BuddyLeesWife

I use the medscape advanced search feature quite often - I like it because you can sort the articles by publish date so you always see the newest and most current. I did an advanced search on "IBS and autonomic" and also "gastroenterology". It looks as though they are trying to establish a Gastroenterology resources page but so far the only information out there is on Inflammatory Bowel Disease and Crohn's disease. www.medscape.com It requires a free one time log-in - I signed in as a medical professional.

The following excerpt is from an article titled Exercise and Hypertension by the American Council on Exercise Endurance activities such as walking, swimming, cycling and low-impact aerobics should be the core of the exercise program. Exercises that include an intense isometric component that can cause extreme and adverse fluctuations in blood pressure should be avoided. As aerobic conditioning improves, add low resistance, high repetition weight training. Circuit training is preferred over free weights. During weight training, holding one's breath should be avoided because it can result in large fluctuations in blood pressure and increase the potential of passing out or, in some individuals, possibly result in life threatening events such as abnormal heart rhythms. http://www.acefitness.org/fitfacts/fitfact....cfm?itemid=110

I had that same virus - it is awful! So violent that I was sure I had food poisioning and that I was going to have to be taken to the hospital. Between "explosions" all I could think of was what would happen if my husband contracted it (he has NCS) because drinking anything was not an option - one sip and the body revolted. I quarantined myself and fortunately it passed him by. My only suggestion if you get this is to have ice chips and juice pops available to suck on - you'll still "lose" them after about 15 minutes but I felt that the juice pops helped somewhat (make your color selection wisely )

Have they checked you for anemia? I had severe bleeding due to fibroids and it caused me to become anemic - I felt awful. I copied the Anemia Quotient questionnaire below so you can see some of the symptoms (look familiar?). http://www.anemia.com/do/dotalk.html This questionnaire is an important first step toward improving your health. Your answers to these questions can help your doctor determine if you have symptoms of anemia. Please answer every question to the best of your ability, print out your answers, and discuss them with your doctor.* *This quiz will not provide you with an answer. Only a healthcare professional can determine if you have anemia or not. Since you were diagnosed with your serious medical condition: Have you felt unusually tired or fatigued? Yes No Have you experienced unusual weakness? Yes No Have you experienced shortness of breath? Yes No Have you felt easily confused or lost your concentration? Yes No Have you felt dizzy or have you fainted? Yes No Has your skin become unusually pale, including decreased pinkness in your lips, gums, lining of your eyelids, nail beds and palms? Yes No Have you experienced a rapid heart beat? Yes No Have you been feeling unusually cold? Yes No Have you been feeling sad or depressed? Yes No Do you know if your hemoglobin count is between 12 and 18 g/dL (grams per deciliter) of blood? Yes No

My husband (suffers from NCS) just had one and the procedure was a breeze, he was slightly dizzy for a day afterwards but the prep was not pleasant. I had to beg him to finish the "overload solution" - a mix of laxative and electrolyte cherry flavored solution that he claims he could barely gag down. When the doctor met with us after the procedure he told us that next time we should ask for the Gatorade prep. Gatorade would surely taste better.

How to Avoid Deep Vein Thrombosis on Long Plane Flights I always post this article when this topic comes up. Even though your flight will not be that long, you might want to consider some of the exercises that are listed. http://www.acefitness.org/fitfacts/fitfact...?itemid=290What precautions can you take? In addition, you can Walk around the cabin every 15 to 30 minutes if possible during flights of three hours or longer Do some simple stretching exercises while seated Sleep only for short periods?up to 30 minutes at a time Limit alcohol and caffeine, which may contribute to dehydration Bring your own water bottle, or request water if your flight has a beverage service Walk briskly through the airport during layovers In-flight exercises Ankle turns: Lift your feet off the floor and move your toes in a circle, one foot moving clockwise and the other foot moving counterclockwise. Change direction and repeat. Foot lifts: Place your heels on the floor and bring your toes up as high as you can. Then put both feet back flat on the floor. Then pull your heels up while keeping the balls of your feet on the floor. Knee lifts: While keeping your knee bent, raise your leg while tensing your thigh muscle. Repeat 20 to 30 times, alternating legs. Shoulder rolls: Raise your shoulders and then move them forward, downward and then backward in a smooth circular movement. Arm bends: Start with your elbows on the armrests and your hands pointed forward so that your lower and upper arms make a 90-degree angle. Take turns moving your left and then your right hand toward your chest and back, and continue for 30 seconds. Knee to chest: Bend slightly forward. Fold your hands together around your left knee and pull it toward your chest. Hold this position for 15 seconds and let your knee drop slowly. Change legs and repeat. Forward bends: Place both feet on the floor and pull your abdomen in. Bend slowly forward and ''walk'' your fingers along your shins to your ankles. Hold for 15 seconds and sit up slowly. Upper-body stretch: Stretch both arms over your head. With your right hand, grab your left wrist and pull it slowly to the right. Hold for 15 seconds and change arms. Shoulder stretch: With your right hand, grab your left elbow and pull your outstretched left arm slowly toward your right shoulder. Hold for 15 seconds and change arms. Neck roll: Relax your shoulders, let your head drop to your right shoulder and roll your head slowly to the front and then to your left side. Repeat five times.

