POTS = chronic dehydration?

[TorturedSoul]

Hi all. I'm so confused why I suffer so much with autonomic issues. My Mom definitely has some symptoms as I always noticed her feet and legs would be warm after a shower and her heart rate would sometimes feel rapid. However she does not have any symptoms that affects her daily life. Im crippled by whatever this is. I have small fiber neuropathy and autonomic issues that are not yet identified as the doctors here have no idea what to do next. Anyway, my family and I all have a lack of thirst. I don't even remember drinking with dinner as a child. My mom can go all day and only drink a cup of water. Yet she feels fine. I never drank much at all. One water bottle a day maybe for most of my life. I never had the drive to drink. Is is possible my symptoms are worse than ever because it's just my body being sensitive to the lack of hydration. I guess what I'm trying to say is how big a deal is hydration when it comes to dysautonomia. Can it explain symptoms of shortness of breath and chronic lightheadedness. The lightheadedness for me got better after a round of antibiotics that I took for a UTI. I have no idea why that would be but some have said even minor infections can trigger symptoms. Last night after a bath I had a rapid heart rate and shortness of breath that lasted all night. Can something as simple as a bath cause that!? My daughter and son have POTS symptoms and yet no one in my family struggles like we do. I feel hopeless. I wonder if not drinking even close to enough throughout my childhood and adulthood just led to a crash. My kids don't seem to have thirst either. they can go a whole day without asking for a drink. Just crazy 

[RecipeForDisaster]

Wow, you sound like me. My mom and I have similar symptoms (along with my sister and grandmother - all I know is that they are/were never thirsty). I’d pretty much never drink water if it was not for health. We never drank with meals, either.

 

I do drink 4+ liters of salted water daily, and have for years, to try to treat whatever I have - it has not helped. I can drink nothing or all that and feel the same. IV fluids DO help tremendously. I am now being worked up for cardiac sarcoidosis, which is pretty rare but which can cause dysautonomia (I have signs of it on my cardiac MRI). But that is not hereditary. Good luck! Keep us posted.

[TorturedSoul]

@RecipeForDisasterso strange that IV fluids helP tremendously. I guess you're just not retaining what you drink orally. I had a cardiac MRI along with every other test imaginable. All normal, except autonomic testing. It's unreal how can you feel like DEATH and yet nothing shows. I really do feel like I'm trapped inside this messed up body. I wish I could find answers but it's an extremely slow process. 

[toomanyproblems]

I also have almost a complete lack of thirst and have for my entire life. I don't know if that contributed to my POTS but I have EDS and other things that commonly go along with POTS and I don't think chronic dehydration caused those FWIW. 

I really, really struggle to try to stay properly hydrated. It's just exhausting to have to force myself to drink all the time when I have no thirst. When can manage it, I pretty much pee it right off even with salt or florinef and I'm back to where I started. IV fluids only help if it's lactated ringers given over several hours. That can stick with me longer but I rarely see much difference in symptoms and HR. I don't have a port and frequent IVs are not a sustainable solution for me. There is definitely a screw up somewhere in the internal pathways for the control of my fluid balance. I wish someone could figure it out. It may not be every POTS patient's magic bullet but it may be mine if they could figure out what in that pathway is broken.

I do understand that keeping hydrated is very important for me. I might not meet the goals they give us for daily fluid intake but I do the best I can considering how hard it is for me.

[TorturedSoul]

@toomanyproblemsI agree. There has to be an issue with fluid balance. I wish we could figure out the root cause because maybe there is a solution; perhaps a supplement or treatment option. I agree. I literally have to force myself to drink and like you I just pee it all out. So am I even retaining the extra fluid. I was in the hospital during my most severe crashes. Of course they said it was anxiety but I felt like it my blood was not circulating properly at all. I was hyperventilating all the time but it was always preceded by a sudden feeling of weakness. Now of course they were able to see through testing that I have significant autonomic issues. Even still they minimize it because they don't know enough about it. So because nothing obvious is showing up on standard testing (cardiac and pulmonary)  they minimize my symptoms. It's such a lonely road. I appreciate you and all the other members on this forum. 

