STL POTS April 25 2015 Event Presentation

Autonomic Dysfunction

Awareness Event

Dr Antonella Quattromani, MD, MBA, FACC

St Louis POTS Community

April 25, 2015

SSM St. Clare Health Center

Goals for the event

Create awareness of Autonomic Dysfunction

Explain Dysautonomia and POTS

Diagnosis and difficulties getting a correct diagnosis

Treatment and lifestyle changes

What to do if you suspect it in a patient

Background Information

Dr Antonella Quattromani, MD, MBA, FACC Specializes in Cardiology, Electrophysiology and Pacing Treats many local patients with POTS/Dysautonomia Daughter has POTS

St Louis POTS Community An empathetic and encouraging network for those effected by POTS/Dysautonomia in the

St Louis region. The group is open to all youth and adults with POTS and their caregivers, family and friends.

Monthly support group meetings Facebook site with over 100 active members

Dysautonomia

It is an umbrella medical term used for a group of complex conditions that are caused by a malfunction of the Autonomic Nervous System (ANS)

The cardiovascular system is affected by this condition

Orthostatic intolerance is a hallmark of various forms of autonomic dysfunction

Primary Autonomic Disorders

neurocardiogenic syncope

postural orthostatic tachycardia syndrome (POTS)

pure autonomic failure

multiple system atrophy

autoimmune autonomic ganglionopathy

Dysautonomia

The presentation is often a loss of consciousness that leads to the admission to the hospital and referral to neurology

and cardiology evaluation

The condition is also referred to as the INVISIBLE DISABILITY and it can range from mild to extremely life

impacting

There are many kinds of dysautonomia, but the information in

this presentation is primarily based on the most common

type: POTS

Autonomic

Nervous System

The autonomic nervous system controls all

processes in your body that you dont have to

think about (like digestion, blood pressure, heart

rate and wake/sleep cycle)

Source: Dysautonomia presentation By Dani Fisher and Emily Block

Autonomic Nervous System

POTSDefinitionPOTS is a form of orthostatic intolerance that is associated with the presence of excessive tachycardia and many other symptoms

Diagnostic Criteria

Presence of orthostatic intolerance symptoms associated with HR increase of 30 BPM or a rate that exceeds 120 BPM within the first 10 minutes of standing

40 bpm required in children

Patient does not experience orthostatic hypotension

This may be accompanied by symptoms of cerebral hypoperfusion and autonomic over activity that are relieved by lying down.

Source: Dysautonomia International

POTSHow diagnosed

Usually diagnosed during a head up tilt test

Can perform an orthostatic challenge if a tilt table is unavailable by taking measurements of heart rate and

blood pressure in the supine (laying down) and

standing up position at 2, 5 and 10 minute intervals

Doctors may perform more detailed tests to evaluate the autonomic nervous system in POTS patients, such

as Quantitative Sudomotor Axon Reflex Test (QSART,

sometimes called Q-Sweat), Thermoregulatory Sweat

Test (TST), skin biopsies looking at the small fiber

nerves, gastric motility studies and more.


What is the cause?

Primary POTS is not associated with other disorders Secondary POTS is associated with multiple conditions associated

with peripheral autonomic denervation or other underlying conditions

Can have multiple and/or unknown causes Onset may follow a

Bacterial or viral infection (mono, EBV) Serious injury (Traumatic Brain Injury, car accident) Period of extreme physical or emotional stress Surgery (particularly with stronger anesthesia) Beginning of puberty or a growth spurt Pregnancy

Underlying causes

For a complete description of each underlying cause visit the Underlying Causes of Dysautonomia page at the Dysautonomia International website.

Amyloidosis

Antiphospholipid Syndrome

Celiac Disease

Chiari Malformation

Crohns Disease and Ulcerative Colitis

Deconditioning

Diabetes and Pre-diabetes

Ehlers-Danlos Syndrome

Infections (Mono, EBV, Lyme)

