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joiedevivre

Why is drinking water and eating salt not the same as getting IV saline?

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I, like many, drink lots of water and salt, and yet it helps nothing at all, and I hope of trying IV saline. I mentioned it to my definitely temporary cardiologist and he basically thought it was a funny and ridiculous suggestion and told me that's for people who have diarrhea or nausea and are admitted to er for diarrhea or nausea. 

So I'm wondering if there's an argument other than that many POTS patients are helped by it and that's a fact? I read that some people with POTS have digestive issues which prevent drinking huge amounts of water. Is IV saline only for those people? 

I not only get NO help from drinking 3 liters and over 5 gr of salt a day versus drinking a normal amount, but doctors seem not to care that it takes SO much energy to drink water. Many days I feel exhausted from drinking half a 12 oz cup of water let alone the energy over the whole day. I also pee at least every half hour when I drink this much and since there is a limited amount I can stand in a day it's exhausting to pee. 

I don't have money to try a hydration bar to argue from experience. This illness has already cost me over a hundred thousand dollars if debt and continuous added debt for every day I'm still alive. I also have never been given IV saline in an emergency room, but I'm confused how others have? I thought if your not vomiting or have days of diarrhea then they just look at your pee to determine if you're dehydrated and my pee is always clear ( at least this is what they did to the guy in the bed near me, they just looked at the color of his pee). 

So I'm wondering what my argument for my regular doc ( who seems to be treating my pots anyway) as to why trying IV saline would be worth trying if he says it's no different than drinking water? I'm confused about this myself? And I only want to try it once . I'm not asking for a port or anything.  Just knowing there IS something out there that helps me would make this h*** easier to bare, rather just a bunch of hypotheticals which might help me.  Thanks! 

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Hi there! I have been on IV therapy weekly for about 3 months and it helps a lot!! It is different in that every bit of fluid ends up in your circulatory system and creates more pressure in your veins, thus raising pressure better than simply drinking fluid. When you drink water not all of it goes directly into your circulatory system. That’s why it doesn’t make you feel as well as the IV does. 

Try mentioning that IV therapy is one of the most benign treatments available for POTS. It’s just saline afterall. If it makes you feel a lot better and is safe, why wouldn’t a doctor prescribe it? 

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Ok, that makes sense if you don't just pee it out immediately ( as I seem to with water). But what if you have Ehlers Danlos? Wouldn't the veins in your lower body just stretch more to accommodate the extra fluid and none reach your upper body? I'm very worried about stretching my veins. 

Also, I agree that it seems unlikely that trying it once or twice would cause any harm but I hear most people's doctor's won't even consider it? I know there are risks with a port or frequent transfusion but I'm only hoping for one or two chances just to see! I really hope my doctor will at least consider it. I hear so many people say it helps. Are you prescribed by a "pots doc" or a regular cardiologist?

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@joiedevivre - I have hyperadrenergic POTS and NCS. My BP goes both up AND down. Over the last 8 years I have been admitted for IV fluids to stop a bad flare with severe orthostatic intolerance several times a year. Sometimes the ER would only give me one bag bolus but that only would help for a short time and then the symptoms came back. But when my PCP would admit me for 24 hours IV fluid the flare would always stop completely and I was good as new. Some docs would refuse IV fluids b/c "I am able to drink fluids". These docs completely miss the point: some people have hypovolemia and the IV fluids help for that and stop POTS symptoms, but in my case it is that the fluids help counteract the ANS to constrict all of my blood vessels which interrupts the bodies faulty mechanism. Noe I have a port and get weekly infusions at home and feel great!!!! --- There is an excellent article about POTS and IV fluids on thedysautonomiaproject website, you can print it out and give it to your cardiologist. ( I have a wonderful PCP and cardiologist and they have learned along with me from the articles I provided. ) Next time you get bad bring that article and demand fluids and see how it goes - most likely it will help you too!!!!

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I had a very hard time getting to try this and to keep getting it prescribed. Doctors often say "if you can drink, you don't need IV fluids". By hearing from all of us who have gotten good results from IVs, it's not true in every case. I think it's the fact that you are forcing all of the fluid right into your vessels, because if you aren't dehydrated, why would your GI tract hold onto much more water that you drink? Plus, yes, the pressure being forced up. 

 

I don't think i have EDS so I can't speak to that. Good luck, I know exacly how you feel wanting to try this and having so much trouble getting it arranged.

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Could someone help how much you should get a week for iv fluid?

I try to find an info but still isnt clear.

Such as how many bag/litre per week? How often/how many days per week?

If you have to do it for long i think its hard if you have to keep going to hospital and getting infusion almost everyday for hours. Wouldnt that caused trouble to the veins?