[MikeO]

What helps me is to drink cold fluids. I am like some of you and don't or can't take oral fluids. The water add ins help getting my 80 oz's in a day but if it was just tap water this would not even happen. Cold milk does go down well. Cold milk mixed into ice cream is even better (word of warning you will gain weight) 

[Pistol]

Dear @TorturedSoul - here is an article about hydration and POTS

 

13 hours ago, TorturedSoul said:

Is is possible my symptoms are worse than ever because it's just my body being sensitive to the lack of hydration. I guess what I'm trying to say is how big a deal is hydration when it comes to dysautonomia.

Hydration is a VERY big deal in dysautonomia, and your hydration level directly affects the ANS. If you are unable to drink the recommended amount of fluids and salt I would bring this up to your physician, since not being adequately hydrated will make your symptoms worse, and can even be a cause for all of it. 

 

13 hours ago, TorturedSoul said:

I guess what I'm trying to say is how big a deal is hydration when it comes to dysautonomia. Can it explain symptoms of shortness of breath and chronic lightheadedness.

Yes, IME it can. Before getting regular IV fluids I fainted all of the time, felt lightheaded and short of breath and many other unpleasant symptoms. I was in the ER every several weeks, even with outpatient IV fluids inbetween visits. Like you, I am unable to tolerate drinking the required amount of fluids, so it was definitely a factor in my case. Getting regular IV fluids has greatly improved my symptoms. 

 

13 hours ago, TorturedSoul said:

Last night after a bath I had a rapid heart rate and shortness of breath that lasted all night. Can something as simple as a bath cause that!?

Yes, it can. Hot baths and showers cause your blood vessels to dilate, will in dysautonomia can trigger an abnormal ANS response, leading to the symptoms you describe. That os why we are to avoid hot water. Some people report that drinking a big glass of water before showering helps them. I only take brief, lukewarm showers and rest immediately after, that way I can avoid the symptoms you describe. 

 

13 hours ago, TorturedSoul said:

My daughter and son have POTS symptoms and yet no one in my family struggles like we do.

I have a genetic form of HPOTS, and it runs in the last 3 generations of my family ( females, anyway ). I am the fourth person in the second generation to have POTS and I have it worse that everyone else. Some women in my family have only mild symptoms, I am disabled by it. Dysautonomia is a highly individual illness, and many factors specific to your body can influence the severity of symptoms. 

[RecipeForDisaster]

11 hours ago, TorturedSoul said:

@RecipeForDisasterso strange that IV fluids helP tremendously. I guess you're just not retaining what you drink orally. I had a cardiac MRI along with every other test imaginable. All normal, except autonomic testing. It's unreal how can you feel like DEATH and yet nothing shows. I really do feel like I'm trapped inside this messed up body. I wish I could find answers but it's an extremely slow process. 

Yes, no one really understands my body, including me - I don’t seem to retain fluids I drink, even if they are saltier than IV fluids. I’ve had so many tests I can’t even list them - including nephrology. Even my autonomic testing isn’t blatantly abnormal, except my cerebral perfusion(3rd TTT - others were inconclusive) - I got a HYCH label but it doesn’t explain everything. I look fine to most people most of the time, but I usually feel like I should be in an ICU. I sincerely wish we could lend others our bodies so they could not only understand how bad we feel, but try to figure out what’s wrong with it.

[RecipeForDisaster]

11 hours ago, toomanyproblems said:

I also have almost a complete lack of thirst and have for my entire life. I don't know if that contributed to my POTS but I have EDS and other things that commonly go along with POTS and I don't think chronic dehydration caused those FWIW. 

I really, really struggle to try to stay properly hydrated. It's just exhausting to have to force myself to drink all the time when I have no thirst. When can manage it, I pretty much pee it right off even with salt or florinef and I'm back to where I started. IV fluids only help if it's lactated ringers given over several hours. That can stick with me longer but I rarely see much difference in symptoms and HR. I don't have a port and frequent IVs are not a sustainable solution for me. There is definitely a screw up somewhere in the internal pathways for the control of my fluid balance. I wish someone could figure it out. It may not be every POTS patient's magic bullet but it may be mine if they could figure out what in that pathway is broken.

