ashleighheath

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.

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.

for me I haven't taken antibiotics of any kind in a long time. interesting about the EDS.....

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.

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."

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

thank you for your beautiful diary entries. and your 2 corinthians translation.

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.

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.

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!

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.)

Oh, my Ramakentesh! That doesn't sound like any fun....

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.)

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.)

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.)

I'm so glad that you've had success with it, too, Dani! ramkentesh, While I agree that POTS may not be "caused" by deconditioning, I do believe (based on personal experience) that symptoms can be better managed by better conditioning. Perhaps I could have phrased my explanation better. Of course, this much easier said than done when you are balancing POTS symptoms and dealing with exercise intolerance and attempting to recondition a most-likely (an increasingly) deconditioned body. It certainly helps w/ GI symptoms but is a fantastic way to overcome hurdles for general vasoconstriction issues. I've only used the subcutane. Yes, it is very expensive ($10,000 month for the full prescription for dosing all day on a subcu); however, it is available in a generic form and depending on your insurance, it can be available as a generic copay (i.e. $10/month.) My current physician (GI) is consulting w/ Blair Grubb on my management and previously my physician that introduced me to Octreotide was a physician (Robert Hoeldtke) that researched and published articles on Octreotide. He had attempted to get funding to research the potential for POTS therapy but was unsuccessful (this was about 10 years ago). We ended up just using it privately. Yes, it's expensive but well worth it. Dr. Hoeldtke believed that if it was proven as a broader therapy then the production would increase and the price would go down (which is a basic economic principle).

If you're like me, and based on these readings it sounds like your BP runs low generally, I would think you're going to be fine. I would imagine that your physician would probably not prescribe Midodrine unless your baseline BP was generally low. I, in fact, resisted taking Midodrine for so long b/c of these concerns. I was afraid that if I was feeling bad w/ a POTS spell and laid down, I would be in a pickle esp. if had I forgotten I had taken the Midodrine. I discussed this concern w/ my physician and she assured me that this risk was very low in a POTS patient w/ a low resting BP. And, in fact, I had been testing my BP laying down prior to our discussion and it was always within "range". Now I take it 3x a day without giving it a thought. Of course, it would be wise to discuss your concerns with your physician re: your specific health history. But for your immediate peace of mind, this has been my experience.

I'm late to this reply, too. For what it's worth for future migraineurs.... I'm currently taking 100 mg of the generic version of Topamax which is apparently the equivalent of about 60 mg of the namebrand. It also took me awhile to build up to this strength b/c I had some side effects at first. (Can't remember specifically what they were at this point. If side effects are an issue, it is suggested to take the dosing at bedtime.) My new/current neurologist just told me that Topamax may be partly the cause of my brain fog (and in reading these comments, I see why!); and, I thought it was just the POTS. I also take a beta-blocker for the POTS which is partly a migraine preventative, but it seems to actually not help the POTS and may actually be hindering my progress. In this case trying to manage the migraines and the POTS are in conflict. My abortive options haven't been completely effective (and have 2-3 multi-day migraines per month with almost daily headaches of some sort or kind.) Sumavel DosePro is painful to administer; I'm in the process of switching to a regular injection. What I'm most hopeful for is starting Botox therapy. It is an injection that I will receive at the doc's office once every 3-4 months; may/may not be a copay (depending on who injects me.) My insurance company told me it may actually save them $, too, over the injectable prescriptions. So it may be a win-win-win all the way around, b/c I would also be able to go off the daily preventatives (Topamax and beta-blockers.) Just something to consider for migraine sufferers. Noting, most insurance requires careful documentation of trials of a certain number of other drugs within certain categories first. I, too, have tried Magnesium, COQ10 as well as one of the B vitamins. I don't really think it helped. This particular neurologist suggested that for someone with my level of migraines, that vitamin therapy probably wouldn't be a real help. But generally, I am a fan of holistic options. Although I also prefer not to swallow more stuff than I need to.

May I suggest trying Kombucha? (a fermented tea drink available at Whole Foods and other such natural-food stores) This seems helps me immensely w/ my nausea (as well as general hydration issues) and is rich w/ probiotics (which helps w/ digestive issues). I particularly like the Gingerade and Multi-Green flavors when I'm feeling puny. It is especially helpful before a meal and sometimes can act as a mini-meal replacement/supplement. I, too, have GERD. And suspected Gastritis. (Just didn't want to pay the $ to go thru the separate diagnostic test.) I also like Zofran (available in generic) for severe nausea -- it's a tab that dissolves on the tongue. I hope you find some relief. Best wishes to you ~

