opus88

Emergen-C is great if you need to boost your electrolytes. I did great with it for a couple of years, then started having trouble because somehow my potassium levels rose too high. Emergen-C is high in potassium so I had to stop using it. But if you do not have that problem, this powder is MUCH healthier than Gatorade which is loaded with sugar. Read the label on the Emergen-C box for more info, including a website to visit.

I don't know if it will work for anyone else, but my muscle twitching went away after supplementation with magnesium lactate. I can always tell when I need to bump it up again because the twitching will begin to come back. I have found that I cannot go for long periods without that mag lac - if I skip it for more than a few days, I get worsened fatigue, more sleep trouble, and my patience is gone.

I was the one everybody always told, "I don't know where you get all your energy. Just hearing about your schedule wears me out!" I guess I had an overabundance of adrenaline but my body handled it well back then. I thrived on being busy and loved every minute of it. As I got older, I would have bouts of lesser energy lasting days to weeks. They became more severe and more frequent until finally about 3 years ago I was nearly debilitated with chronic fatigue for months. Yet, typical of my stubborn personality, I wouldn't give in and just kept pushing myself - a full-time job plus 3 part-time jobs and I couldn't call in sick. Of course, I didn't know about dysautonomia at that time (POTS is not my main problem, although I do have the low BP, inability to stand very long, etc.). If I should ever again get that sick, I don't think I could keep going as I did the last time.

Yes, I yawn way too much. But it goes in cycles. When I'm more symptomatic, this can be a constant nuisance - sometimes I yawn just about every minute! Other times it's not a problem at all. POTS is not my main condition, so I don't think it's specifically related to that - but it is related to the dysautonomia. Dys has screwed up my memory so badly that I can't help you with the why of it, but at one time I had read about yawning and a correlation with dys, and it made a lot of sense. If I run across that info, I'll post it. The yawning is certainly frustrating and annoying, but I'll take it any time over any of the other symptoms.

Just a few other allergens to consider, especially if you've recently changed something in your routine (you've probably thought of most or all of these): yeast supplements or medicines lotion, soap, shampoo or conditioner pesticides/insect repellents being used in your home, yard or neighborhood acidic foods such as citrus A friend just went thru a similar situation and she found that if she ONLY ate fish and raw veggies she didn't get the rash. Yeast seems to be the biggest food culprit to trigger her symptoms. She also found that if she followed her regular shower with a cold shower starting with her feet, then legs, then hands, arms, shoulders, back, face and head (yes, in that order - said she read about that order being important) it also helped tremendously. Something about the warmth of the shower bringing the acid to the skin and the cold water restoring the alkalinity to balance it out.

I am so incredibly sensitive to caffeine that I have to be pretty desperate to resort to it. But when I do feel that nearly debilitating sleepiness/fatigue while I am at work, I will put about 2 or 3 swallows of coffee in a mug and fill it the rest of the way with hot water. If I'm not careful about the amount (even at that tiny dose) it can backfire with a wired feeling, trembling, etc. But I truly use caffeine ONLY medicinally, infrequently, and very carefully.

Some books on nutrition that I've found to be extremely helpful: The Metabolic Typing Diet by Wm. Wolcott The Maker's Diet by Jordan Rubin The Zone (although I don't agree at all with his use of fake protein) The Glucose Revolution The Recipe for Living Without Disease by Aajonus Vonderplanitz The Healing Power of Whole Foods by Beth Loiselle There are many others, but those are the ones I can remember off the top of my head.

Try switching to a really good sea salt, the kind that is still somewhat moist - it retains its natural chemistry, unlike the "dead" stuff we refer to as salt today. Add a pinch to each glass of water.