Mast Cell Disorders

Mitochondrial Diseases

Paraneoplastic Syndrome

Sarcoidosis

Sjogrens Syndrome

Toxicity

Physical Trauma, Surgery

Pregnancy

Vitamin Deficiencies


POTS by the numbers

85% female; most common ages 12-40

Mayo researchers estimate 1 in 100 teens

Adult + pediatric US estimate is 1-3 million

broad range of severity mild to bedridden

disability compared to COPD and congestive heart failure

25% of patients cannot work or attend school

50% have a post-viral onset

50% have sudomotor neuropathy

20% have evidence of cardiac autonomic neuropathy


POTS can strike any gender, race or age

Hyperadranergic

- Characterized by progressive onset

of symptom associated with tremor,

anxiety and cold sweaty extremities

- These patient on tilt will have an

exaggerated response to isuprel

- elevated levels of norepinephrine

Partial Dysautonomic

- Most common form

- There is a 5:1 female male ratio

- Frequently reported as a abrupt

onset after viral illness, surgery and

trauma

Developmental

- Seems to affect adolescents

- Sudden onset

- Symptoms usually subside into

young adulthood

These terms are not really describing unique sub-types of

POTS. Instead, they are describing

features that have been seen in

some patients with POTS.

In fact many patients may have two or more of the different

characteristics present.

Hypovolemic

- Low blood volume

- Reduced plasma-renin activity

Characteristics of

POTS

Symptoms

Lightheadedness

Fainting or almost fainting (black outs)

Abnormal heart rate

Abnormal blood pressure

Weakness

Slow or dysfunctional digestive system

Poor concentration (brain fog)

Exercise intolerance

Nausea/Vomiting

Joint pain

Flu like symptoms (including fever, chills, and body aches)

Sleep disorders

Anxiety

Heat/cold intolerance

Changes in sweating

Easily over stimulated


What is the Prognosis?

POTS is usually not fatal but there is no cure and everyone is different

Post viral usually resolves in 2-5 years

Developmental usually resolves by around ages 21-24

Some will have symptoms for life

Most will experience at least some improvement in symptoms from treatment

Finding and treating any underlying causes seems to have the greatest benefit

Does POTS run in families?

There is no definitive data or research showing a genetic component but it seems to run in families

Several local POTS patients have children with POTS or exhibit some type of autonomic dysfunction

Researchers believe that there may be some type of genetic component with the hyperadranergic variant

Quality of Life and Disability

Many have mild symptoms and can continue normal activities with minor lifestyle modifications

Others may have symptoms so severe that normal life activities are significantly impacted

Functional impairment comparable to COPD or congestive heart failure patients

Approximately 25% are disabled and unable to attend work or school

Researchers found that quality-of-life in POTS patients is comparable to patients on dialysis for kidney failure


Is POTS caused by a psychological condition?

While some of the physical symptoms of POTS overlap with the symptoms of anxiety, such as tachycardia and palpitations, POTS is not caused by anxiety.

POTS patients are often misdiagnosed as having anxiety or panic disorder, but their symptoms are real and can severely limit a person's ability to function.

Research has shown that POTS patients are similarly or even less likely to suffer from anxiety or panic disorder than the general public.

Research surveys that evaluate mental health show similar results between POTS patients and national norms.


Difficulties getting diagnosed It takes a long time to get a correct diagnosis (5 years on avg) Another issue is the lack of awareness within the medical

community. Many doctors, nurses and paramedics have either never heard of POTS or never encountered anyone with it.

Many POTS patients have heard the words It is all in your head or you could not possibly have that many different symptoms when seeking treatment and a diagnosis from doctors.

Most POTS patients have many sad stories with how they were treated at an ER or doctors office.

POTS patients are routinely dismissed with inaccurate psychiatric diagnoses by doctors who are not familiar with the symptoms of POTS, some of which can look like an anxiety disorder to an untrained eye

Diagnostic Delay in POTS

The average diagnostic delay for a POTS patient is 5 years and 11 months.

Only 25% of patients are diagnosed within the first year of symptoms.

50% of patients traveled more than 100 miles from home to receive POTS related medical care.

Prior to being diagnosed with POTS, 59% of patients were told by a doctor that their symptomswere "all in your head."

Prior to being diagnosed with POTS, 69% of POTS patients were diagnosed with an anxiety disorder. However, peer-reviewed research demonstrates that POTS patients are no more likely to be anxious

than the general public.

27% of patients visited more than 10 doctors for their symptoms before finally being diagnosed with POTS.

34% of survey participants were teenagers when they first developed symptoms of POTS.


