briarrose

In my opinion there are more doctors in the MidWest & East coast that can identify and diagnosis Dysautonomia then in the West. People that live out here are dang lucky to get a diagnosis. We might find out someday that there are environmental factors that come from the midwest though to cause a higher incidence of cases.

Emily thank you very much. God bless you for your kindness

Jeff Welcome! I agree with the others too. I understand you wanting a seperate category but everyone is usually so similar that they would stick to one main page, that's how it is on NDRF (National Dysautonmia Research Foundation) too. What we share in common is the Dysautonomia. I see POTS as just having an additional symptom, the tachycardia on that diagnosis. It's the dysautonomia that causes us to have many of the same symptoms and treatments no matter what our diagnosis the only difference would be the beta blocker wouldn't be necessary for many without the tachycardia. And I believe what I'm trying to say to you should fit your theory. Also, over time many of us change and get additional diagnosis. I started off with some weird symptoms for a month and then the tachycardia hit me. A year later I progressed to have NMH. Looking back on it though I could say that 20 years ago I had NCS because I use to pass out when I would get over heated. Over the years I've had several doctor's tell me different diagnosis and some even told me that they knew that something was wrong but they didn't have a clue what or how to treat it. This is a very complicated illness. thx for your thoughts, it was interesting to read. Steph

Rachel Welcome aboard. Don't worry about your diagnosis there are others here that don't have POTS either but other forms of dysautonomia. You will get good advice and inspiration here. I'm sure we can learn from you too since many of us have also been told one time or another that we have CFS. Thx for the information about Dr. Rowe, he sounds like a wonderful man. See you on the boards Steph

I would have to agree with the other Steph, Definitely Epogen and IV Iron has given me back most of my energy and life. Neurontin for the horrible joint pain. Beta-Blocker for tachycardia. Protonix for GERD. A very low dose SSRI. Zofran for nausea. Imitrex for migraines. I'm sure there are a few other meds that I should be adding but those are the ones that changed my life

My mom has a milder case of Dysautonomia/NCS. One of my mom's sisters suffers tachycardia and has had 2 ablations and is looking to possibly have another. One of my mom's sisters kids developed tachycardia during her first pregnancy and hasn't searched for a diagnosis but just takes a beta blocker. And now looking back on it they think that these are the same symptoms that their mom suffered from. I don't think any of us have ever had bell's palsey though. Gotta love genetics

Thank you guys! That's exactly what I needed to hear. I was prescibed the medication for stomach spasms. I was scared when I looked up the medication and saw that it was for urinary incontinence and that's not my issue. It was reassuring hearing everything you guys had to say. Thank you very much for responding and NO, you guys didn't scare me at all. Steph

MightyMouse Do you think that he said that because he has formulated some other thought about the origin of your POTS? Or maybe he just doesn't realize the impact that EDS has on POTS? hmmm it's a tough one.

I'm curious about who's taking Levsin, what their chief complaint was to be put on it and how their doing with it. I looked up the medication yesterday and see that it has a pretty broad usage. I was prescribed it for stomach spasms. any info would be great guys thx steph

Dayna I struggled with SSRI's too and their side effects. I still take a low dose of zoloft 12.5 mg. If you have concerns I would call the pharmacist, they know more about medication reactions then anyone in my opinion.

Hey Tracey Welcome aboard and glad you found us. It is a huge relief to find others that understand what you've been through and people to talk to Steph

I was diagnosed with CFS before POTs and I wouldn't let the doctor write that in my chart because of the way you get treated with that diagnosis. After I was diagnosed with POTS and they started to manage my symptoms I mostly over came the severe fatigued that kept me from doing so many things. So my answer to you would be yes. I think that you should probably read more about Dysautonomia and NCS. If you haven't experienced tachycardia maybe you don't have POTS but one of the other things that are closely related. Do you have a blood pressure cuff? Your early morning problem might be a drop of blood pressure and not tachycardia at all. You can also research hypotension, orthostatic intolerance, etc. Mighty mouse has a whole website at the top of the DINET page with many good articles that you can read.

Great article! Thank you for the read. This article is long over due

Goldiedance I'm so sorry for your news. I hope all goes well today. Your in my thoughts & prayers. I'm sorry I don't have personnel experience with this but my aunt just had breast surgery for cancer and she's doing well. Steph

I admire you for wanting to donate but it really isn't a good idea. My hct was 28 before I started getting Epogen and IV Iron. Even so I wouldn't ever donate blood again. Symptoms in this illness occur often because of low volume (hypovolemia.) Donating could increase or worsen your symptoms for many weeks if not months. I would talk to an autonomic specialist before thinking about donating for your own health and welfare. If you want to help why don't you just donate your time for the day or check with your local red cross to see if they have any activities you can participate in. I use to teach first aid and CPR for the red cross. I also worked at many first aid stations at festivals and car races.

