ( easy way to wipe their hands off us! ). Unless you are lucky and find a good one it is usually best to be referred to an autonomic specialist ( see the list of specialists under our physicians tab ). The problem is that it normally takes a long time, up to a year, to get in with a good specialist. 

 

13 hours ago, E pots said:

But the nurse practitioner seems to think that I'm fine

This is where I would simply hand him/her a list of all of your symptoms, along with a listing of what a "normal" day looks like for you. For example: stay in bed all day except for bathroom breaks and making food, which is very limited. The symptoms should be addressed one by one ( demand this ). And If he/she does not address this I would ask to see the neurologist. You are already an established patient, so there should be no reason why you would have to wait all that long for that appointment. But most likely it will get the NP to acknowledge your condition.