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  1. http://www.ncbi.nlm.nih.gov/pubmed/17662618 NOTE finding of significance: "The odds of having GWIs increased by 1.3% for every PB pill taken (95% confidence interval 1.001-1.02). There were significant trends toward worse health with greater intake of PB." In a recent Washington Post article (explaining why soldiers were given the Mestinon); the question is what is causing the abnormal brain scans the chemical exposure and/or the effects of the PB: Gulf War veterans show abnormalities in scans of their brainsBy Sara Reardon, Published: March 25 | Updated: Tuesday, March 26, 6:02 PMWhen she returned from the Persian Gulf War in 1991, Air Force nurse Denise Nichols experienced sudden aches, fatigue and cognitive problems, but she had no idea what was causing them. They grew worse: Even helping her daughter with multiplication tables became difficult, she says, and eventually she had to quit her job. Nichols wasn’t alone. About a third of Gulf War veterans — possibly as many as 250,000 Americans — returned with similar symptoms. Now an imaging study has found that these veterans have what appear to be unique structural changes in the wiring of their brains. This fits with the scientific consensusthat Gulf War Syndrome, or GWS, is a physical condition rather than a psychosomatic one and should be treated with painkilling drugs instead of counseling. Military authorities in various countries consistently denied in the past that there was a physical basis to GWS. Although the Department of Veterans Affairs now accepts that the disorder is physical, the issue has been mired in controversy. Steven Coughlin, a former senior epidemiologist at Veterans Affairs, testified this month before a congressional panel that the VA had suppressed and manipulated research data so as to suggest that the disorder was psychosomatic. Coughlin told the panel: “If the studies produce results that do not support the [VA’s] unwritten policy, they do not release them. . . . On the rare occasions when embarrassing study results are released, data are manipulated to make them unintelligible. . . . Anything that supports the position that Gulf War illness is a neurological condition is unlikely to ever be published.” In response, the VA said that the organization has a “long history of conducting world-class research studies that meet accepted and rigorous scientific standards.” They also note that “all allegations of malfeasance are taken seriously and are investigated fully.” Causes still sought Whatever the cause of GWS, it is certainly not psychological, says Bernard Rosof of Huntington Hospital in New York, although no single cause is known. Suggested causes include exposure to low levels of sarin gaswhen chemical munitions were destroyed, and a drug called pyridostigmine bromide, which soldiers were given to protect them from sarin. It’s vital to find an objective test that will allow physicians to make a diagnosis, says James Baraniuk, an associate professor at Georgetown University Medical Center and one of the co-authors of the new imaging study. To that end, Baraniuk and Georgetown colleague Rakib Rayhan examined 31 veterans with GWS, including Nichols. They scanned their brains using a technique called diffusion tensor imaging, which highlights the bundles of nerves, or white matter, connecting brain regions. They compared these to scans of 20 veterans who were not deployed in the Gulf. The images indicate that in GWS, these nerve bundles break down and may have trouble forming connections, a phenomenon that has not been associated with any other illness. This suggests that the brain circuitry, rather than any specific brain area, is disrupted in people with the condition. Veterans with the worst symptoms tended to have the most pronounced abnormalities in their white matter. Easily distracted The damaged areas tended to be in fibers that connect pain-registering nerves to higher brain centers responsible for interpreting pain. Another affected area was the ventral attention network, which allows people to break their concentration to respond to a stimulus. This fits with the affected veterans’ tendency to be easily distracted and to have trouble with memory formation. Because the number of people studied was small, it is not yet possible to draw a clear distinction between an affected brain and a normal brain, Baraniuk says. He next wants to look at similar scans of people with chronic fatigue syndrome or fibromyalgia, both of which share some symptoms with GWS. “It’s a very important paper,” says Robert Haley of the University of Texas Southwestern Medical Center in Dallas, not least because it helps establish GWS as a treatable, physiological problem. But he says the team will have to examine dissected brain tissue from deceased veterans to better understand what the scans show. The findings still do not pinpoint a specific cause or mechanism for the disorder. However, this type of scan might help physicians distinguish people with the syndrome from others with similar symptoms. This could ensure that they receive long-term pain management rather than psychotherapy. That’s good news for such people as Denise Nichols, who believes that the VA has avoided addressing the problems people like her have experienced. “We need help. Our bright hope is these researchers,” she said. “We will continue to learn and examine ways to improve treatment, process claims and better care for these Veterans,” the VA said in a statement. This story was produced by New Scientist magazine.
