Dysautonomia International Conference 2020- Day 1 and 2 Notes

Wow! So far, the conference is the bomb. I highlighted and summarized the new and consequential information that I gathered from the sessions I attended on Day 1 and Day 2.

In about a month, they will email the sessions in a downloadable form to conference attendees. So, if I missed a session you were particularly jazzed about, I’d be happy to include an overview of it later. Also, it looks like you can still register for the conference if you want to receive those sessions at a later date.

Overview of POTS- Dr. Satish Raj

If you are a new POTS patient or a loved one of a POTS patient, this would be a great lecture to listen to. My husband listened to this session and appreciated it as it helped increase his understanding of POTS. As I mentioned above, it looks like you can still register, and then you can access this when they email the recorded sessions out. If you are familiar with POTS, you most likely know a lot of what Dr. Raj said, so I only highlighted the new information I gathered.

• A quote by David Robertson about why POTS occurs: “It is a ‘final common pathway’ of hundreds of genetic and acquired autonomic and cardiovascular entities.” To put this in a simpler way, it is thought to have multiple complex causes.
• It is understood that hyperadrenergic POTS is less about creating too much norepinephrine, but rather the norepinephrine wasn’t cleared as efficiently.
• 70% of POTS patients have low blood volume. I was surprised by how high this figure is.

Gastrointestinal Motility in Autonomic Disorders- Dr. Laura Pace

Dang, Dr. Laura Pace is fire. You can tell she has a heart for the Dysautonomia community and takes her job seriously.

• The autonomic nervous system innervates many parts of the gastrointestinal (GI) system, so it makes sense that autonomic dysfunction and GI dysfunction go hand in hand.
• She spoke primarily of motility (movement of stuff in the GI tract) disorders of the GI system.
• There are high rates of GI motility disorders in patients with Dysautonomia.
• Routine testing for motility disorders only identifies dysfunction, not the mechanism. Dr. Pace uses biopsies to identify the mechanism (ex. neurodegeneration, immunological dysfunction, etc.).
• An example of a common immunological dysfunction that goes along with Dysautonomia patients is mast cell activation syndrome (MCAS). So, in these biopsies, Dr. Pace may see an infiltration of mast cells.
• Dr. Pace told the story of a 17 year old patient she was consulted on. The patient (has POTS and hEDS) was admitted to the hospital and diagnosed with anxiety and an eating disorder. She literally could not eat. The doctors did a gastric emptying test, which came back normal, and then refused to do any further testing. The patient then came to see Dr. Pace who discovered that she had intestinal failure (diagnosed using the SmartPill). For example, her small intestine took more than three times the upper limit to clear the pill. This demonstrates how important it is to advocate for yourself and seek doctors that are willing to listen and look beyond the basics.
• 90% of Dr. Pace’s patients with Dysautonomia have GI dysmotility. It’s important to note that this does not mean that 90% of people with Dysautonomia have GI dysmotility, that just means that 90% of her patients, which must have a certain level of GI distress, have dysmotility.
• Dr. Pace also discussed confocal laser endomicroscopy. It is an evidence-based way to determine which foods should be eliminated. I had no idea that such a procedure even existed.
• Dr. Pace said, “Gastroenterologists can do better than diagnosing functional disorders like IBS.” Preach.
• She treats dysmotility by addressing the underlying cause, not the symptom. So, she will treat the underlying dysautonomia, immune disorder, etc.
• When asked if there are problematic foods we should avoid she said processed foods. They contain compounds that break down the mucosal lining of the GI tract making it more vulnerable to everything. She also said that fiber is important to the microbiome.

Sex Hormones and Dysautonomia- Dr. Svetlana Blitshteyn

I would like to give a shout out to Dr. Blitshteyn. She is a dedicated physician and researcher who has done great things in the field of Dysautonomia.

• There is a strong hormonal association with Dysautonomia. Dr. Blitshteyn said the causes of Dysautonomia are primarily thought to be genetic, but it is amplified by hormones. This is demonstrated by the worsening of symptoms seen during menstruation, postpartum, and after ceasing lactation.
• An interesting thing she noted is that sex hormones regulate inflammatory responses.
• Progesterone blunts sympathetic outflow which helps shift the balance toward parasympathetic nervous system activity. Progesterone also stimulates nitric oxide synthesis. Both of these factors play a role in symptom severity, which we can see are partially governed by progesterone.
• There has been an interesting study where three transgender males receiving testosterone experienced an improvement of POTS symptoms. Dr. Blitshteyn has also observed this in two of her own patients.
• Dr. Blitshteyn has a personal observation that some men with POTS, NCS, or OH may have lower than normal testosterone. When she sees this in clinic, she refers those men to see an endocrinologist.
• Dysautonomia patients tend to have a higher incidence of gynecological disorders such as endometriosis, ovarian cysts, uterine fibroids, menorrhagia, etc.
• Dr. Blitshteyn hypothesizes that the abrupt drop of progesterone and estrogen postpartum may contribute to the onset of POTS.
• POTS and hEDS are not contraindications to pregnancy (depending on comorbidities, of course).
• When asked if physicians ever treat female POTS patients with testosterone she said it is controversial so, no. Although some experience improvement (like the transgender male patients), testosterone bears cardiac risks and the risks outweigh the benefits.
• Dr. Blitshteyn has had some patients whose onset of Dysautonomia correlates with fertility treatments. She said some people are sensitive to hormones in this way.
• Interestingly, Dr. Blitshteyn noted that her male patients tend to fare better overall. She said that although they are sick, their cases tend to be more mild. Most of her male patients can still work and exercise.
• My overall takeaway is that there is a strong correlation between symptoms and hormones that should be studied in further depth. Dr. Blitshteyn called on researchers a few times to look deeper into these matters. At this point, there does not seem to be any way to harness this knowledge into any sort of treatment.

