I’ve mentioned this in the past, but I like to keep a working list of things I want to try or continue to work on to improve my life with POTS and ME. This practice gives me hope by showing me that I still have options to improve. My list in 2021 looks quite different than it has in the past as it is more about fine-tuning. This is due to the fact that I operate around 70% of my pre-illness function and I have exhausted most treatment options.

Disclaimer- This list applies to my specific set of circumstances and not POTS or ME patients in general.

Manual and Traditional Physical Therapy

During the Dysautonomia International Conference last year, Dr. Rowe mentioned that he recommends manual physical therapy for his patients. It helps the tissues in the body become more balanced and less restrictive which can help with efficiency and fatigue. I am very intrigued to give this a try and plan to get the ball rolling on it in the fall. I would also like to work with traditional physical therapy methods to restore strength to weak areas if I can’t get there on my own.

Movement

I recently read Katy Bowman’s new book called Grow Wild and it has inspired me to continue moving with more frequency and variety as I model this for my kids. Our bodies require frequent and diverse movement (not just exercise) to function properly. To learn more about this concept, check out Katy Bowman’s book Move Your DNA as well as my post about How I Incorporate Natural Movement.

Note- The amount I can move is still limited by fatigue. I cannot function normally for a whole day at this point. So, increasing movement for me includes having more variety in the positions I rest in. Here is an example: rather than sitting in the recliner with my legs tucked up close to me the entire time I rest, I also lay and sit on the floor in various positions.

Nature

I speak about this in my post on the Health Benefits of Spending Time in Nature. I would like to continue to increase the amount of time I spend outside. My next step is to work on eating or preparing food outside.

Perhaps the preparing is a better idea. I don’t know if I could get my husband on board to eat outside. He is a very rational and collected man. However, wasps are his Achilles heel. I have seen this grown man sprint and flail wildly because the shadow of a wasp-sized object passed by him. Each year he schemes up new plots to defeat his wasp foes only for them to be promptly foiled. My favorite was when he duct taped together 3 broom handles to create a mega-stick to knock the wasp nests. He wore a full sweatsuit with the hood up, duct taped ankles and wrists, a mask, and lab goggles. I haven’t been very motivated to solve the wasp problem because it’s just too darn entertaining to watch this carry on. However, if you have any bug and especially wasp-related tips, please share them.

Ditching the sugar

For the most part, I eat a very healthy nutrient-dense diet. However, I would like to do a trial of no added sugar to see how it affects the GI issues I get (primarily bloating with occasional pain). I have done other eliminations that make me suspect that certain amounts of sugar are problematic for me.

Food

As it is said, “Let food by thy medicine, and let medicine by thy food”. Dietary changes have been beneficial for my energy levels, so this is an area I always work to more forward in. I would like to continue to expand the variety and quantity of plants that I eat. I would also like to incorporate more fresh herbs and spices.

Switching up strength training practices

I exclusively did yoga for my strength training for almost a year and sadly it left me with some issues. My knees are prone to getting chondromalacia and they got to the point where I was forced to stop. During that time, I focused on physical therapy exercises and realized that there were some gaping holes in my strength and that yoga was exacerbating my knee issues.

So, I recently switched it up and am doing Mindful Strength. The platform contains workouts from a variety of strength training disciplines and the majority have a calm/controlled vibe (hence the name mindful strength). I find that to work well for my body and nervous system. The workouts are taking my strength to the next level and I am happy with it so far.

Walking

In addition to daily strength or restorative movement practices, I do a daily walk for roughly 30-45 minutes. I think it keeps my muscles feeling better (less gassed) through the day. I want to continue to expand on this and incorporate longer walks on varied terrain.

Weaning off of Mestinon

My neurologist said that she does not see Mestinon being a “forever medication” for me. She recommended that I try to wean off of it when I am in a steady place. Late in May, I went from 30 mg twice per day to 30 mg once per day. A week or two later (early June), I discontinued Mestinon. So far, so good. I don’t feel any worse.

I was nervous to wean off of Mestinon because it was very helpful to me when I began taking it. You may ask then, “Why would you go off of it?”. Over the last year I have gradually walked down the amount of Mestinon I took (I was taking 60mg 3x per day at the highest dosage) because it was causing muscle pain. As I decreased the dosage, I never felt any worse. I stopped at 30mg twice per day because I was no longer getting muscle pain at that dosage. However, I was curious if it was still providing a benefit for me. As I have improved, I have found that I am able to discontinue certain interventions without consequence despite them being useful at the beginning of their use. So, that coupled with my neurologist independently suggesting I try to go sans Mestinon prompted me to give it a whirl. If I find that I need to go back on it down the line, I will have no qualms with that.

