– 1993 History (Kathleen Adams) + 32 years of progress 

– 1995 “Disorder” 

– 2005 CVS in Adults (not just kids) & No longer considered “rare” 

– NORD, Conferences, Info sharing, etc. 

– Board Introductions 

– Emesis bags available, Gift Bags (Gin Gin donations) 

– Master of Ceremonies = Jenny Johnson 

– Roughly 50% attendees from out of state (outside CA) 

– Dr. B U K Li is also known as the “Emperor of Emesis”.

– Providers here are highly dedicated (~90% CVS written works).

– Shared some information on how Charles Darwin had CVS.

– Dramatic increase in CVS papers since CVSA was founded.

– David Fleischer “Grandpoobah of CVS” (Peds 1993, Adults 2006).

– 3rd International Symposium on CVS & CHS (Nov 2022) – Lots of new ideas presented from several different specialties.

– About 5% patients are not textbook cyclic, instead are more sporadic or episodic.

– New evidence on phenotypes (new 2025) – Parameters that differentiate CVS from other nausea vomiting disorders:

• • 4-10 Episodes in 12 months
  • >2 Hours
  • Multiple times per hour for multiple hours
  • Stereotypical episodes

– Patients are not always “well” in between episodes, some even experience a decreased quality of life (QOL).

– CVS is a very disabling condition, sometimes imposing a high enough burden that the disease is still present even when well

– QOL is not directly proportionate to severity of disease.

– CVS comfort kits were shared by Mila – A young CVS patient whose incredibly thoughtful actions were appreciated among all attendees. Her spontaneous gift was very sweet and generous.

– There are many different types of CVS (migraine makes up about 72% of the population, catamenial, mDNA, CHS, etc.).

– Disease progress (Natural history) = CVS -> Abdominal Migraine -> Migraine Has 

– Many experience daily nausea, or coalescence of episodes.

– CVS is underdiagnosed, misdiagnosed, & misunderstood. Often labeled or attributed to CHS despite negative cannabis history.

– New studies with percutaneous neuromodulation with vagal nerve stimulation being done by Dr. Katja Karrento, show positive trends, but need more time and research.

– Dr. Richard Boles has identified potential genetic markers for CVS and other syndromes 

– Endocannabinoid system and its connection to CVS (Dr. Thangam Venkatesan) 

– There is an growing pharmaceutical interest, which hopefully means that more treatment and abortive options could be coming soon.

– DGBI (Disorders of Gut-Brain Interaction) = NEW LABEL vice “functional GI” (more neurology focused).

– New ROME IV Nausea Vomiting disorders cluster.

– Common DGBI issues (altered sensation, stress sensitivity, multisystem symptoms).

– Errant ANS (Autonomic Nervous System) – Vagus nerve (parasympathetic nervous system) – Signals integrated at higher centers of brain.

– ANS balance = Wellness 

– Common CVS Symptoms:

• • High SNS vs Low PSNS (sympathetic vs parasympathetic nervous system).
    • Hypothesis (variants):
    • HPA axis (hypothalamic pituitary)
    • ANS dysfunction/dysautonomia
    • Migraines
    • mDNA
    • Endocannabinoid

–  About 40% CVS patients have dysautonomia (group of disorders affecting ANS – POTS, etc.).

• • May be worth testing (autonomic test – like motorized tilt table) but not very accessible (hard to get due to limited specialized testing centers).

–  About 90% CVS patients have abnormal sweat test and/or POTS (Dr. Venkatesan’s study 20x CVS + 20 Controls) .

– Risk of polypharmacy when condition/symptoms evolve (CVS -> dysautonomia -> Other).

– Vagal efficiency = Metric of vagal regulation (low efficiency is not good).

• • Reading: “Polyvagal Theory” (BOOK) 

– Vagal regulation impaired in CVS patients (DGBI: Vagal efficiency reduced) 

• • Targeting vagal dysregulation (stimulating auricular)
  • Increased efficiency within 20 min in unmedicated patients
  • Inhibitory effects of antidepressants, etc.
  • 100% Patient satisfaction (whether it helped them or not,). Could be a by product of physician interest or perceived willingness to help.
  • Auricular Stimulator Study (Ruthie) 

– How do we treat it?

• • Mindfulness very important (behavioral interventions)
  • Neuromodulation
  • Medications (see treatment guidelines)

– Genetics don’t cause the problem(s), they cause the propensity to get the problem(s).

– Case (Spencer):

• • Age 13, crashes with profound exhaustion
  • Misdiagnosed as psychiatric (had mDNA deletion)
  • Calcium channel A1S (subsequent genetic tests)
  • Improved with supplements à Evolved to typical CVS
  • Eventually led to remission (8+ years) 

– Mitochondrial DNA & leaky ion channels (channelopathy) very common problems/determinants for CVS.

– CVS vomiting is one little piece of a much larger problem.

– CVS, autism, chronic fatigue syndrome all have similar genetics. 

– Can sequence entire genome in 3 hours, but LONG line to get it done. AI very helpful in analyzing data.

– Proverb of 3 blind men describing the same animal (or 3 doctors describing CVS).

– “Neurofunctional” with genetic differences that predispose people to CVS (& other conditions).

– Comorbities common with CVS (pain, IBS, gastroparesis, dysautonomia, etc.).

