opus88

There was also a pretty good layman's explanation for some of this. Not too long ago a post mentioned a link to Chris Caulder's website - you might search for this. I found it very helpful.

How very sweet! Congrats on your anniversary, and many thanks for all you share with us! And yes, I'm stopping to smell the roses right along with you. Cheers!

Ginger, You may have had a very healthy meal in some ways, but where was the protein and/or fat? You didn't mention either of those (beans have protein but also carbs), but maybe they were there. You may be more of a protein person and therefore need a higher level of such. You might want to consider increasing either or both of those things (healthy fats, only!) to help your body deal with the blood sugar plunges. I lived in that space way too long and now don't usually have that trouble as long as I have the protein and fat first, followed by the carb, or a higher level of protein & fat if the carbs will be eaten at the same time. Good luck with your experimenting on these ratios!

Wow - how frustrating that must be for you, Ernie! I'm so sorry your prescription caused that kind of reaction. I would RUN back to that old regimen you had going. Even if it doesn't get you off of the vasodilator, you will still get wonderful benefit in so many other ways. The great thing about the Met Typ work is that they aren't going to tell you to stop taking any meds. They might suggest that after following the program for a while, you reevaluate with your doctor to see if you can cut back or stop. Their aim is to get your body back in balance so it can do what it needs to do on its own. I do still take a beta blocker, but only on a need basis. And that need is pretty rare, but I'm soooo glad I have it at those times when my adrenaline gets out of hand. I keep hoping that someday I won't need that BB any longer. My opinion is that if your body is able to work properly on its own, you may eventually feel worse being on the meds than off. I've never been in your situation, so I don't really know how that works, but it just seems to make sense to me that way.

Ernie, Please don't be disappointed with yourself. You did the very best you could under much less than optimal circumstances. And maybe the fact that you passed out in front of them made them realize you really did have something going on, instead of just writing you off as a "hysteric" like so many of us have. I'm glad the neuro at least asked for info on your condition and said he would research it. He may be very open to learning and could become a big ally. Let's hope! Very best wishes with this new doctor. Stay positive, and keep us in the loop!

