opus88

I think it's also important to point out that most people are using the typical table salt, which is really not the true product as found in nature - it is stripped down to just one basic element (sodium chloride, I think - ??). Real sea salt retains its mineral properties, and therefore the synergistic qualities are available to help the body utilize it properly. The chances of "overdose" of salt are greatly lessened when using the natural product.

Both a lack of B6 and an overdose of it can cause similar symptoms. You might want to take a look at your supplements to see if there could be a correlation between those and what you're experiencing. High doses of B6 took care of my palps and gurgles and such, but after a few months I started having the reduced sensation/numbness in my hands. I was told that since my body had rebuilt the B6, it was now too much and I should stop taking it. I've gone back to it on occasion when heart symptoms showed up, but only for a few days each time, with none of the hand trouble.

Carbonated drinks are among the worst things you can consume if you have this problem - avoid carbonation completely. (Plus the sugar and/or sweeteners are incredibly bad for us.) Along with the very small amounts of food at a time, try a pinch of non-aluminum baking soda in a small amount of water after eating. Magnesium supplements do not lower blood pressure, they help to normalize it. (I feel better when taking magnesium, and I have low BP.) Magnesium seems to help with palps and tachy, but B6 was more important for me with those issues than the mag was. Bettter posture certainly could help. Think of a hose - if you bend it, the water doesn't flow properly. Same with the stomach - it it's being squashed or somehow compromised by your posture, the food won't flow in or out properly. The stomach empties to the right, so perhaps lying on your right side after eating might be of help. A 10-minute gentle walk after eating is also supposed to help with digestion.

Gena, I don't have time to finish the article right now, but what I read was fascinating and I will return to it as soon as I can. Since I need to re-order my sea salt anyway, I ordered the one they recommend - great timing! It appears that salt may be involved in so many more of the difficulties that we dysautonomics face than I had ever considered: blood sugar, sleeping, energy, food absorption, brain function, etc. . . . Big thanks for finding and posting this great info!

I love those Puffins cereals, especially the peanut butter variety, BUT if carbs are a problem, be careful. I can only handle a small handful (no more than a dozen little puffs) added to other cereal, or just as a snack. Even then sometimes it will backfire on me. Amy, we have many of the same situations. I'm 5"3 and 92 lbs., and have been very thin all my life. It doesn't bother me that I don't gain weight (with a diet like mine, there's no opportunity!), but I certainly don't want to lose any. As of a couple of years ago, I had to adopt the almost gluten-free and completely wheat-free diet. I also learned that I was intolerant of milk products, but it got worse after going gluten-free instead of better. Now I cannot do milk products at all - not only because of bloating, cramping, etc., but my hands and feet become painful and stiff after even small amounts. Nina - Thanks for the heads-up on the fries! I do treat myself occasionally with those and have inconsistently had trouble. That could very well explain the problem. I don't know if this is true or not, but a long time ago I was told that McDonald's adds sugar to their oil to help the browning - I've avoided McD's since hearing that. Gena - Another link to gf foods. Yippee!! It's nice to have more options now, thanks to this string. Thanks for adding that info.

Contrary to its name, buckwheat is not a wheat or even a grain, so you can have that. I like the Cream of Buckwheat cereal, but have to go easy on it due to carbs. I also do corn tortillas instead of bread, and use them to make roll-ups (even with peanut butter and such). Nina - thanks for the links. I use glutenfreemall, but was unaware of the other. I'll be checking it out soon!

Miriam, Ugh. That must be really tough to deal with, especially for walking. Sorry you have to go through that! I appreciate the added info. It doesn't sound like that's the same thing I have going on, since I don't have numbness, just achiness and discomfort. My feet are almost always cold, sometimes normal, and rarely too warm - but they can easily sweat (sometimes a cold sweat) in shoes that don't breathe well. I hope you can find some relief soon!