What about the stuff in my list from 2020?

• Backing off the exercise– I did this when I finished the Modified Levine Protocol and it was helpful to me to find that right balance where I’m reaping benefits but not burning myself out.
• Acupuncture– I did not try this and I’m not interested anymore. My main interest was in its ability to stimulate the vagus nerve. I tried transcutaneous vagus nerve stimulation at the end of 2020 and did not receive any benefit, so I am less motivated to try this out.
• Chiropractic care– I did not revisit this. I wouldn’t rule this out in the future, but it’s not a high priority right now.
• Functional medicine– I did not revisit this. I’m still cautious about this after my bad experiences a few years ago.
• Para Sym Plus– I did not try this. I would consider trying it in the future, but it’s not at the top of my list.
• Brain rewiring programs– I tried the Gupta Program and it did not help me.

What is on your list of things that you are working on for your health this year?

Note- The Dysautonomia International Conference is coming up in Mid-July! I am ready to get my nerd on and I will share my notes like I did last year. I will most likely stick to the more specific/narrow sessions (vs. the overview sessions). If there are specific sessions you would like me to report back on, drop me a line and I will make sure to cover them.

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.

Per a request by a fellow POTSie, I am sharing my POTS and ME/CFS progress. Before sharing, I want to explain a few things first:

1. These changes happened very gradually and subtly over the course of the last two years.
2. This improvement has happened with the culmination of dozens of small things/treatments and time.
3. I want to acknowledge that this is not indicative of everyone’s experience, so take this for what it is.

I developed POTS and ME in the spring/summer of 2017 and was diagnosed in August of 2018. This compares when I was diagnosed in 2018 to now (November 2020). To read about my path to diagnosis and journey with POTS and ME/CFS up until October of 2019, you can check out My POTS and ME Story.

Tilt testing

• 2018- My BP went hypertensive at the 1 minute mark and otherwise stayed normal. My heart rate jumped from 78 to 122 (increase of 44 bpm) and stayed in the POTS criteria range the whole time I was upright.

• 2020- Poor man’s tilt (so, this is not a scientific comparison). It’s important to note that I am currently taking Mestinon because it lowers the heart rate a bit. My BP drops about 20 points when I stand, but I don’t put a ton of stock in that because I’m just using an at-home machine. My pulse at laying down is 57 bpm. 30 seconds after standing it jumps to 107 bpm (a jump of 50 bpm). By the 1 minute mark, my heart rate is already back down to 75 and stays between there and the mid 80’s the whole ten minutes.

According to my neurologist, I no longer meet POTS criteria because the heart rate increase must be sustained for a period of time. That doesn’t mean I am cured and no longer have POTS, but it is an encouraging sign of my improvement. Now I understand how my first tilt table was negative even though I felt horrible. The underlying mechanism of the disease is still present, but the outward signs can demonstrate themselves on this subclinical level. This tracks with recent research that shows decreased cerebral blood flow in patients with ME/CFS even if they do not meet the traditional POTS criteria.

Out of breath

• 2018- Very often.
• 2020- Occasionally.

“Gassed” feeling in muscles

• 2018- Severe, debilitating, and frequent. This is the sensation of the muscles having no oxygen and “burning”. The “burning” is not painful, it is a fatigue-inducing sensation. It is like having the feeling in the muscles like you just completed a 400m race… perpetually.
• 2020- This fluctuates. Most of the time it is mild, but sometimes it is more intense.

Low grade fevers with fever symptoms

• 2018- Frequent.
• 2020- Fairly rare.

Sore throat

• 2018- Occasional.
• 2020- Rare.

Bloating

• 2018- Frequent and very significant.
• 2020- Sometimes it isn’t too bad, but for the most part it is still pretty frequent and significant.

Brain fog

• 2018- Major and debilitating. This was very upsetting and embarrassing in the beginning.
• 2020- I have a very minor brain mist as my husband lovingly says. Actually, it is rare that I notice this anymore. I feel very confident in my cognitive abilities.

Driving ability

• 2018- Heck to the no.
• 2020- I can drive up to 30-45 minutes at a time on easy routes. Also, I drive like a grandma. I think this is more of a confidence issue now and I need more practice.

Pre-Syncope

• 2018- Frequent, and I would sometimes drop to the floor, but not fully faint. I like to call this maneuver the POTS, drop, and roll.
• 2020- This fluctuates. Sometimes, I will go a period of time without noticing it at all. Other times, I will notice it only when I crouch and then stand up. Occasionally, I will have a day/several days in a row where it’s like “WTH is going on!”. The good news is that my body regulates quickly and the sensation passes after a short period of time.