– Sodium & Calcium ion channels (pathways):

• • Nerves fire, ions rush in = channelopathy & mDNA = pumps ions out.
  • CVS = Leaky ion channels (too much ions into cell = positively charged cells).
  • Leads to exaggerated signals (pain, nausea, etc.) due to nerves lying to them.
  • If there is not enough mitochondria (energy) to pump cells ions out again = problem (either too much in and/or not enough out).

– ALL CVS genetics found one or BOTH issues (mutations):

• • A) Cation leaks (channelopathy)
  • B) Energy transfers (mDNA problems)
  • A and/or B is why CVS cycle continues. They are still not sure why or how the cycle breaks.

– Post COVID chronic fatigue also showing leaky channels.

– Pilot MCAS genomic study (Mast Cell Activation Syndrome) – becoming more common.

– Treatments available for cation channels:

• • Mito Cocktail (Dr Boles or other) –  Helps cells pump cations back out.
  • Normal healthy diet w/high potassium + specific supplements + specific medications tailored to patient + good sleep, etc. 

– Genetics show CVS is in brainstem and vagus nerve (ANS) NOT the gut! The brain-gut connection is flawed in CVS.

–  Heads the largest adult CVS clinic in the world.

–  A CVS Diagnosis is a diagnosis of exclusion (relies on individual clinical history).

–  ROME IV criteria is not perfect or very efficient in helping to diagnose CVS. However, the ROME V coming in 2026, aims to fix this.

–  CHS presents similar to CVS, but presents itself after chronic or avid use of cannabinoid products. Physicians recommend 6-12 months of cessation to be able to assert that it is not a case of CHS.

–  Hot water bathing is not just for CHS patients, CVS patients and other people looking for non-pharmacological remedies use hot showers as well for pain relief.

–  4 phases of CVS (Well Phase -> Prodrome -> Emetic -> Recovery)

–  ANS symptoms of CHS & CVS 

• • N/V, Sweating, Photosensitivity, Hot/Cold, Diarrhea, Abdominal Pain, HA, Etc.

–  Diagnostic basics for CVS (Basic bloodwork, UGI scope, History) 

–  Cannabinoid Receptors (CB1) in brain 

–  Types of cannabinoids 

• • Endocannabinoids (body makes them)
  • Phyto cannabinoids (plants)
  • Synthetic cannabinoids (created) 

–  1990s only 3-4% THS in products, today 70-80% THS.

–  Cannabis use & CHS:

• • Duration of use (<1 year)
  • Frequency (daily/near daily is concerning)
  • Method of use (ingesting = slower; smoking = faster)
  • Age at start (effects on developing brains)
  • Concentration (potency) 

–  CHS subset of CVS (symptoms essentially the same).

–  Lot of CVS patients say cannabis helps their symptoms.

–  Potential causes of CHS/Hyperemesis. 

• • Predisposition (genetic)
  • Endocannabinoid deficiency (always a tiger in the room)
  • Potency of THC in cannabis products

–  No clear answer to differentiate CHS vs CVS other than 6 months or more of abstinence of cannabinoid products, and treatment for both is the same.

• Q1: Is genetic testing part of the Treatment Guidelines? 
  • (Dr. Boles) Not yet. I’m the only one in the field who does it. Potentially in the future.
• Q2: Do you test patient cations? 
  • (Dr. Boles) Not usually, but when we do we want them to be higher.
• Q3: How do sires, lines, conditions, disorders connect? 
  • (Dr. Boles) Dots aren’t really fully connected (MCAS, POTS, Ehlers Danlos, CVS, etc.). Maybe future of genetics will help connect the dots? TBD. But separate groups of specialists that don’t normally overlap. Some specialists cross specialties, but most are distinctly separate (stovepipes). This group of physicians and CVSA does comprehensive multi-system approach and analysis and starting to come together. 
• Q4: Meds vs Lifestyle vs Diet? 
  • (Dr. B Li) The answer can be different depending on whether the patient is a pediatric & adults are different. A multi-faceted approach is recommended for both, but is not required.
• Q5: Continuum of Normal to Devastatingly Disabling – What determines severity? 
  • May relate to ANS, spectrum of severity of disease, external factors also huge, maternal anxiety contributions, etc. Environmental factors can turn on/off genes.

– Pediatric NP w/extensive rewards/awards/history/experience with pediatric CVS.

– Relevant studies on CVS in ER & Impact of timing of treatment & How Common w/ER providers show:

• • Incidence of pediatric CVS 0.2-6% worldwide 
  • Average 2.5 years to diagnose
  • Delayed diagnosis leads to worse outcomes 
  • Only 27% providers used protocols

– Predictors of Admission:

• • Male
  • Younger
  • >24 Hours before going to ER
  • Longer wait times before antiemetics

– Types of treatment:

• • Prophylactic
  • Abortive
  • Rescue
  • Supportive

– Options on home treatment: infusion clinic, mobile IV, etc.

– Goals for QOL Project:

• • Decrease hospitalizations & Readmissions
  • IV fluids & meds within 1 hour
  • Standardized treatment plans (chart with pathway) & order panels
  • Educated staff and providers

– ESI (Emergency Severity Index) – III to II 

– 3 Cycles of Change (results):

• • ESI II Improved drastically.
  • Zofran time to dose decreased (30-40 min).
  • Hospitalization rates decreased.
  • Additional interventions & re-education for sustained improvement.
  • Multidisciplinary & communication are key.