Here's a yoga site that has stick figures demonstrating the different poses and vinyasas (series or flow of postures). http://www.yogasite.com/postures.html

My husband had to taper off Zoloft and ramp up Effexor XR. He was OK during the change, more anxious but I don't know how much of that was due to worry about the change and how much was due to the actual drug differences. I wish I could remember the dosing schedule for you - I believe it was a couple weeks in duration to complete the change.

When I hiked, we were instructed to always eat something salty with every drink break to avoid flushing of sodium. The snack of choice was Pringles potato chips since you only had to eat a few. Hyponatremia: What It Is, How to Prevent It By Courtenay Schurman, MS, CSCS What Is It Hyponatremia refers to a low concentration of sodium in the blood and occurs when athletes sweat profusely and then drink copious amounts of pure water to replenish fluids, without adequately replacing electrolytes. It occurs more frequently during endurance events that last longer than several hours, where athletes attempting to rehydrate over several hours of exertion may end up compounding the problem without realizing it. In a study of 36 athletes during a 3-4 hour triathlon and 64 athletes in a 9-15 hour Ironman race, no athletes were hyponatremic following the shorter race, but 27% were hyponatremic and dehydrated following the Ironman. How Can You Prevent It? If you plan to be out for a long day?s bike ride or weekend summer climb, the simplest way to prevent getting hyponatremia is to include diluted electrolyte-containing fluids (widely varied, including such drinks as Gatorade, Gukinaid or Powerade) and take plenty of salty snacks including pretzels, chips, nuts, or trail mix. Since salty snacks are known to increase thirst levels, not only will the snacks help you replenish missed salts, they also will encourage you to drink much more frequently. Sweat contains roughly 3 grams of salt per liter, and the rate of perspiration during a long, hot climb or race can average .5-1 liter per hour. If you are climbing all weekend to the tune of 10-15 hour days, you can easily lose too much salt. Try to replenish sodium at a rate of about 1 gram per hour, as recommended by Doug Hiller, MD at the Hawaii Ironman (www.rice.edu/~jenky/sports/salt.html). Be aware that trying to get the necessary gram per hour from beverage alone would require that you drink two liters of Gatorade each hour ? certainly impractical for most people out in the mountains unless you can carry Gatorade powder and continue to add it to your filtered water. Salty Foods to the Rescue If you have ever wondered why nuts, soups, trail mix, Doritos, pizza, Mexican food (chips and salsa) or other salty foods taste so delicious during or following long endurance outings, it is because your body needs a certain level of sodium to replace that lost through sweating, and it will tell you in no uncertain terms exactly what it needs. If you or a training or climbing team member experience nausea, muscle cramps, slurred speech, confusion, disorientation, or inappropriate behavior, and yet your urine is clear from your abundant hydration efforts, you may need to get some salt rather than still more water. Severe hyponatremia is a true medical emergency and can result in seizure, coma or even This article was found on www.bodyresults.com

My brother-in-law was considered for a pacemaker but first they implanted a Reveal monitor (insertable loop recorder) and that proved that the pacemaker would not help with his form of syncope. (non-epileptic seizures is his current diagnosis). My understanding is that the Reveal monitor is placed into a small pocket in your chest and that the same pocket would be used for the pacemaker if the decision is made to go that way. The Reveal monitor is not a permanent implant. In his case it was worth it to avoid implementation of a pacemaker that would not have helped. Information on the device they used can me found at: http://www.medtronic.com/servlet/ContentSe...e=faint_art_new

A different side of Dr. Grubb. Following my husband's first consultation with Dr. Grubb in 2003, he sent a package that contained not only research articles on dysautonomia, but other, non-medical writings of his. I just did a search on the internet to see if some of them were available online and below are links to several of his articles: http://www.jewish-holiday.com/grubbstory.html http://www.annals.org/cgi/content/full/127/4/331 http://www1.chabad.org/library/article.asp?AID=2274 http://www1.chabad.org/library/article.asp?AID=2609 I just thought some of you might appreciate reading these while he is so much in our prayers.

