opus88

My dysautonomia is MVPS, although I do have occasional struggles with POTS-type symptoms, too. I'm much better now than I was 3 years ago - I was about as close to being bedridden as one can be without actually being stuck in bed. I had horrible intolerance of being upright, but sitting was not as bad as standing. I would always have a head rush/graying out upon standing even from a sitting position. My blood pressure sits about mid-90s over mid- to upper-60s. I feel a whole lot better if at least one leg is somewhat elevated, so I'm thankful that I can prop my feet on my computer at work. I have experienced all of the same symptoms as you, plus about 20 more that you did not mention. They will still appear and seem to go in spurts, but I've done quite well since early summer or so, with periods of doing well for the previous year or so. The reappearances are generally quite mild and short-lived compared to when all the symptoms acted up at the same time and were very pronounced. I only take 10mg of propranolol on a need basis - otherwise I'm prescription-free and "treat" myself via nutrition. But had you asked me 3 years ago, I would have said I was on a long, slow road to the afterlife rather than a road to recovery!

I was wondering if anyone could share their experience (or that of a family member of close friend) with corrective vision surgery. I am toying with just going for a consultation to improve my worsening eyesight, but naturally I'm concerned about possible complications. Does dysautonomia in any way make this a more complicated or dangerous procedure, or any less effective? My symptoms include dry mouth and eyes. Could that pose a problem with this type of surgery? I'd love to hear any feedback. Thanks!

Well done! How lucky you are to have a doctor who will actually accept that a patient might have answers that s/he is missing. Sounds like you are on the right track now. Good luck with your tests, and do let us know how things progress!

Eillyre, I don't blame you a bit or think it was odd to run away from that chance meeting. I used to be very outgoing and would go up to people all the time to chat for whatever reason. Since my illness took over full-time, I now run the other way when I see someone, and I don't even answer the phone anymore. As far as telling people about your life, you will know when you feel comfortable with that. I know I'm coming at it from a different direction than you are, but I'm actually quite open about it. I didn't really realize how sick I'd been most of my life - I thought it was just normal, because until adulthood it only came in waves. But when I stumbled upon "dysautonomia" just a few years ago and realized that was why I had become nearly bedridden, I wanted to shout it from the rooftops. I finally had a REASON for acting so strangely, and for having been forced to give up my full- and part-time careers as a school teacher, as a conductor, as a workshop leader, as a singer and as a performer. It was a freedom for me to learn there was something truly wrong (as I'd always believed) and not just some "hysteria" or some such label that most of the medical world wanted to put on my situation. Also, I very much understand your feelings about being on the road to success as a performer and then having it ripped away. My health has become strong enough that I can again perform, but in a limited fashion and only as a pianist. I have had to accept that I will never be a leader or singer again, and that music that used to be so easy for me now must be practiced over and over and over - and I still can't promise I won't screw it up. This has taken a huge toll on my confidence and self-esteem. But my life is what it is, and I refuse to give up. I just have to accept that it's different and go on from there. Perhaps you will find another way to be involved with dancing. I know this may not sound at all enticing right now, but you may someday find yourself working behind the scenes for performances or maybe at an arts school. I never would have believed I'd be involved with computers - my whole life was about music. I barely knew how to turn on a computer 10 years ago, but now I am the head of technology at my workplace. And as I was leaving teaching, I started freelancing as a proofreader, which landed me 2 full-time positions after that. There is always a new avenue to pursue when the time is right. Keep yourself open to new possibilities! Until then, don't feel bad about doing what you feel you need to do. There is a time and a place for everything. You'll know when you are ready to tell others about your situation, and you'll find another avenue to pursue, maybe related to dancing and maybe not, but it will be something that you may not realize you have an aptitude for right now. And that will be exciting for you. Wishing you the very best!!!

Morgan, I'm holding positive thoughts and prayers for your friend, for his family and friends, and for you. Always remember the good things about him and the fun experiences you shared. He'll know, at this time and in his new life, that you are thinking of him and smiling . . . what better legacy for someone to leave you with.