– Strategies for ED Communication 

• • Talk to nurse manager in advance (communicate/coordinate when well).
  • Ask your GI team if one ED in your area is best.
  • Bring your own plan & records from your team.
  • If episode is atypical, consider another diagnosis (appendicitis, UTI, etc.).
  • Bring articles, share info, avoid marijuana (CHS crossover) — Marijuana skews perception of patient (discrimination) and even if used smartly, a positive drug screen is not generally going to lead to good treatment.
  • cvsaonline.org has numerous resources available to read/share.

– Sooner treatment = Better/Faster resolution/results.

– Dr. Sonali Srivastava is finishing IM residency now and will go to OSU to work with/for Dr Venkatesan as CVS/GI Fellow.

– 4 phases of CVS (long discussion) 

– Management Algorithm:

• • Avoid triggers
  • Good nutrition
  • Sleep hygiene
  • Stress management
  • Anxiety & Depression treatment
  • Abortive/rescue & prophylactic medications (based on severity and/or frequency episodes) 

– Goal of abortive treatment:

• • Decrease frequency/severity/duration of episodes
  • Common medications (sumatriptan intranasal, ondansetron(Zofran) – requires ECG monitoring, Phenergan(promethazine) – Antihistamine/sedates, Prochlorperazine(Compazine), Lorazepam, Diphenhydramine(Benadryl) – Antihistamine/sedates) 

– Prophylactic medications & treatment (If episodes severe, multiple hospitalizations or >4 per year):

• • Goal is to increase well phase and decrease severity.
  • Common medications (Amitriplyline/Nortripyline/Dupexant/TCAs, Topomax(Topiramate) – seizure med, causes cognitive/mood issues, can cause acidosis, Zonisamide – seizure med, increased risk kidney stones, requires electrolyte monitoring, levetiracetam – seizure med, requires blood & psych monitoring, Aprepitant(Emend) – Can cause neutropenia).
  • Nutritional supplements (Coenzyme Q10 & Riboflavin) – Can cause increased liver enzymes and/or diarrhea.

– Dr. Praveen Goday is a Pediatric GI & Nutritionist

– Walgreens = Corner of Happy & Healthy (CVS = Corner of Hungry & Angry) 

– 1st Shared research project with Dr Venkatesan (husband & wife):

• • Evaluate nutrition status (80 patients):
    • Patient self-assessment (43% Severely malnourished & 28% moderately malnourished)
    • Dietician assessment (50% Patients overweight/obese)
    • Malnutrition not affected by BMI* 

– Variables affecting nutrition status:

• • Common sense stuff mostly.
  • Key result was group not well between episodes (didn’t recover & eat normal/right).
  • ARFID (Avoidant, Restrictive, Food Intake Disorder):
    • Patients assessed (10% screened positive)
    • Picky eater 14% vs Loss of appetite 29% vs Fear of eating 30%

– Results:

• • Malnutrition common in moderate-severe CVS.
  • Malnutrition occurred regardless of BMI.
  • Eating disorders in CVS = Same rate as general public.

– Study #2 Healthy Eating (CVS Patients):

• • 41% Poor diet
  • 57% Needs Improvement
  • Daily intake same as controls 

– Maintain health in CVS (Vice maintaining healthy weight in CVS):

• • 5 — >5 Servings fruits & vegetables
  • 4 — >4 Meals/week with others (family/friends)
  • 3 – 3 Meals per day
  • 2 – <2 Hours screen time per day
  • 1 — >1 Hour physical activity per day
  • 0 – ZERO sugary sodas/beverages 

– Get back on regular diet as soon as possible after episodes (don’t linger on clear liquids, BRAT diet, etc.).

– Dr. David Levinthal, MD/PhD at the University of Pittsburg 

– Very interested in brain-gut connection/function of CVS:

• • What is actual pathophysiology & mechanisms of CVS?
  • What is actually happening?
  • Are there electrophysiologic biomarkers?

– What IS CVS?

• • Episodic disorder (have CVS all the time but only episodes some of the time)
  • Like other episodic disorders (4 phases)
  • Prodromes & attacks involve multiple body systems
  • ANS
  • Affective/cognitive

– Other episodic (4 phase) disorders 

– Triggers & Subtypes (neural excitability variations) 

– Comorbidities w/CVS patients:

• • 20-30% Migraines
  • 5-10% Epilepsy (increase from incidence in normal population)
  • 40-70% Mood disorders 

– Shared basis for episodic disorders:

• • CVS is a brain-based disorder.
  • Maladaptive plasticity within central neural circuit (decreased inhibitory vs increased excitability).

– Is there a threshold for CVS?

– Personalized medications for CVS patients? 

• • According to their subtype of CVS.
  • Could there be a neural test to help determine which variant CVS a patient has?

– TRMS (Transcranial Magnetic Stimulation) to assess cortical excitability (MEP, SICI & ICF) – Electrophysiology of finger response.

– NEW study Cortical Excitability of CVS:

• • Inhibitory vs Excitability responses
  • So far looks like CVS patients have less inhibitory responses. Excitability unclear as of yet.
  • Well phase vs Sick/Recovery phase testing (2 patients)
  • Lower inhibitory responses
  • 2 patients were both different than their baseline

– Pulse paired TMS Guide personalized CVS treatment?