OK, gang. As promised, here are some details on what I?ve done nutritionally to give me an almost normal life again. I learned at age 18 that caffeine and I could not share the same body. I ended up in the emergency room in the middle of the night, trembling uncontrollably, heart racing, and very anxious. That was my first bout with ?you just need to relax? and I didn?t appreciate it. I had to learn for myself that caffeine was the culprit, but of course the doctors wouldn?t even think of suggesting or admitting that something I consumed could cause my trouble. Now I use caffeine rarely and only medicinally. A number of years ago, I was lucky enough to see an Amish man who used kinesiology and iridology to guide him to a person?s individual needs. Through him, I began taking hefty doses of GTF Chromium and Vitamin B6. Within 4 days, the incredible heaviness of my limbs had lifted, and after a few months, I only needed to take the chromium in small doses as needed. Within a few months, the B6 got rid of the nearly constant palps, gurgles, skips, etc., that my heart was exhibiting. Both of those were Nature?s Sunshine products ? when I tried to change brands, the symptoms began to return. (Both of those methodologies really do work, but like so many things, the talent & skill of the practitioner can make all the difference.) Someone suggested at one point that I was hypoglycemic, so I started strictly following a no-sugar/no-sweetener diet. After a while (and feeling somewhat better but not better enough), I also cut out fruit and high-carb foods. This helped even more, and I have followed this diet for the past 15 or so years. It?s not the full answer, but certainly a big part of it. Just 3 or 4 years ago, I learned the incredible benefit of magnesium. No form or brand worked for me except the Standard Process brand of magnesium lactate. It was another 4-day turnaround - the panic and anxiety quickly began to disappear, I felt calm and grounded again, my energy level increased, my mental fatigue lifted, my attitude improved tremendously, etc. Magnesium is one of the first things your body depletes when it is stressed - and boy, don't those of us with chronic (and especially unacknowledged) illness know what stress is! I?ve done numerous other things over the past years, but nothing as significant overall as getting involved with the Metabolic Typing Program. At the highest level of testing (something I feel is an absolute must for anyone like us, with far-reaching, numerous symptoms), you perform a battery of tests including blood sugar, blood pressure, temperature, urine and saliva measurements, and a hair sample. These have very specific instructions and timelines. The information is sent to the company, which then analyzes it and comes up with a very large set of recommendations. They consider, for example, your magnesium level, but - more importantly - how it relates to your calcium and potassium and sodium levels, which all must be in balance. It seems incredibly overwhelming at first, but your counselor works with you to adopt the suggestions a little at a time, as you are ready to handle them. S/he also works with you to constantly fine tune your diet and add or stop various whole food supplements that support your system. And there is retesting often, since your body chemistry can change so drastically once you put the proper nutrition into it. I?ve also gone to as much organic food as I can, particularly meat and many veggies. No antibiotics, no hormones, etc. ? just real food that your body knows how to handle. It?s more expensive, but I?d rather put my money there than with doctors and prescriptions! I could go on and on (and certainly will if asked!), but I hope you get my gist on this subject. I?m not better because of doctors and pills, but because I?m giving my body the building blocks it needs to do its job. Whether I?ll ever be totally free of symptoms is somewhat doubtful, but living at my current level of health (after being nearly bedridden) would not have been possible without the nutritional protocols I have been fortunate enough to find and follow. I've been away from it since the hurricane sent our lives into a tailspin, but this weekend I am doing my retesting and should be up and running again by early Feb. I can't wait - I am feeling some very unwelcome effects from my lack of discipline on this. On a previous post, Gena had posted a link to info about the Metabolic Typing book (http://www.metabolictypingdiet.com/index2.html). It?s a GREAT starting point and the book needs to be read and studied, but I don?t believe any of us here could receive enough benefit from the book alone. We are complicated in our needs, and their physical testing is, I feel, absolutely essential in order to make the kind of progress we?re all desperately searching for. You can also check out www.metaboliced.com for more info on the actual program.

Thanks, Gena! I used to take Ambrotose, but could see no improvement after using a number of their products for many months. It wasn't what my body needed. But your explanation helped, since the other sites didn't mention anything about ribose being a glyconutrient. Now it makes better sense to me.

I guess you would need to have tests to determine if such a condition existed. I've been using chiropractic for years. I had never heard of chiari malformation or any other such problems associated with dysautonomia until recently. (In fact, I only learned of dysautonomia about 3 years ago, even though I've dealt with the huge number of symptoms my whole life.) So I guess it's a good thing chiari, etc., wasn't part of my picture. Without chiro, I'd be miserable. My neck and mid-chest area of my spine will not stay in place since ending up with whiplash (car accident) a few years ago. Even before that, I had used chiro as an alternative to the medical world. Have some tests done so you can proceed appropriately.

I don't know exactly what kind of pain you are experiencing, but costal chondritis can become very painful, although not dangerous. It's an inflammation of the cartilage of the ribs, and can make breathing and upper-body movement quite painful. I remember my first (and worst) case of it making it nearly impossible to turn a doorknob without screaming in pain, yet other movements I thought should have been a problem were not. Just plain aspirin worked quite well to lessen the pain until the inflammation finally went away. I have episodes of it from time to time, but none as bad as the first.

Thanks for the link! Very interesting! I did a very quick check because that didn't really tell me what ribose was. This helped a bit: http://www.bodybuilding.com/store/ribose.html Sounds like there is some real promise for FM. Hope we hear more about it soon!