Hey, Tearose, I hear ya. Feel good, do more than you normally can do, pay for it later. It happens, because we want to be normal. And those little glimpses of normal are such seductive sirens. Don't beat yourself up! Experience teaches us what we need to know, and unlike us, it never gets impatient. It will just keep repeating and repeating the lesson until we get it. Until then, wishing you quick improvement and a great holiday season in spite of it all.

Corina, I understand what you mean about feeling dumb. I was always told how smart I was, but I just figured most everybody was like me. I am - or rather, was - very left-brained for most things, but now I feel like I can't find either side of my brain. I can't access info I should know, and often I can't remember having experienced various things. I can't begin to describe what this has done to my self-esteem and confidence! However, brain power goes along with physical health. If I am feeling well, my brain is better able to function. If I feel ill, my brain doesn't connect at all. Mental fatigue is a huge problem for those of us with dysautonomia. It affects reflexes, communication skills, patience level, tenacity and much more. Thankfully, because I have ignored medical protocol and done nearly everything based on nutrition, I have improved tremendously from where I was 3 years ago. I have days and sometimes a few weeks at a time when I can think clearly, enjoy puzzles and problem-solving and other thinking tasks, feel motivated to do things, and appear to be "normal" in most ways. I'm still not consistent nor symptom-free, but I've been off the nutritional supplements for 3 months now - it's time to start up again. Anyway, I do understand the inability to make your brain work. You are NOT dumb, just temporarily disconnected. Keep repeating to yourself how smart you are - don't let your current attitude replace who you really are. Hang in there, and keep working on your health - your body chemistry balance is reflected in your brain!

Found this today, thought I'd pass it along. It's part of an article found at the link about halfway down: - - - - - - - - - - - - - - - - - - - - - - - - - - - - - Special Test Needed For Vitamin B12 Deficiency Getting tested for vitamin B12 deficiency is extremely important; however, scientists have indicated that the standard test -- measuring blood levels -- may not be sensitive enough to detect a deficiency. Due to this insensitivity, scientists have discovered an alternative way to detect vitamin B12 deficiency. It seems that elevated levels of the body's natural compound, methylmalonic acid (MMA), indicate low levels of vitamin B12. Low vitamin B12 levels have been linked to several neurological conditions, such as: ? Dementia ? Spinal cord disease ? Peripheral neuropathy While vitamin B12 deficiency is most commonly found in the elderly, it can affect people of all ages. Other high-risk groups include: ? Vegetarians and their newborns ? Those who have undergone stomach stapling bariatric surgery ? Those exposed to laughing gas anesthesia or nitrous oxide Nitrous oxide, a general anesthetic commonly used in dental offices and hospital operating rooms, can inhibit the action of B12 when tissue stores are low. This has become a major health problem particularly for the elderly undergoing surgery that have been either undiagnosed or untreated for a deficiency. For this reason, doctors are strongly encouraged to check for vitamin B12 deficiency by measuring both vitamin B12 as well as MMA in patients prior to surgery. Another problem that stems from nitrous oxide: Nitrous oxide abuse. This remains a concern among certain medical personnel, teenagers and young adults who use it for its euphoric effects. Such abuse can lead to severe neurological damage to the spinal cord or peripheral nerves. - - - - Multiple sclerosis can be difficult to distinguish from B12 deficiency, cautioned a companion piece also presented at the conference. Saint Louis University researchers Chitharanjan Rao, M.D., neurology resident, John Selhorst, M.D., chair of neurology, and Thomas found that patients with either condition can have pain, problems with vision and gait and similar MRIs. The potential confusion makes careful search for B12 deficiency even more critical, Thomas says, since B12 deficiency can easily be reversed, while multiple sclerosis may be a life-long disease. Thomas and Kinsella urge doctors to more rigorously check for B12 deficiency by measuring both serum B12 and MMA in patients before surgery and to test patients who are over 65 for the problem every two years. Nitrous oxide abuse resulting in B12 deficiency should be considered especially in younger adults presenting with unusual neurological conditions. Science Daily November 5, 2004 - - - - - - - - - - - - - - - - Dr. Mercola's Comment: About 40 percent of the United States population is deficient in B12. With such an enormous number of people suffering from this deficiency, I have made special efforts to research information on this incredibly common condition. For those of you who are suffering from vitamin B12 deficiency, it is important to know that most oral vitamin B12 supplements do not work well at all. Vitamin B12 is the largest vitamin known; it is a very large molecule, and it is not easily absorbed. Your body has developed a very sophisticated system to absorb B12, which involves the production of intrinsic factor in the stomach that attaches to the B12 and allows it to be absorbed in the end of the small intestine. If your stomach lining is damaged from an ulcer or a Helicobacter infection, you will not produce intrinsic factor very well, and you will not be able to absorb B12 very well, if at all. An imbalance of bacteria in the small intestine can also produce impaired absorption, as would removal of a portion of the small intestine (commonly done in Crohn's disease). Vitamin B12 deficiency is quite common in vegetarian and vegans who do not supplement with B12 or use fortified foods, since B12 is not readily available, if available at all, in plants. If you are a vegetarian who eats eggs or fish, the risk for B12 deficiency is considerably reduced, though you should still consider B12 supplementation. If you are a vegan avoiding all animal products, and you do not already supplement with B12 (it seems many already do), you should seriously consider it. So, if you suspect you are deficient in vitamin B12, I would encourage you to obtain your B12 in a more absorbable form. The common recommendation is to use injections. My recommendation for that would be to use 1 ml once a day for two weeks and then three times a week until the 30-ml bottle is finished. An alternative to the injections would be to use DMSO and vitamin B12. The DMSO causes the B12 to be absorbed very similarly to an injection without the cost or pain of a needle. Intranasal B12 is also available, but unless you have a prescription card I would not recommend it, as it is VERY expensive. One strong inhibitor of vitamin B12 absorption is the very popular drug Prilosec, which has been clearly shown to decrease B12 absorption.

