briarrose

I think your right about the scented ones. Because it's the stronger ones that I"ve used that I have the severe pain. My lymph nodes do swell too, think that accounts for the severe pain. Anyone who has been sick and had there neck nodes swell know the pain that I'm talking about. But when I use the men's sport degree or old spice I have the worst problem. I know that someone was talking about protection from deodorant at ndrf sometime last year before I thought of this and recommended using odaban, but does it protect you from body odor without the pain? And I appreciate people responding to this strange posting, thank you! steph

I was told that I have EDS type III. There is no test for it. They can check you for hypermobility. I'm too tired right now to look up all of the links, will have to add later today/tonight. http://ghr.nlm.nih.gov/ghr/disease/ehlersd...4BA233AFB482B6B http://www.hypermobility.org/ http://www.ehlers-danlos.org/Info%20Sheets/infoEDS.htm http://www.familyvillage.wisc.edu/lib_e-ds.htm

Thx Louby, I appreciate your comments. I started using a natural deodorant last year. Something from Maine. Will look later. It was very gentle but now it's not effective. I've seen that crystal in the store and was thinking about getting that next. Steph

Deanna I'm Sorry if it sounded like I was attacking you. I just get so angry when I hear stories like this, it makes my blood boil. Maybe we should contact some of the other organizations such as the CFS foundation and see if they will work on a joint project with us about public awareness. I just remembered something else I've seen posted before that might help, for simple minded people (sorry I'm still mad) like a school teacher trying to bust a teen. http://www.mychronicillness.com/invisiblei...tlooksogood.htm Steph

I think that the Mind experiment is great, but it is entitled for doctor's. I think Chris was trying to make a point to a group of people that could fundamentally make the relation. If Lisa is trying to make an impression on people that could really care less, than that document isn't going to help much. People first have to get it. Diabetics went through this whole process too. People didn't believe them and their illness. Diabetics didn't get a free ride and they struggled for decades trying to convince the public of their own ailments. (I was trying to find an article that I read about the obstacles diabetics went through just 50 years ago.) And look at all of the chronic fatigue suffers and their non-believers. I'm sorry, I will always feel strongly about this, we need to make a stand for ourselves and our children! Most doctor's (health care professionals) don't understand, what makes you think a teacher (that thinks some teen is trying to pull the wool over his eyes and pull a fast one) is going to get it? If in doubt, just read past posts that others have written about their own experiences. Steph

Sorry for the bad time Lisa. That kind of story just makes me angry. I don't care if your a teenager or an adult. People need to understand this. I have half a mind for you to tell me what your school district is so I can right the administrater. In fact, I would be more than happy to write and supply information to your school district if you would like to give me the information. When is this madness going to stop? We need to be proactive in educating people! Steph

I second what Sue, Jersey girl and EM said, 100%! Tearose - there is no excuse for that kind of BS doctor! He definitely needs a good your firing speech and a copy of his hipocratic oath (including first do no harm.)

EM, Thank you for your response. I?m not familiar with systemic candida. I will look at the documents you sent me though. If it was yeast related wouldn?t she have yeast infections or thrush too? Steph

I apologize in advance for posting this, but please try to read it, I need your help. It doesn?t have anything to do with POTS but if true IBS, it is considered a dysautonomia and I?m wondering if it?s a symptom of things yet to come. My daughter, who just turned 14 a few weeks ago, has had stomach problems for over 2 years. She gets severe stomach cramps, diarrhea, traveling in the car triggers her symptoms and certain smells trigger her symptoms. She has stopped playing sports and doesn?t like to ride in the car anymore. I?ve taken her to 4 different doctors concerning this problem. The first one, her pediatrician didn?t know what to make of it, so they sent her to this jerk pediatric GI doctor. He interviewed her for 10 minutes and told her that she had irritable bowel syndrome. She has never had any blood work or diagnostic imaging done. She has missed over two months of school already since Christmas because she spends half her day in the bathroom or rolling around on the floor in pain. When she started complaining of smell upsetting her stomach, I decided to take her to an allergist. She is allergic to dozens of things, environmental and food products. The allergist told her not to eat wheat products or peanuts ever again. They said with her numerous allergies that her body has probably been pushed over the edge. After a month of not having any wheat or peanut products, she is still having the same symptoms. I finally got her into see a different pediatric GI doctor at a different hospital. They are going to do an upper and lower GI in two weeks to see if she might have colitis, but she too things it is probably irritable bowel. All though she is concerned about the amount of time she spends in the bathroom. I?m now sorry that I haven?t read all of the postings about gut motility that you guys have posted, not sure if they would have provided answers or not. Sometimes it is hard being a single mom with a chronic illness, taking care of a child with this kind of problem. Any insight you guys might have about this or suggestions would be greatly appreciated. Thank you Steph

