briarrose

I hate the "Well doctor mentallity" Basically meaning, he doesn't know what it's like to be ill! He should've issued you the disability pass. You can log onto your local DMV website and see what they say about disabilities and driving. Tachycardia isn't a reason to take your license away! Florinef isn't an anti-depressant or even used to treat that. It is a corticosteroid used to help balance minerals and water in your body. I don't know how long you've been seeing this doctor or if you really like him. But this is my advice for what ever it's worth. If you want to stay with him - sit down and tell him if he can't take you seriously and LISTEN to you then he's fired. Or save yourself the trouble and find someone that has the experience of Dysautonomia, POTS, OI and the other problems we have. Steph (No patience for idiocy and inhumanity anymore)

They talk about this issue in the Dysautonomia handbook that can be downloaded off the NDRF website. Page 107-111. Also referenced page 86, 70, 71 Seems like somewhere else in the book too.

BTW - I didn't know what all my rhythms were until I asked for a copy of my heart monitor reports. They neglected to tell me, just told me not to worry. They said sinus tach, PVC's and PAC's, it wasn't until I got the report and saw the V-tach and they now occasionally mention it to me.

Ok - I've had enough king of heart event monitors now to know pretty accurately what rhythms I'm experiencing. When I have shortness of breath and a cough with a flutter it has been documented as non-sustained V-tach. The other stuff that I have is usually PVC's and PAC's, no real problems except for the horrible feeling.

I've had problems with anemia since the onset of tachycardia. My H & H dropped so much that they finally started me on weekly erythropoetin and IV iron. The combination has done wonders for my quality of life. I have less brain fog, more energy and endurance! If you have any questions please feel free to email me. steph

Shelby thx for the bump. Today is the first day of National Chronic Illness Awareness Week! Please advocate for all. thx Steph

Tremors were one of the first onset symptoms with the tachycardia and well before any medication. I've had them pretty well under control. Saturday I had a horrible adrenaline rush when I thought something horrible had happened and it took me several hours to get over the tremors from that event. The more relaxed I am, keeping the tachycardia down and just controlling my emotions, usually the better my tremors.

Congratulations to both of you!

I love Dr. Grubb! He has been very beneficial for me. I actually have some quality of life back. I was on the brink of being bedridden when I went to see him the first time. He is extremely understanding, informative, intelligent and he listens to what I had to say.

Amy It was nice meeting you too. I enjoyed our dinner and meeting everyone else. I hope we can do it again next summer. Feel free to email me anytime. Steph aka - briarrose (one of my favorite Disney characters)

I guess I hesitate to answer because my POTS/NMH wasn't brought on by an accident. 1) My ear problems have been mostly a muffled or ringing sound. Always worse when I'm anemic and hypovolemic. I rarely have pain but if I do it is usually short and sharp. I have had muscle spasms in my ears since I was about 10 years old. The doctor could actually put the stethoscope up to my ear and hear what I was hearing, kind of a clicking sound. 2) Chest pain - I know that some people here suffer severe chest pain. I would say that my chest pain is usually mild. I can have palpitations and flutters, all documented on monitors as PVC's, PAC's and V-Tach. My problem is usually severe back pain, behind the heart. Last time I had severe back pain, I spent 14 hours in the ER. 3) Can you re-phrase the first part of your question, it can mean many different things. I don't have diabetes. I do have NMH. I have a problem with joint/muscle/bone pain, rashes, tingling/numbness in my extremeties, severe spasms everywhere and visual disturbances. POTS can be a primary diagnosis. I've often worried about PAF and MSA too. I had kind of thrown that out here once before and felt better after getting some feedback from others. 4) I can totally relate with this one 100%. 3 years ago, I only had problems with the tachycardia, not blood pressure. But now, I get the same kinds of readings as you. My lowest pressure so far was 60/40, I couldn't get off the floor. When my pressure gets consistantly down in the 80's I go into my doctor for IV fluid, it normally means that I'm hypovolemic or dehydrated. This is one of the worst things that I try to regulate. The doctors are frustrated too. Between giving me beta-blocker to keep the heart rate down but not too much to make my hypotension worse. I hope this helped a little. Good luck to you on Mayo Clinic.

Sorry, have never heard of this test.

