opus88

Aw, you guys are great! Thank you for caring!!! And it's good to e-meet you newer forum members! What an incredibly bizarre and devastating year we have endured along the Gulf Coast. In my area, Hurricane Ivan damage is still everywhere, and there is so much construction and reconstruction going on that it's not been the peaceful place we were used to. Cindy blew in a couple of months ago but thankfully was nothing more than a windy storm - we were told we didn't have to evacuate, but to move our cars inland due to expected flooding (which didn't happen). Dennis wobbled around and couldn't make up his mind, looked to be very dangerous and was headed up Mobile Bay, then took a sudden big turn to attack Florida's Panhandle at a reduced windspeed - but he was still quite destructive. Then Katrina rolls in and destroys like nothing any of us have ever seen. It will be many years rebuilding all of those affected areas and those lives. Enough storms already! I know I said this earlier, but please keep praying for everyone affected by this craziness - and continue to do so for as long as you can. Pray for the strength for these people to deal with loss of life, loss of property, loss of livelihood, loss of trust in the world, even loss of a desire to keep living. Yes, there will be a higher rate of suicide and of various forms of violent rage as some people become unable to cope with the new version of their lives. And even though these storms are nobody's fault, some are lashing out because they need to blame someone - anyone - for turning their world upside down. It's so, so sad. Once all the media coverage dies down and Katrina becomes just a memory for most of the world, please remember that for many, the nightmare will continue LONG after the last news crew goes home. Blessings to all of you, and may you always be allowed to take the routine of your life for granted!

Hey, Dysautonomia Gang! It's been a long while since I last posted. Life became waaaay too busy to keep up with the forum. I've thought about you many times, and I'm touched by your concern even after being away so long! (Thanks for the nudge, Poohbear!) Although I've had my ups and downs, my health is hanging in there ok thanks in great part to the Metabolic Typing Program. After evacuating last Sunday and staying with friends about an hour north, we were allowed to move back home yesterday (Sunday). There are piles of plowed sand on either side of the roads that reach probably 12 feet or more. It gets worse as you head even a mile farther west of us - our area took the hardest hit locally, with the most significant damage stretching about 5 miles across. But the destruction this time isn't anything close to that of last fall's Hurricane Ivan. Good thing, since there are still many homes here that haven't even begun restoration or demolition from that storm. Our house did great inside (other than the lingering stench of ruined food from the refrigerator and freezer!). Our under-house storage/workroom is pretty busted up and we lost a little fascia, but our stairs, siding and roof remained intact. There is minimal sand & mud accumulation under the house, even though most of our neighbors had a significant amount. Nearly all of the houses on the beach have sand piled up to within a 3 or 4 feet of the first floor (our houses are all on stilts here). We're quite relieved and grateful that our house came out relatively unscathed. Of course, we have nothing like what Louisiana and Mississippi are dealing with. FEMA is filling up our state park campgrounds with trailers for some of those displaced residents. For the first few days, gas lines were up to a half mile long in 2 directions and police were directing traffic and keeping order. That seems to have calmed down now, even though many stations still have no gas to sell. School here was slated for a post-storm restart Thursday but the gas problem caused them to cancel - things should get back on schedule Tuesday. In the midst of all the chaos, I was offered and on Friday accepted a position at a company only 10 minutes from home. They actually recruited me! After 9.5 years at my current employer, I'm sick of being overworked and underpaid, and I've been feeling pretty burned out. The new job is a position that I get to create as I go along, which will be fun - and I will be supervising 4 full-time and a handful of part-time workers. (I've been a leader many times, but never a "boss"!) I've been assured that their employees very rarely need to work any more than 40 hours/week, and they swear everyone has a one-person workload (I'm currently juggling about a 2.5-person workload). So I'm turning in my notice Tuesday and moving on. It should be good for my physical AND mental health. Please continue to keep everyone in your prayers. Besides the horrible circumstances handed down by Mother Nature, I'm very concerned about so many victims turning this into a race issue. As if that were true! If this doesn't get under control soon, we could end up with another civil war here that would forever change our country, even accomplishing what the terrorists have not been able to do: cause a collapse of our society. Very scary! Anyway, your prayers are soooooo much appreciated. Wishing peace and health for all . . .