• • Diagnostic?
  • Tailored prophylaxis?
  • Treat to target approach 

– Neural excitability: Other targets in the prophylaxis of migraine & epilepsy with potential utility in CVS:

• • Calcitonin gene-related peptide system
  • Gap junctions
  • Angiotensin system
  • Atypical neuroleptics
  • Glutamate receptor system
  • Calcium channels
  • Serotonin system 

– Background evidence & New guidelines for diagnosis and management.

– GRADE (Grading of Recommendations, Assessment, Development & Evaluation):

• • Framework for presenting evidence via systematic framework for making clinical practice recommendations.
  • Expert panel (diverse specialties)
  • 5-year process
  • Study retrospective
  • Tedious work on volunteer basis (unpaid) 

– Patients vomit differently in CVS:

• • 4-10 episodes per 12 months
  • >2 hours duration
  • Multiple times per hour for several hours.
  • Stereotypical episodes
  • Photosensitivity & diaphoresis
  • Episodes at least one week apart 

– 46% Missed by ROME IV, 48% missed by NASHPGAN.

– One-time assessment is NOT sufficient (need follow up 4-6 months later).

– ROME V & NASPHGAN 2025 diagnostic criteria:

• • Stereotypical episodes of acute onset, repetitive vomiting multiple times per hour.
  • Between 4-10 discrete episodes in the prior 12 months, lasting 2 hours to 7 days.
  • Episodes at least one week apart.
  • Return to baseline health between episodes.
  • Supportive Remarks:
    • History or family history of migraine.
    • Episodes associated with listlessness, diaphoresis, photophobia, unrelenting nausea, abdominal pain and/or incessant retching after emptying stomach.
    • Less acute or intermittent symptoms such as abdominal pain and nausea can be present between episodes.

– Recommendations: 

• • The guideline panel suggests screening with limited serum & urine tests during a vomiting episode and an UGI contrast series at any time in all children and adolescents with symptoms suggestive of CVS:
    • Malrotation risk/cost worth checking.
    • Brain tumor & other conditions may not be cost effective (unless specifically indicated).
    • NOTES: Coupled with time-limited, empiric therapy. Conditional recommendation – very low certainty in the evidence.
  • Diagnostic algorithm
  • Pediatric CVS ~80% have migraine association.
  • 2008 Consensus vs 2025 Guidelines:
    • 2025 reviewed studies much more critically & evidence-based practices.
  • Assessment of CVS severity drives recommendations and treatment guidelines.

– Summary of panel recommendations (Acute therapy):

• • 1) Non-Pharmacological (behavioral) for ALL.
  • 2) Anti-Migraine agents (triptans, NSAIDS) in those with migraine history:
    • Abortive Interventions (pharmacological).
    • The panel recommends using anti-migraine agents (e.g. NSAIDS, triptans) for treatment of acute CVS episodes in children and adolescents with a personal or family history of migraine (strong recommendation, moderate certainty in the evidence of effects).
    • Strong evidence for increased efficacy when triptan & NSAID given TOGETHER at first onset of symptoms (may need antiemetic as well to keep the meds down).
  • 3) NK-1 receptor antagonists (Aprepitant):
    • The panel suggests using NK-1 receptor antagonist (i.e. Aprepitant) for treatment of acute CVS episodes in children & adolescents (conditional recommendation, very low certainty in the evidence of effects).
  • 4) 5-HT3 receptor antagonists (Ondansetron):
    • The panel suggests using 5-HT3 receptor antagonists (i.e. Ondansetron) for treatment of acute CVS episodes in children & adolescents (conditional recommendation, very low certainty in the evidence of effects).
  • 5) Early presentation & immediate IV fluids.
  • 6) D5 – IV hydration guided by age, severity & degree of dehydration.
  • 9) Prophylactic Interventions (Non-pharmacological):
    • The panel suggests trigger avoidance (i.e. proper sleep habits) for preventing CVS episodes in children & adolescents (conditional recommendation, very low certainty in the evidence of effects).
    • REMARKS: Although other potential trigger avoidance (e.g. fasting, dehydration, overexertion, specific foods) was viewed as potentially relevant for individual patients, there was no substantial research evidence to provide evidence-based guidance.
  • 10) Riboflavin & other supplements, CoQ10 3-6 month trial vs lifetime cost of meds, magnesium glycinate (may cause diarrhea), L-carnitine (Bad results, not enough data to support) *This is a CHANGE from previous thinking/recommendations on L-carnitine.

– Recommendations for prophylactic therapy 

• • 12) β-Blockers (e.g. Propranolol) for prevention (caution asthma).
  • 13) 5-HT2A receptor antagonists (e.g. Cyproheptadine) for prevention (caution drowsiness, weight gain).
  • 14) NK-1 receptor antagonists (i.e. Aprepitant) for prevention.
  • 15) Tricyclic Antidepressants (e.g. Amitriptyline) in those who have not responded to agents with better side effect profiles.
  • 16) NOT anticonvulsants except for refractory CVS.

