2022 Dysautonomia International Conference- Day 3 Notes

Day 3’s topics are primarily about treatments. I stuck to the lectures about newer/novel treatments.

Diet and the Neuroimmune Axis: Implications for Dysautonomia. By Laura Pace MD PhD.

• Although elimination diets can be life-saving interventions for those with celiac disease, protein allergies, and genetic metabolic disorders; they can be potentially dangerous for other populations. These populations would include people with functional GI disorders, GI motility disorders, and abdominal pain syndromes.
  • This is because diet interventions impact the entire neuroimmune axis.
  • Dr. Pace promotes more prescriptive diets based on the use of confocal laser endomicroscopy to determine non-IgE mediated food allergies.

Cannabis as an Adjunctive Therapy: Review of the Evidence. By Jeffrey Boris MD.

• So far, there have been studies concerning cannabis and: seizures, pain, nausea, inflammatory bowel disease, sleep, cancer, epidermolysis bullosa, and eczema. Some studies are more promising than others.
• Studies on cannabis reflecting autonomic effects have been a mixed bag of whether the effects would be beneficial or harmful.
• Cannabis could be used for some Dysautonomia symptoms such as nausea, insomnia, pain, headache, and appetite. HOWEVER, it can worsen: lightheadedness, tachycardia, fatigue, brain fog.
• Anecdotally, Dr. Boris has had some patients to okay with cannabis while others did not respond well.
• More concerns about cannabis include: content (contaminants) and limited research on medication interactions.
• There is a definitive downside to both smoking cannabis and any use by adolescents/young adults.

Low Dose Naltrexone Use in Dysautonomia and Chronic Pain Conditions. By Pradeep Chopra MD.

• Low dose naltrexone (LDN) is a disease modifying agent, not a bandaid/symptomatic treatment. which makes it unique.
• LDN is NOT an opioid and is non-addicting. However, regular dosed Naltrexone is typically used for drug addiction. Make sure that you communicate to your medical team what you actually use it for.
• It is used for chronic pain, neuropathic pain, autoimmune dysfunction, MCAS, fatigue, and brain fog.
• Side effects can include: headache, insomnia, and colorful dreams. These side effects usually go away over time.
• A patient should give at least 6 months to determine if it is useful, although many can start to notice a difference within a few weeks.
• LDN must be ordered from a compounding pharmacy. It should be compounded for immediate release. You may ask for it to be compounded without fillers etc.
• It should be taken once per day. The dose can start very low and gradually work up to 4.5 mg per day.
• LDN does not stay in the body for very long (roughly 24 hours).
• LDN works by creating a positive feedback mechanism the increases endorphin and enkephalin production. Endorphins and enkephalins are useful for pain management. Enkephalin also plays a role in cancer, cellular renewal, and wound healing.

Autoimmune Dysautonomia- What About IVIG for POTS? By Steven Vernino MD PhD.

• The autonomic nervous system and immune system are highly interrelated.
• POTS may have an autoimmune etiology. There are also autoimmune forms of Dysautonomia (ex. AAG).
• Clues of autoimmunity in POTS
  • It primarily affects women, which autoimmune diseases primarily affect as well.
  • Onset may follow an infection or other physical stress.
  • There is an association with hEDS and mast cell hyperactivity.
  • There is an association with other autoimmune disease like Sjogren’s syndrome.
  • There is a higher prevalence of autoantibodies.
  • The jury is still out on the role of the prevalence of g protein coupled receptor antibodies.
• POTS is heterogenous. Not all forms are autoimmune.
• Based on case studies so far, IVIG is shown to improve Dysautonomia symptoms, but there are some side effects like headaches.
• IVIG works by:
  • Binding to FcRn receptors to increase the turnover of IgG.
  • Inhibiting B-cells and regulating T cells.
  • Neutralizing some pathogenic antibodies and cytokines.
  • It does NOT suppress immune function.
• Risks of IVIG:
  • Kidney function impairment
  • Blood clots
  • Allergic reaction
  • Headaches
• Dr. Vernino’s group is looking at the effect of IVIG on POTS in a randomized, double blinded study.
  • The study is in progress and will be complete in fall of 2023.
  • It is too soon to report on results, especially since they are blinded.
  • Dr. Vernino’s group is collecting serum throughout the study and Compass 31 scores which the indicate the severity of autonomic symptoms.
  • So far, the infusions are generally well-tolerated. They are using a relatively low dose of IVIG.

What were your takeaways from day 3 of the conference?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

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