Something Helpful for Non-POTS dysautonomia

[Echo]

Hi all, I'm not sure how many people there in this community that have non-POTS dysautonomia but I thought I'd share something I have found useful lately. 

When I was first diagnosed I was told to load up on salt and water, the same as if I had POTS. I did this for about a year a half (more of the water, was not consistent with the salt). I did see improvement but I don't know if that was the salt and water or just time. Anyway, I have a pretty regular water schedule and make sure to have a big drink every one - two hours. Then a couple of weeks ago I was at work and forgot my water bottle so I had to visit the staff kitchen every time I needed a drink and since that wasn't practical I ended up drinking about half the water I usually would. And I didn't feel sick! So over the next week I experimented with halving my regular water intake and I was surprised that since I have done that I find I have more energy and less brain fog.  

I've done this for two+ weeks now and I still feel better than when I drink a lot. I know it's crazy, and I'm not saying it will work for everyone with non-POTS dysautonomia but it also makes sense. When I was drinking all that water it was going right through me and I'd be in the toilet almost every hour. I read up on it and apparently too much water can be just as bad as not enough. It means your kidneys are constantly working (that's why I think I have a bit more energy now) and you're flushing away electrolytes which you constantly have to be replacing. I guess I'm retaining more electrolytes now that I'm not drinking so much and that is probably helping my body.

So not a cure all by any means but I have noticed enough improvement to make a post

[StayAtHomeMom]

Most doctors assume dysautonomias is because of low blood volume. Some cases are, and some aren't. In theory adding water with the extra salt, to help you retain the water, ups your blood volume. I am not so sure about water/salt treatment. I know I crave salt when I feel bad though (I have POTS) so maybe there is something to the theory. Also (at least in the US) most people don't drink enough water. There is also the misconception that POTS (at least, it may be dysautonomia in general though) is due to deconditioning. Which a lot of people on the forum have seen otherwise. 

I think there is not enough answers to dysautonomia in general. And our disease is not well known enough for there to be a lot of research being done. So the doctors prescribe simple things that may help. Along with medication. And there are so many differences in symptoms and care for each individual patient. 

Out of curiosity how much water were you drinking a day before you cut it down?

[yogini]

 Many people have NCS which is  the most common form of dysautonomia other than POTS.  They might have low blood pressure and low or normal heart rate, but generally do feel better after adding salt+water.  

[Echo]

@StayAtHomeMom I would say about 2 litres. 

Yep, I know everyone is different  I also have the feeling that salt and water are kind of a band aid and it seems like it's not necessarily one that I need. 

[voxel]

Yeah I'm not convinced salt loading works for everybody. It's what my cardiologist recommended upon telling me I had dysautonomia (in the process of a second opinion) but the high salt elevates (can't always drink enough water to balance electrolytes perfectly) my blood pressure to hypertension levels which then eventually triggers sinus tachycardia for me.

I do try to have more salt than normal as low salt levels I can feel in my leg veins these days.

[bombsh3ll]

I also never found any benefit from extra salt and now drink commercial electrolyte mix instead which is more palatable.  I think any benefit from extra salt can only be very transient as the body just adapts and pees out the extra. I do second the concerns about large amounts of plain water though - that can lead to low sodium levels. 

I don't produce any fluid retaining hormones and consequently drink a lot voluntarily due to thirst - I always have though, long before I developed POTS.

What I am curious about though when I see recommendations for POTS patients to drink 2 litres, 3 litres etc, is whether this is your total fluid intake for the day which seems very low, or if it is in addition to what you would normally drink by choice?

I drink a litre of electrolyte mix before getting out of bed, and my total daily fluid intake is about 6 litres. 

B x

[yogini]

Electrolyte solutions usually have sodium in them. The danger of sodium/salt is that it increases your blood pressure and can cause  high BP which in the long term causes damage to the heart and blood vessels. Many of us have low BP and/or low blood volume and salt can help with that. If you don’t have low BP or blood volume, it may not help. Your doc can confirm but as long as your BP is in the normal range (120/80) there should not be any long or short term risk to increasing salt/sodium.