Otherwise you require to buy the device at home?

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So IV fluids are primarily for increasing BP and blood volume?

I'd be curious what IV fluids does when my BP is high? I find drinking water/salt/electrolytes immediately drop my BP when it is extremely high. Last time in ER,  I rejected an IV because my BP and HR and sodium were high. Bad decision?

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@voxel - it is different for everyone. In my case IV fluids correct both hypo AND hypertension. But I have hyperPOTS - it will not work like that in other types of POTS. It all depends on what the mechanism of your dysautonomia is ( vasoconstriction vs vasodilation vs neurotransmitters vs SFN vs low blood volume … )

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Yep, in my case I seem to be low blood volume and I only have very low BP, never high. 

 

My orders are for 1000mL up to 3 times weekly. I have it done at home and do try to do it as infrequently as possible to save my veins. I don't have any permanent access.  

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if you are peeing out so much your salt to water ratio might not be correct.  Drinking water and salt isn’t the same as an IV but if you experiment a bit you might be able to find a combo that keeps you hydrated. 

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Here is a curious observation I made: when my POTS symptoms are bad I always urinate excessively. When I get IV fluids this stops and I urinate a lot less, more like a normal person. So: does the increased urination cause the POTS to worsen or does the POTS cause the increased urination? … Also: in "normal" people IV fluids would cause increased urination - why is it opposite in POTS patients? 

I just found an article about polyuria ( excessive urination ) that lists POTS as a primary reason for polyuria!!!!

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I've found the same exact thing-I can drink perfectly isotonic solution and pee just about all of it out quickly. When I get it IV, I hardly urinate at all. It's so weird. The kidney should see "extra" fluid the same way whether oral or IV... but it doesn't seem to with us!

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I am not sure why it is different, but it definitely is!!  The fact is that the etiology of this disease/syndrome is not understood.   Once researchers make inroads into the root cause of the disease, maybe we will understand it further.  The salt/fluid didn't really help me, but IVs have been a game changer.  It is cruel and wrong for the cardiologist to laugh or ridicule you for asking about this.  Very unprofessional.  I would find another cardiologist.  Mine recommended IVs to me and was very compassionate.  

This is a video that recently came out of The Open Medicine Institute for ME/CFS, but he also addresses POTS, which is very common with ME/CFS.  One of the top treatments he talks about is saline IVs.  Maybe your cardiologist should educate himself and watch this.  :)

 

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On 10/22/2018 at 6:15 AM, Pistol said:

Here is a curious observation I made: when my POTS symptoms are bad I always urinate excessively. When I get IV fluids this stops and I urinate a lot less, more like a normal person. So: does the increased urination cause the POTS to worsen or does the POTS cause the increased urination? … Also: in "normal" people IV fluids would cause increased urination - why is it opposite in POTS patients? 

I just found an article about polyuria ( excessive urination ) that lists POTS as a primary reason for polyuria!!!!

I think the POTS flare up causes urination. Your body is in fight or flight mode. A normal reaction in that state is to have to go to the bathroom.

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On 10/23/2018 at 11:32 PM, yogini said:

I think the POTS flare up causes urination. Your body is in fight or flight mode. A normal reaction in that state is to have to go to the bathroom.

Exactly - this is consistent with what happens in phaeochromocytoma (another condition of excess catecholamines) - reduced blood volume and often polyuria. 

B x

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I literally just talked to my neuro about this today. She agrees it’s different, and she says it’s bexause it’s directly administered into the vein so there’s better retention. I was going 5,000+ mg sodium a day and it did nothing but make me thirsty and poofy. 

 

You might have to find a more competent doc and/or find some literature online, print and take it to them. 

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On 10/22/2018 at 11:15 AM, Pistol said:

Here is a curious observation I made: when my POTS symptoms are bad I always urinate excessively. When I get IV fluids this stops and I urinate a lot less, more like a normal person. So: does the increased urination cause the POTS to worsen or does the POTS cause the increased urination? … Also: in "normal" people IV fluids would cause increased urination - why is it opposite in POTS patients? 

I just found an article about polyuria ( excessive urination ) that lists POTS as a primary reason for polyuria!!!!

I get this excessive urination too when my pots symptom is worse, weird huh.

 

Anyways, sometimes the longer im upright ill get more light headed and more and swing both ways lower and higher bps. Do you ever get it when you lay down you are still lightheaded? I am thinking its due to over constriction of the blood vessels in the brain etc?

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@andybonse - to answer your last post: yes, I do get lightheaded while lying down or sitting. I actually have passed out many times while sitting (if I was over-stimulated). This has stopped since I am able to restrict my movement to my tolerance. 

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