Has Salt Increase Brought Anyone Relief

[Lemons2lemonade]

It did not help me. Just wondering if it helped anyone else.

[Dizzysillyak]

Too little salt makes my bp run low but I only use the rda of 2500 - 3000 to keep it up. More than that

and I feel pickled. Lol. I suspect they'll stop recommending extreme salt loading someday. It's not

good for our bodies. I feel better when my bp is higher but it doesn't fix my oi. Tc ... D

[Kellysavedbygrace]

Salt is a huge help to me and I aim for 5-7 grams a day.

I make sole water (highly saturated pink hymylayn salt water) and start my day w 2 tablespoons of that in water. Throughout the day I highly salt my food and during episodes or times when I feel lightheadedness while out I will put a pinch or two of salt under my tongue and then drink a glass of water. Like Dizzy when I don't get enough salt my BP tends to drop more easily into the lower ranges. (80/50)

Vanderbilt is currently doing a study about high salt diets in POTS. A friend I made while there was on the low salt visit and she was not doing as well as the time when she was on a high salt diet. Afterwards, when emailing from home, she mentioned how much better she felt on her normal high salt diet.

My guess is that how we respond to salt is one of the more heterogeneous features of POTS.

[MomtoGiuliana]

Yes it definitely helps me, but if I am feeling very poorly it is only a slight relief typically. I need to combine salt with plently of fluids, furthermore. I have found that coconut water really helps, even more than salt and water, when I am having a flare up.

[lfreem02]

Additional salt didn’t help me. Neither did Fludrocortisone, Midodrine, abdominal binders, or compression stockings. This seems to be the standard treatment for Dysautonomia, or orthostatic intolerance. I think this is why one of the general practitioners I saw early on thought I was a hypochondrhyperac since none of it helped. I found out in October that my body produces too much adrenaline, so my heart rate and blood pressure increase. After 10 minutes on the treadmill my heart rate was 190, and my blood pressure was 200/100. So, the last thing I need to do is increase my blood pressure. If the above treatment doesn’t work, people shouldn’t give up or just keep doing it because that is what the doctors and websites tell them to do. It is important to push to determine why. That is how I found out I was taking the wrong medications, and increased salt was bad for me. I do drink 2-3 liters of fluids a day.

[HyperPOTS8]

Many people with POTS have hypovolemia and should respond to salt and fluids +/- florinef, but some have normal blood volume in which case these therapies don't help.

[roxie]

Salt is important for me but I need more help than just salt. My SIL has vasovagal syndrome and starting salting and quikcly found it helps her a lot.

[Gerrik1]

I was recently hospitalised on the cardiac unit in the hospital and was automaticly put on a cardiac diet AKA - No Salt. Boy could I tell the difference. I got a hold of my MD right away and got her to add salt and gatore aid to my meals and it made a difference.

[Guest Alex]

Not only the extra salt didn't help me, it actually made me worse. Combined with too much florinef (0.2 mg a day) I had the most horrible spikes in blood pressure. After several ER visits and a 3 day hospital stay I decided -on my own - to drop the salt, then to gradually wean off the florinef and 'magic' happened - my BP normalized, my 24/7 headaches are a thing of the past, and several other symptoms I had also self-resolved. Now I do have low-ish blood pressure, but that's normal for me.

Given that I was told that I have hypovolemic POTS (which I doubt) salt, fluid and florinef should have been the right combo for me- my body didn't agree though.

The moral of the story - listen to your body!

Alex

[khaarina]

It didn't help me either. The only thing that has improved my symptoms is sleep (not easy to come by), avoiding triggers (heat, stress, standing, etc.), and Midodrine. Honestly, I think salt loading actually made me feel worse.

[Leigh8]

Didn't help me. I had 6+ grams a day for over a month (along with my .2 mg florinef) and had no improvement.

[looneymom]

Salt has helped my son but he is also on midodrine and fludrocortisone. He drinkes 2-3 liters of water plus gatoraide. His blood pressure will not stay up unless he does this everyday. He takes 8 grams of salt tablets per day.

[bebe127]

Didn't help me. I was told that my bp went up during TTT and that the dr. wouldn't put me on florinef (he said that was the only medication to treat POTS) because it would cause me to have hypertension, which I had had in the past. My hypertension in the past had been boarderline high not high-high. Although the dx dr. did tell me to increase my salt and water, but didn't tell me by how much. So...I have a tendancy for boarderline hypertension and his suggestion is that I increase my salt??? Of course, this being all new to me at the time, I did as dr. said and then had to deal with higher bps and was put on Norvasc by a different dr. Then, bp went all haywire and was finally put on a BB and Xanax. In all honesty, I really think the Xanax is the only thing that helps me and keeps me somewhat sane. Go figure. I'm with Alex--listen to your body!!