– Amitriptyline  

• • Side effects in 39% (50%) – Sedation, weight gain, constipation.
  • 21% Stopped medication
  • Cardiac issues:
    • QTC interval with dose increases
    • QTC prolongation
    • Torsades de pointe
  • Suicidal ideation (black box warning)
  • Drug metabolism (check levels)
    • Slow metabolizers (CYP2D6d, CYP2C19) – Increase drug levels, be cautions and attentive to toxicity levels
    • Rapid metabolizers – Decrease drug -> No therapeutic effect
  • Theoretical long-term cognitive effects (dementia risk in adults).

– Q1: How common for CVS patient NOT to have any migraine history? 

• • (Dr. Levinthal) Not everyone has a history/association with migraine, just very common.
  • (Dr. Venkatesan) Specific differences between pediatric & adults (kids more likely to have migraines; 40% less likely to have migraines).
  • (Dr. Li) If there is a history/association with migraines, the CVS patient is more likely to respond to migraine treatment. Patients without migraine tended to be more severe CVS (at least compared to pediatrics).
  • (Dr. Karrento) Often patients don’t really know true, or whole, family history and often kids even without migraine association still have associated symptoms and may still respond to migraine treatments 

– Q2: There are many who experience terrible ED experience, How do you push for pathway & protocols from outside the medical field? 

• • (Banda, APNP) Advocate ahead of time; Add PCM and/or other provider into the planning PRIOR to the episode.
  • (Dr. Karrento) Take guidelines with you to ED. They’re generic, but still helpful. Be kind, but persistent.
  • (Dr. Goday) Present as HMO money saver plan of action.
  • (Dr. Venkatesan) Care outside the ER is more accessible and less chaotic. Try urgent care, infusion center, home treatment, etc.
  • (Banda, APNP) If going to “infusion bar” make sure you have your provider inputs for what you need.

– Q3: Patients working with their own doctors, How do we get access to articles, research, etc. to share & educate our local providers? 

• • (Dr. Karrento) Guidelines are OPEN access, or widely available, but many published studies/trials cost money and so they are not FREE to acquire or share.
  • (Dr. Levinthal) Look up studies being done and check criteria & eligibility and see if you can get enrolled. Participant travel reimbursement is limited if at all, but great way to get current information.
  • (Dr. Frazier) Many medical libraries can provide access to FREE articles.

– Q4: Are protein drinks in recovery sufficient? What should caregiver eat when patient is sick so that they don’t disrupt or trigger them? 

• • (Dr. Goday) Caregivers can hide and eat whatever they want. Need to balance (fat, carbs & protein), not just protein! Boost, Carnation, Ensure, etc. are decent balanced nutritional options. We don’t really know exactly what diet it BEST, but it is important to go back to normal healthy balanced eating ASAP after episodes. 

– Q5: Medication recommendation changes? Concerned now about possible damage(s) done by having taken the medications that we are now moving away from?

• • (Dr. Karrento) Live & learn & adapt (shift algorithm). Big change is adopting/lifting non-pharmacological treatments and options.
  • (Dr. Venkatesan) Neuromodulators vs Antidepressants, no evidence that TCAs cause dementia (yet). Adult CVS (not peds) – Amitriptyline has SAVED so many adults.
  • (Dr. Karrento) Associations not necessarily causations. Must assess risks vs effectiveness.
  • (Banda) Better insurance coverages have allowed newer/better meds (instead of TCAs).

– Q6: Abortive medications, specific order to take or all at once? 

• • (Dr. Levinthal) Take them all together as quickly as possible. 2-3 mechanisms at once (triptan, anti-emetic, sedative, as an example).
  • (Dr. Venkatesan) 2+2=5 (whole is greater than the sum of the parts due to additive effect of combining medications). Take them together ASAP for adults. PPIs said to have association with dementia as well, but still need to take them sometimes. Take associations with grain of salt and talk to your provider about your concerns.

– Works with Dr. Karrento & team (primary psychologist for CVS program).

– CBT (Cognitive Behavioral Therapy) – thoughts, feelings & behaviors.

– A note about stigma and invisible illnesses, we acknowledge your symptoms are real and the psychological factors are also legitimate and real too.

– Biopsychosocial Model:

• • Bio (Body)
  • Nervous system
  • Genetics
  • Injury/Illness

– Psycho (Brain):

• • Thoughts & memories
  • Feelings
  • Behaviors
  • Attention
  • Coping Skills 

– Social (Environment):

• • Stress
  • Relationships
  • School/Work
  • Community support

– Some things we can’t change; some things we CAN change. Things we can do to bring back more healthy and “normal” ANS (most effective ones are used long term):

• • CVS patience have an imbalance or sensitivity in the ANS (Fight or Flight response).
  • Psychology tools can bring balance by promoting the relaxation response.
  • Tools (See slides) – Things you can think, feel & do.

– Education:

• • Combats stigma
  • Validates symptoms
  • Arms you with things to do, hope.

– Lifestyle:

• • Consistency is key (same schedule even on weekends & nighttime sleep > naps).
  • Bedroom environment (bed is ONLY for sleeping, quiet/dark/cool, limit screens).