After 22+ doctors and getting nowhere except "I don't know what else to do" (at least they were honest!) or "your tests are all fine - you really need to see a psychiatrist" (a bunch of BS and a huge cop-out), I GAVE UP on the medical world. It was THE very best thing I could have ever done. I will go to them for tests, then get a copy of the results and any records in my file, then do my own research. And you know what? I am leading very close to a normal life again! Once I stopped relying on them for prescription treatments and I stopped believing everything they told me, I GOT BETTER! No. not cured, but my symptoms are now much fewer and much less intense - and that is after being very close to bedridden and after much serious consideration of disability. Everything I do now is based first on nutrition, then professional-grade, whole food supplements. I have received great benefit recently from enrolling in the Metabolic Typing Program, but even before that, changing my diet and taking the correct supplements for my body has absolutely been the way to go. So, my suggestion is to go for the tests, get copies of everything from every doctor you have visited, and start working on the puzzle yourself - paying particular attention to vitamin and mineral imbalances that can cause your symptoms. Don't just jump into whatever poisons (more commonly known as prescriptions) they are recommending. If I had been following their advice, I would now be taking at least 6 different prescriptions and dealing with unknown side effects caused by them individually as well as cumulatively. I would not feel much better than I did at my worst (probably no better, and in fact, most likely worse) and I would be caught in a world of drug dependencies. It's hard work, but wouldn't it be worth hard work to feel so much better? Too many insist on taking the "easy" route of popping prescription pills for something the medical world has yet to figure out. That is not a cure, and you are endlessly treating symptoms instead of causes. Nutrition actually treats the causes and then the treatment is only temporary until the imbalances can be corrected - unlike the lifelong sentence of drugs meant only to treat symptoms, not causes. Remember, nobody but you is ultimately responsible for your own health. Ask for help as much as you need, but don't ever give your power away by blindly following the medical world! Good luck!

Great! I truly hope you can make some headway. But even if nothing apparent happens, just getting the word out to someone - anyone - is better than nothing. And who knows who you may have helped in the meantime without ever knowing it . . . Do let us know how it goes!

Like Ernie, propranolol works for me. I only take a 10mg dose when needed, and it's pretty rare that I need it. But when I do, I'm sooooo glad I have it! It's also the only prescription that I use.

I used to be a certified instructor & consultant for Brain Gym, a part of the Educational Kinesiology Foundation. It's an incredibly fascinating and highly successful, proven program that develops new pathways in your brain. It can help with cognitive tasks as well as emotional situations which you would like to handle more easily. Unfortunately I became too ill to continue such work to help others, and after a while couldn't even complete my own activities that I had been so faithful to and enjoyed doing. Your doctors are exactly right about brain exercises. What I would suggest, however, is adding a more purposeful physical component, such as coloring with your opposite hand, or just free-form drawing with both hands mirroring each other (if your right hand goes out to the right, your left hand goes out to the left . . .). You can even stick crayons between your toes and do the arms and legs at the same time, limbs always mirroring each other. Try writing your name in mirror image and then with hands and feet at the same time - it's a riot! Any time you can do an activity that incorporates crossing a midline of your body (across the waist, from right to left sides, or front to back), you are helping to build pathways in your brain. Think about ways you can do those things based on simple activities. Be creative, and you will certainly benefit from it!

HOW TO TREAT VERTIGO AT HOME Research has shown that performing specific body-positioning movements at home could help alleviate the symptoms of a common contributor of dizziness that results from a build-up of crystals in the inner ear. Medical studies revealed that a technique referred to as the modified Epley procedure (MEP) works more effectively on "benign paroxysmal positional vertigo" than another technique known as Semont maneuver (MSM). Based on the results from these studies, researchers are recommending MEP as the foremost self-treatment technique to achieving quick relief from vertigo. Comparison Study Between MEP and MSM for Treatment of Vertigo 70 subjects with vertigo were selected at random to try MEP or MSM to alleviate their symptoms The subjects were asked to repeat the maneuvers of the treatments three times a day until their vertigo symptoms didn't last more than 24 hours The MEP method The patient begins by sitting on a bed with their head tilted slightly toward the affected ear Using a pillow for shoulder support, the patient quickly reclines to their back After 30 seconds pass, the patient then moves their head to the right 90 degrees for an additional 30 seconds Finally, the head and body are turned another 90 degrees to the right for 30 more seconds before returning to a sitting position The MSM Method The patient begins by sitting on a bed and turning their head slightly in the direction of the unaffected ear The patient then quickly drops to the side of the body with the affected ear for 30 seconds The patient then quickly switches to the opposite side of the body, without stopping for another 30 seconds before returning to a sitting position Results of the Study After administering the treatment for one week, the participants following the MEP method no longer experienced symptoms of vertigo The group using the MSM method were successful with their method the 58 percent of the time The number one reason cited for failure of the MSM method was applying the method incorrectly Neurology July 13, 2004;63(1):150-2 -------------------------------------------------------------------------------- A video showing the maneuvers is available on the Neurology journal Web site, www.neurology.org.

