jared Posted October 24, 2015 Report Share Posted October 24, 2015 Hi, all! So glad to be here (although, you know, I kind of wish NONE of us had to be here...)I am a 49-year old man, recently diagnosed following a 1 year period of severe acceleration of symptoms (and who knows how many years before that with more moderate dyautonomia/POTS). I am fortunate to have a neurologist who recently came to my university from the Mayo and who is therefore very familiar with all of this. His recommendations familiar to this community: increase fluids and electrolytes (10gm of salt); raise the head of the bed 6 inches; compression stockings; and daily moderate exercise. I was hoping for advice for advice on the first 3 (my physical therapist got me started with exercises).1. Fluids are easy to increase, at least theoretically, but I am struggling with the salt. Most of the high-sodium foods they recommended are processed foods which will ultimately do as much harm as good, and eating a relatively healthy diet means I am eating a fairly low sodium diet, making getting up to 10gm daunting. He recommended against salt tablets, so I am struggling to figure out how to get there. Anyone have any useful tips?2. Raising the head of a kind bed is a bit of a challenge-- putting bricks under the legs as he recommended puts too much strain on the frame (and my wife kind of hates the bricks, which I get. Are there other strategies for getting elevation in a larger bed that have worked for people?3. Compression socks/stockings. I started out with light knee-high socks and felt the benefits immediately: cramping diminished and I wasn't walking like a drunk. And they are nice socks: wool blend, comfortable and sock-like. But now the doctor wants me to raise the height to thigh- and waist-high and suddenly the options are much less appealing. They all seem to be made of nylon stocking material and not exactly fashionable men's wear. Ok, I'm really not that hung up on manliness and not at all on fashionableness, but the feeling of nylons on my skin is nails on chalkboard for me. Has anyone found any thigh-high options that are more sock-like? Or, if not, has anyone tried a combination of knee-high compression socks with athletic compression briefs?Many thanks for any thoughts or recommendations even if it means just telling me to suck it up and wear the stockings already). And thanks for bringing me into the community. I am looking forward to learning from you all.jared Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted October 24, 2015 Report Share Posted October 24, 2015 Hi Jared,Welcome to the forum! There is a company called Zensah that makes athletic compression wear that I've now started ordering some pieces from. I purchased a pair of Recovery tights that look just like a pair of black leggings that I'd buy while out shopping. They were about $150.00, but I get a ton of use out of them. I've also gotten a compression tank top and some sock's from this manufacturer. One of my md's nurse's recommended that I check this brand out, so glad I did because the style and support is fantastic. I'm glad that you have a doctor who is familiar with this condition. I hope PT is helpful for you. Are you incorporating the Levine protocol at all? Again, welcome to DINET. SarahI've copied and pasted some items that have a high sodium content, From the entry Please Pass the Salt, http://www.dysautonomiainternational.org/blog/wordpress/pleasepassthesalt/V8 vegetable juice 8oz 420 mgMorton table salt ¼ tsp 590 mgBoar’s Head Cold Cut Turkey 2oz 330 mgBoard’s Head American Cheese 2 oz 700 mgBreakstone Cottage Cheese 4oz 340 mgAthenos Feta Cheese 1 oz. 340 mgKikkoman Soy Sauce 1 tsp. 307 mgSwanson Chicken Broth 2 cups 1720 mgSwanson Veggie Broth 2 cups 1600 mgSwanson Beef Broth 2 cups 1600 mgKnorr Chicken Boullion Cube 1 cube 1270 mgDelMonte Creamed Corn 1 cup 480 mgVlasic Kosher Dill Pickles 1 oz 210 mgKalmatta Olives 1 oz. 429 mgGoya Manzanilla Olives 2 tbsp. 330 mgRold Gold Pretzel Rods 6 pretzel rods 1220 mgHeinz Ketchup 1 tbsp. 160 mgGoya Capers 1 tbsp. 380 mgOscar Mayer Fully Cooked Bacon 3 pieces 340 mgHebrew National Quarter Pound Franks 1 frank 1070 mg Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted October 24, 2015 Report Share Posted October 24, 2015 Hello and welcome to the forum!Glad you have a Dr working with you, that's great. My Dr also does not want me to use salt tablets so I understand the difficulty of trying to reach the goal. Right now I just put extra salt into my J TUBE but before that I had to get creative... I ate lots of different soups that could disguise extra salt, also pretzels and salted vegetables. Eventually ended up drinking salt water with some lemon juice mixed in it because nothing solid was an option.Before I got my hospital bed my dad was going to build/stain wooden blocks to use instead of bricks so it would match the room decor. Dont know if that's an option for you.In the past I have used a combination of compression garments. I saw the most benefit with compression/slimming undershirt, girrdle, shorts, knee compression and knee highs. Right now it would be impossible for me to get the combo on so just use the knee highs for some benefit. Last time i attempted to get a pair of waist high stockings on I passed out in the process so no can do. Just have to see what works best for you and your lifestyle.Hope you figure out what works for you soon. God bless. Quote Link to comment Share on other sites More sharing options...
