briarrose

I haven't had my gallbladder out yet but that might happen before long. For me personally I've had problems in the past with the flu shot and I think that might have been the final smoking gun to the onset of POTS. My doctor's were pretty insistant that I have the flu shot so they even tried me two years in a row getting half the shot vaccine one week and half the next week. I think I did alright the first year but the second year I couldn't even think about having the second dosage. Everyone is different and it can be a trial in error. If you get the shot just don't do it within the couple of weeks that you have the surgery, that's my two cents. take care steph

Hang in there Persephones I hear and can relate with you 100 percent in this area! I left you a note on my post from yesterday. I would bet that your docs have probably seen more than just 2 people with this problem.

Mom4Cem, you gave me a good laugh this morning "pre-tweener syndrome." I think my oldest daughter started when she was about 9 and who would've ever guessed a sweet girl like her could be gotten by that horrible tweener bug, boy was I in for a rude awakening. Persephone - Good to see you again, I've missed all of my POTS family I'm sorry about your ordeals lately. Doctor's stories get me going the most as their own ignorance and sometimes incompetence drives me crazy (NO not literally! ) The non-believers need to be educated and if they can't be educated they need to be written off as idiot beyond help. I make up medical information binders for all the new docs I see because I know they don't have a clue where I live about POTS or Dysautonomia. The jump start on medical information usually helps inform them or reveal their lack of learning something new. Sometimes depending on what kind of new doc I'm seeing I'll carry a copy of my medical records and the most important diagnostic tests I've had proving that I have POTS and severe hypotension. Hang in there

Welcome Lauren! You're right this forum is a huge lifesaver and a really nice large family to have here. I've made some really good friends here and I hope to keep it up. I Hope to talk with you in the near future. Thank you Corina for your post, it's always so nice to have such great support and understanding here. I felt horrible when I read ChiariMSwithPOTS post about not feeling listened too. I realized that I had better say something, explain I guess because I haven't felt well enough to post much. I've even started posts and erased them because I started falling asleep while writing and couldn't finish I think I'm a pretty good mom but nobody is perfect and being a mom is a tough job without a chronic illness like this. I'm fortunate that my youngest is now 14 and is in high school. I have 1 away at college and 5 still at home. So even as they get older they are challenging in a different way and let me tell you what it's like to have 3 moody, emotional teenage girls under one roof at one time If I had known I would've requested all boys

I developed phlebitis in my hand after an IV once but they didn't do anything about it. It was extremely painful and thank goodness it wasn't my dominant hand. I don't have any other experience with this problem though but attached a web link. http://www.emedicinehealth.com/articles/11161-3.asp

Hello Some of you know me as briarrose & some know me as Steph. Many haven't seen much of me the last several months and that's probably a very good thing. I'm terribly sorry that I haven't posted & welcomed all of the new people. I've barely been skimming the boards the last few months because I've felt so poorly and simply unable to concentrate to read let alone respond. I'm happy to answer questions if I have any knowledge about your situation or can research it for you. I don't have a very good understanding of Chiari but that doesn't mean that I'm not willing to be enlightened and for those who suffer with Dysautonomia we usually have pretty similiar symptoms. I can sometimes sound harsh in my posts but I honestly don't mean too. Sometimes I'm not clear enough about my meaning or I'm so tired I just say what's on my mind without taking the time to make it flowery, that's just who I am. Lately I've been very forgetful and just plain brain dead. I'm a single mom of 6 children. I work full time and have a volunteer research medical information project that I work on when I'm feeling decent. I use to go to school too before I got sick, I'm dying to finish but realize some of my limitations. In fact before I developed the final stages leading into POTS; I could go 20 hours a day most of the time. And just because the kids are back in school that doesn't give me any more time on my hands as I'm trying to go to their activities and support them in their endeavors. At the end of June I ended up in the emergency department with severe Stomach pains and was admitted. In early August I travelled to see my POTS doc. In late August or early September I ended up back in the Emergency department a day after I had an endoscopy done for the stomach issues. Somehow I herniated several of discs in my back while I was still trying to sleep off the medication from the endoscopy (hmmm.) I've been in PT and still trying to work as close to full time as possible to support my kids. I've also had several new symptoms and am not sure what to make of them (like shooting/burning pain up my spine above where my back is herniated. Muscle spasms from my neck to my feet that at times can burn. And now joint stiffness among other new problems.) I was once new and I relied on everyones support and I had such a need and hunger for information. I read everything about POTS, Dysautonomia or one of my millions of symptoms. I'm trying to think of ways to make a difference for others that currently have the illness and those that will join us in the future. The most important thing to me regarding this illness is informing the thousands out there that are sick and don't have a clue what's wrong with them. I also enjoy being able to find information or articles for people. I'm sorry to make this post so long and I'm not sure I said everything I wanted. I'm not purposely trying to be neglectful of anyone and I'm sorry if some of you have felt that way. Take care Steph