A different side of Dr. Grubb. Following my husband's first consultation with Dr. Grubb in 2003, he sent a package that contained not only research articles on dysautonomia, but other, non-medical writings of his. I just did a search on the internet to see if some of them were available online and below are links to several of his articles: http://www.jewish-holiday.com/grubbstory.html http://www1.chabad.org/library/article.asp.../full/127/4/331 I just thought some of you might appreciate reading these while he is so much in our prayers. Note: I don't know why but I have four articles listed but only two show up when I post. I've tried several times to get the other two to show. MightyMouse - can you help?

My husband takes Effexor XR to help control the symptoms of NCS. For the most part it works although he still experiences some pre-syncope episodes (dizziness, drunk-like state, loss of coordination, etc). Zoloft did not work for him to control the fainting.

My husband was diagnosed with NCS by an EP Cardiologist even though he passed the TTT. He was also seen by Dr. Grubb who confirmed the diagnosis of NCS. In Dr. Grubb's office, his BP dropped 20 points after standing from a seated position.

I just found this under Medscape Medical News: FDA Approves Tests for Sleep Apnea, Influenza, Testosterone, and More Yael Waknine Nov. 16, 2004 ? The U.S. Food and Drug Administration (FDA) has approved an in-home test to diagnose sleep apnea, a diagnostic test to detect and differentiate between influenza A and B, a test that measures testosterone levels as an aid to diagnosing sexual dysfunction and other endocrine disorders, and a knot-less, self-anchoring barbed suture for use in closing dermal wounds. In-Home Diagnostic Test (Apnea Risk Evaluation System) for Sleep Apnea On Oct. 20, the FDA approved an in-home system (Apnea Risk Evaluation System [ARES], made by Advanced Brain Monitoring, Inc.) for diagnosing obstructive sleep apnea (OSA). The miniature battery-powered device measures blood oxygen levels, pulse rate, snoring sounds, nasal pressure, and head position/movement during sleep. These findings are combined with those of a questionnaire designed to evaluate risk factors for OSA. The approval was based on the results of a multisite clinical trial showing that the accuracy of ARES in diagnosing OSA was comparable to that of laboratory sleep studies, the current gold standard.

http://www.dynakids.org/Documents/newsletter2.pdf NDRF Youth Network Fainting Robins Newsletter ?The Young and the Diizzy? ?Back To School? - Special Edition August 2001 ______________________________________________________ ?Dysautonomia for Dummies? Byy:: Drr.. Bllaaiirr Grrubb There is a Dysautonomia for Dummies article at the Dysautonomia Youth Network website that is good for explaining the disorder to family& friends, unfortunately it falls short of being able to tell you how to cope with the variety of symptoms that come with it. Maybe it will help your daughter with her own understanding. I have used the article in the past to explain to my husband's family since I find that while they want to understand they really don't want to read a research paper. Hope this helps.

My husband has Epstein-Barr virus and it is exactly as Mary described - when he overexerts himself for an extended period the mono-like symptoms come back and he is forced to take it easy for a while. His NCS also get's worse so the onset of a sore throat is somehwhat of an early warning signal to him that he has to back off and take better care of himself. His constant over exertion and not wanting to make accommodations to this disorder is the biggest battle in our house. It was after he was diagnosed with Epstein-Barr that the syncope started and an eventual diagnosis of NCS was reached - I believe the virus pushed his NCS symptoms into high gear but I think he had a milder version for many years beginning in his teens.

Mu husband keeps a couple of gelpaks in a ziploc bag in the freezer, the ones you buy at the drug store for back aches. It's rectangular, about 10" long, 3" wide and has it's own fabric sleeve that it slips into. He puts it across is forehead when he can lay down. We also have a couple of the neck wraps that you soak in cold water, the beads inside absorb and swell and you tie it around your neck for cooling - I have used the neck wrap myself.

thanks for the suggestion but he has had an MRI and MRA of the brain and upper spine and everything came back fine. I think this must just be his particular form of syncope. I remember someone on the NDRF site had the exact similars symptoms but I haven't seen any posts from that person in a long time. I also read an article in the past that included loss of bladder as one of the forms of syncope but of course I can't put my finger on it now.