There is another kind of support pillow - don't know the name, sorry. It has squared edges instead of the gradual edges of a regular pillow or that sculpted bump like the typical support pillow. This one also has a "lip" in the center that sticks out in front. If you sleep on your side, you use the right or left squared edge, and if you sleep on your back you use the lip under your neck. It's kinda strange-looking and takes a few nights to get used to it (it barely fits in a regular pillowcase but works better with a king-size pillowcase). It is the only one authorized by some chiropractic association as being truly worthwhile - sorry, I don't remember those details now. You need to check for the correct size by measuring from your neck to the outside of your shoulder, and then double check by lying on it on your side to be sure the height is right for you. I've had mine for about 4 years now and it does seem to help a bit.

The migraines, anxiety and constipation might all be helped immensely with magnesium. There are different forms, but the only one I had true and quick improvement from was the Standard Process brand of Magnesium Lactate. Other forms created terrible intestinal trouble and/or never made a difference in how I felt. Some chiropractor offices carry Standard Process products, so you might call around to see if someone in your area has the Mag Lac available. (You cannot get this brand at a store.) I would suggest starting with 1 capsule a day, then after 2 or 3 days bump it to 1 morning and 1 evening, then a few days later go to 1 capsule 3 times a day (1 with meals makes it easy to remember). My dosage started at 6/day for a couple of weeks, then 3/day. Within 4 days I already had a much improved mental outlook/less anxiety, and the fatigue had noticeable decreased. (Migraines have never been a problem for me, but I know magnesium is commonly used for such trouble.) Should the dosage be too high, there will be a softening of the stool or a touch of diarrhea, but that can easily be solved by cutting back on the dose. Best wishes!

Thanks, all, for sharing in my enthusiasm. It's sooooo wonderful to know people are cheering me on in this huge endeavor! The excitement is certainly there, motivating both of us to get things organized quickly. But I'm pushing extra hard to finish the big stuff because I'm throwing my hubby a surprise birthday party at our house Saturday. Oh, such bad timing! I just couldn't ignore this one, since he turns 60 next week! It's been a trick to get some things done without making him suspicious, but so far I think/hope he has no clue. He may hit the ceiling, though, when they come to deliver the gravel for the driveway Friday. That was gonna be put off for a while. Oh well . . . it will be worth it. :-)