Your vaccination very, personally I think highly unlikely but here is a link to early vaccination http://www.sc.edu/library/spcoll/nathist/jenner.html I like Eli's answer and I've heard it before but if that was true everyone would probably be effected to a certain degree. But it could definitely be one more factor. My friend's theory was this - If you look at a metal beam (our body) and you and enough weight, stress, elements of the weather (factors) eventually it's going to reach a point where it gives out. I happen to agree with that to a certain degree. But since other members in my family suffer from this and other genetic disorders I think that is a factor. I think you're like most of us looking for an answer "why me" and I'm not sure that you will find the right one but there are a lot of good theories. Check out this link as I post it often because it is very well written and has some good web links at the bottom. http://home.att.net/~potsweb/POTS.html

It sounds like your heading in the right direction but it's going to be a lot of work. I would probably make up a spreadsheet & known table of symptoms. I'm not sure if I would start a seperate spread sheet for new medications or not but definitlely document how your feeling on the symptom spread sheet and you should see a difference if any otherwise it might get to confusing. Definitely a seperate spread sheed for your vital signs. But sounds like you pretty much have it figured it out, maybe you could sell it when you get it perfected Personally I just keep a daily journal when I'm at my worst; noting symptoms, blood pressure and current medications. Also if there has been any major changes to my diet or health.

I studied this a few years ago and I also posted it along the way. Starting from the earliest mention of this illness, how it has evolved and I attached some cute photos from the turn of the century. You might want to do your own research and use the different names that this illness has been labeled and this is very important follow the military timeline as it mentions this illness and it proves how obvious it's been in men. AKA Soldier's Heart irritable heart effort syndrome neurasthenia idiopathic hypovolemia hyperadrenergic orthostatic hypotension vasoregulatory asthenia Timeline on Military with similar illness or called War Syndromes (very interesting) http://www.gulflink.osd.mil/medical/med_syndrome.htm http://www.worldhistory.com/wiki/N/Neurasthenia.htm You should also do research on Dioxin Neurasthenia disorder info sheet http://www.psychnet-uk.com/dsm_iv/neurasthenia.htm AKA put out by CS group - kind of interesting http://www.cssa-inc.org/Articles/CFS_names.htm OK that's it for now

Hey Morgan I'm glad I'm not alone on the side effects of beta blockers, I use to wake up with the same problem sometimes in the morning it would take me up to an hour to get a full breathe. I've been through so many beta blockers and am currently on Kerlone. I spent about a year on Atenolol before I couldn't take that anymore. So as far as beta blockers go I hate how they make you feel tired, unable to breathe and drop your heart rate and blood pressure too low, I like how it stops the tachycardia and arrhythmias. I take Valium too I've just been warned by the doctor's that it's not good for people that have Dysautonomia/POTS. You don't sound resistant, you sound tired of waiting for help. And you know the problems of taking medications. I'm the same way, I get tired of feeling like a guinea pig. Hang in there Morgan, we're pulling for you.

Hey Morgan Thank you for the apology but I understand what your saying and I'm just very frustrated with you since I've been in a similar situation. I've spent countless hours researching and talking to people and doctor's as I'm sure most of us have. I've put up with the doctor crap and them telling you how you should feel when they don't have a clue. I'm upset that they told you that a swing in your blood pressure shouldn't make you feel as bad as you are, we know better. I've come to realize that there are very few people that really understand this illness and can really help treat it. I know that the doctor's prescribe medications to us that were intended for other illnesses because there side effects help treat some of our symptoms. I also know that sometimes doctor's are reckless, careless and inept. I'm sorry for all that your going through and I hope you find someone that can help you soon.

Hey Morgan I asked you what meds you were on and I see them at the bottom of your page. I noticed that they don't have you on a beta blocker to help control the tachycardia and they have you on Valium. I take Valium sometimes for muscle spasms and it actually is one of those medications that can be dangerous for people with Dysautonomia. I'm wondering if they can't help you more by adjusting some of your medications.