Survey results from 700 POTS patients

POTS Treatment and Management

Increased fluid and salt intake (H2O: 2-3L/day; Salt:3,000-10,000 mg/day)

Compression (leg and abdomen)

Exercise (reclined exercises, Levine Protocol)

Healthy diet

Avoiding situations and substances that trigger symptoms

Medications (to improve symptoms)

IV Saline Therapy

Lifestyle changes


Medications

Many different medications are used to treat POTS, such as Fludrocortisone, Beta Blockers, Midodrine, Clonidine,

Pyridostigmine, Benzodiazepines, SSRIs, SNRIs, Erythropoietin

and Octreotide

Many medications can worsen orthostatic intolerance

Medications should be targeted at each patients specific symptoms and POTS characteristics


IV Saline Infusions

Research has shown that POTS patients often have a significant deficit in blood volume and are hypovolemic, even with adequate oral hydration.

Standard blood and urine tests are usually normal as the patient is typically deficient in plasma and red blood cell volume.

GI issues, nausea, and fluid retention can make oral hydration difficult for volume expansion.

IV fluids do not rely on absorption through GI system

Volume expansion is a focus of the treatment for POTS.


IV Saline Infusions Benefits and How to?

Benefits

IV fluids can markedly reduce heart rate, help to stabilize blood pressure and symptom burden in patients

Can help with transitioning into a more normal life Many local POTS patients have a period of increased energy levels after IV fluids Great for travelling and when you have numerous bad days

How to?

Will need a prescription from a physician who will also determine the frequency Can get IV infusions at hospitals, infusion centers and in your home through

home health care agencies

Packet includes information on local infusion centers

POTS and Teens

Autonomic dysfunction in teens often occurs within a year of starting puberty

Often seen in high achieving and hard working teenagers

Commonly seen in teens with hypermobility form of EDS

Teens can often connect their symptoms with a specific event (sudden onset):

- Acute illness: acute infection, mono, EBV - Injury

- Major surgery or stay in the hospital - Weight Loss

POTS is estimated to impact 1 in 100 teens and is more common in girls

Most teens do not outgrow POTS - A 10 year retrospective study of Mayo Clinics pediatric POTS patients found that 60% had improved symptoms but still had POTS,

20% had recovered, and 20% had worsened or stayed the same.

Sources: Mayo Clinic: Teens + Autonomic Dysfunction Patient Education brochure

POTS and Teens - School

POTS/Dysautonomia is covered in MO and IL Disability Acts Accommodations are available and a 504 plan can be filed

Access to water/salty snacks, longer testing times, flexible schedules, elevator passes College accommodations can include: first floor dorms, wheelchair accessible buildings

Creating an individual educational plan for these students starts with two things:

Flexibility Creativity

Open and supportive communication between parents, child, medical and educational authorities is absolutely essential.

Every child is different but in severe cases a home school plan may be useful until able to attend classes

Sources: Dysautonomia International, Dysautonomia Youth Network of America

POTS and Teens School Accommodation Links

Dysautonomia International

For Educators: http://dysautonomiainternational.org/page.php?ID=40

Classroom Accommodations: http://dysautonomiainternational.org/page.php?ID=107

Dysautonomia Youth Network of America

School Information: http://www.dynainc.org/dysautonomia/educators

College Accommodations: http://www.dynainc.org/dysautonomia/college

Sources: Dysautonomia International, Dysautonomia Youth Network of America

POTS and Teens Treatment Considerations Limit junk food

Clean diet of vegetables, fruit, protein, nuts, healthy snacks

Good sleep habits Consistent bedtime and amount of sleep Wind down before bedtime: no electronics, turn down lights, engage in relaxing activity Dont sleep throughout the day

Exercise

Maintain your daily intake of fluids and salt

Stay in touch with friends Educate them - Participate in activities to the best of your ability Have fun - Instead of going out have everyone over for pizza and a movie

Find your Balance

Sources: Mayo Clinic: Teens + Autonomic Dysfunction Patient Education brochure

Autonomic Dysfunction and Management

Perioperative Management

It is important to discuss the condition with the anesthesia team prior to the surgery

It is mandatory to maintain euvolemia in patient with autonomic dysfunction Hypotension during anesthesia is responsive to phenylephrine Supine hypertension responds to nitrates or nipride

ICU Management

Small tidal volume is indicated in patients with autonomic dysfunction Hyperventilation with rapid decrease in carbon dioxide level can cause rapid

decrease in blood pressure sometimes greater than 40 mm Hg

Controversially hypercapnea can be used to increase BP in these patients

Common conditions seen with POTS

Mast Cell Activation Syndrome (MCAS)

Ehlers-Danlos Syndrome (joint hypermobility)

Third Space Fluid

Chronic Fatigue Syndrome (CFS)

Also known as Systemic Exertion Intolerance Disease (SEID)

Auto-immune diseases


A condition in which mast cells degranulate excessively and release histamine, heparin, and other chemicals in the system.