Ahhh . . . the crawling. Actually, YES, it does work. But that's not the only physical activity that will help mental processing. You can "crawl" standing up if your knees argue, or even while seated or lying down. I used to be really involved with a program called Brain Gym. It's fantastic work, and I received so much wonderful benefit from it (during my healthier days) that I even became a consultant and instructor for a few years. I still thoroughly believe in this program. The problem was that as I got physically sicker, the benefits started going away. I could do the activities all day long and still not get anywhere. It took me a long time to figure out that at that point in time, my body chemistry was too screwed up for my brain to process the very simple physical activities. For those who are doing fairly well physically but struggling with mental processes, I cannot recommend this program strongly enough. I basically became ADD thanks to my dysautonomia, but my brain was stronger than ever while practicing the simple Brain Gym activities. Although it's not the optimal way to proceed, you could purchase the Brain Gym Teacher's Edition book that has a thorough explanation of each of the basic activities (I think there are 21) plus illustrations, as well as information on how and why each activity helps you. You can check them out at http://www.braingym.org.

Gena, You go, girl! You absolutely cannot "steal my thunder" since I have no thunder to steal! :-) And your 2 cents is worth a million dollars! Any time anybody can help reinforce the FACT (that's right, gang - it's not just another theory) that our nutrition holds the key to improvement, I'm all for it. So many times I feel like the Lone Ranger on this subject, because the medical world has done such an awesome job of brainwashing our society into believing they know everything about the human body and that they have all the answers in a little pill. But you can't argue with the success of PROPER nutrition - those who have made the effort are always glad they did it! I had not seen that link - thanks for posting it. My only hesitation on that is the test in the book is less than half of what is necessary to really benefit from the program. But reading/studying the book and then, especially for people with multi-faceted symptoms like us, enrolling in the highest level of testing and expert counseling can literally turn our lives around. I promise I will post more details soon.

Hey, All! My time and "energy points" are both running low right now. I will start a new topic within the next day or so on what I've done non-medically to improve my condition, particularly the most important and recent thing that I believe every single one of us would receive incredible benefit from. (No, I'm not selling anything - but as much as I talk about this, I oughtta get a commission!) Keep an eye on the new posts - I'll do my best to fill you in very soon. Amy, I know exactly what you mean about wanting to find the source. I have no problem with running every test in the world in order to figure things out. I've done some testing and then used that info for my own research, ignoring the doctors' recommendations and not going back after receiving the results. It really does help to have as much info as possible. Just remember that science does not know how or what to test or how to interpret the results - but it is many times better than nothing. There is also the psychological benefit of feeling like you are doing something and that you have some kind of control over your situation! Go for it!

Emily, Very best wishes for a routine surgery and incredibly easy recovery. I hope it accomplishes everything you are expecting, and then some!

Amy, It's not specifically from POTS - it can happen with any form of dysautonomia as well as other non-related conditions. It all has to do with body chemistry, which of course is reflected in your brain. If the body isn't working properly, how can we expect the brain to be unaffected? For several years now I've been struggling more often than not with memory, comprehension, focus, etc. (I'm a proofreader and occasional copy editor and copy writer, among other things. I fully understand your concern about the potential ramifications of this condition on our job security!) I've done exactly the same thing as you, thinking somebody borrowed or mistakenly collected something of mine, only to find it later among my own things. And I always feel terribly guilty for thinking someone else was responsible. But this situation of forgetting, misplacing, poor decisions, etc., is just not typical of the real me! My friends used to tell me how smart I was, how full of common sense, how analytical, how organized, how quickly I learned things, etc. But now I feel so #$% stupid that many days I just want to hide from the world because I'm so embarrassed by my inabilities. And I have to work hard to do what used to be automatic, simple tasks. (Yes, including how to set the alarm clock!) Wish I had words of encouragement, but I'm in the same boat. I'm doing something about it, though, beginning in the next few days. I've been away from my strict nutritional protocol for about 4 months, and I'm really feeling it. The plan is to start my Metabolic Typing program's retesting this weekend, and I should have results in 2-3 weeks. At that point I can start a new routine of supplements to put me back on the right track. It's an awesome program that really works, so I'm looking forward to getting back to it. Just wish I could bypass the testing!