Morgan I'm so sorry and angry for your situation. I can't believe their attitude. I also can't believe that they told you that you shouldn't feel crappy from a blood pressure swing like that. GIVE ME A BREAK! We all know that feels like crap. At a time like this I think of Chris Calder's Mind Experiment for a doctor. Morgan what medications are you on currently? And not that this will make you feel any better but when I first started with the tachycardia it wasn't positionally for me either, I would be laying in bed doing 160 trying hard to fall asleep for hours. Hang in there and advocate for yourself, don't let them do anything to you that you don't want and INSIST on what you do want!

My mom is in her early 60's and has Dysautonomia/NCS & mild POTS, sorry.

Hey guys! Thought I would throw this one out there because getting any illness exacerbates our symptoms for weeks & sometimes months so I thought I would give you the heads up on this article. Oysters worldwide contaminated with norovirus One out of every ten imported oysters screened in Hong Kong showed evidence of contamination with norovirus -- the term for Norwalk-like viruses that cause severe diarrhea and vomiting -- according to researchers. Senior investigator Dr. Wilina W. L. Lim told Reuters Health that "it appears that oysters may be an important vehicle for introducing novel strains of norovirus." Outbreaks of gastric illness caused by norovirus are often linked to eating oysters and contamination appears to be widespread, note Lim, at the Public Health Laboratory Center, Kowloon, and colleagues in the Journal of Medical Virology. They found that 10.5 percent of 507 samples of oysters from 11 countries tested on arrival were positive for norovirus genetic material. In particular, oysters from six countries were contaminated, while those from the remaining five countries were not -- but the team does not say what those countries were. A wide variety of virus strains was found, including two novel types. "Given the popularity of consuming raw oysters in many countries, oysters may serve (as) a vehicle for the dissemination of new norovirus strains," Lim's group concludes. Norovirus screening was also conducted following 13 outbreaks of oyster-associated gastroenteritis in hotels or restaurants in Hong Kong. Norovirus sequences were detected in at least one oyster in six outbreaks. However, only in one outbreak was there a match between the strains isolated from patients and those found in the oysters. SOURCE: Journal of Medical Virology, August 2005.

One thing that I found when investigating for my daughter that the West Coast is kind of up to speed on, although I would have to head to Seattle, Washington in most cases With a list of chain restraunts that Cater to Gluten-free around the Country http://www.kintera.org/site/pp.asp?c=ewK0LjP7E&b=34744 http://www.kintera.org/site/pp.asp?c=ewK0LjP7E&b=34742 Guide to eating out http://www.goodhealthpublishing.com/listserv.html# But here are some great websites http://www.celiac.com/st_prod.html?p_prodid=411 http://www.wildoats.com/u/health100071/ http://www.kintera.org/site/pp.asp?c=ewK0LjP7E&b=34740 NY Eating out http://www.glutenfreerestaurants.org/ Seattle Celiacs http://www.seattleceliacs.com/gluten/default.aspx Seattle specific restraunts http://www.seattleceliacs.com/gluten/Resta...62/Default.aspx My friend just told me that Walmart super stores will be carrying an isle of gluten free products.

Yes than can diagnosis young kids. In fact Dynakids states children as young as one year old. Here are a couple of weblinks that might help you. http://www.dynakids.org/index.jsp http://www.med.nyu.edu/fd/

Morgan I feel your pain and I'm glad that I read your post, I agree with you 100 percent. I haven't been very good the last 3 months about keeping up with the board. I totally understand what you?re going through. I know you've looked everywhere out here, been there, done that! Steph and yes the U of W is regarded as one of the best medical universities in the country, top 20 for almost every specialty of medicine. They also (with Bill Gates help) have the Genome project. http://www.genome.washington.edu/UWGC/index.cfm So of all places you think you would be able to get help there. Before I traveled to see Dr. Grubb I searched almost all of the NW looking for care. I kind of stopped short on California but did make calls down there too. Each hospital I called in Washington, Oregon & California I talked to the cardiology department, Neurology dept. and Infectious disease dept, just to cover my bases and I didn't get anywhere. I know that there is a Dr. at Oregon Health Science University that someone else sees and she's been pretty happy with her care but I've called that dept and been blown off too. I live a little farther West in Portland, Oregon but Dr. Grubb has been worth the travel and the money. I wouldn't be where I am today without his help. He was an investment and a life saver. I know that without his advice and treatment I would be too sick to work and I would have had to let my ex-husband have the kids because I would be too ill to care for them. Before I traveled to see Dr. Grubb I was ready to give up and life was kind of minute to minute, symptom to symptom. Morgan try to hang in there and continue turning the stones, something has got to turn up. And if all else fails I would be happy to have you in my suitcase But I won't be going back until at least next year sometime as I just saw Dr. Grubb and I have many issues that I have to take care of before we can attempt to tackle my hypotension issues again. In all seriousness if you want to send me a private email of what your symptoms are and what you need done I would be happy to get back on the phone and retry the medical system again here in the NW for you. Just a side note but I was looking for a new primary care doctor here and I thought what the heck and called my health plan referral line and told them what kind of doctor I needed & what my diagnosis is; 2 weeks went by and I thought they gave up on me but they finally called back to say they had been hunting that whole time and really couldn't help me because no one knew what Dysautonomia was They did give me a couple of names to try of internal medicine doctors. I also know that Roselover has a very good primary care doc, I'm familiar with many doctors? there because they are affiliated with the hospital I work at and they are always well receptive of our phone calls from the ER. So I might just switch to her doc. Take care Morgan and let me know if I can be of any help to you. Steph