My dysautonomia is more like MVPS than POTS. In essence, they are basically the same thing. The difference seems to lie more with your most prevalent symptoms. If the heart-related symptoms are your most pronounced, it is usually labeled MVPS. If your blood pressure is your biggest trouble, it is usually labeled POTS. But both labels likely include problems with heart and blood pressure as well as the huge list of other symptoms. That's not to say that there aren't slight differences, but it seems to depend on the doctor's specialty and/or their awareness of these conditions. If you are diagnosed by a cardiologist, for example, and there is some kind of click or prolapse or regurgitation, it is more likely to be called MVPS. A diagnosis by, say, an internist or vascular specialist, often thru a TTT, will more likely result in a POTS label. As for me, I don't give a rip what anybody calls it. If asked, I refer to mine most often as dysautonomia (who cares what kind!), and secondly as MVPS. And I don't do doctors because they haven't a clue what to do and therefore just pump us full of drugs aimed at symptom relief rather than finding causes. I guess that's a long way around suggesting that you forget about the label and start to work on your body via nutrition. In my non-medical world of treatment, nobody's condition even has a name because individual body chemistry is looked at, not a label. It makes all the difference in the world to feed your body according to its individual needs, not by a one-size-fits-all standard dictated by a medical label. Best wishes for your progress!

Hey, Gang! Just ran across this statement and thought I'd share it. "Dehydration headaches -- Most headaches (estimates range from 50% to 90%) are caused by dehydration, and one of the primary causes of dehydration in the USA is the large quantity of caffeine that most people consume. (Caffeine laden drinks like CocaCola and coffee don't quench your thirst, they actually increase it!)" So maybe that helps to at least partially explain why so many on this site have headache trouble. And just because we drink a ton of water doesn't mean our bodies are hydrated. It could be that you need to add salt (preferably sea salt) directly to your water so that your body can utilize the liquid. I struggled with a situation of drinking up to a gallon of water a day - and I only weigh 95 pounds! - yet still being terribly dehydrated. Turns out my body didn't have a way to grab it and hold on (I believe that was called low specific gravity). Once I added the salts directly to the water, things began to improve in terms of dehydration and also with my high frequency of urination.

Amy, Chocolate has not only sugar, but can also have caffeine and/or another chemical (called theobromine) that is a problem for many of us. So you actually could give yourself a triple whammy with the chocolate candy! I just found this info, as well: "There are several minor psycoactive chemicals in chocolate as well as theobromine: phenylethylamine, theophylline, tele-methylhistamine phenyethylamine, affects mood swings by causing an initial emotional high then a short time later an emotional low. It causes blood pressure and blood-sugar levels to rise, resulting in a feeling of alertness and contentment." Hope you're feeling better now! Everyone, I'm cheering you on. It's amazing how much better you can feel once you get past the withdrawal and temptations. Like so many of you are now finding for yourselves, I lived for a long time in denial about the effect of sugar on my body. It wasn't until being free of it for a few weeks and then eating some again that I realized how awful it made me feel. Go for it - YOU CAN DO IT!!!

Occipital neuralgia could very possibly be relieved thru chiropractic treatments. Be sure to find a thorough, established chiropractor who will give you x-rays before treating you, and then will show you the x-rays and discuss treatment with you. I have a terrific chiro who has been a tremendous help to me with headaches, backaches, shoulder and chest pain and more over the past 7 years or so. He is always honest with me about whether he can address each of my issues and is interested in my overall health progress, not just from a chiropractic viewpoint. Best wishes to you - I hope you can find a chiro as terrific as mine!