Autonomic Regulation of Glucose- Dr. Cyndya Shibao

I missed the beginning of this lecture and listened to the rest leisurely, so my takeaway is very basic.

• POTS patients typically have a normal fasting glucose. However, upon a glucose tolerance test (like what pregnant women do), many POTS patients to have an abnormal response.
• A hemoglobin A1C test is more effective than a fasting glucose test at identifying POTS patients that may have prediabetes or diabetes.
• This is an important consideration for physicians with POTS patients, especially if there is a family history of prediabetes or diabetes.

Autonomic Regulation of the Immune System- Dr. Kevin Tracey

This was the keynote lecture of the conference. It was fascinating and I would highly recommend checking out his work.

• Dr. Tracey has been studying the role of the nervous system on the immune system for decades.
• Up until 1900 most people died of infection. Nowadays, most people die from diseases of inflammation such as cancer, heart disease, stroke, neurodegeneration, diabetes, etc.
• What causes these diseases of inflammation? Dr. Tracey discussed the cytokine theory of disease. In certain situations, inflammatory cytokines such as TNF, IL-1, or IL-6 elevate to toxic levels causing disease or even death.
• Naturally, the first thought is to create drugs that block these cytokines. An example of one of these drugs would be Humira as it is an immune modulator that blocks inflammatory cytokines. Unfortunately, these drugs are expensive and do not work for 30-50% of patients. They also have the potential to cause severe side effects.
• Upon creating a new cytokine-blocking therapeutic, Dr. Tracey and his team realized that although they were only injecting the drug into the brain of test animals, other organs in the body were showing lowered levels of inflammatory cytokines. It was impossible that the drug perfused into the other organs, which made the research team realize that there was a nerve signal that must be communicating to the body to block the production of inflammatory cytokines. To test their theory, they cut the vagus nerve. Sure enough, the other organs began producing inflammatory cytokines again. How crazy is that?
• Dr. Tracey began asking, might electrons replace drugs to control cytokines? This has been the direction of his research since that point.
• Subsequent studies demonstrate powerfully that vagus nerve stimulation devices significantly lower inflammatory cytokines like TNF.
• Clinically, many patients involved in these studies experienced significant improvement of symptoms and some even experienced remission. The diseases he discussed trials of vagus nerve stimulation on were Crohn’s disease and Rheumatoid Arthritis.
• They are now even using artificial intelligence to decode the neural activity recorded on the surface of the vagus nerve in mice. This will help them understand the mechanisms of this neuro-immune connection even better. On a random side note, I am pleased to see such an innovative and positive use of AI.

• Using fluorescence in mice and other cool things, they were even able to find the home in the brain where the signal to the vagus nerve originates.
• The most recent vagus nerve stimulation device iteration is the size of a penny. It is periodically charged by a collar and controlled on a tablet by a physician. Talk about some Jetson-level stuff…
• Dysautonomia International is currently funding three separate studies looking at auricular transcutaneous (attached to the external ear) vagus nerve stimulating devices. Lauren Stiles, the head of DI, asked if this is an acceptable way to stimulate the vagus nerve or if it must be done surgically in the neck. He said in studies so far it seems like the transcutaneous auricular devices work, but the mechanism is less understood as the vagus nerve branch in the ear is a sensory branch. He thinks there may be use for both in the future.
• There is evidence in diseases like Rheumatoid Arthritis that the vagus nerve impairment precedes the RA. Dr. Tracey said it’s possible that POTS is caused by vagus nerve dysfunction.
• Vagus nerve stimulating devices have breakthrough designation through the FDA, so we will know a lot more about their availability in a few years.
• In the meantime, lifestyle methods may support vagal tone. I discuss these in my post on Vagus Nerve Stimulation. In addition to the lifestyle methods I discussed, Dr. Tracey also mentioned fish oil.
• Theoretically, it is possible to overstimulate the vagus nerve but Dr. Tracey has not seen in happen in practice in any study or clinical setting. He said evolutionarily, our bodies are adapted to not immunosuppress in such a way.
• My main take home point to this is… let’s fast track these suckers and in the meantime I’m going back to taking cold showers.
• If you would like to learn more about Dr. Tracey’s work and vagus nerve stimulation, check out Cort Johnson of Health Rising’s article.

Stay tuned, I will post summaries from Saturday and Sunday shortly after the conclusion of the conference. If you have any questions or requests, leave me a comment or email me at dropitlikeitspotsblog@gmail.com.

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.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.