I agree with you Gena and I know how serious sodium nitrates can be. When my oldest son was 3 years old he was sick for months. The doctor's couldn't figure out why he had chronic diarrhea. It turned out to be nitrates in hot dogs and lunch meats that he was having a serious reaction to. We had to stop feeding him that stuff! But I'm wondering if the doctor's aren't on to something for certain circumstances. And I was kind of suprised that they didn't talk about hypovolemic patients but maybe I'm off base.

Sodium Nitrate Could Be Disease Cure By LAURAN NEERGAARD, AP Medical Writer Mon Sep 5, 4:19 PM ET Could the salt that preserves hot dogs also preserve your health? Scientists at the National Institutes of Health think so. They've begun infusing sodium nitrite into volunteers in hopes that it could prove a cheap but potent treatment for sickle cell anemia, heart attacks, brain aneurysms, even an illness that suffocates babies. Those ailments have something in common: They hinge on problems with low oxygen, problems the government's research suggests nitrite can ease. Beyond repairing the reputation of this often maligned meat preservative, the work promises to rewrite scientific dogma about how blood flows, and how the body tries to protect itself when that flow is blocked. Indeed, nitrite seems to guard tissues ? in the heart, the lungs, the brain ? against cellular death when they become starved of oxygen. It doesn't mean artery-clogging hot dogs are healthy. But the NIH researchers have filed for new patents on this old, overlooked chemical and are hunting a major pharmaceutical company to help develop it as a therapy ? even as doctors await the enrollment of sick patients into research studies in coming months. The scientists are so convinced of nitrite's promise that lead researcher Dr. Mark T. Gladwin says the government will pursue drug development on its own if necessary. "We are turning organs into hot dogs," Gladwin jokes. Then he turns serious: "We think we stumbled into an innate protection mechanism." If it works, "this drug would be pennies to dollars per day," says Dr. Christian Hunter of California's Loma Linda University. By January, Hunter hopes to begin studies of nitrite treatment for babies with an often fatal disease called pulmonary hypertension. "It's so easy to use." Gladwin and an NIH cardiologist, Dr. Richard Cannon III, discovered nitrite's effect by accident while studying a related compound, nitric oxide, long known to improve blood flow by dilating blood vessels, but difficult to use as a drug. Gladwin and Cannon injected sodium nitrite into healthy volunteers. Tiny doses almost tripled blood flow. Moreover, when people exercised, nitrite levels plummeted in the muscles being worked ? the body was using it. The researchers were stunned. For 100 years, scientists thought nitrite had little medical relevance. High doses are an antidote for cyanide poisoning, but they're also toxic. In 1944, 11 New Yorkers literally turned blue, their blood struggling for oxygen, after they accidentally ate the meat preservative instead of table salt. The low levels that naturally occur in the human body were thought to be inert, unimportant. Not anymore. "This has led to an avalanche of work," says Gladwin, who this week hosts an NIH meeting where scientists will compare nitrite research. The work done so far is "sufficiently encouraging to warrant a full-court press," says Dr. Franklin Bunn, a Harvard Medical School professor who has reviewed much of the research. When oxygen levels drop, the body's natural stores of nitrite convert to nitric oxide, in turn dilating vessels so that more blood ? and more oxygen ? gets through. That's Step 1. Then there's tissue preservation. Consider: Even after doctors clear a blocked artery to end a heart attack, heart muscle continues to die for a while. Nitrite interrupts that chain reaction, caused when harmful proteins spewed by dying cells in turn take out their neighbors, says David Lefer of Louisiana State University Health Sciences Center in Shreveport. But the heart's nitrite stores are depleted quickly. "When you have a heart attack, you use it all up in the first few minutes keeping the organ alive," Lefer says. "You need to add some more." So Lefer bred mice with low nitrite levels, clipped off the rodents' main heart artery for 30 minutes, and infused nitrite before opening the artery back up. The salt cut by 67 percent the amount of heart muscle that died. Gladwin says it worked as well in dogs, whose hearts are similar to people's. He hopes a study in people suffering heart attacks could begin next year. The first human patients to test nitrite have sickle cell disease; another piece of the nitrite puzzle is its connection to hemoglobin, the oxygen-carrying protein that makes blood red. Doctors have long thought the bouts of crippling pain suffered by sickle cell patients resulted when their abnormally shaped red blood cells clumped together to block blood flow. But these red cells also dump large amounts of hemogloblin into blood plasma, where it gobbles up nitric oxide, Gladwin found. That constricts blood vessels, causing more pain as sickle-shaped blood cells push through. At NIH's hospital in Bethesda, Md., Gladwin has infused nitrite into six sickle-cell patients. This first-stage study is designed to test safety, not nitrite's effect on pain, but it is dilating participants' blood vessels, he says. Other ailments under study: _Babies with pulmonary hypertension today are treated with inhaled nitric oxide, to lower blood pressure in arteries connecting the heart and lungs. It's difficult, costs more than $1,000 a day and requires complex machines available only at certain large hospitals. Loma Linda's Hunter mixed nitrite into nebulizers, inexpensive plastic containers that asthma patients often use to breathe in medicine through the mouth. In sheep, this easier nitrite therapy treated pulmonary hypertension better than nitric oxide. _The few people who survive a burst brain aneurysm face another big hurdle: Within two weeks, their brain arteries spasm and about half suffer a stroke. There's no prevention; doctors merely keep patients in intensive care, poised to treat a stroke as soon as it happens. NIH neurologist Dr. Edward Oldfield engineered monkeys to mimic a developing spasm, and then infused the animals with either nitrite or salt water for two weeks. None of the monkeys given nitrite had one ? but all of the saline-treated monkeys did. "We were surprised at how complete the protection was, and with no toxicity that we identified," Oldfield says. "The beauty of sodium nitrite is it seems to interact with the hemoglobin in a way that permits it to be released only where it's needed." Doctors are e-mailing NIH to ask how soon a human study could begin, Gladwin says; one is in planning stages. It's a surprising revival for a substance once suspected of spurring cancer. But sodium nitrite also is found in leafy green vegetables, Gladwin likes to note ? although no one knows if eating it would bring any of the possible pharmaceutical benefit. "The idea it's bad for you has not played out," he says. "The fact it was linked to hot dogs gave it a bad name."