– Relaxation Skills (Foundation of CBT): 

• • Mindfulness
  • Belly breathing
  • Guided imagery
  • Biofeedback 

– School Support:

• • Create a 504 plan or health plan
  • Flexibility in morning classes
  • It can be beneficial to go to school with mild symptoms, rather than staying home.
  • Be proactive
  • Find a point person 

– Caregivers:

• • CVS impacts the WHOLE family
  • You have some basic needs
  • Using support systems
  • Finding additional support 

– Key points (summary):

• • Symptoms are real
  • Psychological support is more than just talk
  • Brain body skills
  • Whole family support 

– Non-mainstream practices alongside medical treatments:

• • Meditation/Mindfulness/Heartfulness – Regulates autonomic tone, reduces stress.
  • Hypnotherapy – Focused on gut control and relaxation. Effective in IBS (70-80% improvement). Reduces sensitivity & stress.
  • CBT – Reframes thoughts, improves coping.
  • Yoga – Enhances vagal tone, reduces inflammation.
  • Acupuncture – Modulates sensitivity, autonomic function.
  • Biofeedback – Regulates physiological responses.

– WHOLE person concept

– DGBIs (formerly functional GI disorders)

– Recently conducted study (used an app) to test heartfulness meditation:

• • Cannot measure thoughts, only outcomes.
  • Used app to track body reactions over 6 weeks or practicing meditation (state vs trait).
  • Measured endocannabinoids pre & post meditation (weeks 1, 3 & 6).
  • Saw improvements in state anxiety (trait took longer).
  • Overall improvement of QOL (sleep, etc.).
  • Must do things consistently to see results & establish habits.
  • Endocannabinoid changes weren’t seen until week 6 (takes time to affect change).

– 10-minute abbreviated meditation led by Dr Venkatesan.

– Rationale & overview of why and how they do things the way they do in their clinic.

– Psychogastroenterology – CALL FOR ACTION 

– Behavioral interventions highly effective. Need to incorporate non-pharmalogical interventions to treat more fully and effectively rather than former gut-centric approaches (DGBI).

– Psychosocial impact of CVS:

• • Anxiety or stress-triggered episodes (34.8% patients).
  • Increased risk of anxiety disorders (64-82% met criteria).
  • Lower QOL compared to healthy controls and IBS (anxiety symptoms stronger predictor or QOL than CVS characteristics).
  • Caregivers:
    • 59% Endorsed having anxiety or mood disorder.
    • Episode duration, delay in diagnosis, number of absences can lead to Lower QOL.

– CVS multi-disciplinary program & approach enables more perspectives about same patients & increased insights:

• • Initial evaluation with both MD & Psych at same time.
  • Follow-up visits are separate med & psych.
  • Care coordinated between specialties between visits.
  • Multiple pathways for psych involvement.
  • So far 96 patients have some through program (not only CVS).
  • Goal to have psych at every CVS clinic (virtual option added).
  • Costs more per visit (due to separate providers billing separately for appt).
  • Requires more coordination to schedule, plan, etc. BUT Better for patients and providers “We think it’s worth it”.

– Dr. Rosita Frazier helped id the translation for the CVSA brochure into Spanish.

– CVS is a “life disruptor” and it affects the entire family.

– Complex & convoluted diagnostic journey (may leave scars from experiences).

– CVS can look like a LOT of other things (diagnosis of exclusion).

– Cannot just focus on the nausea and vomiting, really need to look at WHOLE elephant “picture”.

– Diagnosing DGBI:

• • Symptom-based diagnoses:
    • Takes time
    • Must communicate well (express symptoms)
    • Comprehension (both patient and provider)
  • There are no biomarkers currently linked to CVS.
  • Low/Limited provider exposure/awareness of CVS curing training
  • Presence of comorbidities
  • CVS mimics other conditions
  • Confounding conditions (esophagitis, gastritis, hiatal hernia, etc. – cause vs effect) 

– 50% CVS patients provide description of being accused or treated like drug seeker, psych, Munchausen, etc. 

– CVS has SEVERE impact on mental, physical & social aspects (WHOLE) life – EVERY aspect 

– Daily Living (Tips & Strategies):

• • Be a prepared patient:
    • Health folder
    • Medication Bag 
  • Be empowered patient.
  • Identify your triggers (modify or avoid them).
  • Identify your prodromal symptoms (abort early).
  • Have an action plan ready & available (take it with your during episode).
  • Set boundaries (living with CVS can be overwhelming – OK to prioritize your well-being).
  • Use biobehavioral tools to help regulate the gut-brain axis.
  • Support your mental health (essential NOT optional).
  • Connect with others (help and be helped).

– ED Visits  

• • Be prepared:
    • Seek a Diagnosis.
    • Locate a treating physician.
    • Try medications, identify what works & what doesn’t for you.
    • Keep a record of previous & most recent tests.
  • Prepare for the encounter:
    • Prioritize your concerns, or primary struggle/pain points.
    • Communicate effectively.
    • Actively listen & engage, take notes and ask questions.
    • Be patient & respectful.

– Typical vs NEW symptoms 

– CT Scans: When & how many vs alternate tests like ultrasound, low-dose CT, etc.

– EGD: (esophagitis – usually secondary, hiatal hernia – usually not relevant to presentation, gastric ulcers).

– ED letter with treatment plan (from PCM or specialist):

• • Diagnosis
  • Definition/Criteria
  • Therapeutic Goal
  • Testing
  • Treatment
  • Disposition 

– Hospital Care Plan:

• • Bundle vitals & medications (limit interruptions of rest).
  • Bring comfort items.
  • Minimize light & noise disturbances.
  • Utilize a do not disturb sign on door as needed if allowed.
  • Request a solo or private room if possible.