Although I've never tried this, I understand that when you are craving sugar, put a pinch of baking soda (non-aluminum) in a little water, swish it around your mouth, then swallow. It also supposedly helps an upset stomach. Good luck to all with breaking the addiction. I did it many years ago, and can't believe how awful I felt all the time (but didn't realize it) while I was eating sugar. Not to mention my many symptoms were sooooo much worse when consuming sugar.

The only hope - and relief - I have found finally came about when I stopped going to and listening to doctors. My improvement has been from diet and whole food supplements (not the junk supplements found at most stores). I was nearly bedridden 3 years or so ago. Although I work hard at it every day, to the outside world it now appears I live a normal life - and I work a full-time-plus job and 2 part-time jobs and I'm now taking a couple of online classes, too. A few things stand out as major factors in my improvement (magnesium lactate, vitamin B6, GTF chromium, and the Metabolic Typing Program), but I know that many natural and/or alternative things have benefitted me in many ways. Keep an open mind. Do your research. Try anything and everything that seems plausible and feels right. Above all, never give up hope.

Hey, Nina! Hope you are making progress and feeling pretty proud of yourself for what you've accomplished. I used to think so clearly and logically, and was a very organized teacher and great multi-tasker. (Yes, Type A personality, too!) But lately my brain has been inaccessible, making motivation an unknown concept. And I can't prove to anyone that I'm not stupid - not even myself! I just want to hide from the world because I am sooooo embarrassed by how stupid I feel and act. But the past few weeks I've been seeing a big improvement. I'm not "there" yet, but I'm on a good path. I can't tell you exactly which thing is responsible for the progress, but I'm back on the Metabolic Typing program. I have been taking amino acids and essential fatty acids for almost a month now, eating more fatty fish than before, etc., according to the plan made specifically for my body chemistry. Something is kicking in. My motivation is returning, I'm once again connecting pieces of information stored in my brain, and I don't feel like I'm going thru every day like a zombie. Woohoo! Good luck with your papers. Let us know how they turn out!

Yuck! Maybe you need to have someone come to your house to clean out all of your duct work. It may kick up more trouble for a couple of days, but if you have the work done and then run air purifiers, it should clear out fairly quickly. Also, could there be any mold in your house - behind walls or other unseen areas? By closing your house up to run the air, it could be trapping the allergens inside and giving a concentrated effect. Good luck - do let us know what you discover!

I do know they are the same thing, just the generic vs. real name - I was merely giving the actual name on the bottle. :-) It was about 16 years ago when I took a BB on a regular basis, so I have little memory of the names of them. They tried me on 3 or 4 different ones for maybe only a couple of weeks each - Inderol is the only one that seems familiar from that time - but they all made me feel worse so I told the doctor I wouldn't take them any longer. As long as I take mine as need only, I don't get the side effects. (I never have to take more than one dose when I do need it, and I've improved so much over the past 3 years that I rarely use it.)

Ling, Something to try that I think could be of great help to you with your blood sugar difficulty. For the next week, eat ONLY the following: -- meat of all kinds, fish (fatty is better, such as salmon, mackerel, etc.), dark meat of poultry, eggs, cheese -- lightly steamed GREEN veggies such as green beans, asparagus or spinach - but NOT peas or lima beans -- real butter or extra virgin olive oil or virgin coconut oil -- avocados, black olives -- almonds, pecans and cashews (whole or as a nut butters) -- purified water -- very small amounts of oatmeal or 1 slice of whole grain bread per day -- Celtic or Himalayan sea salt instead of regular table salt You can have as much of these foods (except the oatmeal or bread) as you wish, as many times as you wish. After one week, you may feel so much better that you will never want to eat anything else. I went from years of having to eat every 90 minutes (to keep my blood sugar up) to eating only 3 meals a day - and that shift happened within a 24-hour period. It was absolutely amazing! I now feel sooooo much better in terms of fatigue, motivation, thinking, adrenaline rushes and more!