The only chromium I had ANY result from was Nature's Sunshine brand of GTF Chromium. Not sure why it's different, but it sure took care of my extreme muscle weakness and that feeling of incredibly heavy limbs! I took mega doses of 9 per day for a few weeks then weaned back to 6 and eventually one, but after only 4 days I was able to enjoy a relatively normal day (12 hours, including much walking!) for the first time in many months. Now I only take that on need, which isn't very often.

I've never had a migraine (about the only typical symptom I don't have to deal with), but certain foods can certainly set off a slew of dysautonomia-related symptoms.

Ernie, that's terrific. I'll be keeping my fingers crossed that you get some definitive answers soon. Extreme muscle weakness can be experienced if the glycogen (I think I have the right word) is not getting pushed into the muscles. Four days on a hefty dose of GTF Chromium brought a world of difference to me, and continued to bring improvement over a few months. Just wondering if that might be pertinent to you.

Miriam, CAUSED by loss of sweating ability? I wonder how that can cause pain. Neuropathy is degenerative. Did your doctor give you any indication of how much damage has occurred? Was the sweat test the only way they diagnosed it? (There is more than one possible cause for lack of sweating. It just seems odd that such a test would result in a neuropathy diagnosis.) My hands and feet can sweat, so I'm wondering if there was something else in your tests that led them to that conclusion. If you have any more info on that subject that you could share, I'd certainly appreciate it!

I certainly wouldn't call mine severe, but I have had it. Many times I can't be sure if it is bone or muscle or ligament or nerve or what. I just know it aches. Sometimes it's more specific in its location, sometimes more generalized. I never know where it comes from, why it started or how long it will be with me. But I have found over the past few months that dairy products are a huge culprit for my discomfort that appears particularly in the hands and feet. I do know that arthritis symptoms of all types can be greatly lessened by 100 percent elimination of dairy products, so maybe some of us have that going on, too . . . ?

I saw that story this morning. Pretty amazing, huh? Makes you wonder about what the scientific world thinks they know about the human body and the functioning of the brain. Obviously, they have a long way to go to understand what makes us tick . . .

Hey, Gena! Congrats on making it through the big day! Too bad about the shoes, but I'm sure they looked wonderful. I must say, I'm impressed that you had enough energy - even though exhausted - to clean house today. So how are you feeling this evening after all that? I'm sure the relief of having this big event behind you will help in many ways. Glad you had the chance to enjoy the beautiful day. (My hubby and I walked and sat on the beach for more than an hour. Windy and slightly chilly, but still wonderful!)

Gena, that kind of a day can wear anyone out. Add our need for downtime and our difficulties doing the routine things, and there's a very strong chance for some pretty big stress. While it could be fun once you get there, I think I can say that all of us here understand the concern over getting yourself there and then feeling ok after all the planning and rushing around. I've had my share of horrible experiences trying to get myself somewhere in spite of feeling like I could collapse, and I know I'm not the only one here with similar stories. You could call your friend and tell her that while you would love to take part in her shower festivities, you are not feeling very well and have a huge evening ahead. Either go late to the shower (for me, that's easier than leaving early) or make arrangements to drop off a gift at another time. Be sure to eat very well today - no cheating - and keep a bottle of water handy. Hopefully you'll find your shoes easily and have enough time to lie down before the evening's event. I'll be sending positive energy your way. Let us know how you fared!

Hey, Jill! Hang in there with the water. Tearose's suggestion is really good - maybe that will help you. Most of us with dysautonomic problems have a compromised thirst mechanism. We don't feel thirsty until waaaaaaay late in the dehydration process. (Typically a person will feel thirsty at the beginning of dehydration.) Sometimes it helps to know that our mechanism doesn't work properly. The knowledge of that trouble created a shift in my thinking and made me more determined to drink before feeling thirsty. Maybe it will do the same for you.

I can't do Gatorade. Tastes way too sweet and leaves a horrible after taste, plus my body just can't handle the sugar (natural or otherwise). I did Emergen-C powders for a long time, and especially liked the cranberry. But over the past year or two my electrolytes have changed balance pretty drastically. Now the potassium in the Emergen-C is a problem for me, so I can't drink that any longer. All I drink is water, and a rare "medicinal" usage of about 2 or 3 tablespoons of coffee (and the rest of the cup filled with hot water) if I just cannot stay awake at work. But I do make some variation of chicken soup fairly often, so that counts toward my liquids, too.