Triggers are numerous, some include: Foods, scents, chemicals, extreme temperatures, stress, hormonal shifts,

and certain medications

Symptoms vary from patient to patient but can include: Flushing, hives/rashes, diarrhea, constipation, nausea, vomiting,

malabsorption, tachycardia, very low blood pressure, anaphylaxis, migraines, food allergies and intolerances, medication and chemical sensitivities, cognitive impairment, and fatigue


Testing for MCAS 24 hr urine for N-methyl histamine Prostaglandin D2 or 11-beta-prostaglandin F2 alpha, leukotriene E4 Serum tryptase (unlike with mastocytosis, in patients with MCAS baseline serum

tryptase is often normal)

Note: these test are to be performed when the patient is at their baseline and then repeated during a flare of symptoms

Medications for treatment can include: Antihistamines (H1 blockers), H2 blockers, mast cell stabilizers (chromolyn sodium),

leukotriene antagonists, aspirin, corticosteroids, epinephrine (for anaphylaxis)

Patients require a careful balance of trigger avoidance and medication to manage their symptoms

Ehlers-Danlos Syndrome(EDS)

EDS is a group of genetic connective tissue disorders that are caused by having faulty/bad collagen

There are 6 types but the most common is the hypermobility type Symptoms depend on the type but can include:

Hypermobile joints, soft skin that is easily bruised, joint subluxations or dislocations, chronic pain in many joints, skin hyper extensibility, poor wound healing

You do not have to have all the symptoms to have EDS

Diagnosis family history, physical presentation (Brighton and Beighton scores), genetic testing (except for hypermobile type)

Cervical instability and Chiari Malformation are common with EDS and can contribute to the severity of autonomic dysfunction

Sources: Dysautonomia International and Dinet.org

Third Space Fluid

There are two places where fluids are found within our bodies: Intracellular (first space): inside our cells Extracellular (second space): outside our cells (interstitial,

plasma, transcellular)

In a healthy person the amount of fluid that is inside (first space) and outside our cells (second space) stays relatively constant.

Third spacing is the movement of fluid into interstitial areas, outside of the circulatory system.

Due to the frequent release of histamine in mast cell patients, our blood vessels are leakier than they should be. This means that fluid often leaves our blood stream and gets stuck in third spaces.

Sources: iainfoctr.com and Mastocystosis Chronicles

Chronic Fatigue Syndrome (CFS)

Also called Systemic Exertion Intolerance Disease (SEID)

Persistent fatigue is the hallmark of CFS/SEID

Symptoms - include post-exertional malaise (PEM), unrefreshing sleep, concentration problems and muscle pain, typically lasting at least six

months.

Diagnosis based upon medical history and medical examination

Treatment is directed at helping to relieve symptoms including:

Diet, graded exercise, lifestyle changes, therapy, medications

Sources: Solve Chronic Fatigue Syndrome website

Patient Perspective

What does it feel like to have POTS?

Sometimes when you get up too fast, you may feel light headed or even have dimmed vision. This is what low blood pressure feels like.

The high heart rate would feel like you are jogging or sprinting when you are just sitting, walking or taking a shower.

The other symptoms come together to feel like a mild to moderate case of the flu.

Everyone has felt what it feels like to have dysautonomia, but only for brief periods of time.


Symptom Variability

Triggers which may worsen symptoms

Bending over

Hot/cold weather

Hot baths or saunas

Not taking adequate breaks

Not listening to your body

Speed of positional change dont stand up quickly

Crowded places

Over stimulation (noises, lights)

Stress

Weather changes, shifts in barometric pressure

Deconditioning or prolonged bed rest

Poor nutrition

Large meals

Dehydration

Alcohol which dilates blood vessels

Unsupportive people in your life (family, friends, medical professionals)

Lifestyle ChangesLifestyle changes are an important part of improving quality of life. Many newly diagnosed will try to push through and continue daily activities as they normally had. This can lead to crashes and prolonged days of intense symptoms.

Proper rest before and after activities. Activities should be planned with adequate periods of rest afterwards.