I do understand that keeping hydrated is very important for me. I might not meet the goals they give us for daily fluid intake but I do the best I can considering how hard it is for me.

Me too - LR run very slowly (8 hours or more per liter!) is what helps, and I don’t have a port or PICC, nor can I get one… so I am choosy about when I use it. It doesn’t help for more than a couple of days if I get 2L.
 

I still force myself to drink all 4 liters daily, but it doesn’t help and I don’t want the liquid. Florinef only gave me edema and no help in my symptoms. It’s so strange.

[MomtoGiuliana]

You might find this recent talk valuable.  He talks about hydration/dehydration.

 

[Pistol]

On 11/4/2021 at 6:46 AM, RecipeForDisaster said:

I look fine to most people most of the time, but I usually feel like I should be in an ICU. I sincerely wish we could lend others our bodies so they could not only understand how bad we feel, but try to figure out what’s wrong with it.

Oh @RecipeForDisaster - that rings so true! It's why we call it the invisible illness. It is very difficult to explain why I use a wheelchair IF I go into a store ( which can only happen on the best of days ) when I look like a million bucks! The only reason I was taken serious at all in the beginning of my illness was because I had seizures and fainting frequently, otherwise everybody would have labeled me as mentally ill. 

 

On 11/4/2021 at 6:46 AM, RecipeForDisaster said:

Even my autonomic testing isn’t blatantly abnormal

Same here. In the first year of POTS I went to an autonomic center for diagnosis and they said that based on autonomic resting I was completely fine ( despite a previous TTT that showed NCS ). Later I saw my autonomic specialist and was finally diagnosed with HPOTS, based on neurotransmitter levels and symptoms. Dysautonomia is so vague and there are o many open questions that even the experts run out of explanations!

 

On 11/4/2021 at 6:48 AM, RecipeForDisaster said:

Me too - LR run very slowly (8 hours or more per liter!) is what helps

This is the very treatment that saved me. I get the LR ( proven to be more effective for me than NSS ) 2-3 times a week, need to run ot slowly for optimal effect. Only with the IV fluids have I been able to have a life at all and have been seizure and faint free for over a year. 

[RecipeForDisaster]

I haven’t fainted in front of anyone except my husband. Almost, in MD offices, but not quite. I did so yesterday while on a 30 day Holter monitor and freaked everyone out - it was sinus tachycardia, like I knew it was. I got 2 calls from the monitor company and then, hours later, one from the on call cardiologist at the big hospital. Having a "diagnosis" of HYCH doesn’t mean much - no one has heard of it (few test for it during a TTT, which, by the way, would have been normal if not for the cranial Doppler)and there is not much treatment.

Even my positional neurotransmitters are okay. I never thought I had hyper anything, though. Probably low flow/low volume.

[MikeO]

I was diagnosed as being mentally ill by my former PCP that carried over to my current Dr. On the first visit he right off the bat was wanting to put me on antidepressants. Four years later and with the help of the University of Wisconsin he finally understands dysautonomia and even acknowledged i am unique. 

[Miss Donna]

On 11/3/2021 at 7:09 PM, TorturedSoul said:

I wish we could figure out the root cause because maybe there is a solution;

I found this forum today when I was trying to remember if dehydration caused and/or made Dysautonomia symptoms worse. I'm not sure why, but I can never seem to remember that when I feel bad, I need to drink water! I too feel like I belong in a hospital somewhere, and then 16 ounces of water puts me quickly on the mend. Why can't I remember that in the moment?!?

Like so many others, I used to never drink during meals growing up, and I forget to drink now.  

The reason I decided to post was because of the mention of figuring out the root cause.

It's been almost 20 years since a doctor told me I had Autonomic Dysautonomia. By a chain of events that let me know God had His hand in getting me some help, I ended up at a center that specialized in Dysautonomia.

One of the most interesting things was that they sent me a multi-page questionnaire before my first appointment. They asked a lot of questions about various types of traumas and/or abuse I might have experienced - especially during my early childhood.

