Sodium for Hyper POTS?

[Sarasw]

I thought that sodium wasn't good for hyperadrenergic POTS but I feel better if I have miso soup or add a bit of salt to water. Doctors have told me not to add extra salt but I think they tell everyone that to avoid hypertension. I am working on trying to get more potassium in food, it seems like I am not eating enough even though I eat fruit and vegetables. Do those of you with hyper POTS eat extra salt? Someone here with hyper POTS has improved with IV fluids so maybe salt does help. (Water currently goes right through me and I have low renin.) My POTS is worse in this hot weather.

[Pistol]

@Sarasw - yes, I have hyperadrenergic POTS and was told to increase both fluids and salt. Since  hyperPOTS often causes hypertension they recommend to check your BP to see if the salt increases it. In my case I have both hyper- and hypotension, so I really cannot go by that. But I have craved salt all of my life, even as a child, which is quite common in POTS. My local cardiologist encourages me to use salt freely despite my at times high BP - I would pass out without it!!! -- BTW - I am the one that improved with IV fluids that you mention in your post and it is important to increase both salt and fluid together. Also - electrolyte rich drinks such as sports drinks help me much more than just salt and water. However - my PCP checks my electrolytes regularly since I am on IV fluids - to make sure that everything stays within normal limits. So - if you use sports drinks you may want to ask your PCP to check your e'lytes at times. 

7 hours ago, Sarasw said:

(Water currently goes right through me and I have low renin.) My POTS is worse in this hot weather.

I too experience polyuria ( frequent urination ) when I drink water. Normal Saline infusions used to do the same. LR infusions are rich in many electrolytes and help the fluid to stay within the blood vessels, therefore interrupting the faulty mechanism that leads to norepinephrine dumping and vasoconstriction. in my experience sports drinks were better for me. See - In our bodies water goes wherever sodium goes - if you pee a lot you loose a lot of salt.Here is an article that explains it: 

 https://www.merckmanuals.com/professional/endocrine-and-metabolic-disorders/fluid-metabolism/water-and-sodium-balance

However - if your BP is high consistently then you may have to avoid JUST salt since it CAN increase your BP. 

[p8d]

I have hyper POTS too. I was diagnosed with high catecholamines on one of my first appointments with my neurologist. When my BP was lower than it is now I did increase salt.  In my case my BP drops when I stand then starts to climb for several minutes then slowly drops again for several minutes then climbs again.  It’s always done the immediate drop and when I was first diagnosed 4 years ago it started out lower and stayed lower so the drops were more significant 80-90/60s.  I used a lot of salt capsules then.  Now my BP is low in the morning and then steadily rises as the day goes on but I still get that immediate drop on standing.  I take 1 vitassium capsule with about 8 ounces of water before I get out of bed and wait 5-10 minutes then get up.  I don’t take any extra salt throughout the day unless it’s hot and humid and I am blood pooling badly.  Then I also add extra fluid.  I have an extreme gastropressor response to fluids and can actually control my BP with fluid intake.  For hypertension/sympathetic overload  I take coreg (BB) and  guanfacine ER(alpha blocker) thanks to @Pistol.  It’s a combination that works well for me.   

[Lily]

I have high plasma NE on standing and I'm on a high salt diet, too.  I think the important point is why your NE is high.  Is it high because your body is trying to compensate for low blood volume or excess veinous pooling?  That is a different situation from primary hyperPOTS, where your body just makes lots of NE for no reason.

[Scout]

I have HyperPOTS but have found salt doesn't make my BP go up anymore than it would normally go up due to the autonomic dysfunction, if that makes sense? 

Mostly, salt helps keep my BP a bit more stable and less erratic. 

My specialist did say to obviously keep an eye on BP readings, but did stress that salt and fluids were very important.  My BP is usually on the low side of normal, or a bit low, but still I have spikes. At the end of the day, the spikes seem to have nothing to do with salt intake. I can have a high salt intake and my BP is still often low. 

[bombsh3ll]

I used to salt load, but have switched to drinking 2 litres of oral rehydration solution per day. It is less unpleasant (actually quite nice with a bit of flavour added) and doesn't contain the level of salt I was consuming before. My BP goes up on standing but blood noradrenaline levels were normal. I never noticed any benefit from salt but maybe ever so slightly from the ORS, which is designed for that purpose.

I also have low renin & aldosterone - mine were undetectable - but taking a lot of salt suppresses these further. Additionally, despite it being a common recommendation, there is no evidence that salt loading produces lasting increases in blood volume - it is just peed out. It says in analysis of one of Dr Levine's papers that whilst they can't exclude some of the benefit in his study participants being due to salt loading, POTS patients are often advised to do this but in practice it seldom translates to any clinical benefit. 

Generally, if your BP is not high in any position, if salt helps you then it should be OK, as long as your BP is checked regularly. There is some evidence that salt ingestion raises BP via vasoconstriction/sympathetic activity rather than volume expansion. 

