How much salt for OI/POTS

[Sasha]

I've just been diagnosed at my doctor's surgery with OI - not quite sure which sort (and nor is he) but after 30 mins standing I had a 36 bpm rise in heart rate, a drop in DBP of 20mmHg and a drop of SBP of 28mmHg (can't remember what he said about pulse pressure change but I don't think it fit the criteria). I think that's POTS? Or is it NMH? Or both?

Anyway, he agreed that we ought to increase my salt &/or water intake, but then he asked me how! I don't know! NHS! :worried: I'm already having about 2.5L of water and 4g salt a day as part of my normal diet.

Can anyone refer me to a detailed protocol from a credible source (preferably a specialist) about how to increase salt/water intake for OI? How much, how fast to build up, when to stop, whether potassium might also be necessary, are blood volume tests necessary to tell when you've got a better volume, etc.? I've seen figures as high as 12g/day which seems a heck of a lot.

 

[Carrigon]

Make sure you watch my videos on this, I give alot of tips for making it better. http://www.youtube.com/user/Carrigon
If you use real salt, such as, the one from the Salt and Grain Society, or pure evaporated seawater, you really only need about a quarter teaspoon a day. You do not have to drink massive amounts of water. In fact, water is a diuretic, you don't want to lose water, you want to get your pressure up. Drink as much as you feel you need to, but don't go overboard on it.

 

[Dr. Yes]

Hi Sasha,

What you described is most likely both POTS and NMH, though sorting out dysautonomia is never easy; various conditions may be at play, and the reality is blurrier than the terminology.

As for protocols, I've been looking into this stuff myself (having been diagnosed with NMH among other things). So far, the most thorough salt and water protocol I've found online from a CFS specialist is this one from Cheney in 2002.. I don't know if he has changed his approach to NMH treatment since then (he certainly has changed his mind on other stuff!):

http://www.prohealth.com/library/showarticle.cfm?libid=8361

Taking too much salt can put a major strain on your kidneys, and 12 g is a lot! Cheney's maximum recommendation would work out to about 8 g of standard supermarket sea salt, which is also quite a bit. Personally I'm planning on building up to 3 g, or 1/2 tsp (his minimum) as a max. My local doc thought that was fine, but didn't like the idea of 6-8 g.

Note that Cheney is against using Florinef. Bell, last I checked, was still in favor of trying Florinef first. Who knows? I think this is a safer way to start, though. Potassium supplementation is always recommended (by smart docs) if you start Florinef or even licorice, but I don't know if it's recommended if all you're doing is salt/water. Even if so, you would only use very small quantities. (Maybe just eat more bananas!)

 

[mezombie]

Cheney's recommendations: Gookinaid or homemade version

Cheney does feel potassium is an important addition to the salt loading. He recommends drinking Gookinaid or making a homemade version (very simple -- basically salt and potassium and water). Here's some more info on Cheney's treatment suggestions for this problem and his recipe for the homemade brew):

http://cfsfm.org/index.php?option=c...atid=61:practical-and-positive&directory=4310

If this doesn't work, as far as meds go, I have found relief from Midodrine.

 

[Dr. Yes]

Thanks zombie formerly named as Marie!

I just found out that Gookinaid has (thankfully) changed its name, too. It is now known as Vitalyte, and the fancy website is vitalyte.com

The homebrew stuff sounds like a better deal. Recipe needs spritzing up, though.

By the way, mezombie, you've got something on your head.. hold still, let me get it...

 

[Sasha]

Still waiting to hear from my doctor with recommendations...

That's all very interesting about Vitalyte and potassium and Dr Cheney's advice. A lot of stuff as I've been websurfing say that it's better to add salt to food rather than just to take it with water, otherwise the stomach draws in water from the body to deal with the salt, thus dehydrating you further.

In the UK there has been a public health campaign recently to get people to have no more than 6g of salt a day so 3g sounds quite low to me. But who knows?! It's all so complicated!

 

[FernRhizome]

Be careful on electrolytes. They can be a HUGE help but you have to monitor your BP because you can also over do them....I used them to recup from a severe level 1 relapse but then at a certain point had to stop as my BP went from way way way too low to too high......so daily BP checking is wise. I used a natural juice electrolyte product. ~Fern

 

[Lesley]

Dr. Rowe has written a very detailed article on orthostatic intolerance, including salt intake. http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm Here is some of what he says about salt:

An adult requires between 2000 and 3000 milligrams (mg) of sodium to maintain health. Although health advice in the last two decades has suggested that a low salt intake helps prevent heart disease and stroke, many individuals with orthostatic intolerance cannot tolerate this low salt diet. We believe that individuals with neurally mediated hypotension or postural tachycardia syndrome need to take in much higher amounts of salt.