  2. A few years ago I was experiencing great breathing and respiratory problems. My GP Dx'd me w/ asthma and prescribed an albuterol inhaler. It seemed to help briefly when first used but the relief was VERY temporary. Finally after seeing an allergy and asthma specialist I was tested and was told I didn't have asthma (fyi, one of the important lessons that I've learned in all of this is that asthma is not a clinical diagnosis; it is a based on a specific test and a specific breath pattern.) (If I recall this correctly, asthma is not an "inspiratory problem, it's an expiratory issue".) My issues were with the inhale, not the exhale..... (In short, the albuterol was probably making the matters worse, including my POTS, and not better in net.) Fast forward: allergy and asthma guy suspected that I was experiencing "vocal chord dysfunction" which is sometimes seen with dysautonomia. And referred me to an ENT who specializes in such. The ENT explained in a person whose system is generally "twitchy," the vocal chords will be especially sensitive and tense up and make it difficult to breath. It then becomes a vicious cycle once the vocal chord closes the airway. Through coaching and some simple exercises I learned how to breath through such situations (for me some of my triggers are: heat/humidity, "environmental allergens", like heavy perfumes, cigarette smoke, smoke, etc. make breathing more difficult.) I now always sleep with a ceiling fan to better avoid this issue throughout the night. Here's a link on VCD: http://www.nationaljewish.org/healthinfo/conditions/vcd/ Good luck to everyone and I hope that you find the answers that you need for your body.
  3. for me I haven't taken antibiotics of any kind in a long time. interesting about the EDS.....
  4. one of the POTS doctors is robert hoeldtke. he is a metabolics specialist. he's studied the metabolic rates of POTS patients. (including me.) he has found that we generally have higher metabolisms than those with normal autonomic function. (corresponds w/ our spikes in high heart rates. it's like we're literally exercising all the time involuntarily.) i too am hungry all day. eat frequent small meals, but large amounts of food. yet, have been slowly losing (noticeable) weight since my onset. my appetite is now a joke among family and friends. however, you should definitely r/u everything else. hopefully, if you don't find anything else, then it's "just POTS" ... and there's the reason as it was explained to me.
  5. good points, Issie! very interesting observation about the inflammation and overall disease. certainly sodium could be a factor; however, i again. at least in jest, point to the sugar lobby which is probably at least an equal if not more culpable variable in this equation. yes, each person needs to consult with their physician regarding their own issues. i've even had 24 hour/urine "kidney function/sodium" test just to make sure that my kidneys were handling my salt load and my body was getting the proper amount of salt. i only wish that i had eaten as well as i do know that i have POTS (i.e. rarely anything heavily processed) before i got sick and become more knowledgeable on a large matter of things. and, i really thought i was knowledgeable and really did make an effort to eat well when i was "healthy."
  6. just thought of a couple more things. > warming "accessories." necklaces, watches and bracelets can help keep you warm (and, thus, overheat you in the summer.) however, this can be used to our advantage in the cold months. consider repurposing some of your jewelry you might not otherwise feel like or make an effort to wear. - maybe take granddad's watch and have it resized. or wear yours again. (like all of these pieces, it will initially feel cold, but your body heat will warm it and hold the heat.) (a metal watch with crystal movement is preferred.) - the larger the diameter the better, for heating purposes. stones or beads are best vs. metal. also chokers will keep you the warmest, generally. consider making a trip to the neighborhood bead store and finding a string of stones that feel good to you and making a choker with a "T" and circle clasp....really easy to remove. (and usually you'll get lots of assistance if you have no beading experience.) rose quartz is esp. warming and apparently has wonderful healing properties. most importantly just find something that feels good and feels warm. - wide bracelets are also great. i love ones with elastic that fit a little tight, with a little wiggle room to adjust above the wrist. (compression!) i've had good luck w/ ones made of shell, large "seeds" etc. > fingerless long-armed gloves are great. (i have something similar that my ortho made for me.) i've seen something similar @ a local shop for $15.: http://www.zappos.com/ugg-bococa-fingerless-glove-mahogany?ef_id=USfgSwAABLu1RzvU:20130307040932:s
  7. thank you for your beautiful diary entries. and your 2 corinthians translation.
  8. my (nonPOTS) GI agrees with the general dysautonomia theory that stable barometric pressure systems are better for us. (and he residenced outside of san diego.) my migraine neuro (and herself a migraineur) completely agrees the barometric pressure systems are a huge factor in migraine; she explained specifically the shift is much worse when the change is from high to low. (gosh, i hope that i got that right.) she said she could see how a stable barometric environment would be better for someone with dysautonomia. personally, i have felt better in climates with more stable barometric systems. and i think it was that factor in particular that was the major variable.
  9. oh yes, ukwildcat, eating/drinking warm -- and cold -- things can definitely bring on my symptoms (warm baths, too.) generally i prefer my food and drink room temp. and when warm, only mildly warm.