I am currently using Octreotide as a method to increase my physical therapy/physical activities. And with gradual success, thus far. I also used it with great success to previously rehabilitate myself during a much less severe episode of POTS several years ago when I was younger and more generally healthy (also in combination with physical therapy and physical exercise.) My current relapse is more severe. Probably due to a combination of age/more deconditioning. (Thus, my efforts to recondition myself w/ the aid of Octreotide.) When first beginning Octreotide therapy, there is sometimes some mild-moderate GI discomfort, but in my experience it passes as you continue the use and build up tolerance. And each episode is generally short-lived and is on par with general POTS GI symptoms. So it's worth it to get through the initial phase to gain the payoff. (It seems if you bring the medication to room temp when you first beginning using it, it seems to help with this. And also, start with small doses and build up.) Also, you should probably monitor your blood sugar, b/c levels can become elevated (esp. in those individuals w/o a gall bladder), but even w/ elevated blood sugar levels, they can still be considered in the safe range. And the overall benefit to the POTS improvement is worth it. From my perspective, Octreotide is probably best used as a "short-term" solution to rehabilitation and for managing more difficult challenging situations b/c of the potential adverse side effects. But it can be a very powerful tool. Physicians, even POTS specialists, seem to be generally cautious against using it. I ended up having my GI doctor push for its approval w/ my insurance and it was approved. And fortunately he has been very open to me "experimenting with it" and using it at my own pace.

Hi, POTS community ~ At my physician's suggestion, I am hoping that someone within the POTS community could recommend a social security disability in North Carolina (specifically the Raleigh area) that is familiar with POTS and has successfully handled an appeal. Thank you!

Thanks everybody for all of the ongoing support and specific recommendations. Your knowledge is power.

My experience with Mestinon has been extremely positive. Currently I take 60 mg 3x/day. I have tried the timespan and very much liked that. For cost reasons, I use the short-acting. I can literally tell when I need to re-dose. When I first started taking the Mestinon it was very evident. It was like someone took the battery out of me. In fact, initially my dosing started to run out about 30 minutes prior to my next dose. When first taking the medication, for several months I had side effects associated with the medications, including a couple of episodes of severe muscle twitching. But all of that got better over time. This is the one medication that yields measurable effects. (My midodrine only works if I'm taking the Mestinon. And I'm still not convinced a beta-blocker will ever help me. I keep trying them.) As for GI issues, if you have POTS-associated constipation, it's a probably a good choice. For those with POTS-associated loose bowels, probably not a good choice. Especially in the initial stages. After being on the meds for almost two years now, GI side effects are a non issue. The literature remarks that Mestinon tends to be more effective for those POTS patients with excessive sympathetic activity. (i.e. fight-or-flight response). I find this to be personally true. Best to you!

Thanks for all the replies and support. It's my understanding that it's the norm that most applications (and appeals) are denied. I've found some other forum strings with tidbits of tips. Just hoping for some gems of advice. In looking at the medical conditions it seems that there are two categories for which POTS may be approved: NEUROLOGICAL 11.14 for peripheral neuropathies CARDIOLOGICAL 4. 05 Recurrent arrhythmias While I want to focus on symptoms, I wonder if it's just as important to argue within the terms of their accepted world view? It is an exhausting process to tackle, on top of managing the POTS. Thankfully my husband is so supportive, too. He made a most kind comment. He said that more than just the money, it was a disappointment to him because it he had hoped for me it would an acceptance would give some validation to my struggles. (Of course, I was braced for the denial, as is typical for any SSDI application.) I now have a wonderful and supportive POTS specialist, but it's been a long haul in getting the right treatment and respect from the medical community. And it took some time for my husband to understand the scope of POTS. Again, thanks all for the comments and tips. Please keep them coming! It's helpful and hopefully it will help the next readers, too.

Has anyone that has initially been denied their SS disability application been successful in the "reconsideration" process? I just received my initial denial last week. Of course, I am a little overwhelmed by the reconsideration process (60 day deadline) but want to give it a go without an attorney realizing that while I thought I was pretty thorough in my initial claim, based on the letter that I received from SS, I obviously did not make it abundantly clear that I at this time I am not employable given the limitations of my POTS. (On my best days, I have only a couple of hours per day of modest, modest functional time that is light cooking, paying bills, going to the doctor, etc. I am only to wash my hair (and not dry it) once a week, at most. I frequently have horrible migraines that affect me for three days. You all know the POTS story. What kind of employer would put up with that on a week-to-week basis, not to mention on a day-to-day basis allow for frequent breaks every 20-30 minutes after any kind of exertion, and allow for frequent meal breaks and the rest required afterwards?) Do you have any specific recommendations for things to include? I am going to request an appointment with the "vocational rehabilitation services office" because I would love to know what kind of significant work the SS office has in mind for me. And perhaps this will strengthen my application? I was expecting some sort of vocational assessment as part of the initial application, but that never happened. I have read that attorneys only can take a max-cap of fees, so hiring an attorney might be a good option at some part of the appeals process if my application is not approved "soon"; however, every little bit counts so I hesitate to hire an attorney if there is any chance I can petition for these rights on my own. On the other hand, I hate to lose the whole process if I really need an attorney. Any feedback is greatly appreciated. THANK YOU!