B xxx

[haugr]

Salt with hyperpots is tricky.  You pretty much have to salt supplement if your symptoms are due to hypovolemia, but if you take too much though it will cause your bp to go higher, from what I understand.  In your case, I would guess the frequent urination is a pretty goid sign that you are likely hypovolemic.

[bombsh3ll]

6 hours ago, haugr said:

You pretty much have to salt supplement if your symptoms are due to hypovolemia,

How do you get around the RAAS suppression caused by high salt ingestion, when this system is likely already not working properly to begin with? 

B xxx

[haugr]

5 hours ago, bombsh3ll said:

How do you get around the RAAS suppression caused by high salt ingestion, when this system is likely already not working properly to begin with? 

B xxx

 

What causes this particular form of hyper pots (or Low Flow POTS as Julien Stewart calls it), is that there is too much Angiotensin II in the blood stream because the ACE2 is broken and fails to catabolize the Angiotensin II properly into the lesser forms of Angiotensin known as Angiotensin 1-7.  The kidneys then have a feedback loop that suppresses the release Renin when Angiotensin II levels are high.

So... why does salt help?   Well, the main goal is to get your Angiotensin II levels down to a tolerable level.  Salt and extra fluids raises your blood volume which leads to a state where your RAAS doesn't even really need to activate which allows your Angiotensin II levels to finally decrease as it gets slowly gets converted to Aldosterone which actually ends up lowering your blood pressure.  The raised blood volume also gets the other POTS symptoms under control.  Julien Stewart also recommends Losartan as a way to suppress the effects of the high Angiotensin II levels.

[WinterSown]

My cardiologist has me loading up on electrolytes from the foods I eat and drink. It's not just about only sodium. You need them all. I saw my neuro last month and we talked about the weather. Summer heat and humidity increases our symptoms--it just magnifies and cranks up the symptoms. Staying inside with the curtains drawn under a ceiling fan with the AC blasting while I'm drinking a watermelon smoothie and eating a bag of popcorn is how I'm spending most of my summer. Yippee. Pleh.

[haugr]

That actually sounds like the perfect summer to me

[bombsh3ll]

1 hour ago, haugr said:

Low Flow POTS as Julien Stewart calls it), is that there is too much Angiotensin II in the blood

I am interested in that theory because I have undetectable renin and aldosterone, but have never been able to get AngII measured. I did try losartan though (when my BP was high enough to tolerate it as I was on licorice root) and unfortunately it didn't help me. 

I have never benefited from salt loading, although the licorice root did help for a while.

Technically I am not hyperadrenergic as my catecholamines are in normal range for both supine and standing, although my BP goes up, not down when I stand, & I am very vasoconstricted like the low flow types.

 

B xxx

[toomanyproblems]

4 hours ago, haugr said:

 

What causes this particular form of hyper pots (or Low Flow POTS as Julien Stewart calls it), is that there is too much Angiotensin II in the blood stream because the ACE2 is broken and fails to catabolize the Angiotensin II properly into the lesser forms of Angiotensin known as Angiotensin 1-7.  The kidneys then have a feedback loop that suppresses the release Renin when Angiotensin II levels are high.

So... why does salt help?   Well, the main goal is to get your Angiotensin II levels down to a tolerable level.  Salt and extra fluids raises your blood volume which leads to a state where your RAAS doesn't even really need to activate which allows your Angiotensin II levels to finally decrease as it gets slowly gets converted to Aldosterone which actually ends up lowering your blood pressure.  The raised blood volume also gets the other POTS symptoms under control.  Julien Stewart also recommends Losartan as a way to suppress the effects of the high Angiotensin II levels.

Some excellent stuff here. Thank you! I'm going to print these charts out and study them. I have hyper pots (by blood pressure criteria- NE not measured) and also primary Addison's. I am currently just a mess in the heat -- trying to pass out every day lately whenever I go outside. I don't have a POTS Dr and have so many problems nobody really knows what to do with me anymore. I'm a biochemist with a medical background so I can try to figure things out on my own but I get overwhelmed trying to research all my problems. I feel like my only hope is this forum where people are really on a mission to break this stuff down and figure it out.

The consistent question I keep asking myself is why can't we maintain proper plasma volume on our own? What is the main thing broken causing this in hyperPOTS of this variety? Some of us get IVs, and while it helps, sometimes tremendously, it's only temporary. My HCT was 50% a few weeks ago. I've had a frank relative polycythemia, or during good times a borderline one, for at least 12 years. There is no combination of my meds, fluids, salt gatorade, etc., that makes me stable for long. I wish I knew what was broken. 

Sorry for the rambling but I just feel so frustrated right now.

Edited to add: I realize you did just write the ACE2 is broken but why? Are there antibodies against it?   