Everything in moderation Dont overdo it, especially on good days. Overdoing it could make for a prolonged

recovery period after activity.

Plan outings and pack adequate drinks and snacks Keep moving even on a rest day. Get up at least every hour and walk around for a few

minutes.

Proper nutrition (clean eating, small meals) Proper amount of sleep Avoid high amounts of stress

Aids that help quality of life Cooling Vests

Compression stockings and binders

Wheelchairs

Shower/kitchen stools

Hydration packs (ie. Camelbak)

Noise-cancelling headphones

Polarized sunglasses

Supplements

Essential Oils

Service Dogs

Tips for physical exerciseExercise can pose a challenge for POTS patients because of low endurance, expectations and lack of motivation.

Begin with reclined exercises such as rowing, recumbent bicycling and swimming Start slow doing a couple of minutes a day and build up to 20-30 minutes per day over time Consider the Levine Protocol, an exercise program designed for POTS patients. Contact your

physician to get a copy of the program.

Control environmental temperature Make sure environment is not stuffy or humid Concentrate on strengthening legs and abdominal muscles

Tone in these muscles improves blood circulation Carefully monitor heart rate and blood pressure, consider exercising with a heart rate monitor Frequent breaks Avoid long periods of standing Hydration is important before, during, and after exercise Should expect frequent steps backwards in progress and may need to give extra encouragement


Exercise Equipment

What else helps Yoga

Meditation

Positive attitude

Sense of humor/laughter

Acceptance but with an attitude to fight

Keep moving

Avoid bed rest (unless ordered by a physician)

Massage therapy

Raising head of bed 6-12

Acupuncture

Biofeedback

Support

Healthcare professionals who take it seriously

Counseling

Sodium Tablets (Thermotabs)

Hydration Tablets (such a Nuun)

Strengthening leg and abdomen muscles

Small frequent meals (6 per day)

Showering at night (instead of morning)

Note: There may not be hard medical evidence of the efficacy of these items but it is a list compiled by POTS patients of what helps.

The importance of support A diagnosis can be a very isolating and depressing event, especially for

youth diagnosed with POTS.

Being unable to go to school or work is difficult for otherwise previously high functioning individuals.

For teens the diagnosis could mean possibly missing out on landmark events like Prom or getting a drivers license or just hanging out regularly with friends.

Support from these people is an absolutely critical element for patients: Family, friends and caregivers Support groups Healthcare professionals

Support from family and friends means facing misconceptions about the cause or validity of symptoms and accepting that your loved one is suffering from a chronic illness that impacts their quality of life

The Spoon Theory

Many patients have found that The Spoon Theory written by Christine Miserandino is very helpful to explain to people what

it is like living with a chronic illness.

http://www.butyoudontlooksick.com/articles/written-by-

christine/the-spoon-theory/

What to look for if you suspect POTS

Vitals Low BP High HR (especially when standing)

Symptoms Wide-ranging Can change quickly Refer to list of symptoms

Fatigue Symptoms worse when active/standing and better when recumbent Sensitivities (food, light, sounds) Easily over stimulated Inability to handle a lot of stress

What to do if you suspect POTS

Detailed History Symptoms What brings on symptoms Accounts from caregivers

Take orthostatic vitals or perform an orthostatic challenge (poor mans tilt test) Refer to a knowledgeable physician who treats Dysautonomia and POTS

Cardiology/Electrophysiology Neurology (preferably an autonomic neurologist) Primary Care physician

Refer person to Dysautonomia awareness websites for further research Be a compassionate caregiver and let the person know that you understand they

are having issues and you are going to provide assistance to get them help

Doctor Directory

The following sites have compiled a directory of doctors who treat autonomic dysfunction.

Dysautonomia International Doctor Directory

http://www.dysautonomiainternational.org/page.php?ID=14

POTSSTL.org Doctor Directory for St. Louis area doctors

http://www.potsstl.org/#!st-louis-area-pots-docs/c24mq

Contact Information - Local POTS Doctors

Dr Antonella Quattromani, MD, MBA, FACC

Specializes in Cardiology, Electrophysiology and Pacing

2325 Dougherty Ferry Road, Suite 205, St. Louis, MO 63122

Telephone: (314) 835-4871

http://www.premiermedicalspecialists.com/quattromani

SSM Neurosciences Institute at St. Clare Health Center

Dr. Laurence Kinsella, MD

Specializes in Neurology, Neuromuscular Medicine

1055 Bowles Avenue, Fenton, MO 63026

Telephone: (636) 496-3900http://www.ssmhealth.com/neurosciences/autonomicfunctiontesting/

SSM Neurosciences Institute

at St. Clare Health CenterWho are we?