Veryblue, This support site is for those with dysautonomia, per the name. POTS is a very common problem for many people with dysautonomia, and this site seems to have evolved into primarily a POTS discussion. Some here have extreme cases of it, some quite mild. But having or not having POTS does not mean dysautonomic problems do not exist. POTS is not one of my main problems, but dysautonomia is. In fact, I rarely have any tachycardia, and when I do, it's quite mild. But I do get a "head rush" and graying out many times upon standing, I do begin to feel faint if on my feet any length of time (especially if standing still), my heart will pound rather than race, I have trouble with dizziness, nausea, trembling and oversensitivity to adrenaline, horrible brain fog, and on and on and on. Some experts believe MVPS, chronic fatigue, fibromyalgia, neurasthenia and POTS are all the same thing, but that it depends on your primary symptoms and the knowledge and specialty area of the diagnosing health practitioner - meaning 5 "experts" can look at the same person with the same set of symptoms, yet each diagnose it differently. As for hope, YES! Cure? Maybe, maybe not. Improvement? Absolutely! It takes a lot of work, and a lot of trial and error, but you CAN feel better and live a relatively normal life. The most important thing I've done for my heart flutters & gurgles & squeezing was take high doses of B6 for a few months. Since then, almost never is that a problem. (The heart is THE most responsive organ to nutritional therapy!) The doctors wanted to make me a lifelong cardiac patient dependent on drugs. The most important thing I've done for my mental outlook, feeling of mental overload, and fatigue is whole food-based magnesium lactate. I don't seem to be able to live a life without it. Research indicates that nearly everyone with dysautonomic trouble is deficient in usable magnesium. The doctors wanted to put me on anti-depressants and anti-anxiety meds (even though I've never been anxious in my life!) that create dependencies and addictions. The most important thing I've done for my inability to regulate body temperature and for chronic dehydration/constant urination is add cell salts to my water for a few months, and I now only use Celtic sea salt instead of table salt, because it retains its natural chemical makeup. Doctors have prescribed their fancy synthetic pills that the body doesn't know how to deal with, so you just end up trading one set of symptoms for another, which leads to a 2nd prescription to counteract the side effects of the first, and on it goes. There are other things, but those above have been huge positives for me. No, it's not been easy. Not everything I've tried has worked for me or worked as well as I would like. And no, I'm not "cured." But I believe without a shadow of a doubt that if I was still listening to and continuing to follow the directions of the many doctors I desperately consulted for so many years, I would be bedridden and probably would have succumbed to at least one nervous breakdown by now. (I was sooo close to that more than once!) I also wouldn't be able to hold down a busy, full-time+ job and teach one night a week and enjoy very structured rehearsal/performance opportunities as I do today. Yes, I mourn the losses of my "previous life," but I am still able to have a life - albeit rather different from what I had planned. You can, too! Just keep researching and trying things, and above all, don't ever give up.

For those of us struggling with dysautonomic conditions, a general multi-vitamin won't even be close to meeting our needs. We have very specific and strong imbalances that should be addressed more closely. Besides - just about anything you buy off the shelf (even at a health food store) is mostly synthetic and of only marginal benefit. A couple of things you may want to consider: Metabolic Typing - you can get the book Metabolic Typing Diet, take the test and follow the recommendations. But for me, this wasn't nearly enough. I enrolled for the highest level of the program, meaning lots of testing done at home then submitted along with a lengthy questionnaire. Your individual body chemistry is studied, then you are given the results and suggestions (30+ pages of info!). They have specifically formulated supplements based on your chemistry. You are assigned to a counselor to help you work into the protocol (yes, over the phone if nobody is in your area). Their entire premise is to balance the autonomic nervous system. This is the best thing I've done for myself. Another really good thing I've done is subscribe to Health Alert newsletter - we've followed this guy's research for more than 12 years because not only does it make such great sense, but he writes so the layman can easily understand. If you go to www.healthalert.com, you can sign up for the publication. Unfortunately, the website used to be soooo much better. (He must have a new marketing person who really stinks.) The site makes it appear he is just like all the other off-beat, non-traditional practitioners who often give out ridiculous information or jump on the bandwagon of every new thing that comes along. But he's MUCH different and MUCH better than any other we've subscribed to. Once you subscribe to his outstanding newsletter (only $40/year), you can contact him about your situation, fill out a questionnaire and complete a couple of simple tests, then get his personal recommendations. He uses mostly Standard Process products, which are top-quality, whole food supplements. Just sharing a couple of ideas for you to look into . . .