– Where are we now: CVS Landscape:

• • ROME criteria for CVS:
    • ROME III (2006)
    • ROME IV (2016)
    • ROME V (2026?) 

• • Pediatric Consensus Statement – NASPHAGN & CVSA (2008, 2025)
  • First EVER adult guidelines for CVS (2019)
  • First textbook on CVS (2022) 
  • First drug in development for CVS (2022) 
  • 2nd NASPHGAN guidelines for CVS in children 

– CVS: The Journey:

• • Gee, SJ (1882) “On fitful or recurrent vomiting” (Saint Bartholomew’s Hospital Reports 18:1-6)
  • 1st International Symposium (1993)
  • 2nd International Symposium (1998)
  • 3rd International Symposium (2022) 

– Recent 3rd Symposium Highlights

– The Future:

• • Multicenter Registry
  • New drug trials
  • Studies 
  • 4th International Symposium (2027?)
  • Funding Efforts (CVS not NIH priority) 

– Q1: Do you have any Pre/Probiotic recommendations? 

(Dr. Venkatesan) We don’t have enough data yet, part of future efforts, to recommend anything yet. Multicenter registry ideally would include (stool, blood, saliva, & other samples).

(Dr. Boles) Other entities/agencies/problems Do have this. We are not there yet for CVS unfortunately.

– Q2: Coalescence (chronic continuous nausea), How to treat it? 

(Dr. Karrento) Coalescence may be byproduct of multiple comorbidities and factors. Evaluation & treatment may be complex and must be treated individually. Though we don’t know why it happens and can be difficult to discern because of other comorbidities. We treat the symptoms as we can.

(Dr. Frazier) Carbidopa may help with certain types of nausea. More to come (POTS, etc.) Can use scopolamine patch (granisetron/Zofran). 

– Q3: Is AI used for research? Do you think it will help? 

(Dr. Frazier) Pharm is using it already, not clinically but for research. We do also use for medical education and administrative functions.

(Dr. Venkatesan) Machine learning is taking place, but overall is not ready yet for per patient use. 

– Q4: Infusion centers were mentioned as alternatives for IV and nutrients, what should we add? 

(Dr. Venkatesan) Not enough data yet on what else to try. Fluids will help and most of the nutrients won’t likely hurt, but it is unknown what else may help, so I have not other recommendations yet. 

– Q5: How common is it that a person with CVS doesn’t have known trigger? How common do abortive therapies not work? 

(Dr. B Li) 75% of CVS patients have triggers and/or internal calendars, whether it is known or unknown to them. 60-70% respond, but there are many who don’t respond to commonly recommended therapies, but it is not uncommon to “fail” some treatments. 

(Dr. Venkatesan) A part of it is use and patient education, when & how to take what. A patient may not have enough time to get it in and active before the puking starts in some cases. 

(Dr. Boles) Often D5/D10 alone (or with potassium) can be enough to break an episode even without medications. 

– Q6: Is there a system (Kaiser, etc.) you recommend to go through to get answers and diagnosis? 

(Jenny) CVSA has a list of providers that are CVS aware and/or treat CVS patients. You can use that to help find a specialist in your area. 

(Dr. Karrento) Find a neurogastroenterology center (most are CVS savvy) and they are in all major cities. 

– Q7: Adult child to ED, what papers are needed to be able to speak for them as patient?

(Dr. Venkatesan) Have provider written ED plan for their tailored CVS treatment. Go when well to prepare ED/providers ahead of time. Exercise patience & be kind. Be as prepared as you can. 

(Dr. Frazier) Lot of patients get labeled “bad actor” or “bad attitude”. Carry power of attorney or go get a name on chart ahead of time so that you’re able to speak for them when you are not sick. 

(Dr. Karrento) Generic protocols (adult & peds) are available to help your provider (PCM) plan ahead for ED visits having them on your file before you go in. 

(Jenny) Pre-coordinating with the nurse manager ahead of time to share paperwork and plans can also help.

(Dr. Venkatesan) Try not to view/treat the ED staff as adversary. They are prioritizing care & like to have guidelines and plans, especially when you have plan that is signed by a physician.

– Q8: 35 years physical (no psych aspects cared for) now 39 years old CVS and have PTSD – Where do I get psych care to help her overcome this? (neuropsych) 

(Dr. Brown) It can be very hard to find a good therapist. Even harder to find a specialist therapist on neuro-GI-psych. Try going to an academic medical center near you and ask for GI or health psychologist. 

(Dr. Venkatesan) ROME foundation has a list of providers/therapists.

(Dr. Brown) Psychologists have psypact licenses that you can see virtually (out of state).

(Blynda) My son was adolescent, which in my area was tough fit to find a psychologist focused on chronic illness overall, let alone CVS specific.

– Q9: Can intense hiccups be a symptom of CVS? I have twins who both have it.

(Dr. Venkatesan) It may or may not be your CVS, but may be something else. Could be attributed to vagal or comorbid conditions.

(Dr. Karrento) I have seen a patient with vagal neuropathy with this. It is not easy nor common  in many CVS patients.