OK, I was feeling pretty stupid for posting this so I actually had to see if there was anything to it. Thank god I found an answer. And remember I said that it might only be one answer for multiple problems of armpit pain (axillary). I am extremely chemical sensitive. Perfume causes me to have migraines. Recently a sunblock caused me to have severe nausea, thank god I had some zofran or I would have been heaving. Steph http://www.oztoxics.org/cmwg/library/cases...sitivity_1.html

Congrats to you What a great feeling and huge accomplishment! I would go nuts if I couldn't drive. Yes, there have been those times where I drove and I shouldn't have. I won't do it again that's for sure, especially now that I know more. Steph

I think I?ve made at least one discovery about that horrible armpit pain that some of us may get. I say one discovery because I don?t think that it accounts for all of it. Can?t remember when it started, if it was one year ago or two, I?m thinking two years ago; I would have this incredible pain in my armpits. Sometimes it was so bad that I would wake up out of the middle of a dead sleep and be in excruciating pain. It could last for a couple of days and I might occasionally have some slight swelling in more than one spot. I went to the doctor twice and he did nothing for me either time, he didn?t understand what I was talking about. Bare with me, this is going to sound strange. One brand of deodorant rarely last more than 6 months because I think my body chemistry changes and it is no longer effective against body odor, I reek when I sweat. Well I?m about out of brands of deodorant to try so I went back to one I?ve used before. Within a day it caused me to have that severe pain in my pits that I haven?t experienced for several months now. I couldn?t believe it so I switched back and forth between the one that gives me very little protection and the one that is very strong. Sure enough the stronger Man?s deodorant that I have used before makes my armpits swell and painful. Don?t know, might be something to it. Steph

I've always burned easily so I can't help you there, I'm fair skinned. Some medications do make you sensitive to the sun. Here is an article that go into detial about meds http://www.fda.gov/fdac/features/496_sun.html I had a new problem with the sun last summer. When I went back to the midwest for treatment, we did alot of driving. The extreme sunlight would make my eyes spasm. I only had relief when I wore my sunglasses. Steph

Jackie Your welcome! I love that description of a mind experiment for doctors. Chris couldn't have done a better job. I hand it out to nurses too. I should fax it too every doctor's office I know of Steph

Come on! Cedar Point is a great amusement park! Been there a dozen times since I was a toddler. Steph

Actually, the only reason I found Dr. Grubb was by accident. A friend of mine was visiting St. Paul and I had just got a suspected diagnosis. I asked him if he would stop at the NDRF foundation and pick me up whatever information they might have on hand so I could compare my symptoms. He came back with the last conference tapes. I was so impressed by Dr. Grubb's knowledge base and presentation, I knew he was the doctor for me. I didn't know he was in Ohio, just a strange coincidence. Steph