Sounds very much like me, except I am ok with eggs. I've used those flours in the past, but many more people than realize it are intolerant of grains of any kind. Now I have very little grain in my diet. I have gone for many years now with a similar diet to yours. How about a breakfast of poached fish filet plus slightly steamed fresh asparagus with a little butter and plenty of Celtic sea salt. This is very quick to prepare - trust me, I'm not a morning person and I immensely dislike cooking, so if I think it's easy, it would be super easy to most others. I also will take a few chunks of stew meat and barely cook it in my infrared oven. I always have burger or turkey patties, sardines, tuna, salmon, and chicken available. I try to make them fresh when I can, but often end up making a bunch and freezing it for later (I don't like to microwave food, as it not only changes the texture but changes the chemical makeup.) A couple of times a month I make a big pot of chicken veggie soup from scratch, and freeze it in portions for one or two. Another good soup is just veggie, of course, but you may need more protein than that, so be sure to supplement with meat of some kind. And faux mashed potatoes (made from cauliflower) is quite good. Once a day, I allow myself a corn or brown rice cake or Nut-Thins crackers with natural almond butter. A couple of times a week I will give in to air-popped corn with real butter and plenty of sea salt. If you are a protein type, this can be a lifelong plan that will make you feel better, not worse. If you are a carb type, this should only be followed for a short time. Just from my own observations, it appears that the majority of us with dysautonomic conditions may be protein types living in a carb world. Once we shift to a more appropriate diet for our body's needs, we do much better. Maybe you'll find that is true for you, but the carb addiction needs to be broken before you can start to improve. I struggled with the "there is nothing for me to eat!" mindset for a while, but the longer I stayed with it, the more options I found.

Interesting. I never thought about the connection with this and dehydration. But when I was so terribly sick for many months running, my "noise allergy" was very strong. Now that my chronic dehydration is much better under control (along with numerous other symptoms), the only noise that still bothers me is when the TV makes that awful static noise, such as when you go to a channel that doesn't exist. Wow - that really gets to me.

Hypoglycemia has been one of my biggest problems - I used to have to eat every 90 minutes, sometimes even more often than that. Every body is different, so what worked for me may not work for you, but within less than a week after making the following changes, I can actually eat just 3 meals and an occasional snack. Being free of the incredible burden of constantly eating makes me feel almost like a normal person again! - always have real butter (preferably raw), olive oil or virgin coconut oil with every meal - eat meat, fish or chicken at every meal - make veggies part of each meal (but only minimal carrots, peas, corn & potatoes) - yes, corn is actually a grain, but most of us think of it as a veggie - absolutely no sugar or caffeine or alcohol What I did was get involved with Metabolic Typing. Thru many at-home tests that I sent to the program headquarters, I was given very individualized suggestions for dietary changes and supplements. It has been the best thing I could have done for myself!

Yes. Mine comes from my adrenaline running rampant, even if I have done nothing to trigger it. It just has a mind of its own. When it gets too annoying, I will take one 10mg dose of my beta-blocker, and within just a few minutes it's gone. I also struggle with restless leg - it's a whole different feeling from the all-over "nervous movement," and it almost always shows up at bedtime. Sometimes (thankfully not very often) it will awaken me in the night. Still don't know what to do about that, but it's from having an out-of-balance body chemistry.

Pamyla, Yes, it is necessary to cleanse/starve out the bad bacteria. But I believe you need to do it at the same time - replenish the good while you are killing off the bad. But you are very right - there's more to it than just taking the probiotic. I have basically lived on a candida diet for a few years (since it's so much the same as the dysautonomia trigger-avoidance list), so I kinda forget that there is that other side that needs to be dealt with. Glad you brought it up!