(Dr. Boles) May be related to channelopathy, anxiety, chronic fatigue or other comorbid conditions. Hard to say without more background.

– Q10: Some providers do NOT accept plans/letters no matter what. Some do universal treatments no matter the CVS story. However my CVS patient struggles with intense pain and most deny what works best for them, What do you do when that happens?  

(Dr. Levinthal) You can’t control all providers/EDs, nor their institutional protocols. Non-narcotic alternatives (ketamine). Do not EVER ask for narcotics!

(Dr. Venkatesan) Refractory patients (had patient do IV ketamine and got him off drugs & back to life). Ketamine addiction potential is not known. Has been used in severe depression and may possibly be a future pain option eventually? 

(Dr. Boles) Pain is one of the most common and most severe comorbidities with CVS. 10% CVS patients have CRPS (Complex Regional Pain Syndrome). I use sodium blockers, SSRIs, etc. to treat and mito cocktails. Pain is tricky, but easier to treat than most of the other CVS issues. 

– Q11: Histamine connections to CVS?

(Dr. Karrento) Yes, we see MCAS as part of CVS symptom complex. We are acknowledging more, but don’t know  yet what to do. Go to allergist who does black and white MCAS evaluation then discards idea. Dysautonomia progressing and connecting w/MCAS & CVS. Treatments are coming. We are trying and learning from our patients, still lots of trial and error treatment.

(Dr. Levinthal) Most antihistamines have a sedative effect so it is hard to differentiate responses with CVS patients, since usually sleep helps.

– Q12: Marijuana may be a mast cell stabilizer? 

(Dr. Venkatesan) Very complicated & we don’t yet know. CB1 & CB2 receptors, acute vs chronic use of marijuana, antiemetic vs destabilizer.

– Q13: L-Carnitine – Increases good or bad cholesterol? 

(Dr. Boles) It can be used and has been found helpful, but it is highly recommend that the patient is monitored.
 

– Focusing attention; calming body & mind; Remove distractions 

– ANS break 

– How to:

• • Choose focus
  • Narrow focus
  • Meditate

– Techniques: 

• • Breathing
  • Progressive relaxation
  • Guided memory/imagery
  • etc.

– Used SLIDO (QR code) to get people’s words to describe how they are feeling now in real time on the screen.

– “Each morning we are born again, what we do today matters most” – Buddha 

JENNY JOHNSON 

– Eleanor the Great, brief story about her daughter.

– CVS Megan (met on FB):

• • Keep living and adventuring! 

• • Reminder her to understand the sick will happen, but they (you) don’t will remember the trips & the good stuff, not likely the CVS episode that happened in the middle of it. 

– Colin, son, is now also diagnosed with CVS, but it is minor.

– I refer to myself as a “Warrior love Avenger”, because “momma bear” didn’t feel sufficient.

– Taking the time to realize & acknowledge the love, joy and wonderful people and care along the way, especially when in the midst of your darkest times. Seeing the blessings while dealing with the curses.

– Excellent reminder to be kind. Be patient. Be persistent. Be your own advocate. Don’t be ugly/mean/rude, just move on. There are SOOO many great providers. Keep trying until you find one that works for you.

– Live rather than shelter and avoid (“pillow fluffing parents”). Anxiety & depression will make CVS (& EVERYTHING) much worse. It’s a spiral.

– Sleep & rest are paramount. The emotions are real & normal. Take a moment, then get up and dust yourself off & get back out there and LIVE!! 

– Eleanor, daughter, mentions her one requirement for collage saying, “I will not go to a college that does not approve my single room accommodation request”. This was her once requirement, that she stayed steadfast on.

 

ELEANOR JOHNSON 

– Will be attending University of Iowa this fall 

– Top 3 tips for surviving high school with CVS:

• • #1 Don’t feel ashamed of having CVS:

• • • Don’t let fear, shame, embarrassment about your condition become fear, shame or embarrassment about yourself.
    • You have CVS, CVS does NOT define you!
    • CVS = unruly roommate sharing your body.
    • Looking outside yourself makes you feel better.
    • Imagine if EVERYONE had CVS. How would THEY act? All the things you are embarrassed about would be totally normal.

• • #2 Advocating for yourself can take different shapes and forms: 

• • • • Kids don’t know what “advocating for yourself” means.
      • Recognize that you NEED and DESERVE the accommodations. Figure out what you need.
      • Good friends will want to support and accommodate you. Just as you would for them. 
      • Bravely asked her pediatrician about alcohol & marijuana.
        • What if?
        • Not interested in possibility of puking.
        • Medication interactions with alcohol?
        • Satisfied her curiosities and answered questions in safe space.
      • Advocating can be messy, scary, etc. But it’s worth it. 
  • #3 Moderate, Moderate, Moderate:
    • Instead of not doing something, adjust it to meet your needs (leave early, take breaks, etc.).
    • Take the chance to try things. Plan, moderate, recovery plan, etc.
    • Be as normal as possible within your own framework (mental & physical).
    • Perseverance can lead to successes, and rewards. You learn that you CAN do things.
    • Swim instructor vice lifeguard duties (doing, participating, trying, moderating, modifying).
    • Know your limits. Plan options to accommodate (backup plans, breaks, etc.) Moderate. Manage your expectations but DO the things you CAN do.