I had a horrible experience too when I was first admitted. The nurses on the cardiology floor were telling me that "I was the wellest patient on the floor." Their comments made me feel guilty for being there and I just wanted to go home. Some of the doctors were telling me that I was going though stress and that would explain my tachycardia. Other doctors said No. You know, same ole, same ole. Anyway, Everyone here can start educating people by filing complaints and handing out a description of POTS. I do it with all of my doctors now. I have printed POTS notebooks with material that I have collected and handed them out to my regular doctors. If we all do a little, word will spread and eventually we'll feel like we've made progress. As for the doctor experiment it's off of Potsweb http://home.att.net/%7Epotsweb/POTS.html Doctor's mind experiment (one of my favorites and something I hand out to doctors, thank you Chris for writing such a great document!) http://home.att.net/~potsweb/mindexperiment.html Mind Experiment for Doctors People with Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH) have a difficult time obtaining appropriate medical care and are often subject to rude treatment by doctors and medical workers. Aside for a few advanced centers with specialized autonomic dysfunction clinics (Johns Hopkins, Mayo Clinic, Vanderbilt University, Medical College of Ohio), the medical community does not seem to want to take the time to understand the phenomena of chronic orthostatic intolerance. Here is a quick mind experiment that can help physicians appreciate the problems patients with these dysautonomia disorders face every day. The physician should imagine the following scenario personally for themselves, their spouses, and for their own children. The physician and/or family member does not eat or drink anything for 24 hours straight, a complete food and water fast. Next the subject goes to the local Red Cross and donates a full pint of blood. Then, using all available will power, the subject pushes himself home and turns up the thermostat to 100 degrees Fahrenheit. Finally, the subject attempts to stand motionless for a period of one hour straight. What would happen to you physiologically in the situation described above? First you would experience severe flu like symptoms, muscle aches, fever, chills, sweating, and headache. You would become lightheaded, dizzy, develop a rapid heart rate, chest and heart pain, and almost certainly pass out, possibly injuring yourself seriously. The unnatural vasodilation and abnormally low blood volume many patients with POTS and NMH suffer from can produce the same basic symptoms, caused by orthostatic stress, as the above scenario. It is interesting to note that is some cases the blood volume of POTS and/or NMH patients may be more than 30% below normal. There are millions of humans world wide who experience orthostatic stress, the stress of standing up or even sitting up, every single day of their lives. Imagine being inflicted with this horrible condition and going to your local physician seeking help. Now imagine that instead of getting help and understanding your doctor blames you for your own severe symptoms and harshly interrogates you as if you were a common criminal. As author of this Web site, I have received over 1,800 letters (as of February, 2002) from patients all over the world, including the USA, Canada, Australia, Taiwan, the United Kingdom, Ireland, France, Germany, Sweden, Denmark, Norway, Belgium, Holland, Spain, Argentina, Columbia, and the Dominican Republic. Many patients I hear from have horror stories to tell about their shockingly bad treatment at the hands of local physicians. Medical school professors, physicians, and several hundred registered nurses with POTS and/or NMH have also written me. Even many of these medical professionals report being treated badly by members of their own profession while trying to obtain a diagnosis for their illness. After reading hundreds of heartbreaking letters from men, women, and even young children who were traumatized by ignorant doctors, it is clear that current medical treatment for orthostatic intolerance disorders often represents a criminal abuse of patients. Blaming the patient for their symptoms is not good science, and is the lowest expression of inhumanity in our high speed, profit driven medical profession. In past years the same moral crimes were committed against people with MS, diabetes, polio, and those with other poorly understood illnesses of the day. This sad situation appears to be slowly getting better in Midwestern and Eastern areas of the United States, while the West lags far behind. The gradual but positive trend is that more patients in major population centers are being diagnosed quickly and treated with the dignity and respect they deserve. It is essential that all physicians become educated in how to diagnose and treat orthostatic intolerance syndromes rather than continue to abuse their own patients out of ignorance and arrogance. An obvious example of this problem is one nationally known doctor who has become so ego inflated that he advertised his radio talk show by declaring that he was "never wrong." How can a God be wrong? The medical community must establish accountability in the system so that disciplinary action can be taken against abusive doctors, including fines and/or revocation of their licenses to practice medicine. Currently, physicians are treated as royalty, with no controls on their behavior, and no boss or governing body to keep their egos in check. Power corrupts and unlike our politicians, our police, and our school teachers, physicians are accountable to no one, and thus patients continue to suffer abuse. One possible solution to this situation, to bring doctors down from Mount Olympus and thus made accountable for their behavior, is to have every state develop lay (non-doctor) citizens' review boards to mediate disputes between patients and doctors. Just as police departments cannot be expected to objectively investigate themselves, doctors cannot reliably monitor the behavior of other doctors. The knee jerk reaction is to circle the wagons and stick up for fellow professionals, patients be ******. The medical profession is currently without effective codes of conduct and patients' rights are routinely abused. Civilian review boards would have sympathies for both overworked doctors and abused patents, and could easily throw out frivolous and erroneous complaints, while correcting serious issues of professional accountability at a much lower societal cost than filing expensive lawsuits to resolve issues of simple conduct. The HMO insurance system has made doctor-patent relations very difficult in the United States. Primary care physicians are forced to see too many patients in a day to maintain a relaxed frame of mind, which is so essential for good judgment. Recent studies show that up to 98,000 Americans die each year from medical mistakes, and stressed-out doctors undoubtedly make more mistakes than happier, well rested MDs. HMOs should greatly increase fees paid to primary care physicians so that they are not overworked, angry, and more apt to abuse patients and make medical blunders which can cost lives. It is a false savings to provide bad medicine on the cheap when lives are at stake, as well as the dignity of both doctor and patient. Christopher Calder

