Anybody use salt tablets for OI?

[Sasha]

I've read about these and am wondering about trying them for my OI. I've tried electrolyte solutions before but just seem to pee all the fluid out and get no benefit at all. I have fairly low BP.

Does anyone know if they need a prescription in the UK?

 

[oryx-]

I'm curious about this too, I have OI, low BP and frequent urination. I used to drink a teaspoon of sea salt in the morning but it's so disgusting I have a hard time sticking wth it.

 

[Sasha]

Turns out that these are prescription-only in the UK and that I'm about to get a prescription!

I asked whether I need to take potassium to balance my electrolytes and was told I didn't. This surprised me but I'm a biological ignoramus.

I had to do a lot of asking to get even basic instructions about taking them (how often, how much water, and so on).

Does anyone have any advice for me?

Any experience, good, bad or indifferent?

If they worked for you, how long did it take to see an improvement?

I'm curious about what dose people are taking (in isolation, without other meds for OI such as midrodine etc.).

 

[beaker]

They can be very hard on the stomach. I wouldn't take on empty stomach. And of course, the more water you can get in the better. I took salt tablets ( more like horse pills ;-) along w/ florinef way back when. I did take prescription potassium but b/c of florinef not the salt. I drank a gallon or more of water a day on the protocol. I'm sorry to say it didn't help me at all. The florinef did not agree w/ me and made me sicker. But perhaps you will get some relief from the salt and water. It's worth a try. Different things for different people ! Good luck

 

[Sasha]

They can be very hard on the stomach. I wouldn't take on empty stomach. And of course, the more water you can get in the better. I took salt tablets ( more like horse pills ;-) along w/ florinef way back when. I did take prescription potassium but b/c of florinef not the salt. I drank a gallon or more of water a day on the protocol. I'm sorry to say it didn't help me at all. The florinef did not agree w/ me and made me sicker. But perhaps you will get some relief from the salt and water. It's worth a try. Different things for different people ! Good luck

Horse pills! Oh nooo! I have big trouble swallowing tablets. I'll need to talk about this with the pharmacy.

Sorry that you had no benefit. I think a PWME hear on the forum who posted a few months ago did well with salt alone but I'm not hopeful - I suspect it will be something to try first on my way to the serious meds (and I don't have high hopes of them either - but I'm desperate for even a small increase in function, as long as I won't be damaging myself).

 

[panckage]

I've found that taken even 0.7g of salt with water gives me acid reflux. I don't expect these pills to be much different.

OTOH I could take a lot more salt with food and the was well tolerated. The problem was how the the food ended up tasting

 

[ahimsa]

Turns out that these are prescription-only in the UK and that I'm about to get a prescription!

Wow, I'm surprised salt tablets are prescription only! Are you sure you can't get them online, e.g. Amazon?

They are sold over the counter here in the USA. ThermoTabs is one brand name I remember. ProHealth sells a different brand but I forgot the name. These are a bit better than the ones you get from the doctor (I did get some of those once). The tablets are smaller and they also have a small amount of potassium in them.

Here's a photo of the Thermotabs ingredients:


(click to make bigger)

I asked whether I need to take potassium to balance my electrolytes and was told I didn't. This surprised me but I'm a biological ignoramus.

I think potassium is important but that's just me. I have a time released potassium prescription (some generic version of Klor-Con, 750 mg) that helps me. But I'm also on fludrocortisone, a drug that helps the patient hold on to sodium at the expense of potassium. When I was taking over the counter potassium it was not enough and did not help much. After I started taking RX potassium it was better.