I don't mean this to discourage anyone from doing what they feel comfortable doing. But after doctor #22, I gave up on the medical world. And OH MY, was it the right thing to do. The full life I now have could not have happened if I had stuck with the "throw a pill at it" or "it's all in your head" mentalities that so many doctors love to hold onto. (I did, out of desperation, attempt to work with doctors again about 4 years ago, only to have my singing ability ripped away from me and to experience a further exacerbation of my disabling symptoms, thanks to their prescriptions.) I'm not symptom free, and I probably never will be. But by using nutrition as my medicine, I've become a real person again. Just something to consider . . .

Amy, Generally speaking, when a doctor gets angry over "going behind their back" for another opinion, it's because they feel threatened. That means s/he has some control issues and may not be the best doctor for you. People like us can't work with a doctor who isn't open-minded, since our conditions require them to admit they don't know everything, they don't have all the answers easily available, and they may need to learn something new themselves. (Actually, nobody should work with such a doctor.) You do what you feel most comfortable doing, not what somebody else (who only sees you a few minutes every so often) thinks is best for you. Just a note on the 24-hr. urine collection: This test may not actually answer your question of catecholamine levels, etc. By collecting in one container the whole 24 hrs. of output, they are only getting an average rate, so most often those tests come up normal. To be accurate, they should be collected every 2 hours in separate containers, then compared against each other. You could have a huge rise at one point during the day and then a very low reading at another - this can't be detected with the 24-hr. collection. Good luck, and please keep us posted on your experience and results.

Emily, I looked up the Cosy Soles as I sat at work with FREEZING feet. They look terrific, so I ordered a pair. I can even see myself bringing them to work with me (good thing our office is casual!) - we're on carpet but it's over a cement floor, which does keep the floor colder. It says to allow 9 days to deliver, so I'll have to be patient - which is not my strong suit! Thanks so much for mentioning these!

Yep - big problem for me. I thought it was the midwest winters, but I've lived in the South for 9 years now and it's still a problem. Some ideas: * soak your feet in hot water, then immediately put warm socks on (it's even better if they are freshly warm from the dryer or warmed in front of the heater) and then wrap your feet in a blanket or warm boot slippers (I can't survive without my boot slippers! :-)) * do some aerobic exercise if you can to get your overall body temp up * sit with your feet directly in front of the space heater, but beware - it dries your feet out, so you'll want to be sure to use lotion often * Bed, Bath & Beyond has a pair of gel-heated socks - they are white tube socks with a pocket under the sole for a microwave-heatable gel pack. (I received some for Christmas this year.) The warmth lasts longer than most of these types of products. The drawback is that you can't walk on the gel packs, so you have to stay seated or lying down while wearing them. * drink a cup of hot liquid fairly quickly Good luck!

My goodness - how that must have hurt! Glad you fared well in spite of all that happened. Just another story to share: My mother, as a young girl, used to watch her mother iron the clothes. Of course, that was back when you let the iron rest on a heated plate in order to heat the iron. My grandmother would test the iron's readiness by wetting her finger with her tongue, then touching her finger to the iron. Well, my grandmother received a phone call while ironing one day (these were the days of one phone in a house, and certainly not cordless), and my mother thought she'd check the iron just like her mother always did. But she decided to take a shortcut, and stuck her tongue directly on the hot iron! Ouch!

Nutrition can be very complicated. It sounds like you may be getting too many carbs and not enough protein. And low fat is not healthy for anyone - you have to choose the good fats, though, like extra virgin olive oil, real butter (not margarine or spreads), fish or cod liver oil, and organic, virgin coconut oil. All bodies (including brains) NEED fats in order to function! Not everyone does well with raw fruits and veggies - try gently steaming the veggies and cutting back on the fruit. And never start your day without eating protein first. Cut way back on pasta, bread, potatoes and rice. If you do eat those things, make it a small portion with plenty of real butter. New potatoes are better than white, sweet potatoes are even better. Add eggs (don't believe any of that hype about eggs being bad for you - they are one of the healthiest foods available!). And be sure to get plenty of fish, poultry and red meat. Some people are carb types, but that may not be you. Try playing with your ratios of carb to protein to fat. Keep careful track of everything you eat and how you feel about an hour after eating. That will help you know what foods are right for you. Are you sure you are getting enough water? The muscle twitches come from out-of-balance body chemistry. Most often it's an improper level of magnesium or potassium or calcium. But that's a hard one to figure out without doing some ratio testing on those things. Congrats on taking the nutritional aspect of your health to a healthier level. It will be well worth it!