Bren Contact the local hospitals. Many of them have support groups already set up. I'm pretty sure you probably won't find a POTS support group already in place, but many of the hospitals will advise you what it takes to get one going. I believe it's usually community health or the medical education department that you contact. Steph

I have this problem. When I had my TTT they had to give me isuprel, that set off my POTS symptoms immediately. I went into complete body shakes. I didn't think my legs would hold me for the 30 minutes that they wanted me to stand there. I kept telling the cardiologist that my legs were weak and I wasn't sure if I was going to make it. I went through such blood pressure swings from low to high and the tachycardia. It wasn't easy but I made it. Later I got my medical records and it said that my TTT was positive for POTS and that I tolerated the procedure well. No mention of the complete body tremors and weak legs. Oh Well! No Credit for the endurance I withstood.

Jackie I know what you mean about reading some of the crap that they put in your medical records, it gives you a chance to see how your doctors really feel about you. What's worse is when they say it to your face over and over again. Never really listening to you tell them that you are truly medically ill. When you have no history of mental illness and just because they lack the medical experience or knowledge of your symptoms, let alone the persistence to keep looking for you. You just end up going home and suffering! Can you tell that I'm at the very least bitter from my previous experiences. My ONLY saving grace is that I have worked in the emergency room for 10 years and I was treated by doctors here in the ED that knew me and knew that I was experiencing what I was saying. They didn't question my mental stability for even a second. So much for my primary doctors having so much faith in me. When they admitted me to the cardiology floor, the nurses made me feel horrible by telling me that "I was the most well patient on the whole floor" as my heart rate was going along at 160 trying to sleep, I certainly felt far from well. Some of the doctors told me that my symptoms couldn't be brought on by anxiety, others said it could. I told all of them that I wasn't suffering from anxiety, that I wasn't trying to make my heart and body do these weird things. We need to educate the medical community and the public (all the poor people out there that might be going through this nightmere!) Steph

Jackie go for it! I think we need to come up with content. How much story do we want to give. When it began, what we've been through, medications, treatement, tests, symptoms, daily life, etc.? Denabob, yes it would be nice to educate doctors. I wonder if we could find some grant money somewhere to help with publishing pamphlets to leave at doctor's offices. Quality of life is a study they did at Mayo about POTS. http://www.mayo.edu/proceedings/2002/jun/7706a4.pdf Steph

Which dysautonomia does your friend have? Does she experience tachycardia? Here are some websites for you to check out. http://www.ndrf.org/ http://home.att.net/~potsweb/POTS.html http://www.ndrf.org/

Great idea about getting our experiences publsihed. I don't mind sharing we just need someone to organize and push the publishers. Steph