Fatigue

• 2018- Severe, debilitating, and constant. I was functioning around 30% of normal. I could do a little beyond taking care of my basic needs.
• 2020- This is still my most limiting factor, but this has improved significantly. I function around 70% of normal now and feel better. When I speak in percentages like that, 100% would be able to function like my peers, not necessarily feeling perfectly amazing. I do not consistently feel 70%. It will dip sometimes. But, for the most part, I can stay functioning at that 70% without “paying for it” despite a dip in how I feel.

Energy crashes/Post-exertional malaise

• 2018- Frequent and they would take several days to bounce back from.
• 2020- Occasional and they take less than a day to bounce back from.

Cycles

• 2018- Menorrhagia, oligomenorrhea.
• 2020- I alternated between what is listed above and normal early in the year, but the last few cycles have been normal.

Noise/commotion sensitivity

• 2018- Sensitive to always.
• 2020- This only bothers me if I am in a crash and it is still less bothersome at that.

Muscle weakness

• 2018- Useless noodle body. My hip flexors were especially weak- this happened at the onset of the illness. I became so weak in the year before I was diagnosed that my husband would have to carry me up the stairs.
• 2020- I am much stronger and feel like an athlete again. My hip flexors still struggle despite me working on this consistently, though.

Vestibular ocular reflex issues

• 2018- My vision was “off” in a way that is hard to explain. I used to explain it like a drunk feeling, but not exactly like that. Another way to explain is like in That 70’s Show when Eric would talk to his parents after he came up from the basement and the walls would swirl behind them, but to a much lesser degree.

• 2020- I do not notice this at all anymore. Three cheers for physical therapy!

Heat and cold intolerance

• 2018- Basically like a cold-blooded lizard.
• 2020- I kicked butt with the heat this summer. I am not cold intolerant, but I still despise it. My google searches for “warm places to live” have gone up exponentially this month.

Acute illness and sinus infections

• 2018- Every time I would get sick (which was constantly), it would turn into a sinus infection.
• 2020- I haven’t gotten a sinus infection in about 10 months. I also have only gotten sick once in that time period. I believe COVID-19 measures are the largest factor in this.

Blood pooling

• 2018- I would occasionally notice where my feet would have the blood pooling in them. Or, I would lay with my legs up and my feet and lower legs would go white.
• 2020- I can’t remember the last time I noticed this.

Cold hands and feet

• 2018- Ice, ice, baby.
• 2020- Vanilla ice, ice baby. Too cold, too cold. They are my secret weapon when my husband is looking a little too comfortable.

Exercise tolerance

• 2018- I could tolerate 3 minutes of slow, easy movement.
• 2020- I exercise for 30-60 minutes every day doing: yoga, walking, dance cardio, and HIIT workouts.

Dry eyes

• 2018- No problems.
• 2019- Dry eye syndrome and blepharitis.
• 2020- Prone to the issues above, but it’s under control/treated.

Headache

• 2018- I used to get a sensation of pressure around the base of my head. It was a different than a headache, but I don’t know what to call it.
• 2020- I do not notice this anymore.

Sleep

• 2018- Rare insomnia.
• 2020- No sleep problems.

As you can see, some symptoms are resolved or significantly improved. I still struggle daily and life is not normal. I am fighting for more normalcy and to be able to function like my peers. Although I am not there yet, I am very encouraged by how far I have come and I have a lot of hope for the future.

How has your POTS or ME/CFS progressed over the years?

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.

First, I would like to thank Dysautonomia International for the excellent conference. I learned a lot and I hope these notes helpful to you all as well. Let me know if you have any questions.