Found on www.care2.com: Antibacterial Room Spray Here is an excellent antiseptic and freshening room spray. It contains lavender and thyme oils, both of which are antiseptic and specifific to lung infections. If you are traveling, you might like to use it in your hotel room. 1. Fill a 2-ounce glass spray bottle with distilled water. 2. Add to it 7 drops of lavender oil and 4 drops of thyme oil. 3. Replace the spray top and spray! Echinacea Echinacea stimulates the immune system and helps the body rid itself of microbial infection. Echinace angustifolia and E. purpurrea are equally effective, and many products contain E. pallida as well. Start taking Echinacea tincture ?30 to 45 drops 3x a day?a week before traveling to obtain ints immune ?enhancing effects. While all treatments work differently, depending on the individual, experience shows that Echinacea can knock out a cold if taken at the onset of symptoms. Astragalus Another effective immune-enhancing formula is a combination of astragalus (Astragalus membranaceus) and Siberian ginseng (Eleutherococcus senticosus) taken as a tincture twice a day, 20 to 30 drops per dose. This formula is appropriate to take daily throughout the cold and flu season. Begin a month prior to travel. Boneset Boneset (Eupatorium perforoliatum) is an immune stimulant that assaults bacteria. In the 1700s and 1800s most U.S. homes in the Northeast had boneset drying from the rafters. It was used effectively to treat a flue epidemic in Pennysylvania in 800. Redroot This effective botanical stimulates and cleanses the lymph system. The lymph system is responsible for processing and cleansing the body of the byproducts of fighting infection. Boneset, Redroot, and Echinachea Make this formula blend yourself by buying single-herb tinctures of each of the three herbs and combine them in a larger jar. Fill a 2-ounce tincture bottle with some of the resulting formula and you?re all set. This remedy is good to take 20 to 30 drops at a time, every hour, at the onset of cold or flu symptoms. Homeopathic Formula A standard remedy for flu is the homeopathic formula Oscillococcinum. Manufactured by Boiron, Oscillo is taken like any other homeopathic remedy?sublingually (allowed to dissolve under the tongue) 30 minutes before or after eating or drinking anything except water. The standard dosage is three vials; each vial contains hundreds of minute pellets. As soon as you feel flu symptoms, take a vial of Oscillo. Repeat with the second vial six hours alter, and with the third six hours after the second. Note from Opus: If you seem to be susceptible to everything, and you have in the past done some long-term or powerful antibiotics, you may need to take probiotics (better yet, eat naturally fermented foods) to replenish the good bacteria in your system. Antibiotics kill both bad and good bacteria, and the bad bacteria grows faster than the good, setting you up for potential problems.

Oh, Tearose, could it be you are finally going to get some real help locally? It sounds like you had a wonderful experience (well, a dysautonomic's version of wonderful as it pertains to doctors, anyway!) and that you will be taken seriously by this guy and maybe even by his colleagues. It must feel so good! Please let us know what they find and recommend.

I can't believe I forgot this one in my previous post. The Count of Monte Cristo (the newer one, maybe 2000 or 2001?) - it would have to be ranked among our very favorites. And when he becomes The Count, ladies, you will certainly appreciate the eye candy (sorry, guys!). I don't usually go gaga over any star in any role, but oh my goodness . . . Also, Ghost and Pretty Woman are really fun to watch if you're looking for something a little less "classic."

Jill, Sooooo glad you felt good about your new doc!!! I hope he will be of great help to you! Please keep us posted on your tests and progress. Looks like there are at least 4 of us from this area. Who would have guessed there'd be a little gang of us in such a small area? Maybe our condition isn't quite so rare after all . . .