SSM St. Clare Health Center offers the regions only specialized testing and treatment center for autonomic function disorders.

What do we do?

Autonomic nervous system testing focusing on the nerve connections between the brain, heart and other organs.

Non-invasive testing checks for imbalances that control autonomic processes that include heart rate, blood pressure, gastrointestinal function and sweating.

Tests offered: Head Up Tilt table QSART Valsalva Maneuver

Top Autonomic Diagnostic CentersThese medical institutions are top autonomic centers who can perform extensive autonomic testing as well as a full range of comprehensive testing to try and find an underlying cause.

Mayo Clinic

Vanderbilt University Medical Center Autonomic Dysfunction Center

Cleveland Clinic

It is critical that patients research a medical institution, before investing time and money, to confirm the institution is skilled in the diagnosis and treatment of autonomic dysfunction.

Journal Articles Research Updates CME VideosPatient/Parent Education Resources

Exercise & High Salt Diet TipsWorkplace/School Accommodations Info

POTS Research Registry

www.dysautonomiainternational.org

Other useful sites for information

Dysautonomia Advocacy Foundation

http://www.dysautonomiafoundation.org

Dysautonomia Youth Network of America

http://www.dynainc.org

The Dysautonomia Project

http://www.thedysautonomiaproject.org

POTS UK

http://www.potsuk.org/

The Mastocytosis Society

http://www.tmsforacure.org

Contact Information STL POTS GroupSt Louis POTS Community

Kelly Williams Group Co-Facilitator

Phone: (314) 249-0956

Email: [email protected]

Facebook Group St Louis POTS Community

This is a private Facebook group for local people with POTS, their caregivers, family and friends. Contact Kelly Williams if you would like to join.

Support Group

The support group meets the third Tuesday of each month from 5:30-7 p.m. at St. Clare Health Center at 1015 Bowles Ave., Fenton, Missouri 63026.

Website

www.potsstl.org

Medical Journal Articles

Selected medical journal articles have been provided along with a copy of this presentation.

Dysautonomia International link for medical journal articles

http://dysautonomiainternational.org/page.php?ID=112

Patient Story 1 Male, 41 years old Onset: February, 2011 (most likely had POTS since 2000) POTS Diagnosis: March, 2013 (Hyperadranergic) Other conditions: Epilepsy, MCAS, Third Space Fluid, Sleep Disorder Employment: Stopped working in October, 2013 Main Symptoms:

Easily overstimulated, adrenaline rushes, third space fluid, pre-syncope/syncope, fatigue

Advice:Accept that you have a chronic condition but move forward and live life. Push yourself and continue to fight through the symptoms but know your limitations. Find your balance. I am a big believer in accomplishing things everyday. Find the aids and assistance that increase your quality of life and allow you to enjoy the things that make you happy. Do not waste your time with people that drag you down, including doctors. Surround yourself with people you love and enjoy being around. Stay physically active. Dont forget to LAUGH and have FUN.

Patient Story 2 Female, 27 years old Onset: May 25, 2010 (onset of mono), POTS symptoms developed six months after

onset of virus around February 2011

POTS Diagnosis: July 2012 at Vanderbilt Other conditions: Chronic Fatigue Syndrome. Currently free of POTS symptoms Employment: Part time freelance writer Main Symptoms:

Fatigue, brain fog

Advice:Take nutrition seriously. Changing my diet (no gluten, dairy, sugar or processed food) changed my life, freed me from chronic Fibro pain, and helped clear my POTS symptoms. I believe theres a strong correlation between gut health and POTS. A balanced, clean diet helps to reduce the inflammation and fight harmful bacteria- plus offers incredible medicinal benefits. Also, Id encourage a daily yoga practice. Yoga helped rebalance my ANS and gave me the breathing techniques to calm the nervous system and manage stress.