Princess Aurora aka BrierRose was the name in one of my favorite Disney movies, yep you guessed it Sleeping Beauty

Doctor's tend to make this mistake but you don't have to have any change in blood pressure at all. That's the way I was when I was first diagnosed with POTS. I just had an increase in heartrate. 3 1/2 years later I do have a drop in my pressure. I would suggest that you do some research, print some of the material that you find supporting your case and take them back to this autonomic specialist. You can help educate this doctor in what he's really seeing and maybe prevent his misdiagnosis for you & others. If you need weblinks let me know and I can give you very credible ones from research studies and doctor's! Steph

In my opinion Dr. Grubb is the best Dr. in the world for this illness. People actually see him from all over the world. He is the most intelligent, knowledgeable, compassionate, sympathetic DOCTOR I've ever met. If it wasn't for Dr. Grubb I would?ve lost everything do to inability to care for myself. I was ready to sell my house, give up my kids and concede to the bed. As for cost, I really have no idea but you could call his office. I don?t know if he?s taking new patients and if he is expect a wait of about a year to get in, I think was the last I heard.

Bren Thank you for taking the time to post information that looks beneficial to us Big thx Steph

I'm not sure Bren I was born in Canton along with most of my family. 3 members of my family have POTS now. 3 have Marfans. Along with all the other weird illnesses in my family. I know that Ohio and West Virginia have some of the worst air ratings of any states because of the coal mines. And they know that Dysautonomia can be brought on by chemical exposure so I don't know about anyone else but it makes me wonder if it was something we were exposed to. One other thing. When I was in my late teens I developed a rare kind of thyroid cancer. Everytime I went to my endocrinologist he would repeatedly ask me if I had ever been exposed to a large dose of radiation and everytime I would tell him No. Now I'm beginning to wonder exactly what I might have been exposed to in my lifetime.

Teflon health screenings set to start DuPont to pay as part of settlement over chemical CHARLESTON, West Virginia (AP) -- Tens of thousands of Ohio and West Virginia residents could be tested over the next year to determine if their health has been affected by drinking water containing a chemical used to make the nonstick substance Teflon. DuPont Co. agreed in February to pay for the screenings to settle a class-action lawsuit. Teflon is one of the company's most popular products; the substance can be found in everything from cookware and clothing to car parts and flooring. The tests will begin this month for residents who receive their drinking water from six public water districts, or from private wells within the districts, where concentrations of ammonium perfluorooctanoate, also known as PFOA and C8, have been found. The water supplies are near DuPont's Washington Works plant, along the Ohio River near Parkersburg. About 80,000 residents live in the districts, and it's hoped at least 60,000 will participate in the screening. "The more participants we have, the more valid the data is going to be," said Dr. Paul Brooks, who will oversee the collection process with retired hospital administrator Art Maher. Both were appointed by the Wood County Circuit Court. Residents will receive $150 to answer a health questionnaire. If they agree to submit a blood sample, they will receive an additional $250. Residents will walk out of the collection centers with a check, Maher said. Only residents who received the water for at least a year before December 3, 2004, are eligible. Each blood sample will be subjected to 51 tests, including those that check for the presence of C8, organ function and cancer markers. The screenings will not test for HIV, drugs or sexually transmitted diseases. DuPont agreed to the health screenings to settle a 2001 lawsuit filed by residents who alleged the company intentionally withheld and misrepresented information concerning the nature and extent of the human health threat posed by C8 in drinking water. About $70 million has been allocated for resident payments and lab work. Though used since World War II, C8's long-term effects on humans are unknown. A federal scientific review panel has said the chemical is "likely" to be carcinogenic to humans, but DuPont officials have disputed the draft report. The panel agreed earlier this week to revise the draft to better reflect opposing viewpoints before submitting it to the U.S. Environmental Protection Agency by July 20. The goal is to complete the collection process in one year and turn the information over to a court-appointed panel of three epidemiologists, Maher said. Based on the findings, DuPont could be required to spend another $235 million to monitor the residents' health. "If they don't find a link, that's the end of the thing," Brooks said. "If they do, it goes into another process with other scientists involved." The settlement also called for DuPont to provide the six water utilities with new treatment equipment to reduce the chemical in water supplies at an estimated cost of $10 million. In a separate matter, DuPont has set aside $15 million to settle EPA complaints that the company failed to report information over two decades about the potential environmental and human health risks of the chemical, although no agreement has been reached. In May, the company was served with a subpoena from a federal grand jury in Washington, D.C., for documents related to the chemical. Copyright 2005 The Associated Press. All rights reserved.This material may not be published, broadcast, rewritten, or redistributed.