Sorry now I have a minute. That's pretty much why I decided to see Dr. Grubb. I needed answers from someone with the experience of the illness. I travel to see Dr. Grubb from out of state and my doctor was kind of enough to do the leg work with the insurance company so that it would be covered. He explained to the ins co. that it was a rare chronic illness and that Dr. Grubb was a specialist in this area. Thank god that this all took place because the treatment Dr. Grubb has done for me over the past year has given me back some quality of life. Let me stress that it didn't come over night and I had to try different things.

Dr. Blair Grubb 3000 Arlington Avenue Toledo, OH 43614 800-321-8383 ask fro Dr. Grubb's office Sorry, I don't know anything about insurance for their office, you'll have to call and ask. The Hilton hotel on campus that ajoins the MCO offers discounts for patients, just tell them that you are one. Hilton Toledo 3100 Glendale Avenue Toledo, Ohio, US, 43614-2500 1-419-381-6800 sorry to be short, flying out the door.

This is from the CFID's link above - CFID's of America website Diagnosis: Orthostatic Intolerance (OI) Orthostatic intolerance (OI) is the development of symptoms while standing or sitting upright.1 It has been associated with chronic fatigue and immune dysfunction syndrome (CFIDS) in both adults and children.2,3,4,5,6,7 The connection between OI and CFIDS was first introduced in 1995,8 by Rowe and associates at Johns Hopkins University, who identified neurally mediated hypotension (NMH) in CFIDS patients. Since 1995, scientists have learned much more about the broader problem of OI in CFIDS, of which NMH is just one form. It is now thought that many CFIDS patients (up to 97% in some studies) have some form of OI and it seems to be a particular problem in youth with CFIDS. 7,8,9,10 Types of OI There are many types of OI, but two forms have been linked with CFIDS in research studies: NMH and postural orthostatic tachycardia syndrome (POTS). NMH is a precipitous drop (at least 20-25 mm Hg) in systolic blood pressure when standing. The blood pressure drop is accompanied or preceded by an increase in symptoms.2 POTS is a rapid increase in heart rate (pulse) of more than 30 beats per minute (bpm) from baseline, or to more than 120 bpm total, during the first 10 minutes of standing.1 It is also known as chronic orthostatic intolerance, or COI.11 The blood pressure and heart rate changes in NMH and POTS are accompanied by orthostatic symptoms such as lightheadedness, dizziness, nausea, fatigue, tremors, breathing or swallowing difficulties, headache, visual disturbances, sweating and pallor. Many patients develop swollen, bluish legs, providing evidence of blood pooling in the lower part of the body.10 Testing Most doctors are familiar with orthostatic hypotension (OH), which can result in fainting (or syncope, pronounced "sin-coh-pee") very quickly after standing, and can be diagnosed with a simple in-office test of taking the blood pressure first while lying down and again upon standing. Unlike those with OH, which occurs within the first three minutes of standing,12 CFIDS patients with NMH or POTS often have a delayed form13,14 of orthostatic intolerance, meaning that heart rate and blood pressure changes don't develop for many minutes after standing, making the standard in-office test for acute orthostatic hypotension ineffective in diagnosis. A tilt table test in CFS is considered to be positive if a patient experiences orthostatic symptoms and blood pressure and/or heart rate changes, whether or not he or she faints.2 Patients typically undergo a head-up tilt table test (HUT)15 as an outpatient in a hospital or cardiology office to get a definitive diagnosis. Since the HUT reproduces the symptoms of NMH and POTS, patients often feel worse during and after the test. Some testers administer IV saline following the test to reduce the occurrence of prolonged symptoms. Dr. David Streeten, a researcher who studied circulatory problems, and who collaborated with CFIDS clinician Dr. David S. Bell, favored the use of a prolonged standing test as more representative of a patient's daily symptoms and experiences than the HUT.16 Blood pressure and heart rate are measured every few minutes while patients lie quietly for 30 minutes and again as they stand quiet and motionless for 60 minutes, or until severe symptoms develop. It is very important that either this test or the HUT be done under close medical supervision, as serious complications, including brief periods of very slow heart rate, can occur during the test. Pathophysiology There are several hypothesized causes of NMH and POTS relevant to CFIDS; regardless of the cause, all lead to inadequate blood circulation that may reduce the amount of blood getting back to the heart and brain. Patients may have low blood volume throughout the body17,18,19 or their blood may pool excessively in the extremities10,11 or both. When healthy people stand, gravity causes about 750 ml of blood to fall to the abdomen and legs, resulting in a decrease in blood flow to the brain.20 In patients with POTS, cerebral blood flow decreases more prominently while standing.21 In one study of adolescents, the amount of blood that pooled in the legs was highest in CFIDS patients and second highest in POTS patients, as determined by measuring the circumference of their calves while lying down and again while standing.7 When the heart receives less blood from the limbs during standing, the brain releases chemicals and alters the pulse and blood pressure in an effort to get the blood flowing upwards again. When this chemical response is accentuated, as in NMH and POTS, patients can develop a rapid heart rate (tachycardia), low blood pressure (hypotension) and orthostatic symptoms (see "Types of OI" above). CFIDS patients can have either NMH or POTS, and some have both conditions. Researchers have identified several physiological abnormalities in CFIDS patients that are consistent with autonomic nervous system problems such as NMH and POTS. In five studies, adults and adolescents with CFIDS had elevated heart rates at rest compared to healthy and sedentary controls,5,7,9,22,23, although two studies found no difference.2,24Heart rate further increased when patients underwent a tilt test, a finding consistent with POTS.5,7,23 In addition, three studies - one in adults5 and two in adolescents11,6 - found that heart rate variability is significantly reduced in CFS compared to controls. This means that instead of having a heart rate that changes appropriately when faced with orthostatic stress, many CFS patients have reduced modulation of their heart rate, suggesting impairment of the autonomic nervous system.11 In contrast, one study of adults with CFS found that heart rate variability is similar to that in controls.25 Treatment Effective treatment for NMH and POTS in CFIDS must be individualized. In general, treatment for POTS and NMH helps greatly to alleviate some symptoms, but rarely fully resolves the CFIDS. The first line of treatment should be non-medical interventions, such as increasing fluids and salt, tilting the head of the bed up a few degrees, wearing compression garments (such as support hose, girdles or abdominal binders), and learning to avoid and cope with things that can make OI worse (such as standing in long lines, being in warm environments and eating large, heavy meals). If these are not effective, doctors may introduce pharmaceutical treatments such as fludrocortisone (Florinef) to treat low blood volume, and vasoconstrictor medications, including methylphenidate (Ritalin), dextroamphetamine (Dexedrine) and midodrine (ProAmatine) to treat blood pooling, and sometimes drugs to block the release or effect of epinephrine and norepinephrine. Selective serotonin reuptake inhibitors (SSRIs) have been used with some success in patients with POTS, and one randomized trial has demonstrated the efficacy of paroxetine (Paxil) for those with recurrent syncope due to NMH.26 Although randomized trials of treatment for POTS have not been performed, other randomized trials in those with recurrent syncope due to NMH have demonstrated efficacy for atenolol, midodrine and enalapril.27 It is unclear whether these medications will work in CFIDS. Intravenous saline can help reduce symptoms, especially following HUT or other acute exacerbations of symptoms. Common syncope treatments beta-blockers and clonidine may be less effective in POTS and may reflect different causes for POTS and simple fainting. Conclusion Further research is required to determine how orthostatic intolerance is involved in CFIDS. It is clear from past studies that OI is associated with CFIDS, but the degree and meaning of that association is still a focus of vigorous research.