Thank you Nina

Hey Nina & Michelle My question is can we add a key to our Jargon, maybe to the already pinned topic what helps? That way all of the new people would know our terminology. I'm sorry if we already have one and I haven't been keeping up with the website but as you've notice I haven't been on much in the past 3 months either because of several medical problems and 2 hospital stays. If you guys want to do that and don't have time maybe I can make up a master list. Steph

Chad Your in good hands and I agree with much that has been said. You should keep a log of daily symptoms and regular times of the day for blood pressure and heart rate. Maybe if you have a really bad symptom you could take your vitals and register that on another page of crisis situation symptom and vitals at time of occurence. As for food and drink, there has been much debate and it is very individually based! It will be an experiment for you to cut things out and notice how you feel. I've personally been told to drink more water, gatorade with salt added, I can't tolerate one leading brand of soda products but do alright with another AND most important because I have orthostatic intolerance they suggest 1-2 cups of coffee a day to help bring up the blood pressure. There are some types of coffee I absolutely can't drink because they increase my tachycardia and others I do fine with. Some of the powerade/gatorade drinks have made people feel worse but that often depends if their sensitive to the sugar too. Tracy I'm not sure what your diagnosis is or who your seeing but I've rarely heard of decreasing water but maybe you were drinking gallons a day theres my 2cents steph

Great idea Dan and great to see you back again! At one point during those kind of posts I actually just wrote my history and posted it with meds and diagnosis but I think people got the wrong idea about why I did it. I simply did it so they could have an idea of my situation. Steph

You should talk to Linda Smith at the NDRF because she was telling me a story about a segment that was on a prime time news show, I think about Chiari syndrome. After the show aired they were overwhelmed with men calling. So there is a lot of thought that many men suffer from Dysautonomia's, but it's the women that are being diagnosed not the men. Don't let doctor's discount you and blow you off. Advocate for yourself and find the right answers!