[Kellysavedbygrace]

It is a common misconception that salt and fluid loading is helpful because of hypovolemia. But, in fact that may or may not be the case.

I used to think that is why I needed the extra salt and fluids but have been tested at two major autonomic testing centers and discovered I had normal total volume. As a result this was something I recently discussed at length with one of the docs at Vanderbilt. Clearly salt helps me, and saline IVs are my source of bailout and prevention - so the big question is, "Why?". Only about 1/3rd of us are found to be hypovolemic but more than half of us do well on a high salt diet. Vandy is actually conducting a study about this now.

I know salt helps with my BP as I tend to be hypotensive but then why does it help some who are also hypertensive? A few weeks back Rich posted a link to a research review out of BU about salt improving BP because of increased adrenaline not increased blood volume. It has also been suggested that sodium is not processed properly in the kidneys. All this to say, we don't really know why it

helps or doesn't help.

[Guest Alex]

Kelly,

I remember reading the article Rich posted on salt and increasing adrenaline, and that's when things started making sense to me, as every time I salt loaded I ended up with a reaction similar to an adrenaline rush/panic attack.

Yet my specialist continues to think I'm hypovolemic (with minimal, circumstantial proof - one low 24h urine sodium test while in the hospital on a restrictive salt diet, HA!).

I've ocasionaly had saline IV (2 maybe 3 times since my symptoms started 18 months ago) but have seen no major changes in my symptoms -I had tachycardia at rest whenever I was given saline, and I saw minimal improvement in my HR.

My hope is that drs will start studying this more, or more in depth instead of offering the salt+water loading 'prescription' to all POTS patients as a one size fits all treatment. (like I said, I was told I am hypovolemic and I have to eat 10 g of salt and drink 1 gallon of water a day in order to increase my blood volume, as this is the 'standard' low flow POTS treatment).

The other thing that doesn't make sense to me is this whole sodium retention by the kidneys story - if we don't retain salt properly and instead we lose it through our kidneys, why is it that my dr (and he's not the only one) insists that I need to have a HIGH level of sodium (ie a min of 170 mmol/L) in a 24 h urine catch? To me this is a bit upside down - a high level of sodium in urine means that I'm eliminating a lot of it, not that I'm retaining it, so I'm a bit confused...can someone explain this to me - my dr couldn't .

Alex

[seattle chris]

I am on a salt loading diet and currently take 9 grams of sodium chloride tabs and am on .1mg florinef. I haven't had any relief of symptoms, but I honestly don't know if I would be worse without all the salt. Additionally, I have not yet been tested to see whether my blood volume is normal.

[Katybug]

I crave salt like crazy when I haven't had enough and also when I'm really symptomatic (like today) . It must be doing something for me if my body is craving it. I also crave other weird things like Brussels sprouts and garlic when I'm symptomatic ...I think maybe my body is craving the sulphur in these veggies since they are both high sulphur. Bananas are a trigger for my mcas, but when I need potassium, I crave them and if I eat one at that time, my body doesn't react. I don't necessarily feel a direct relief of symptoms when I consume any of these things including the salt but I usually feel better the next day when I load up on whatever I'm craving.

[ramakentesh]

Salt loading did absolutely nothing for me when ingested despite having low blood volume. But as soon as I add licorice or florinef to the mix I feel MUCH better.

Remember that there are most likely biochemical reasons that blood volume may be low in some POTS patients - abnormal aldosterone activitiy which may stop the POTS body from retaining sodium or volume without augmentation.

lastly saline and florinef can help even patients without low blood volume because increased volume can augment sympathetic vasoconstriction.

[ramakentesh]

Weirdest thing is for me that despite the low blood volume i NEVER craved salt until i started Florinef.

[Kellysavedbygrace]

Alex, I agree you should question the hypovolemia assessment without a Total Blood volume test. And I'd add to the list of salt questions- Since nerve conduction hinges on the sodium potassium pump located in the cell walls of our nerves, why aren't we also increasing potassium? Maybe someone on here knows this answer.

Rama, You probably already know this but the catalyst for Florinef's volume expanding power is sodium. Without sodium Florinef will not be activated in the system so your craving makes sense.

[Batik]

I'm deliberately drinking more salty water at the moment, and I can't really tell if it's helping. On the other hand, I once tried stopping all salt for a few days in order to flare up my symptoms nicely for a 24 hour ECG (Holter monitor), and felt awful without salt. I'm also one of those people who will keep adding salt as I eat if I'm tired enough that the effort of eating is exhausting me. I've seen people sit and stare at me in horror as I merrily keep salting the food! So I'm guessing that yes, I do need it, but it doesn't seem to cause a magic recovery. I'm not on any POTS meds yet, however, as I'm still going through the delightfully long process of diagnosis.