Tearose, I'm not sure I can teach anything about the tossing-out process, but I'll tell you my situation which caused the action. 1) The water-damaged areas required thorough cleaning of all possessions nearby. 2) The drywall process left such an incredible mess ("mud" and dust) that everything in cabinets and behind closed doors was covered with thick dust - and then stuck on due to humidity. 3) Since everything in our house has been replaced (flooring, ceilings, all walls painted, countertops, window dressings, etc.), much of the old stuff doesn't match anymore. It was just easier to toss stuff than clean things that I knew would never look good again. I've amazed myself at my sense of detachment, since I do tend to hold onto things "just in case I need it next month or next year." Without those 3 things, I don't know that I'd have gone to such lengths (and still am) to clear stuff out. But in the process of cleaning, some stuff naturally was ruined - out it went. Stuff that was in bad shape to begin with wasn't even worth cleaning, so out it went. Each item in a drawer had to be pulled out and cleaned (including the drawer), which means it got sorted. If I hadn't used it in the past year, it got tossed. Pan lids with no pans, Tupperware bowls with no lids, wok utensils (I no longer have a wok) . . . all were tossed out. Clothes that didn't fit properly (unfortunately, too many!) or don't match anything else were tossed, and socks that don't stay up or had holes went in the trash, too. Ratty old blankets and flattened or horribly stained pillows were trashed. And so on. I just set my mind to it, and I made quick decisions rather than think about who gave it to me or how long I'd had it. My suggestion: Don't let it get as bad as I did so that it takes a hurricane to do something about it. Take just one drawer one day. Maybe one cupboard next week. The floor of the closet a few days later. And so on. But if you feel well enough and motivated, capitalize on it at the moment - you will probably find that the motivation feeds on itself because there is such a sense of accomplishment and pride in getting one area done. And it's strange, but there is a positive mental component to getting that done - like a clearing of the mind as well as the house. Ahhh . . .

I certainly understand the pride you felt in having your own place. My first place was a horrible little thing, but I loved it because of what it represented. Just keep reminding yourself that this is only temporary, and your next place will be just as special. Don't push yourself too much as you go through the transition. And continually look for the opportunities this will afford you. Every experience can be positive in some way if you are open to that idea.

There is a self-propelled vacuum called Roomba. It's a great idea, but I've never had any experience with one. I'd love to know if it really does a good job or not. I did have to hire a cleaning service for a while, but can now do my own house cleaning again. Not that I enjoy doing it, but I am thrilled to have returned to a much more "normal" life again. I will not be without a DustBuster-type of product. Just go after the big stuff and let the rest go. Is it possible to contact a church or a senior volunteer organization to ask for help with house cleaning? Many such groups are looking for ways to assist those in their communities. House cleaning is one of those things that many people are very happy to do, particularly when the need is health-related.

I only take the beta-blocker on a need basis, which is actually fairly rare. If I start to become bothered by the rushing adrenaline, I will take one dose - 10mg propranolol - and it does the trick. For me, being on a beta-blocker regularly created such fatigue that it wasn't worth it. (My BP is always low, so that is likely part of the problem.) Perhaps Nicole could try taking hers only when she feels adrenally. Just a thought . . . Very glad she is making some progress - what a relief! I hope that continues!

Congrats on making it through and being able to laugh at yourself and each other. What a great way to celebrate! Thanks for sharing your laughter with us!