ks42 Posted October 25, 2015 Report Share Posted October 25, 2015 I can completely understand the salt issue! One of the big things that really has helped my POTS is avoiding processed foods for the most part, so I don't get my salt that way. I am hypovolemic, though, so increasing salt/fluids is actually really important for me.One thing that was important to clarify in the beginning (for me, at least) was that when my doctor said 10g salt, he meant salt, not sodium. There is about 387mg sodium in 1g of salt, so about 3.8g sodium in 10g salt. I was trying to reach 10g sodium in the beginning, which seemed impossible. 3.8g sodium per day was a lot easier! Not sure if that's what your doctor meant in your case though.To get enough salt, I add 1/4 tsp sea salt (500mg sodium) to 16 ounces of water. Add juice or electrolyte mix to help with taste if needed. I also drink 8-16 oz of coconut water per day for the electrolytes & naturally occurring sodium, and I do like drinking broth, so I will sometimes compromise on my "no processed sodium" rule for this, and if I do 8 oz a day of chicken or vegetable broth, that's over 1g of salt right there. Both my doc (who wanted at least half my daily fluids to contain salt) and my nutritionist (who has EDS and POTS himself) really like my salt water & coconut water method, although everyone is different, so I'm sure what's right for me may not necessarily be right for everyone.And because we cook all our meals at home, it's really easy to just salt & season the heck out of everything we eat. We've gotten used to the taste of salty food, and can easily get half of our daily salt intake through food. Quote Link to comment Share on other sites More sharing options...
ks42 Posted October 25, 2015 Report Share Posted October 25, 2015 Robstahlobstah - I know I'm hypovolemic because I've had blood volume testing done. One test they can do is a 24 hour urine sodium test. It's not a perfect marker of blood volume status, but it can give a general idea. Mine have always been too low, which points toward hypovolemia. Dramatic response to IV fluids can also be a clue. My POTS symptoms and blood pressure improve so much after 2-3 liters of IV saline, my doctors said that's also a big indicator that hypovolemia is an issue.You can also have a blood volume study done which involves injecting a radioactive tracer to measure blood volume, although not many doctors do this. I believe only some of the major medical centers (like Cleveland Clinic, I think) do this one. But it's pretty specific, and can usually tell you exactly how hypovolemic you are. Quote Link to comment Share on other sites More sharing options...
jared Posted October 26, 2015 Author Report Share Posted October 26, 2015 Many thanks, all, for the recommendations! This is extremely helpful. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted October 26, 2015 Report Share Posted October 26, 2015 The only thing I could add at the moment is the bed elevation. We have a queen sz log bed. We used a 6by6 I believe railroad tie. Worked perfect. Quote Link to comment Share on other sites More sharing options...
ks42 Posted October 31, 2015 Report Share Posted October 31, 2015 Robstahlobstah - no, sodium blood test won't tell you if you are hypovolemic. Detecting hypovolemia is actually really tricky, as your blood tests will usually be normal. Quote Link to comment Share on other sites More sharing options...
Nymph Posted November 4, 2015 Report Share Posted November 4, 2015 You can also get salt tablets that you swallow, and these allow for a diet that does not depend on processed foods.For softer-feeling compression, look for microfiber. I have also seen cotton tights on some sites. Can't remember where. I would worry that they would lose their compression quickly, though.Good luck! Quote Link to comment Share on other sites More sharing options...
jared Posted November 4, 2015 Author Report Share Posted November 4, 2015 Many thanks, Nymph. I thought the microfiber would be intolerable, but I have a pair and the compression feels so good that I don't mind it at all. Quote Link to comment Share on other sites More sharing options...
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