[Edit - Oops, I only read your second post but missed the first where you said electrolyte drinks don't help you. So you can skip this bit]

Another option for potassium is to find an electrolyte drink that suits you. There are powdered mixes. Or to get both sodium and potassium you could try the clear, unflavored Pedialyte (I used to get the generic version from Walgreens, not sure what brands you might have over there). Here are the ingredients:

To save money, and also save the environment (all those plastic 1-liter bottles), I mix up my own version at home. I use table salt (non-iodized) and potassium chloride powder (salt substitute). And if I'm skipping dinner then I throw in a spoon of powdered dextrose (aka, glucose). Some form of simple carbohydrate seems to help the sodium get absorbed more quickly. And dextrose is easier to digest than table sugar (sucrose).

Any experience, good, bad or indifferent?

If they worked for you, how long did it take to see an improvement?

I don't think salt tablets alone would have helped me much but along with fludrocortisone and extra water (the idea being to increase blood volume) they did help. But adding the midodrine helped even more.

I don't have a very sensitive stomach but I always took the salt tablets with meals, just in case.

I can't remember how long it took before I saw an effect (so many years ago). And my case was much different because I started 3 things all together - fludrocortisone, salt tablets, and extra water - as a combined treatment.

PS. The original Pedialyte image I included was wrong - new info attached.

 

[ahimsa]

OTOH I could take a lot more salt with food and the was well tolerated. The problem was how the the food ended up tasting

Exactly! I don't like much salt on my food (other than maybe mashed or baked potatoes). In order to get enough sodium I'd likely be gagging on my food.

So that's why I've been taking salt tablets and drinking sodium/potassium electrolyte drinks.

One study (see http://onlinelibrary.wiley.com/doi/10.1111/j.1540-8167.2008.01407.x/pdf ) recommended 10-20 grams of salt per day for folks with low blood volume:

The hypovolemic patient will do well with expanding plasma volume with generous salt intake and fludrocortisone. The salt intake should be between 150–250 mEq of sodium (10–20 g of salt). Some patients are intensely sensitive to salt intake and can fine-tune their plasma volume and BP control with salt intake alone.

 

[Sasha]

Thanks, @ahimsa - I've tried electrolyte drinks before with zero effect but I think the tablets are maybe to get a bigger dose down my neck. I'm certain I can't buy them in the UK (I've asked before) but since I'm getting a prescription I'll use that to try them out.

I phoned a pharmacist this morning for advice but he'd never heard of orthostatic intolerance .

 

[ahimsa]

Thanks, @ahimsa - I've tried electrolyte drinks before with zero effect

Yes, I missed that in your first post, sorry about that!

I phoned a pharmacist this morning for advice but he'd never heard of orthostatic intolerance .

Typical. I've had that same reaction from quite a few doctors. One was a sleep specialist, the other was a gastroenterologist. Both said something like, "What's that?" when I mentioned Orhostatic Intolerance as one of my diagnoses during my medical history.

What's worse, when I gave them a patient handout on Orthostatic Intolerance, the 10 page handout from Johns Hopkins, they didn't even look at it. They just handed it back.

It's not like this is some random data I got off the internet. I originally got this document from Dr. Bou-Holaigah, one of the authors of the Johns Hopkins research study that linked ME/CFS and Orthostatic Intolerance back in 1995.

I do download updated versions from the internet so I can print new copies. But this is mainstream medicine, nothing fringe about it. And doctors still won't even look at it.

Well, not all doctors. My primary care physician and my cardiologist look at documents I bring them. But new doctors are usually very disdainful of information that I bring them. So I don't go back to them a second time.

 

[ahimsa]

... but I think the tablets are maybe to get a bigger dose down my neck.

I'm a bit confused. Sodium in tablets is necessarily a larger dose than liquid form. It all depends on how many tablets vs. how much liquid.

For example, my potassium prescription, a time released tablet taken once a day, is about 750 mg (10 meq). But according to the label on the bottle, one liter of Pedialyte has about twice my prescription amount, 20 meq, about 1500 mg.

I remember this amount because I asked my cardiologist if it was okay for me to be taking that much supplemental potassium (30 meq) in a single day. He said it was fine (that was for me, who knows if it's true for others, please check with your doctor).

At any rate, it all depends on the amounts.