Good suggestions above. I am not yet in menopause, so I'll just chime in on the magnesium. It has been a godsend to me, bringing very fast and major improvement in my fatigue, mental outlook, anxiety, ability to think and more. However, different forms of magnesium are available and sometimes it takes a little trial and error to find the right one. If you try the Natural Calm mentioned by Earth Mother and have intestinal trouble (it tore me up!), try the Standard Process brand of Magnesium Lactate - the lactate form did not give me any of the problems that I had from other forms. I also seem to do ok with the orotate form, but the results aren't as dramatic for me.

I only take a BB (propranolol) on a need basis for adrenaline rushes ("autonomic storms" as some call them). I take just one 10 mg dose and it works wonders. It's the only prescription I use. Many years ago I took a BB (don't remember which one for sure, but I think it was Inderol) twice a day but it just made me feel even more tired and did nothing for the heart-related symptoms - a few months of hefty Vitamin B6 finally did the trick for the palps, gurgles, etc.

Hey, Emily! A BIG welcome back! Even though you aren't quite yourself yet, just showing up here is evidence of wonderful progress. I continue to send you positive energy, and hope that this is just the beginning of a huge upswing as you return to being yourself again. Don't overdo it, but we all will be looking forward to your next update.

I did a very strong candida treatment for 4 months with an MD who once scoffed at such an idea. After working in a clinic with another doctor who opened his eyes to candidiasis, this guy completely gave up his "regular" practice and became an expert on candida and various detox-type treatments. He had a 98% success rate. Unfortunately, I was one of the 2% he didn't "cure" but I learned a lot in the process. Looking back, I can now say that the candida treatment did help in some ways, but not in ways I was looking for. Candidiasis, I believe, can be an entirely separate problem for us - or at least that seems to be my experience. We could have both conditions working against us rather than one causing the other. At the time I didn't know about my dysautonomia. But that diet I had to follow was really good for me in many ways. I guess it was kind of a precursor to the metabolic typing diet I now follow. I do believe that candida is a huge problem in our society, due to consuming so much junk food. Michelle's thought on the allergies after candida treatment seems quite plausible. Perhaps the treatment in the S. Am. study wasn't as complete as it should have been. In any case, I think it's worth further investigation. And always there is the question of which practitioner, which brand and combination of supplements, how strict the dietary recommendations, how closely the protocol was followed by the patients, etc., etc., etc. The whole question of what does what to us is so very complicated and interesting. Maybe someday there will be better answers.

Just some info to consider: Maltitol is a sugar alcohol. The body doesn't recognize the carbs in a sugar alcohol and so it passes, undigested, to the lower intestine, where, natural bacteria finds it and can break loose a not-so-pleasant reaction. Histopathological changes have been observed in the adrenal gland after a 2-year study of maltitol, as well as increased incidences of both benign and malignant phaeochromocytomas and an increased frequency of slight to moderate adrenal medullary hyperplasia. Splenda is involved in a huge legal battle - they have purposely misled the public into believing it was sugar and/or natural. Sucralose is produced by chlorinating sugar (sucrose). This involves chemically changing the structure of the sugar molecules, resulting in neurological symptoms, shrunken thymus glands (up to 40% shrinkage), enlarged liver and kidneys, and more. Sugar cravings happen because our white sugar is so processed that it does not retain its natural properties. When you crave sugar, you are actually craving the missing properties of the real sugar - but your body doesn't tell you that it's those missing qualities it lacks, so you eat more processed junk trying to fill that need. It's a vicious circle that requires a dedicated, conscious effort to break.

Mary, The book Protein Power gives much great info about your question. It's only about $8 and might be very helpful to you. I've only read a couple of chapters so far but I think it's a relatively easy-to-understand resource. I'm one of those who cannot handle any sugar or any stimulant (including spicy stuff), and I even have to be very careful on the amount of "good" carbs I eat. Those things set off heart/pulse trouble, or cause highs followed by big crashes, or even change my personality into that of a terrible b****. It's incredible what kind of trouble even a tiny amount causes me, so cheating isn't an option. I did not believe that it had such an effect on me at first, but after being completely free of those things for a while and feeling so much better, and then cheating and experiencing how crummy it made me feel, I realized that I had been in denial. I really thought I felt ok before and could handle the sugars until I lived without it. At that point, I learned how awful I had felt all along but couldn't identify it as such.