Here is one of my favorite articles and you might want to read symptoms - AND at the bottom there are many useful links posted, I love the one titled Mind Experiment for Doctors http://home.att.net/~potsweb/mindexperiment.html

Ariella On the contrary of what some doctors may think; Blood pressure doesn't have to be effected to be POTS. There are many good articles that you can print and give to your doc. When I first started this illness I was only diagnosed with POTS, basically the tachycardia. At least a year into my illness I started having the pressure drops. Here is an article by Dr. Grubb http://www.hcs.gr/Keimena/4_2002/sel%2047-...0Diagnosis'

Katherine are we on track with each other this morning. I love reading these kinds of articles and it's something we need to get out in the open as in the years ahead it might explain a lot. And since Chemicals are one of the possibilities for Dysautonomia it's good to be well informed and it's still thought to be one of the major factors for Gulf War Syndrome. Thank you for sharing this

I haven't posted a news article in several months but when I read this one today I thought of (forgive the loss of name (Julia maybe) from brain deadness this morning) the person who worked in some office in Ohio and the chemicals seeped in from next door. Even the crackers in the drawer tasted funny. Anyway it's a pretty good read and about time they did that kind of study. Unborn babies carry pollutants, study finds By Maggie Fox, Health and Science Correspondent Thu Jul 14,11:28 AM ET Unborn U.S. babies are soaking in a stew of chemicals, including mercury, gasoline byproducts and pesticides, according to a report released on Thursday. Although the effects on the babies are not clear, the survey prompted several members of Congress to press for legislation that would strengthen controls on chemicals in the environment. The report by the Environmental Working Group is based on tests of 10 samples of umbilical-cord blood taken by the American Red Cross. They found an average of 287 contaminants in the blood, including mercury, fire retardants, pesticides and the Teflon chemical PFOA. "These 10 newborn babies ... were born polluted," said New York Rep. Louise Slaughter, who spoke a news conference about the findings on Thursday. "If ever we had proof that our nation's pollution laws aren't working, it's reading the list of industrial chemicals in the bodies of babies who have not yet lived outside the womb," Slaughter, a Democrat, said. Cord blood reflects what the mother passes to the baby through the placenta. "Of the 287 chemicals we detected in umbilical-cord blood, we know that 180 cause cancer in humans or animals, 217 are toxic to the brain and nervous system, and 208 cause birth defects or abnormal development in animal tests," the report said. Blood tests did not show how the chemicals got into the mothers' bodies, or what their effects might be on the babies. MERCURY AND PESTICIDES Among the chemicals found in the cord blood were methylmercury, produced by coal-fired power plants and certain industrial processes. People can breathe it in or eat it in seafood and it causes brain and nerve damage. Also found were polyaromatic hydrocarbons, or PAHs, which are produced by burning gasoline and garbage and which may cause cancer; flame-retardant chemicals called polybrominated dibenzodioxins and furans; and pesticides including DDT and chlordane. The same group analyzed the breast milk of mothers across the United States in 2003 and found varying levels of chemicals, including flame retardants known as PBDEs. This latest analysis also found PBDEs in cord blood. Slaughter had similar tests done on her own blood. "The stunning results show chemicals daily pumping through my vital organs that include PCBs that were banned decades ago as well as chemicals like Teflon that are currently under federal investigation," she said in remarks prepared for the news conference. "I have auto exhaust fumes, flame retardant chemicals, and in all, some 271 harmful substances pulsing through my veins. That's hardly the picture of health I had hoped for, but I've been living in an industrial society for over 70 years." The Government Accountability Office issued a report on Wednesday saying the Environmental Protection Agency does not have the powers it needs to fully regulate toxic chemicals. The GAO, the investigative arm of Congress, found that the EPA's Toxic Substances Control Act gives only "limited assurance" that new chemicals entering the market are safe and said the EPA only rarely assesses chemicals already on the market. "Today, chemicals are being used to make baby bottles, food packaging and other products that have never been fully evaluated for their health effects on children -- and some of these chemicals are turning up in our blood," said New Jersey Democrat Sen. Frank Lautenberg (news, bio, voting record), who plans to co-sponsor a bill to require chemical manufacturers to provide data to the EPA on the health affects of their products.