I?m going to start off with my opinion about IV fluids or you can just skip down to the attachments about Florinef and Midodrine. It is my feeling and experiences, after having this full blown godforsaken illness for the past 2 ? years (undiagnosed for years before) that when were sick and we do nothing the exacerbation of symptoms for me can last for 4-6 weeks. If my blood pressure drops below 90 or my lowest 60/40, I?m lacking fluids. I can drink plenty of water, Gatorade, etc. but if I?m sick or had an unusually heavy menstrual cycle, I can never get caught up. I need the assistance of intravenous fluids (I?m absolutely sure of this based on plenty of experience.) Why should you torture yourself for multiple weeks, trying to regulate your fluids and electrolytes when there is a simple fix that allows you to get a handle on your situation and only suffer 1-3 days of ****. Yes, there are doctors that are documented in their personal opinions about whether or not IV fluids are beneficial. Let me restate it?s their personnel opinion. There hasn?t been a study and consider how many variables there would be if they did a study regarding IV fluids and oral fluid intake. I?ll take our personnel experiences over any doctor?s word on what we SHOULD be feeling. Doctor?s are not gods and they tend to go by word of mouth instead of evidence. Let me remind everyone of you, POTS & Dysautonomia are pretty uncharted territory. The government has not released money to investigate nor provide pharmeucitcals with research money to relieve us of our symptoms. Therefore we rely on drugs that have been produced for other illnesses and are handed to us because their side effects treat our symptoms, i.e. hypotension, ADD, seizures. However, I think that we can all say that we have our personal opinions and experiences about how doctors have treated us and above all it is our own personal opinions about whether or not they have taken us seriously and aided us in our ongoing suffering with our symptoms/illness. You be your own judge! Steph Midodrine & Florinef ? what?s the difference Midodrine ? is an antihypotensive/vasopressor. Midodrine (MI-doe-dreen) is a medicine used to treat low blood pressure (hypotension). It works by stimulating nerve endings in blood vessels, causing the blood vessels to tighten. As a result, blood pressure is increased. http://www.docguide.com/dg.nsf/PrintPrint/...52566480049B079 Florinef ? Corticosteroids and analogues. Fludrocortisone ( floo-droe-KOR-tis-sone) is a corticosteroid (kor-ti-koe-STE-roid) (cortisone-like medicine). It belongs to the family of medicines called steroids. Your body naturally produces similar corticosteroids, which are necessary to maintain the balance of certain minerals and water for good health. If your body does not produce enough corticosteroids, your doctor may have prescribed this medicine to help make up the difference. PHARMACOLOGICAL ACTION Although the physiological action of fludrocortisone is similar in kind to that of hydrocortisone, its effects, particularly on electrolyte balance, and also on carbohydrate metabolism are considerably heightened and prolonged. Since fludrocortisone acetate exerts so profound a mineralocorticoid effect, its usefulness is limited to clinical applications which utilize this effect, and it should not be used as an anti-inflammatory agent for the treatment of such cortisone-responsive diseases as rheumatoid arthritis, certain allergies and dermatoses. Small oral doses of fludrocortisone acetate produce marked sodium retention and increased urinary potassium excretion. Fludrocortisone acetate also causes a rise in blood pressure, apparently because of these effects on electrolyte levels. In larger doses, the steroid inhibits endogenous adrenal cortical secretion, thymic activity, and pituitary corticotrophin secretion; promotes the deposition of liver glycogen; and, unless protein intake is adequate, induces negative nitrogen balance. The approximate half-life of fludrocortisone is 18 to 36 hours. It is highly protein bound and is eliminated by the kidneys, mostly as inactive metabolites. Duration of action is 1 to 2 days. WARNINGS Because of its marked effect on sodium retention, the use of fludrocortisone acetate in the treatment of conditions other than those indicated herein is not advised. Fludrocortisone increases calcium excretion, which may predispose to osteoporosis or aggravate preexisting osteoporosis. Fludrocortisone may mask some signs of infection, and new infections may appear during its use. There may be decreased resistance and inability to localize infection when fludrocortisone is used. Chicken pox, measles, herpes zoster, or threadworm infestations, for example, can have a more serious or even fatal course in non-immune children or adults on fludrocortisone. Patients should not be vaccinated or immunized while on fludrocortisone therapy, especially on high doses, because of a lack of antibody response predisposing to medical complications, particularly neurological ones. The use of fludrocortisone acetate tablets in patients with active tuberculosis should be restricted to cases on fulminating or disseminated tuberculosis in which fludrocortisone is used for the management of the disease in conjunction with an appropriate antituberculous regimen. Chemoprophylaxis should be used in patients with latent tuberculosis or tuberculin reactivity who are taking fludrocortisone. Prolonged use of fludrocortisone may produce posterior subcapsular cataracts or glaucoma, with possible damage to the optic nerve. Prolonged use may also enhance the likelihood of secondary ocular infections.

Sorry about your side effects. I tried that medication last fall, I thought it was going to be my lifeline. I had the crawling feeling, especially the scalp for the first day, by the second day I had it from head to toe and then it escalated to extreme itching everywhere. Dr. Grubb's nurse told me to stop taking it and not to try it again. I take my other meds and just try to deal with the blood pressure swings now. Somedays when I drop below 90, I have to go have IV fluids (if I don't wait for 3 days it helps.)