After 20+ doctors and many of them telling me I was "just anxious" (which at that time I had NEVER experienced or exhibited such a characteristic), I walked away from the medical world. Nearly everything I've done since then has been based on nutrition - first with diet, and second with ever-changing supplement protocols. But before I could make that switch, I did have a few bouts with true anxiety and also with panic attacks. Let me just say that those have been possibly the most awful symptoms I could ever experience - I would never downplay what someone goes through if either of these is part of their life. It's very real, and doctors need to stop using either or both of those as an uneducated throwaway diagnosis and start treating the condition for what it is - a chemical imbalance that CAN be corrected. The biggest thing I've learned from all of my "alternative" work is that our bodies fully rely on what we put into it. If we - either by genetic weakness or thru individually inappropriate dietary choices - are deficient or overabundant in a vitamin, mineral, etc., it throws our body's chemistry out of balance. When the body chemistry is no longer able to compensate, we become chronically ill. And of course, the body chemistry and the brain chemistry cannot be separated. So while any form of stress - physical, psychological or any other - can exacerbate symptoms of any kind in any disease or condition, our minds are not creating these symptoms or conditions. Our minds are merely reflecting the imbalances in our bodies and perhaps even alerting us to potentially extreme problems with our bodies.

Gena, I'm so very sorry to hear this - and I'm sorry I didn't realize it was this bad for you right now. It's incredibly frustrating and disheartening to feel like you are doing pretty well, then have the rug pulled out from under you. With everything going on in your life I guess it's easy to see where your stress is coming from, but knowing how best to deal with it isn't so easy. By all means, go after anything that has helped you in the past. Make yourself a priority and then you will be better able to either help those whose needs are pulling on you and to comfortably set your boundaries wherever they need to be set. You know where to find me if you need to talk . . . hang in there, and take a moment to absorb the positive energy we are all sending your way.

How about an extra on shows like Crossing Jordan, CSI, etc. - they always need actors to play the dead people. Sounds perfect to me! Oh, how still we can lie . . . (And trust me - the editing job isn't so perfect if your dysautonomia affects your ability to think! I did it full-time for 2 years and have done it part-time for nearly 15. There are days when I can barely spell my own name!)

Yippee!!! What a thrill that must have been for you to feel that way again. I know how excited I was when I could finally clean my own house again - nothing near as fun as what you experienced. Any time we can see or feel something positive, it's definitely worth sharing. Thanks for letting us in on your success!

I've been wondering, too. Hope all's well!

Excellent suggestions above. Some more ideas: At the end of your shower, turn the water to cold and run it on your lower legs. Some say that this helps restore the circulation and raise the BP. I've also run it over my head and it seems to help a bit. My anxiety, mental fatigue, physical fatigue and more were helped tremendously when I started taking the Standard Process brand of Magnesium Lactate. Other brainds and forms did not do anything for me. It may take some trial and error to find the right form or brand for you, but it would be worth an attempt. I took 3 times the recommended amount for a while, then tapered down to the regular dose. Also, if you haven't already, cut out ALL sugars and sweeteners, caffeine, nicotine, alcohol, and foods higher in carbs, such as breads, potatoes, corn, grapes, etc. These all contribute to the hyperadrenergic situation. Concentrate on protein and good fats instead, and eat the protein and fat before eating carbs. I also had to give up 2 very promising careers due to dysautonomia, so I understand what you are feeling. About 3-4 years ago I was just this side of bedridden, but I now have a full life again, albeit not completely symptom-free. It can be done - don't ever give up hope or stop working on it! I hope you begin feeling better very soon.

Vitamin C is also supposed to help with bruising.