Hi, Gang! Just wanted to share my excitement of moving back into our house. It was exactly 3 months from our last night in the house to our first night returning there. Hurricane Ivan uprooted our lives for a while and will still affect us as we pursue insurance matters, exterior reconstruction, etc. But we're HOME! I dropped into mild insomnia the middle of last week, making me very tired of course, as well as lightheaded. The adrenaline rushes turned into numerous (but thankfully small) panic attacks which forced me to take my beta-blocker for the first time in a long time - but just one dose brought things back under control again. I am again having back trouble but I'm sure the activity of cleaning the house, moving, and cleaning the rented condo have been the culprit there. Other symptoms have been popping up since the insomnia began, but nothing huge. I'm very encouraged to have made it through so much stress with so little health trouble! Everything has a positive side if you're willing to look for it. I would have never, ever wished for any of these hurricanes to happen. But for my husband and me, Ivan has given us a superficial opportunity to not only update the look of the house (really needed it) but also a deeper opportunity to sort through our stuff and toss so much unneeded clutter. It feels incredibly good to truly "clean house", but I just didn't have any motivation for it until the hurricane forced the issue. I'm glad for that still-unfinished adventure - I am learning how that clutter was affecting my life, even though I thought it was all "hidden". Please continue to keep all victims of natural disasters in your prayers - there are still so many who have lost so much (homes, jobs, treasured possessions, sense of security, etc.) yet recuperation has only barely begun. To those who have donated items or money to relief funds: Unless you are on the receiving end of such generosity, you may never know how deeply you have touched someone's life, or the tears of joy you have brought by your caring and generosity. Please trust me when I say your efforts are deeply appreciated! So, I'm flying high to be back in my own home again (yes, after the help and kindness of many strangers), especially just in time for the holidays. What a wonderful Christmas present this is! Thank you all for your support during this time!

Got mine yesterday. I love that I can squeeze it to better fit my wrist. Big thanks!!!

Wow - how interesting! That explains my husband's situation. He rarely gets more than 5 hours of sleep, and is a carbohydrate junkie - candy, cookies, cake, sweet cereal. He does great with healthy eating all day until after dinner, then garboons on all the bad stuff. He's not overweight at all and is a very dedicated fitness guy, but the rest seems to describe him. Can't wait to share that info with him. Thanks for posting this!

I LOVE pumpkin pie but can't do sugar or sugar substitutes, milk products (butter & eggs are ok) or gluten. www.glutenfreemall.com might be a starting place for mixes and prepared foods. The nut crust sounds quite good, but wow - lots of sweet stuff in it that would have me passed out on the floor and reeling for days. And the corn flake crust also has the sugar as well as high carbs of corn that, added to the pumpkin, would put me over the edge. Rice flour or garbanzo flour can be used instead of regular (wheat) flour. Maybe even buckwheat for a very different taste. You can bake and season your own pumpkin, or there are companies that make canned pumpkin with only pumpkin or just cinnamon or other seasonings without sugars. I've occasionally had the canned pumpkin with just some butter and a little cinnamon for a treat. I buy tiny boxes of coconut cream and dilute it with 3x as much purified water to make about a quart of milk. Imagine the coconut cream or milk with the pumpkin pie - it sounds like it might be really good - I'm gonna have to try that, maybe even as a pudding! Emily - A health food grocery store (not just a supplements store) will be a wealth of info for you. Start asking around for directions to one in your area.

Big thanks to all who were involved in getting this off the ground. I just ordered my bracelet, and can't wait to receive it!

How awful! As was already mentioned, taking it to the media would be a great thing to do. And free! So sorry this had to happen. I guess there is no end to ignorance or insensitivity . . .

A hair analysis can be used for mercury. My thought is that rather than face the potential increase of Nicole's illness with that test, why not proceed with the detox per Gena's info above? Or maybe start with chlorella or activated charcoal to begin a gentle detox. Chelation therapy is also supposed to be excellent for heavy metals, if I remember correctly. Even if mercury is not an issue, the detox could help with other toxicities (yes, we all have them!). Great news on her desire to fend for herself a bit and that she has some appetite. That's a huge step in the right direction, and I certainly hope it continues!

Way to go, Emily! Sometimes we just have to prove that we can push ourselves a little and still be relatively ok. What an exciting evening that must have been for you! I do get the full body trembling when over stimulated, and so often it is accompanied by feeling like I'm gonna freeze, so I don't know if my body's thermostat gives out first and creates the shaking or the other way around. When that becomes too strong I take one dose (10 mg) of my beta blocker (propranolol) and within 15 minutes or so I'm ok again. Anyway, I'm thrilled for you - and I'll bet it will leave you riding on an emotional high for a while, which may soften the crash. Let us know how your recuperation goes!

It's a horrible situation, but it sounds like you did incredibly well. I'm so happy that you and your family have some closure, and I hope you can all begin the process of healing emotionally from the ordeal.