Primal Defense is from the Garden of Life line of professional-grade, publicly available supplements. They were formulated by Jordan Rubin (and his team) who nearly died of Crohn's but was able to heal completely thru the use of whole foods and supplements. He has written a couple of books, the most recent being The Maker's Diet. Go to http://www.gardenoflifeusa.com/detail_prim...l_defense.shtml to learn much more about Primal Defense and his line of products.

I've also been thru a handful of treatments to kill candida overgrowth - the problem most likely, like pamyla, due to excessive use of antibiotics as a child. Right now, the only thing I am doing for it (besides no sugar/yeast/flour, as always) is taking 6 Primal Defense caplets two times a day. It is making a 10-year, ugly & annoying foot fungus problem go away - woohoo! I'm sure it is having other positive effects in my body, but this situation I can actually watch as it improves.

Hey, Wareagle! You must be in AL . . . ? I moved to AL 9 years ago - I'll never go back to the Midwest! Don't worry about rambling on this site - we all get passionate about our experiences and have to share it, because others don't understand. So go for it. We'll be here to listen. Most doctors will only go so far with their patients, then after their few things don't work, they assume you have a mental problem and begin to blow you off. Sorry, but that's the story more often than not. I don't even go to them anymore - everything I do has been done thru nutritional changes, supplements, etc., plus just plain stubbornness. I feel my mission is to prove the medical world wrong, and actually live a decent life in spite of them. Most days I'm ok enough to appear normal to the outside world, although I have my awful days as well. But I know I'd be MUCH worse off had I not incorporated all the changes and become vigilant about everything I eat, drink and do. I have struggled my whole life with this (turned 43 yesterday) but never knew what it was until about 3 years ago. After 20+ medical practitioners in my adult life and I don't know how many as a child - and getting nowhere with them - I actually stumbled upon the whole dysautonomia thing on my own. So all my research and learning and trial-and-error has been recent. I'd say I've done darned well on my own for such a short time. I don't know where you live, but there is a dr. in Pensacola, FL who has similar health trouble himself and sees a limited number of patients. It's on this site somewhere. I've not been there, but you might want to try him. The biggest thing I can tell you is to become stubborn. There are days when I just want to wallow in my own self-pity, but most days I have a single-mindedness to getting thru the day. I have lost 2 successful careers to this. A couple of times I was sure I would end up on disability. But today I have a full-time office job with leadership roles, plus I teach from home 1 evening a week and play the piano for a wonderful community chorus once a week for 6 months of the year plus performances. No, it's not always easy, and I honestly don't know how I managed to push myself through some months-long bouts of all the horrible symptoms hitting at once. But I don't feel any better being less busy, so I'm gonna go ahead and live my life. I won't give in. Hang in there - learn all you can and start making changes. It will get better.

This is the kind of situation that makes magnesium supplementation very important. When we are stressed, magnesium gets depleted. It is considered that the vast majority of us with dysautonomia are already magnesium deficient, even if blood tests say otherwise. (Blood tests only measure the mag in the bloodstream, not whether or not it is being utilized properly.) Getting the proper form & amount of mag for your body may take a little experimentation, but it can be very well worth it! You can call 800-425-3115 to order the Standard Process brand of Magnesium Lactate - $21, free shipping. I take 1 capsule 3 times a day for maintenance, but when I first started with it I believe I took 2 capsules at breakfast and again at lunch, plus one at night. (Trouble taking pills? Just open the capsule into a little water and drink it down!) You'll know if it's too much if you start getting loose stools or diarrhea - if so, just cut back. This is a professional-grade, whole food supplement, and is the one I get the very best results from. (Man, I oughtta get a kickback from them - I recommend them so often! :-) ) And by all means, don't think you have to do everything on your own! You don't have to prove to anyone how strong you are, especially if you suffer for it in the long run! I'll be sending positive thoughts your way!

Have you tried just plain aspirin (without caffeine)? That's the only thing that makes a difference for me. Usually only one dose, taken at the first sign of discomfort, wipes it out for me - occasionally 2 doses are needed, but that's rare.