Thanks for helping put the word out. Who is Sharon Osbourne?

National Invisible Chronic Illness Awareness Week, September 20-26, 2004. I received permission from my manager and hospital to post a bulletin board and flyers for this very important event. It's important to get the word out Here is the back of the t-shirt from rest ministries advocacy pkg. http://www.mychronicillness.com/invisiblei...llness/home.htm 33 WAYS TO ENCOURAGE A CHRONICALLY ILL FRIEND Be patient when I can?t explain myself * Stick around. Illness gets lonely * Do laundry * Recognize my pain hurts, even though it may not be as bad as some people?s * Just listen * Refrain from sharing farfetched cures. I?ve heard them all. * Don?t get upset when I cancel plans * Loan me good books you?ve read or CD?s that have encouraged you. * Believe the illness exists * Don?t say, ?snap out of it!? * Yes, I know my illness is caused by stress. * When you don?t know what to say, just tell me you care. * I know I look good, but looks can be deceptive * Remember me in your prayers. * Tell me I?m doing a great job of coping. * Remember my whole family is effected by my illness. * Don?t be afraid to share the challenges going on in your life too. They are important to me. * No, you won?t catch it. * Take the elevator with me. * Understand God heals in His timing. * Keep me laughing. * My immune system is very fragile. Please wait until you are completely well before you visit. * Share how you stay encouraged during difficult times. * Understand that though your ?normal? and my ?normal? will never be the same but we can still be friends. * Try not to tell me, ?everything will be just fine.? * Give gentle hugs. * Ask me to go do things with you. I won?t always be able to go, but I still want to be included * Sometimes I want to talk, sometimes not. * Tell me how I can encourage you. I don?t want it to be all about me. * Basics, like errands or help cleaning, mean more than you will ever know * Remember that silly things like the weather significantly can change my pain level. * I don?t expect you to fix it, just hang in there with me. * Know you mean the world to me, even when I don?t say it. I've also enjoyed reading some of the excerpts from this website, Sherri is very inspirational. http://www.myida.org/