Patient Story 3 Female, 29 years old

Onset: 2001 after a sever case of mononucleosis

POTS Diagnosis: (flat lined on TT, pacemaker 2003) POTS Dx 2004 at Mayo. Hyperadranergic POTS 2013 Vanderbilt

Other conditions: Dysautonomia, Mast Cell Activation Disorder, Small Fiber and Autonomic Neuropathy, Migraines, Chronic Fatigue

Employment: Disabled, finishing college degree as I can

Main Symptoms:

Dizziness, nausea, vomiting, brain fog, tremors, fatigue, headaches, body aches

Advice:

Exercise everyday, even if you do not feel like it. Find a doctor that is knowledgeable.

Patient Story 4 Female, 18 years old Onset: summer of 2011 (14 years old) POTS Diagnosis: October, 2013 (16 years old) Other conditions: Ehlers-Danlos Syndrome, craniocervical instability School: high school senior, going to college next year Main Symptoms:

Blood pooling, fatigue, lightheadedness, weakness, adverse reactions to anesthesia

Advice:You cant always control what your body does, but you can control how you react to it. A positive attitude does wonders. Research and become very knowledgeable about your condition because you are your best advocate. Make sure you are following your doctors advice and doing all that you can to improve your situation.

Patient Story 5 Female, 44 years old

Onset: June, 2011

POTS Diagnosis: February, 2013

Other conditions: MCAS, post-infectious IBS, migraines, chronic pain, sleep disorder

Employment: stopped working in 2012

Main Symptoms:

Chronic diarrhea, joint pain (hips and lower back), migraines, hypotension, fatigue and sleep disturbance

Advice:

Dont give up! Keep your head up and keep fighting! Know that, whereas there is no cure for POTS, many

patients experience improvement over time, through lifestyle changes, medication, and support. Pursue and

explore the possibility of underlying conditions and seek medical professionals who will support your

endeavor: this can be instrumental in formulating your treatment plan, symptom management, and potential

recovery. Find positive support as you learn to cope with your new diagnosis. Dont be afraid to ask

questions. Be patient with yourself. Understand that your body and mind might not work quite like it did

before and adjustments may need to be made to your lifestyle. A healthy diet and exercise (as tolerated) is

crucial. Finally, know that your life may not be the same as it was beforebut it can still be wonderful.

Patient Story 6 Female, 51 years old Onset: April, 2006 POTS Diagnosis: March, 2010 Other conditions: MCAS, Third Space Fluid, Small Fiber Neuropathy, Stroke, Capillary

Leak Syndrome

Employment: stopped working in October 2009 Main Symptoms:

Third space fluid, lymphatic system shuts down periodically, dizziness, fatigue, orthostatic hypotension, weakness, mast cell symptoms (hives, itching, short of breath)

Advice:Take one day at a time and learn your new boundaries and never give up. Your body will feel and go through many changes physically, emotionally, and mentally. Expose yourself to positive people that give positive energy, not negative people that pull energy from you. Make sure you move around whether it be walking around the house or leg and arm exercises while sitting to keep blood flowing, if you are not able to exercise. Last but not least never lose your smile and sense of humor and know that help is always here for you on good days and bad days.

Questions?

Sources

Grubb, Blair P., DANIEL J. KOSINSKI, and YOUSUF KANJWAL. "The Postural Tachycardia Syndrome: A Concise Guide to Diagnosis and Management." TECHNIQUES AND TECHNOLOGY. The Medical University of Ohio, Toledo. Web. 22 Feb. 2010.

Low, Phillip, Paola Sandroni, Michael Joyner, and Win-Kuang Shen. "Postural Tachycardia Syndrome (POTS): Management." (2009). MedScape: Medical Students. Web. 22 Feb. 2010.

Raj, Satish. "The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management." Indian Pacing and Electrophysiology Journal (2006). Pub Med. National Institute of Health, 1 Apr. 2006. Web. 22 Feb. 2010.

Raj, S. R., Biaggioni, I., Yamhure, P. C., Black, B. K., Paranjape, S. Y., Byrne, D. W., & Robertson, D. (2005). Renin-aldosterone paradox and perturbed blood volume regulation underlying postural tachycardia syndrome. Circulation, 111, 1574-1582. doi:10.1161/01.CIR.0000160356.97313.5D

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Fu, Q., VanGundy, T. B., Galbreath, M. M., Shibata, S., Jain, M., Hastings, J. L., . . . Levine, B. D. (2010). Cardiac origins of the postural orthostatic tachycardia syndrome. Journal of the American College of Cardiology, 55(25). doi:0.1016/j.jacc.2010.01.043

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Documents

STL POTS April 25 2015 Event Presentation