  10. yes, layers, layers, layers. i have to have some kind of daily camisole, tank, etc. on almost every day, even in the summer. often then a 3/4 sleeve shirt or think long sleeve shirt, or sweater. in winter, and summer, i'm a fan of "poncho" sweaters as a general over layer. they keep you warm, but air circulating. plus you can take them off quickly.... (in the summer, they make gauzy, types.) another great winter layer is a pullover fleece or sweater with a zip in front (the longer the better). this is like a really quick thermostat control. a longer zip gives you more temp control and also helps w/ ease of removal. finally: the best secret weapon for temp control is: SCARVES! (again, even in summer....just diff. fabrics.) in the winter, esp. depending where you live, it might be a 1-3 scarf day. (i.e. "the inside scarf", plus 1-2 outside scarfs for the outside temps.) the trick is to get warm and stay warm, but not overheat. (you can use scarves to "uncool", too, when you get too hot. just take it off, or unlayer and instant cool down! great trick in winter, or summer.) yes, keep those hands and feet warm, too. yummy socks. (at nighttime i like larger socks both for comfort but also so that i can easily take off if i get too hot.) and be sure to keep the hands warm, too. (same with the head.) we dysautonomics lose our body heat much faster than the average citizen, so it's important that you layer up right before you leave with the scarf, hat, glove, etc. and wind layer. (and like katybug says, a lab is a great warming and general feel-better companion!) - also agree with warm baths. i could literally write a book on that. ironically, in the winter b/c i live in a humid climate, my net energy is really maxed by a bath, so i have to budget one for about every day and a half or so. - a warm "corn bag" is nice. but the up and down of warming it up is often not worth it. - i love my ceramic "travel" mug. it keeps tea warm for quite awhile and feels great on the hands. i generally have a couple of yerba mates a day. generally when i start them i'm craving a warm up. often by the time i finish, they are just more hydration..... http://www.bedbathandbeyond.com/product.asp?sku=18668157&utm_source=google&utm_medium=cpc&gclid=CJTl9Z7U6bUCFQY4nAodymEADg - finally, i sleep with my north face sleeping bag under our bed clothes. so that both my husband and i can sleep equally comfortable. i don't zip it up, but i'm nestled in it and am able to get quickly warm every night and we both sleep great. (before i discovered all the layer tricks i drug it downstairs so i could use it during the day/evening, too.) stay warm and stay cool!
  11. vocal chord dysfunction is apparently a less common complication of autonomic imbalance. http://www.nationaljewish.org/healthinfo/conditions/vcd/ while i'm not sure if labored breathing is the way i might describe it, perhaps vocal chord dysfunction is what you or others reading this post are experiencing? with therapy and coaching it can be pretty easily corrected without medication. (ENTs treat and specialize in VCD.)
  12. Oh, my Ramakentesh! That doesn't sound like any fun....
  13. Relax86....your physician can do a simple urine/kidney function test to see if your kidneys are holding enough salt, etc. this will let you know whether you need any salt retention specific medications, whether you are getting adequate fluids, salts, etc. since i was very young, i've always craved laughable amounts of salt. in fact, even before the POTS Dx, a cardiologist once told me to liberalize my sodium intake. most people aren't "that lucky" to hear that from a heart doc. i still crave salt and salty foods. olives, pickles, etc. since the POTS Dx, I have made an effort to become more knowledgable about the benefits of salt and now really love trying new sea and celtic salts. besides a basic coarse sea salt, this is my favorite everyday salt: http://www.saltworks.us/shop/product.asp?idProduct=168 (it's available in smaller sizes, but this is the most economical. even w/ my prescribed salt habit, the bag lasts quite awhile.)
  14. note: this study doesn't specific what kind of dietary salt(s) they studied. table/iodized vs. celtic/sea, etc. all are very different. it also sounds like the sodium was part of a fast food diet. so it might not necessarily be the sodium in the salt but rather "the diet" that is causing this effect. like most so-called studies, i'd take this one with a grain of salt.... (in fact, the sugar lobby probably funded this "piece" just b/c their feelings have been hurt that the natural salt folks have been doing so well lately.)
  15. has anyone with dysautonomia had an acute or chronic problem with tendinitis? today i had my second orthopedic appointment in less than 2 weeks and the doctor asked if tendinitis is consistent with dysautonomia/POTS patients....as i was beginning to wonder the same myself. i now have tendinitis in the r. knee, both wrists & forearms and both hips, possibly shoulder (still being evaluated @ PT.) until i'm able to discuss with a POTS medical professional, i thought i would ask the DINET community for their experience. thank you. (diagnosed POTS since 2001 | first major POTS onset in 1998. mild dysautonomia symptoms since childhood.)
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