The exact amount needed is different for each individual, and is often affected by your taste for salty foods, but it is difficult to take too much, provided that you have access to lots of fluids if you become thirsty. A few individuals have been unable to tolerate an increase in sodium intake without developing increased weight gain, headache, or agitation.

Table salt is also an excellent source of sodium, as it has 2300 mg of sodium per teaspoon. Salt tablets are a way of getting enough sodium without dramatically changing the taste of your foods. If you decide to increase your sodium intake with salt tablets, we suggest that you start slowly, and work gradually up to 900-1000 mg three times a day. Some patients tolerate even higher doses. The amount tolerated varies from person to person. By stepping up your dose slowly, you can determine how much is optimal for you within this range. Remember that if you change your diet to increase sodium intake from your food, you may not need as many salt tablets. Some of our patients report better tolerance of a buffered salt tablet (the commercially available brand contains 450 mg sodium chloride and 30 mg potassium chloride). Salt tablets are available without a prescription.

As for fluid intake, be sure to drink at least 2 liters of fluid a day. Water is fine, but some prefer sports drinks (which have the advantage of a higher sodium content), and other commercially available rehydration fluids contain substantially more sodium than sports drinks.

I agree that it is usually recommended that you add salt to food, but I just don't like salt. I would add salt, then not eat what I had salted. I get around that by taking salt tablets with meals. I take 2 with each meal. They have 450 mg sodium and 15 mg potassium.

 

[FernRhizome]

One thing to keep in mind is there are many different types of salt. I used to use regular table salt but then I switched to "Real Salt" which is from utah salt mines and contains important mineral nutrients....I think it has been an important switch....~Fern

 

[xchocoholic]

The real salt has black particles in it that will not dissolve in water so I stopped using it. I have a history of kidney stones and diverticuli so this didn't seem like a good idea. I use Himalaya and celtic salt. I'm surprised that this isn't recommended by the medical profession as opposed to the table salt since it has more nutrients than table salt.

I can only use 2500 - 3000 mg of salt daily or I start to feel pickled ...lol ... and the left side of my bottom lip swells. I've gotten a swollen bottom lip from salt as far back as I can remember. If it were the whole lip or better yet both lips, I could live with it .. lol ...

FWIW... I'm still finding that if I'm having an OI episode (meaning, I can't think and all I want to do is lay down) from standing or sitting too long that letting a shot of salt, 1/4 tsp, slowly dissolve in my mouth will usually fix this. These OI episodes are a daily or several times a day if I'm out running errands. Laying down would work but this takes me an hour and isn't convenient. Granted, I still have to eat every 2 - 3 hours in order for this to work even. Oh and a glucose source will help me while I'm out running errands too. A 1/2 of a banana with sunbutter helps ... yum ...

Oh and I still need to get my salt from water. I tend to absorb liquids better ... I use 1 EmergenC + 1/4 tsp celtic salt + 1/8 tsp Konsyl + 1/ 4 tsp ground flax or chia for this + 1/ 8 tsp bee pollen in a minimum 8 - 10 oz of water ... Any less water if just too concentrated for me. You may not need the Konsyl or Ground flax or chia seeds but for some reason this is working for me and I need the fiber. Konsyl is gluten free.

EmergenC has 200 mg of potassium, etc. Local bee pollen is good for allergies and this is just a good way to slip it into my diet. I like the acai EmergenC the best ... I'm not at all sure that EmergenC is a good supplement but I needed a B complex, etc and this one isn't making me feel sick. The potassium Dr. Cheney recommended made me feel sick.

I'm still experimenting with treating my OI though. I've had 4 whiplash injuries and 1 concussion from being thrown on my head into 3 feet of water so mine may be mechanical. AND I have a left bundle branch block that is probably contributing to this. Not to mention how gluten has caused numerous nuerological problems for me.

Solgar essential aminos are helping me here too. I don't feel the need to lay down as often and my heart doesn't pound when I do lay down. I have a thread on essential aminos here if you're interested.

In re-reading this, I see that this all sounds pretty complicated until you think about how I came up with all of this ... I've been healthy at rest and mainly been trying to treat my OI specifically for over 2 years now ... hopefully we can all resolve this someday.