to add to what I was trying to say this morning. I think I voted for the metal bracelets and am glad I did. I was just wondering about everyday people, not POTS, they've already spoken for themselves. You guys have done well and this is all very exciting. thx all that have worked on this project!

In my opinion this is a tough question to answer. I'm sure even the best doctor's would have a struggle. I asked DR. Grubb this exact question and I can't remember his exact answer, I knew I should have taken a darn tape recorder with me. But basically they overlap one another. I went to a chronic fatigue support group meeting a few months back and they corrected me when I started talking about chronic fatigue and chronic fatigue syndrome and they reminded me that there was a huge difference. Yep, they're right. And there is also CFID's.

I see more people every day wearing the Lance Armstrong bracelets. I'm wondering if we should have thought about how sucessful they were going to be and have one made of the same material, so that some of those people can wear 2 at a time, just different colors? This is one of those mornings where I'm just kind of airing my thoughts without really thinking, sorry. I'm just wondering if people would be willing to wear 2 different bracelets, I guess? I can't wait until you guys finish up, I'm dying to start ours

I'm told many CFID's patients actually have POTS. CFID's = Chronic fatigue immune defiencey syndrome CFID's puts out a very nice website too. They have a web page in which you can take a short questionnaire that they offer. http://www.cfids.org/about-cfids/do-i-have-cfids.asp here was my result These conditions share many symptoms with CFIDS and can often co-exist. It may be more challenging to make a diagnosis of CFIDS if you already have one of these conditions. However, treatment is available for several of these disorders and may help alleviate symptoms and restore some function. Consult our Related Conditions section or a health care provider for more information about these conditions. Fibromyalgia Gastrointestinal Problems Gulf War Illness Multiple Chemical Sensitivities/Environmental Illness Orthostatic Intolerance

One doesn't pick up where the other one stops, it's not like that. My understanding is that they overlap. This web site offers information about chronic fatigue syndrome (CFS) and its diagnosis and treatment. In general, in order to receive a diagnosis of chronic fatigue syndrome, a patient must satisfy two criteria: Have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis, and Concurrently have four or more of the following symptoms: substantial impairment in short-term memory or concentration, sore throat, tender lymph nodes, muscle pain, multi-joint pain without swelling or redness, headaches of a new type, pattern or severity, unrefreshing sleep, and post-exertional malaise lasting more than 24 hours. http://www.cdc.gov/ncidod/diseases/cfs/info.htm You might also want to look at the ndrf website and down load the book they offer through there, I believe it mentions this problem. http://www.ndrf.org/orthostat.htm

The info card is a great idea! I'm glad that someone thought of that, especially for my poor cognitive days when I can barely remember my name, let alone explaining what the heck this means steph

I took Quinine for daytime muscle cramps in my legs and it seemed to be beneficial for awhile. Anyway Nocturnal Myoclonus Periodic involuntary leg movements or jerking motions during sleep may cause a lighter, less restful sleep. Restless Legs Syndrome Involuntary, periodic nocturnal leg movements disrupt sleep and cause leg discomfort once you awaken. Sleep Apnea Apnea sufferers stop breathing for 10 to 60 seconds or longer and often awake with a loud snort or jerking motion when they gasp for air, resulting in disruptions to sleep several times during the night and contributing to increased fatigue and sleepiness during the day. Repetitive violent jerking can arise from sleep-related seizures.

I'll try to work on that Right now I'm focusing much of my energy at work and trying to get our hospital to recognize and put out information on National Invisible Chronic Illness Awareness Week which is September 20-26, 2004. http://www.mychronicillness.com/invisiblei...llness/home.htm