NorthernVA MVP Syndrome / Dysautonomia Support Group

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The group meets the second Tuesday of every month in Room 115 of Columbia Reston Hospital Center's Medical Plaza Building located at 1800 Town Center Drive, Reston, VA 20190. Regular meetings are from 12 - 1:30 pm. Bring lunch if you like, and something to drink! Registration is not required.

Donations are appreciated and allow us to do copying, have a PO Box, and send materials to those in absolutely desperate need. Obviously, more volunteer help and contributions are necessary to keep up our service. If you see a need not being met and can volunteer to make it happen, your rewards will be greater than you can imagine!

June 6, 1998

Special Saturday 10 am Meeting: Washington Consultant pharmacist Colleen O'Brien, Pharm D, speaks to group on drug interactions and drug herb interactions. She consults directly with patients and doctors. (703) 425-3779 or mailto:drobrien@erols.com


June 9, 1998

Group discussion


July 14, 1998 - Video -

MVP Soc. #1: Cardiologist Debra Doud: MVP and MVP Syndrome

July 22

Baltimore Autonomic Dysfunction (of which MVPS/D is one type) has formed in the Baltimore area. Contact Shireen Rusby at (410) 654-5214.

Aug 11, 1998 - Video -

MVP Soc: #2:Internist Sonja Boone on alternative medicine


Sept 8, 1998 - Video -

MVP Soc: #3:Pulmonologist Peter Freebeck on sleep disorders



Oct.13, 1998 - Video -

MVP Soc:#4: Psychiatrist W. Scheftner on panic disorder, anxiety and depression

40% of patients with MVP (heart click or murmur from regurgitation) also have an imbalance of the autonomic nervous system (ANS) called dysautonomia. The ANS is composed of two systems; the parasympathetic and the sympathetic. It controls involuntary body functions, such as respiration, heartbeat, blood pressure, vision, and digestion. When this system is out of balance it can cause a myriad of symptoms, including chest pain, panic attacks, anxiety, fatigue, migraines, irritable bowel, lightheadedness, weakness, heat intolerance, alcohol intolerance, pallor or redness of extremities, numbness and/or tingling in the arms and/or legs, depression and/or mood swings, hypersensitive startle reflex, neckaches, backaches and/or other muscular tension or twitching, loss of concentration, foggy thinking or memory problems, swelling of extremities, feelings of electrical current going through your body, skin problems, sleep difficulties, allergies, feeling hot or cold-unrelated to external temperature, visual disturbances and more. This combination of symptoms is known as MVP Syndrome. Diagnosis is made by physical exam, a careful medical history, and/or an echocardiogram. 99% of people with MVP Syndrome have nothing wrong with their heart. The majority of symptoms are caused by an out-of-balance nervous system. Common triggering events - childbirth, major viral illness, menopause, accident, surgery, college (leaving home and stress), death of a loved one, marriage, moving, divorce. People with MVPS have a higher incidence of: TMJ (temporomandibular joint dysfunction), scoliosis, fibromyalgia, PMS, fibrocystic breast disorder, tinnitus, infertility, SAD (seasonal affective disorder), altitude sickness, seasickness. (Sources: The Soc. for MVPS's and Houston MVP's web sites.)

New option for dry eyes and more? A new approved use for pilocarine HCl came out in Feb '98. The brand name is Salagen and it is a pill. [Other use is eye drops for glaucoma.] Pilocarpine is an autonomic nervous system agent and the drops are used to gauge autonomic responses by how much your pupils dilate. Salagen is being used for people with Sjogren's syndrome - an unusual disorder in which the body's immune system attacks the moisturinzing glands in the eyes and mouth. Treatments include artificial tears, saliva substitutes and nose sprays. Also, tiny silicone plugs for the tear drains are available (Elly has these, but they don't help as there doesn't seem to be much moisture to retain there.) Salagen was approved for the treatment of dry mouth first for radiation patients. It helps stimulate the flow of fluid from the glands and may help relieve dryness of the mouth, nose, eyes, and vagina. (Source: 6/2/98 Washington Post Health, page 23, Consultation,Jay Siwek, MD). For more information on Sjogren's click here: http://www.sjogrens.com or call (800)475-6473. If anyone has used Salagren and is willing to share, please contact Elly.