 

[L'engle]

I intake quite a bit of potassium to balance out the sodium. I get it from stevia, cocoa or ginger. I feel better if I do this. Salt alone can raise your blood pressure, but using good amounts of potassium *should* I would think, balance the salt. I've heard that potassium supplements aren't that good. I know that for me, if I add some ginger shreds to salt water, it doesn't give me the feeling of having had too much salt. Likewise if I have salt water with stevia. Still it is a really good idea to keep checking your blood pressure! Anyone know if the switch over to too high happens fast, or if it is reversible? I can tell too much cocoa, stevia or other potassium sources lower my blood pressure, so I imagine they woul help lower it if it too high. The stevia packets actually warn that they could be bad for people with low blood pressure, so I guess the BP lowering abilities have been documented. Good luck! It seems to be ever tricky getting around POTS and keeping blood pressure where it should be.

 

[Frankie Dene]

My GP who is also a ME/CFS expert has been telling her patients with low bloodpressure (mine is below 90/60 normally) to make up to 2-3 teaspoons of natural sea salt in a litre of water and sip it through the day. She says it should be done this way as the salt is lost quickly out of your system., and you should balance it with water. It brings my B/P up over 115/65 and I do feel better. I've been on this for ages with no bad effects. I make sure it is not iodised but others have said iodised salt is fine. It is so much cheaper than buying salt pills and I'm sure is as good. I have a B/P monitor and know that my B/P is consistently higher than when I don't take it.

 

[Hope123]

Good to hear people's ideas. Dr. Klimas suggested also drinking V-8, the regular form, not the low-sodium version. V-8 has 400+mg sodium per 8 oz. cup. I started using it and then found out Trader Joe's Garden Patch (their version of V-8) has 730 mg per 8 oz. Both drinks have a fair amount of potassium and also will give you at least one serving of veggies. I'm not much of a salt eater when it comes to food.

TJ's also sells pure sea salt. Frankie, I do what your doc suggests also. I just put teaspoons of salt in water and drink through the day in addition to the veggie drink.

 

[citybug]

Trisalt has some potassium too. I'm having lots of vertigo. Will try measuring my salt. Can I go off florinef?

 

[Dainty]

My experience has been that my body tells me loud and clear how much it needs and when it doesn't need more.

I eat my meals with a canister of salt next to me, and salt my food to taste throughout the meal. I cannot stand to eat without salt. I don't pay attention to how much I use, I simply put it on until it tastes right. Recently I had a week with a substitute caretaker who cooked my food with much less salt than my primary caretaker, and I didn't realize I was adding more salt to make up for it until I noticed that I had consumed about half a cup of salt from my container in about 5 days. I didn't know she had reduced the amount of salt, I just knew how much salt my body needed and unwittingly made up the difference. If I was "addicted' to the taste of salt, as seems to be the common perception, then this would not have happened.

Several years ago when my condition was more severe I would need (unflavored) electrolytes in my water throughout the day. As I improved I decreased the amount because I couldn't stand to drink water with "too much" electrolytes in it. The amount had not changed, only my need for it. Now I only try electrolytes on an as-needed basis, usually whenever I'm losing electrolytes, but if I don't need it it's nearly impossible for me to drink. A tiny amount diluted over and over again and I'm still grossed out by it is the way things are when I don't need electrolytes. But when I do then even largish amounts of it taste good to me. I doubt this would work as well with flavored or sweetened electrolytes.

The last time I calculated my average daily intake (which was years ago, I ought to do it again) I was consuming over 5 grams of sodium per day. At the time I had just done testing that showed "normal" sodium levels, which cracks me up because 5,000 mg is 2 1/2 times the maximum recommended daily intake. As a side note, I currently have a relative who's in the hospital due to dangerously low sodium levels...his doctor told him to cut sodium out of his diet because of high blood pressure, and he's done that faithfully and now is in the hospital for it. So my faith in doctors/nutritionalists knowing how much sodium you should consume is just about nil.

I would encourage anyone with orthostatic problems/low blood pressure or any PWC to experiment with salting your food as much as tastes good, even if that means pouring the salt on each bite individually. It's quite freeing to personally discover for yourself that your body won't let you consume more than the amount it needs at the time. The great thing about consuming salt and electrolytes to taste is that variants are automatically accounted for, that is to say some days you might need more or less than other days due to a number of factors and your body automatically accounts for this, whereas taking a set amount per day does not.