Does anyone else have pre-syncope episodes where in addition to appearing in a drunk-like state and losing coordination you also lose control of your bowel and/or bladder? My husband's NCS is mostly under control but he still has what I call an occasional 'melt down" where he appears to be drunk, slurring of words, body becomes rubbery and he loses coordination in addition to control of his bladder. So, while he isn't passing out totally he is still incapacitated. This has been his main form of syncope for the past several years - his twin does not experience the drunken symptoms but instead hits the floor, totally out, many times with accompanying seizures. What a mess. Just wondering is anyone else experiences this and if you have any ideas.

Have they ruled out fibroid tumors? I struggled with severe periods and anemia for 9 years and had all kinds of tests, hormone treatment and surgeries. My last period was 90 days and similar to yours - I felt awful and I don't have dysautonomia so I can only imagine what it would be like in combination with that. In my case, too much estrogen which led to fibroid tumors was to blame 1) they enlarge the uterus 2) they each have thier own blood supply 3) one was positioned where it would not allow things to close off - all increasing the duration and severity of bleeding. The good news is that fibroids are benign, a high percentage of women have them, in most cases they don't cause any problems but when they do they are treatable. Just a thought. PS - I also had 4 months of Lupron injections to try and interrupt my cycle but they did not work for me (even double injections did not work). Also, Lupron is temporary and puts your system into a false menopause (stops estrogen production) but the effect wears off when the medication is stopped and everything comes back. For me, the Lupron was to stop the bleeding long enough for my body to build up my blood supply to withstand surgery. Lupron has some significant side effects. Maybe things have changed in 3 years, but Lupron was used only as a temporary therapy. PSS - The Dr. did put me on an iron supplement, I took Feosol which is available without prescription but should only be used under a physician's direction (too much iron is toxic). I also had to take a stool softener during that time because the extra iron makes things difficult.

Not an answer to your question but an interesting article on seasonal variations in blood pressure. Looks like we need to move further North to keep my husband's BP up where needed. Seasonal Variations in Blood Pressure Posted 10/29/2004 Talma Rosenthal, MD Abstract and Introduction Abstract The influence of temperature changes on risk factors like hypertension is often disregarded despite extensive literature on the phenomenon. Numerous surveys and studies have documented the correlation between temperature and blood pressure in various countries among adults, the elderly, and children. Twenty-four-hour blood pressure studies also generally show higher blood pressure in the winter. The suggested etiology is that cold increases sympathetic tone, evidenced by elevated blood pressure and plasma and urinary noradrenaline concentrations. The lower blood pressure in warm temperatures is attributed to cutaneous vasodilatation and loss of water and salt from sweating. Taking seasonal variations in blood pressure into account will increase the meaningful information collected in population surveys and mass screenings. It will also result in more personalized management of antihypertensive medications tailored to the individual. For the rest of the article: http://www.medscape.com/viewarticle/489515_1

When my husband started Effexor XR, I remember the insert said that you might experience a slight rash as your body adjusts to the medication - hopefully you are just adjusting and will continue to have a great results.

My husband has NCS and I refer to him by several nicknames: heatman, the flame, hottie - you can feel the heat radiate from him if you stand close. His normal temperature is 97.4 and he heats up at different times - always when he does housework, but then he will be fine playing golf in 95 degree humid weather. We haven't figured it out yet.

If you make the herb roasted chicken suggested by Dancing Light for dinner, you can then make a large batch of chicken soup overnight in the crockpot. 2-way Roasted Chicken Here's a great 2-in-one meal for busy schedules and it helps use up some of those spices you have in the cupboard (I hope you like garlic). The soup is naturally low-fat because the chicken has already been roasted. Roasted Chicken with Herbs 3-4 lb. whole chicken 3 tbls melted butter 3 cloves garlic minced 1/2 tsp salt 1/2 tsp pepper 1/4 tsp each thyme, sage, oregano, marjoram and basil Add the seasonings to the melted butter and brush over the chicken (I place some additional garlic and a bayleaf in the chicken cavity). Roast at 350 degrees until internal temperature is 180-185 degrees. In my convection oven, this takes approximately 25 minutes/pound. Enjoy but save some of the crispy skin and the wings for the next step. Roasted Chicken Noodle Soup When you finish with dinner, save any large pieces of chicken for sandwiches or some other use. Place the wings and chicken carcass in a crock pot (skin, bones and all) Add 10 cups of water Add 1 tbls of chicken soup base (or chicken bullion cubes). Add 2 carrots, 2 stalks celery and 1 small onion - cut up, large chunks OK Let it cook on low overnight and finish it in the morning. Strain the soup through a collander into a large bowl. Return the broth to the crock pot and add your favorite noodles (1/2 package). Return any chicken pieces to the crock-pot and discard everything else. Continue to cook until the noodles are done (about 30 minutes). Refrigerate for later or freeze.