The MVP Upbeat has an article on fibromyalgia syndrome this time. It is good to see us all talking about the differently named syndromes and sharing strategies for coping. Even though we don't have the same symptoms, we are all human and experiencing problems. You never know when you'll meet someone who can help, so keep your mind open.

A new Email reminder list for Nova CFS Support Group events is forming. MVPS/D special events will be announced as well. To get on the list, send an email with "Subject listed as 'MVPS'" mailto:sslyon@erols.com

Tilt Table Testing, symptoms, and treatment for dysautonomia (orthostatic tachycardia and neurally mediated hypotension and MVPS) especially in people with CFS & FMS. Peter Rowe, MD of Johns Hopkins in an address 11/97 to the CFS Association of VA, Inc. (804) 330-7518. The symptoms addressed are in those found in MVP, too, so you'll find this fascinating. To order, send a check for $7.50 ($10 outside VA) to

The Society for MVP Syndrome has a new 2 tape, 4 speaker video set of their 1997 conference see meeting schedule for topics. The price incl. ship. is $25; write videos on your check.
They also have a wonderful web site and newsletter ($14/yr for 6 iss., ). For either of these, please contact them at

Dr. Watkins of the MVP Center was featured in the Feb 17 issue of Women's World, The Women's Weekly. The Center received more than 3000 inquiries from the article. Read more about it in the Spring/Summer 1998 MVP Upbeat from the Center. If anyone has the article, please share it with the group. See also July 1997 Redbook.

The National Dysautonomia Research Foundation (NDRF) is a super new group dedicated to the dysautonomias, including MVPS/D. They can be reached at (715) 594-3140.

The MVP Center in AL publishes MVP Upbeat, a quarterly newsletter (1yr/$15, 3/$40). (800) 541-8602 or (205) 592-5765.http://www.mvprolapse.com L. Frederickson, RN, author of "Confronting MVPS" is at this center and her books can be ordered for $12 incl. ship. MVP Program of Cincinnati (513) 745-9911. Has a nice newsletter, too. Kris Scordo, RN, author of the "Taking Control MVPS/D" book is based there.

The CFIDS Association of America Inc. has a wonderful packet on Neurally Mediated Hypotension which explains a lot about dysautonomias. Even if you do not have chronic fatigue syndrome this information could be very beneficial to you. To order , call (704) 365-2343 for item #6120 ($7.50). For just a free packet on CFS call (800) 442-3437. http://www.cfids.orgDisability process info available should your symptoms be that severe.

Call the CFS Ass'n of VA at (804) 330-7518, #6 for more detailed info or international shipping.

For those of you with MVP, who do antibiotic prophylaxis, new dosing guidelines appeared in the Jun 11th, 1997 Journal of the American Medical. For 500 mg amoxicillin takers, it is now 2g (4 pills) one hour prior to procedure and NONE afterward. For those allergic to penicillin, the recommendation is clindamycin 600 mg, or cephalexin 2 grams, or azithromycin or clarithromycin 500 mg one hour before, none afterward. (Source: Network: The Newsletter of the MVP Program of Cincinnati, Fall 1997.)

The Chronic Pain Outreach Association acts as an information clearing house and can provide referrals to health care professionals specializing in treating chronic pain. (540) 997-5004.

Member The Nat'l Assoc for Continence publishes Quality Care. They have info about pelvic floor exercises. With abdominal exercises, these can help with circulatory problems. 800-BLADDER. http://www.nafc.org

Member The National Vulvodynia Association provides women with information about causes and treatments for chronic vulvar discomfort. (301) 299-0775. http://www.nva.org

The group is patient/volunteer run and dedicated to the support and education of people with MVPS/D and other related dysautonomias such as orthostatic tachycardia syndrome and neurally mediated hypotension. The support group setting allows people to share their experiences and gain new insights for coping with their condition(s). Occasionally, professionals address the group about MVPS/D, some of its symptoms, or related topics. See a competent professional and/or do some of your own research before attempting any new treatment.

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