Emily, you are my hero. Those cosysoles are AWESOME!!! Warm and comfy. Hey, gang - they are $50 plus shipping. This might seem hard to justify at first, but OH MY GOODNESS are they worth it!!!

I just did a self-administered GTT for the Metabolic Typing testing. I was very surprised that one of my readings was 160 - I've never caught it above 120! I went from 90 jsut before drinking the solution to 160 30 minutes later, then 134 45 minutes later, 109 20 minutes after that, and finally 103 20 minutes later. I felt ok at the highest reading, but then felt worse as the levels came back down. I'm going to look for my previous 2 tests to see the speed of change and what my reactions were at those times. Will be interesting to see if I can find any kind of pattern.

Hayley, Will you please share with us what you are eating? It would be good to list an entire day's menu and what times you ate. That may help us to help you via dietary suggestions. The potassium connection is certainly important, but be aware that too much potassium in relation to other things can also cause some of those same problems - I've been there and still continue to work with that. I've also been there with eating every 90 minutes - sometimes even more often. I did that for a few years yet still could not gain an ounce. Once I learned how to eat according to my body's needs, this has not been an issue. As for the bladder trouble, it could be a number of things. Barring an infection or other such difficulty, it could be that you do not have enough "weight" to the liquids to keep them in your system, even if you are chronically dehydrated. After a few months of adding cell salts to my water, this is no longer a problem for me. And something else that had worked (prior to the cell salts) for the multiple middle-of-the-night bathroom trips was taking parsley capsules.

Ramakentesh, These tests are not nearly as accurate as we are led to believe. You may have caught your reading at a normal level, but was it on the way up or on the way down? It could be that a crash is happening very quickly, bringing the symptoms on by the speed of change rather than the momentary reading. Or your glucose could be quickly shooting up, causing the ill feeling, and again you just happened to catch it while it was in that normal range. Researchers or engineers or whoever designs these things need to find a way to do a continual glucose monitor to watch the flow of activity rather than just relying on a snapshot approach. You could try doing a stick every 60 seconds or so, but OUCH!! (I haven't gotten desperate enough to put myself through that.)

Fun - a nice diversion and another way to know each other! 1) screen name Opus, given name Julie (but I legally changed my name a few years ago to something that suits me a whole lot better) 2) so many, not good with titles - a favorite novel was For Richer, For Poorer - a multi-generational epic about a poor woman's revenge on a rich family 3) again, so many - perhaps Seabiscuit 4) (in no particular order) the beach, warm weather, feeling good, sense of accomplishment, my hubby, playing the piano, reading, watching (or hearing) the crazy antics of my parrot, etc., etc., etc. 5) I started playing the piano at age 4 and had my first recital at age 5

I've never had this kind of nausea - mine does not include vomiting (although sometimes I feel like it would pass more quickly if I could). A very inexpensive thing to try is a homeopathic remedy called Nux Vomica. One dose of this (I rarely need more) works like magic for me with any stomach-related trouble. I don't know if it would help you or not. It's only about $7 where I live, so even if it doesn't work for your situation, you aren't out much money - and it won't necessarily be wasted, since your hubby can use it if he ever has an upset stomach.

Many times, adding a truly good probiotic while taking antibiotics will keep people from feeling so crummy during the treatment. Antibiotics kill the good and bad bacteria, while probiotics replenish the good bacteria. Since bad bacteria grows more quickly, we often need help (via naturally fermented foods and/or supplements) to get the good ones to flourish.

Gayla. I can't even imagine how frightening that would be! And you are way too young to be going through something like that - not that it's ever ok, but we don't usually hear of that happening until people are much older. Have you told your doctor about it? Could it have been caused by your medications? I don't think I'd waste any time wondering about something like that - you need to know why that happened and how to keep it from happening again.