About MD Bay Area Support
Phone and email support from Toni Marshall, person with CFS and POTS.
There have been meetings in the past and there may be some in the future.
Need an in person meeting? Closest Groups that meet in person:
Nova CFS/FMS Support Group, Nova MVPS/D & OI Support Group, Elly's Gratitude Group
CFIDS Network of Baltimore
Orthostatic Intolerance / Dysautonomia Resources & Articles
Elsewhere On this Site
- DC Area Health Practitioners - Cardiology/Dysautonomia CFSupport
- Inclined to Recline: Our Tips for Managing OI CFIDS Chronicle, Marshall & Brosius
- Q&A, Our Way: Orthostatic Intolerance Brosius / CFSupport
- Q&A, Our Way: Anesthesdia & Procedure Preparation CFSupport
- Using HeartMath Techniques for Coping with Stress CFSupport
On the Web
- The Signs and Symptoms of Dysautonomia [PDF] Debra L. Dominelli / DYNA
- What is Dysautonomia? DYNA
- What is Dysautonomia? NDRF
- Dysautonomia Wikipedia
Mediated Hypotension Our FM/CFS World, Inc
and OI in Children and Adolescents CFIDS Assoc of
Other Illness Like This One Joan S. Livingston
Intolerance The Pediatric Network
Intolerance and its Treatment Chronic Fatigue
Clinic, Johns Hopkins
- Postural Orthostatic Tachycardia Syndrome: A Potentially Treatable
Cause of Chronic Fatigue, Exercise Intolerance, and Cognitive
Impairment in Adolescents PACE
- The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management. Review Raj, Autonomic Dysfunction Center, Vanderbilt University - new!
- Postural Tachycardia Syndrome: Concise Guide to Diagnosis & Management Grubb+
- Postural Tachycardia Syndrome: When to Consider it in Adolescents Grubb
- POTS: An Overview POTSPlace.com / DINET
- POTS: Procedure for Taking Standing Blood Pressure DYNA
- POTS: What Helps? PotsPlace.com
- POTS: Dental treatment considerations JADA / DYNA
- Support group for rare disorder meets in Sterling Loudoun Times-Mirror
- Support Hose Help OI: Why to Wear, Where to Buy CFSupport
- The Symptom of OI in CFS by David Bell Spr/Sum 2005 National ME/FM Network
- The Young & The Dizzy Newsletter Archives DYNAkids.org
- And the Beat Goes On Newsletter Archives Society for Mitral Valve Prolapse Syndrome
Other Websites for OI / Dysautonomia / MVP Syndrome
What are the symptoms of MVPS/Dysautonomia/Orthostatic Intolerance?
There is Mitral Valve
Prolapse (MVP) and there is Mitral Valve Prolapse Syndrome /
Dysautonomia (MVPS/D). This page and group are concerned not with the
heart valve problem, MVP, but the collection of symptoms that have come
to be known as MVP Syndrome, a kind of dysautonomia where it is
particularly challenging to be upright and still. That is why it is
also called a type of orthostatice intolerance (OI).
40% of patients with Mitral
Valve Prolapse (heart click or murmur from regurgitation) and many people with CFS and FM have an
imbalance of the autonomic nervous system (ANS) called, in general, a dysautonomia.
POTS and NMH are also forms of 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.
The above combination of
is known as MVP Syndrome/Dysautonomia to some. Certain finer
distinctions are made for other dysautonomias such as NMH and POTS.
All can be considered forms of orthostatic intolerance (OI) - literally difficulty remaining upright and still, or OI can be considered a symptom of syndrome as by Bell in CFS. Diagnosis is made by physical exam and a careful
medical history, with possibly a tilt table test or modified standing test. Most people with OI, MVP
Syndrome, POTS, or NMH, have nothing wrong with their hearts. The majority of symptoms
are from the struggling nervous and circulatory systems. 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/D have a higher incidence of: TMJ
(temporomandibular joint dysfunction), scoliosis, fibromyalgia, PMS,
fibrocystic breast disorder, tinnitus, infertility, SAD (seasonal
affective disorder), altitude sickness, seasickness.
Main source for MVPS/D symptoms: The Society for MVP's symptom page.
Why We Discuss MVPS/Dysautonomia along with CFS and FM
From CFSupport and MVPS-D_OI_nova e-mails, April 2006.
by Toni Marshall
Becoming a co-moderator for the MVPS-D/OI email support group seems a
good opportunity to offer the compelling description of MVP Syndrome, above, and how the information helped me understand the relationship
between CFS and OI/Dysautonomia years ago. Reading the list of
symptoms may prove helpful for others to decide if they, too, have
circulatory problems caused by an imbalanced Autonomic Nervous System
(ANS). Elly and I have been co-moderators of CFSupport for many
years and, recently, I volunteered to help with the MVPS/D group since
I never tire of discussing my dysautonomia experience.
After I'd been diagnosed with POTS in 1998 and CFS in 1997, attending
every CFS group meeting, I still wondered if the NoVA CFS Support Group
was the right one for me. I didn't relate to many symptoms others
described in meetings. I didn't have email then, making it hard
to get detailed information from other members, especially since I was
usually quite late to meetings. I collected handouts at meetings,
but read only a few.
A list of mitral valve prolapse syndrome and dysautnomia symptoms was included in most MVPS/D group newsletters Elly had
produced for that support group. She brought additional
copies of the MVPS newsletter to the No VA CFS/FMS group meetings.
The list included many symptoms I had experienced most of my life but
thought completely unrelated to each other. Many symptoms were
simply annoying, not debilitating. I thought they meant I was
just weird, as in, "Whoa, that's weird!", without further
At the time, I had no idea what MVPS was and no idea how it related to
CFS. What a relief to realize someone somewhere had a clue
concerning my symptoms, weird, scary or miserable, whatever their
diagnostic name. It was a revelation to realize so much of my
"weirdness" was typical for people with these conditions.
To realize I'd found a place, after all, The NoVA CFS/FMS Support Group, to
discuss my difficulties with people suffering similarly brought me
great comfort during a bad, scary time. I was introduced to ideas
about what the diagnosis meant and suggestions offering relief
(supplements, support hose, time-released prescription potassium
chloride, fidgeting, rocking, semi-reclining with feet up, salt and
water). Maybe the MVPS/D symptom list and description will
help others feel less alone, to trust there's a safe place for them,
Co-Author of Inclined to Recline: Our Tips for Managing OI
Co-Leader, NoVA CFS/FM Support Group & CFSupport
Updated August 2006