Sticky Blood-Hughes Syndrome Support
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Ideas of how to increase Salt Intake

Hello - Dr has rx'd increased sodium - 2-4 t a day (to treat low BP). I have been trying different things.....Salting food just doesn't get me to this req amount, drinking 1/2 t / 8 oz water, just reeks havoc on GI and now I'm dehydrated....Has anyone else found a successful way to increase salt to this amount? About to just go back to my ol' college diet - Ramon Noodles and potato chips! See, I'm desperate!

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Hi do you have a diagnosis of Hughes Syndrome/APS? MaryF

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Yes, that is one of the multiple dx. I know salt increase isn't an APS issue, but seems like APS is typically not an isolated dx - thought maybe other APS and dysautonomia folks out there for some tips...

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Are you under one of our recommended specialists in the UK? hughes-syndrome.org/self-he... We can't give you dosing instructions for your current BP problem, if not working for your low blood pressure you must take that back to your doctor. I used to have low blood pressure due to my slow thyroid, often missed I am afraid, due to how unreliable the TSH test is. Lots of us on here have several diseases. MaryF

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I see Dr. Schofield here in the States for APS and dysautonomia. I know the dose I need (2-4 t) ...just am trying to figure out creative ways to get that much salt in my diet.

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Ok, here is a useful list in case you need it: apsaction.com/

and these ncbi.nlm.nih.gov/pmc/articl...

lup.sagepub.com/content/ear...

MaryF

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Thanks, Mary. Yep, I see the Dr. Schofield - first author of your last link. Thanks for info!

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I had same issue and due to autonomic issues. Had to increase fluid intake especially before getting up in the morning. I increased salt intake by using sea salt in food, on food, and ate a few packets of good quality potato chips and salted peanuts! As I did not used to use salt at all this has helped.

Good Luck!

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I started drinking 16oz of water before getting out of bed in AM w/pill/vits.   This has really helped with AM dysautonomia issues.  Good tip!  It's amazing how dehydrated we get while we sleep.

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Hi, I have the combination of APS, Ehlers-Danlos Syndrome and PoTS (and a long list of other things..) and have been told to add 10g salt to my diet in addition to the 2-4g a day I usually have. Taking it as salt tablets seems much easier since adding all this salt to my food would be very difficult. My diet is normally low in salt and fat and a lot of the food naturally high in salt would also be high in fat and not the kind of food I would eat. It would also be more complicated to make sure I got the right amount every day so I am therefore going to try salt tablets. I haven’t started yet so can’t tell you the result, but this might be something for you. I suggest you talk to your doctor about taking salt tablets and the right dose for you before starting, and also what kind of salt tablets to take as some contain a lot of other stuff aimed at sports people and are high in calories. Drinking enough is very important on salt tablets, I drink around 3 litres every day.

Good luck!

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Thank you!

Helen, 10 g! Yeaks, that must be tough! Even 2-4g is very difficult. My heart goes out to you! Yeah, I have salt tablets, but 12 tablets/day just to get to the low end of the dose is a little $$. And like you, I limit what I put in my body in terms of diet. I'm a vegetarian, and really like the raw foods... And yeah, 2-3 L of water a day. Good luck to you!

APsnotFab, I've given myself "permission" to eat the salty snacks, salt my foods and drink sports drinks, since my dx of POTs last year. But alas, my salt is still too low. I am super happy this has helped you - it's like a win-win...you help your BP and you get to eat cheat foods!

I sincerely appreciate the feedback. And it's nice to know there are others out there with these same issues....(I've never posted on a chat room before!)

And if I find any creative ways to get this salt in, without throwing off the whole eco system, I will pass it along. Take Care

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My daughter is 22 and is also a pt of Dr. Schofield. She has EDS, POTS, and APS and she has a really hard time getting enough salt intake as well. It seems to be a problem for a lot of people!

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I have found that 1/4tsp of salt in 8oz of water drank 3-4times a day really helps.  I try to drink with my vit/pills.  If I go to 1/2tsp I end up giving myself a "salt water detox"....not fun! 

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Just FYI, there is the Dysautonomia International conference in DC in July if interested.  Dr Schofield (who does APS and POTS research) reccomended it.  Hoping to get more tips for controlling the dysautonomia resulting from having autoimmune.  Also great place to network....find more APS/POTS folks.  

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I realize this is an older post but haven’t heard from you on here and are checking you are okay. Did you go to that conference and we’re there people from all over and the US? Did you learn anything new?

Have you learned anything new about the salt?

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Hello! Yes. Very old post. The high salt diet really did nothing for my pots in the long run. So I stopped taking that in high doses long time ago. I have been to the Dysautonomia International conference two years now. This year is in Nashville and I plan on going. It’s really great place to get latest info. I’m currently on IVIG for my autoimmunes, which has helped my pots a lot. I’ve also been dx’d with MCAD and I’m on a low histamine diet for that....which has helped a lot too. So all in all I’m doing really well. Have you been to dysautonomia international conference yet?

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No it may be a goal for the future though. What is the date and where?

I am excited to meet people in the flesh with APS. This must have been very exciting for you. Were there a lot of patients from the U.s there?

Are you still with Dr S?

Be well and good luck on the IVIG, don’t be such a stranger here. As I remember you, you have a wealth of information you could share with all of us to help us out.

I had remembered you as soon as I saw your picture.

Be well! Cindy

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Here is the link to the DI. Conference this year: dysautonomiainternational.o...

Lots of patients of all sorts. Lots of great tips and info.

I am still with Dr S. She’s helped me go from bed ridden to back to part time work....it’s been a crazy few years.

Hopefully I’ll see you at the conference!

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Thanks it would be nice, if I go I’ll let you know

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Canned things and Gatorade if you can stand it. Good luck. Or you could just get a horse"salt stick" to lick ..lol!

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Fusch hmm

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