One might think, "I'm not going for a psych visit!", but I answered all of the questions honestly.

Yes, I experienced both trauma and abuse in my early, formative years. One of the most "interesting" of the questions was whether or not I had ever witnessed violence during those years. Yes, I had.

When I asked about the reason for the questions at the appointment, the doctor told me that many Dysautonomia patients have experienced abuse and trauma in their early lives.  

I found all of that to be "interesting", and a quick search of the Internet shows that the Hypothalamus is what regulates our hunger and thirst....among other things, and it can be adversely affected by "early life stress".

Maybe for some people this is the root cause? Maybe for some of us, our nervous systems were adversely affected by stress in our young lives, and for some of us Dysautonomia finally got bad enough to show itself as a problem in adulthood??

I do know one lady who developed Dysautonomia in adulthood. She had a pretty abusive marriage, and symptoms developed during that time.

Hopefully this might help someone here or someone searching online for this topic. 

I hope so.

[another1withdysautonomia]

I was always dissuaded, conditioned not to 'drink too much', as my first words were 'more water', and I was constantly told, no, you are drinking too much water, you pee too much. By the time I was 30 I was accustomed to drinking 6-10 litres a day depending on sweat, sun, wind, etc. and my doctor seemed sceptical that I was passing 4 litres minimum of urine, usually more than that. The only time my thirst goes away, is also the time I feel most coherent, but unfortunately, by that time, my bladder is busting and I'm peeing every 10 minutes, and my heart rate is up. Personally I think it is low CBF causing my body to load fluid, but that my system dumps it just as fast as I can consume it, and often I get low electrolyte symptoms and headaches and muscle weakness, I think from depleted stores due to excessive urine output. It's nuts living that way and not even knowing it isn't normal! At least I'm diagnosed now, three weeks yesterday. I knew there was something VERY wrong with my cognition. Now I just hope it isn't Parkinson... God bless you all.

[Miss Donna]

1 hour ago, another1withdysautonomia said:

Personally I think it is low CBF causing my body to load fluid,

Would you happen to have disc issues in your neck or some other type of neck issue?

[MaineDoug]

Hi anotherone, 

I’m 3 weeks out from diagnosis myself. Although I had been giving docs “hints” about what was wrong and where, but they couldn’t be bothered to listen! 
 

For me, PO and IV hydration is making all the difference! I was bedridden for 6 months. On a good day now I can be up and around and even do light chores. But I have to hammer down 7 liters a day plus IV’s 3 times a week to keep it going.

 

Regardless good to have a diagnosis and treatment after 14 years searching!

 

Best wishes!

 

Doug

[Water Lover]

The childhood idea is super interesting. I'm recently diagnosed with POTS (late 30s), but suspect I've had POTS since my teenage years at least.

I didn't drink a lot of water in my childhood: we had very strongly mineral-tasting water. I now find it extremely unpleasant to drink; I think I was a little more used to it then, but I still don't think I drank a lot of water. With meals I was given milk, which I did not like. And I'm still struck when I see my parents by how little they drink fluids. So I would guess my fluid intake was not terribly high.

I had a lot of headaches as a kid/teen, with no cause ever identified. Looking back on that as an adult, I've long suspected that I was chronically dehydrated and that that was the reason for the headaches, though since my diagnosis I've wondered if it was POTS, which, as I say, I suspect I've had all along. Maybe in some sense it comes to the same thing.

Interestingly, for most of my adult life, I've habitually drunk a lot of water. For a day when I'm feeling normal, around 100 oz is probably my floor, and sometimes I can go well above 200. (When I'm feeling bad I can have the tendency to drink less water, which is something I've got to watch.) I figure this is one of those unrecognized coping mechanisms. Even drinking that much, I'd be thirsty a lot of the time.

One time, long before the symptoms that led to my diagnosis got bad enough to really pursue them, I mentioned to my doctor that I had to pee all the time. He referred me out to a urologist, who had me keep a volume log and then told me I was drinking too much water. "But I'm thirsty all the time," I told him. "Why is that and what do I do about it?" "Not my department," he told me, and it didn't go any further.