[haugr]

I think that mine is genetic.  I have 4 biological siblings and 2 of them, while not officially diagnosed, are convinced that they also have it.  My sister had been dealing with what she thought were panic attacks her entire life until she did the poor mans tilt table after I was diagnoses and she turned out to meet the criteria.  Since then she has been pounding the sports drinks which has helped her immensely.  My brother has really high blood pressure and low testosterone that he was diagnosed with in his late 20s.  He also is on a high salt diet and lisonopril (which reduces Angiotensin II).  I have another cousin in her early 20s that was passing out from time to time until she was put on a high salt diet.  I should probably submit myself and my family to a genetic researcher

[bombsh3ll]

14 hours ago, toomanyproblems said:

I've had a frank relative polycythemia, or during good times a borderline one, for at least 12 years. There is no combination of my meds, fluids, salt gatorade, etc., that makes me stable for long. I wish I knew what was broken. 

I think natriuretic peptides and urodilatin need to be studied in the context of chronic hypovolaemia. Natriuretic peptides oppose aldosterone and urodilatin increases flow to the kidneys.

There is a lot of research in this area in terms of heart disease and hypertension, where natriuresis is seen as beneficial, but I think we have excessive levels of these. I watched a presentation by someone who treats paediatric POTS, forget the name now but he talked about urodilatin being elevated, hence high renal blood flow and eGFR rates >90, which mine is. 

B xxx

[PJPW]

Curious if anyone can suggest things to help. DD was dxed with high epinephrine but not norepinephrine. So her Dr said she does not have hyperpots. What we do know is her blood pressure and heart rate are high an upon standing...goes higher. Current med is propanalol. She was tried on the clonidine patch at the lowest dose possible and she was dizzy upon standing and by day 4 so fatigued that she said her vision was blurry. Dr said to remove the patch and restart the propanalol. A few years ago she was started on florinef and did not do well at all. Blood pressure went up and she would go into a secondary seizure for around 20 minutes.

 

Just hoping someone has input

[haugr]

On 7/13/2019 at 9:31 AM, PJPW said:

Curious if anyone can suggest things to help. DD was dxed with high epinephrine but not norepinephrine. So her Dr said she does not have hyperpots. What we do know is her blood pressure and heart rate are high an upon standing...goes higher. Current med is propanalol. She was tried on the clonidine patch at the lowest dose possible and she was dizzy upon standing and by day 4 so fatigued that she said her vision was blurry. Dr said to remove the patch and restart the propanalol. A few years ago she was started on florinef and did not do well at all. Blood pressure went up and she would go into a secondary seizure for around 20 minutes.

 

Just hoping someone has input

It makes sense to me that clonidine would have those negative effects since clonidine primarily suppresses norepinephrine instead of epinephrine.  An alpha-beta blocker would probably help get the blood pressure down.  Might want to also get tested for a pheochromocytoma if it hasn't already been done.

[bombsh3ll]

Pheo test is a good suggestion. Was she already on the propranolol when the test was done? That can affect results.

I also didn't do well on florinef although on paper it looks like a perfect fit as I produce virtually no aldosterone.

B xxx

[haugr]

I found that paper about high angiotensin II levels in some potsies and its effects on renin: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4511483

 

A subset of POTS patients with increased vasoconstriction related to decreased bioavailable NO (nitric oxide) have decreased blood volume

Ang II reduces bioavailable Nitric Oxide

Ang II can increase the release of noradrenaline (norepinephrine) from ganglionic and postganglionic sympathetic nerves

Ang II promotes oxidative stress by causing the formation of superoxide radical through its effects on NADPH oxidase.  The interaction with superoxide reduces the bioavailable Nitric Oxide

Ang II is part of a control loop with feedback inhibition of renin production. Thus increased exogenous or endogenous plasma concentrations of Ang II suppress the release and expression of renin

[Pistol]

Thank you, @haugr, very interesting!!

[bombsh3ll]

I'm convinced I am low flow. Wish I could get my blood volume & Ang II measured!

B xxx

[haugr]

No kidding.  I wish these tests were commonly available.

[DizzyPopcorn]

On 8/9/2019 at 2:27 PM, haugr said:

No kidding.  I wish these tests were commonly available.

They arent? Surely its not a complicated process

[toomanyproblems]

There never has been a good test for measuring plasma volume.

[Jwarrior77]

On 8/6/2019 at 12:27 AM, haugr said:

I found that paper about high angiotensin II levels in some potsies and its effects on renin: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4511483

 

A subset of POTS patients with increased vasoconstriction related to decreased bioavailable NO (nitric oxide) have decreased blood volume

Ang II reduces bioavailable Nitric Oxide

Ang II can increase the release of noradrenaline (norepinephrine) from ganglionic and postganglionic sympathetic nerves

Ang II promotes oxidative stress by causing the formation of superoxide radical through its effects on NADPH oxidase.  The interaction with superoxide reduces the bioavailable Nitric Oxide

Ang II is part of a control loop with feedback inhibition of renin production. Thus increased exogenous or endogenous plasma concentrations of Ang II suppress the release and expression of renin

Would taking a supplement such as l-arginine which boosts nitric oxide help with this situation or would it just mess everything up and make it worse?