That does bring up another thing about me and water related to what people were saying above--my body seems to process it differently at different times. Sometimes I have to pee constantly, my bladder feels irritated, and it's as though water is running right through me. At other times I have a more normal-feeling schedule despite the volume. My impression is that I'm more likely to have the water run right through me at times when I'm more symptomatic, though I haven't looked at that methodically.

All the talk of IVs in this thread is also making me remember once when I went to the ER with severe stomach pain and vomiting. They didn't find anything, but I noticed that I felt waaaay better from being hooked up to the IV (got about two bags): not just that it helped with the stomach stuff, but I felt rejuvenated and in some ways better than I did in my day-to-day life. I've joked with my spouse for years about wishing I could just go get IVs whenever I wanted them. Only now realizing that's probably a POTS thing too!

[Sarah Tee]

For those that haven’t had any success with volume expanding measures (oral intake, medications, IV saline), I just wanted to mention a “last resort” option to consider, which is IV albumin.

If you search “albumin” on this forum you’ll find various posts, including some recent ones from me. (I’m no expert – others here have much more experience with it, some over many years.)

There’s almost nothing published on it, unfortunately, but my post has links to what is out there.

[Crys]

It’s so weird, I also hardly drink at all. I have always hardly drank water. My mom as well. In fact I notice I have a few maternal cousins who say the same thing. One of them has severe daily migraines. The thing is, although drinking does help me to some extent, it kind of plateaus at some point. So I can relate to what others are saying here about our bodies not even retaining much of the fluid. But I have never tried taking IVs unless it was in the context of me being in the hospital for some unrelated reason, so I can’t tell if it helped my POTS at the time. My problem is that no doctors in the country I live in seem to even want to have a discussion about POTS. It’s just brushed aside. The doctor who diagnosed me as a teen left the country and it looks like that was my only shot lol. 

[Sarah Tee]

@Crys, forgive me for being nosy, but would you mind me asking which country or part of the world you live in?

I live in a small country (population wise), Australia, so I take a bit of an interest in where autonomic specialists are or are not available around the world.

Feel free to ignore the question.

[Crys]

25 minutes ago, Sarah Tee said:

@Crys, forgive me for being nosy, but would you mind me asking which country or part of the world you live in?

I live in a small country (population wise), Australia, so I take a bit of an interest in where autonomic specialists are or are not available around the world.

Feel free to ignore the question.

I live in Lebanon, in the Middle East. Generally we have excellent doctors and a great health care system, but we have a tiny population of like… 4 million people. So there just isn’t much awareness about rarer diseases, particularly chronic ones with unclear treatment options and unknown etiology. 

[Crys]

52 minutes ago, Sarah Tee said:

@Crys, forgive me for being nosy, but would you mind me asking which country or part of the world you live in?

I live in a small country (population wise), Australia, so I take a bit of an interest in where autonomic specialists are or are not available around the world.

Feel free to ignore the question.

To further illustrate what I mean about the ignorance over here, I tried seeing a cardiologist about 6 months ago and as soon as I walked into his clinic and said my POTS was worsening, perhaps due to breastfeeding, he said “you have anxiety. I can’t help you.” He sent me away. I paid for a full consultation just to hear that one ridiculous sentence lol. 

[Sarah Tee]

@Crys, sorry you had a bad experience with the cardiologist. I don’t know whether it is any comfort, but there are cardiologists in bigger countries making the same uninformed remarks every day.

I hope something changes soon. I had an amazing piece of luck in that a new autonomic specialist starting practising in the capital city near me and also started visiting a small country town near me. He has been studying for a while, obviously, but he is new to having his own practice. So you never know, someone could pop up.

I managed to find mention of an autonomic specialist who did his early medical training in Lebanon, Dr Kamal Chemali. He’s now in the US, but maybe you could write to his office and ask him on the off chance he knows someone in Lebanon who might be helpful.

https://www.dysautonomiainternational.org/page.php?ID=22

(Fourth entry down)

[Pistol]

@Sarah Tee I am happy to hear that you might soon get a specialist near you! And I hope he will be able to help you. 

Also - thank you for your always helpful Input to our forum! 🥰