The POTS/OI Workup- Dr. Brent Goodman

• It is important to get a full autonomic workup to distinguish if there is any autonomic neuropathy. This is what they do at the Mayo clinic with the sweat test.
• It is important to rule out systemic conditions that look like POTS such as: Sjogren’s Syndrome, Antiphospholipid Antibody Syndrome, Lupus (rare), and toxicity from things like chemotherapy (rare).
• Once POTS criteria is established, it is important to rule out mimickers such as: severe anemia, adrenal insufficiency, mastocytosis, thyroid disease, paraganglioma and pheochromocytoma.
• Sjogren’s Syndrome and Antiphospholipid Antibody Syndrome can be secondary causes of POTS.
• At least half of patients with Sjogren’s have autonomic symptoms. Sjogren’s is one of the most common autoimmune diseases that Dysautonomia patients have. Other symptoms include dry mouth, dry eyes, and itchy skin/hives. Sjogren’s is tested for using SSA and a minor salivary gland biopsy.
• Dr. Goodman recommends the following laboratory studies: CBC, B12, folate, Vitamin D, celiac testing, ANA, SSA, complement total, C3, C4, IgA, IgM, IgG, tryptase, thyroid function, cortisol, metanephrines, urine 11 beta prostaglandin F2, n-methylhistamine, leukotriene E4.
• He also would consider: lupus anticoagulant, beta 2 glycoprotein, antiphospholipid antibodies, paraneoplastic autoimmune panel, EKG, echo, motility testing if symptoms warrant, supine vs. standing catecholamines, salivary gland biopsies (if suspect Sjogren’s), and skin biopsy if suspect small fiber neuropathy.
• Dr. Goodman recommends the following tests to be repeated annually for Dysautonomia patients: CBC, thyroid function, B12, vitamin D, ANA, SSA, and possibly C4.
• POTS is a “heterogenous disorder with multiple risk factors that result in a final common pathway of recognizable symptoms and signs”.
• POTS subtypes (what we identify so far): neuropathic POTS (autonomic nerves affected which will become apparent during the sweat test), hyperadrenergic POTS (impairment of breaks on sympathetic nervous system activity which is sometimes demonstrated by an increase in blood pressure upon upright position in tilt test).
• Sometimes a patient can begin looking like a neuropathic POTS patient, but after a year present more as a hyperadrenergic POTS patient. They do not know why this is.
• 30% of POTS patients have MCAS which may be more common in hyperadrenergic POTS. Clinical clues of this include: hives, itchy skin, flushing, diarrhea, bloating, bladder symptoms (feels like UTI, but doesn’t have one), recurrent anaphylaxis, bone pain, and hair loss.
• Dr. Goodman says treating the MCAS is important to treating the POTS.
• Some patients present with CSF leaks. EDS is a risk factor of this. The headache involved is postural.

Autoimmunity in POTS- Dr. Artur Federowksi

• POTS symptoms are similar to autoimmune symptoms.
• Several studies found autoantibodies associated with POTS.
• Autoimmunity is very common among POTS patients.
• G protein coupled receptors are believed to be targeted by POTS patient’s autoantibodies. Some studies show elevated autoantibodies and some show similar levels between POTS patients and controls. So, the research is unclear.
• Most likely, it is not as simple as there being a high presence of these autoantibodies. Researchers like Dr. Federowski believe there is a nuanced way these autoantibodies act in POTS patients that is distinct from healthy controls, but this hasn’t been proven yet.
• If POTS is proven to be an autoimmune disease, it would be treated as many others are today: IVIg, drugs like rituximab, or plasmaphoresis/immunoadsorption. It is possible that there could one day be a peptide treatment that targets these autoantibodies.
• Dr. Federowski believes hyperadrenergic POTS is likely an overstimulation of adrenergic receptors and is probably affected by an autoimmune attack on adrenergic receptors.
• In response to someone’s question about “why do I have venous pooling but cold feet”, Dr. Federowski explained that there is a dysregulation of normal reflexes, so there is vasoconstriction on the arterial side and vasodilation on the venous side. It’s random, but I have wondered why this seemingly contradictory thing occurred as well.

Non-Pharmacological Treatment of POTS- Dr. Tae Chung

• The pump failure in venous return leads to the sympathetic overcompensation in POTS.
• To target the pump failure, Dr. Chung recommends aggressive volume expansion (oral hydration of 4 liters of water and 4-5 g sodium daily and physical exercise).
• To target the sympathetic overcompensation, Dr. Chung recommends things like meditation and mindfulness.
• Dr. Chung says that beginning an exercise program is usually more successful if the patient can begin with the fluid expansion methods (water and salt) first.
• Cardio exercise is key.
• Dr. Chung described the anxiety seen in POTS is more of a physical anxiety vs. emotional anxiety.

Pharmacological Treatment of POTS- Dr. Satish Raj

• Medications to increase blood volume: Florinef, octreotide (not used very often, is injected and refrigerated), DDAVP, and saline.
• Florinef is the most commonly used drug for this effect.
• Saline helps a lot acutely, but there are concerns with its use long-term. The concerns aren’t about the saline itself, but about how you get it in. The risks include infections and clots.
• DDAVP promotes free water retention in the kidney (more of a direct mechanism than Florinef, for example). The risk is that when given to patients that are water loading (like POTS patients), they can become hyponatremic (low sodium). So, patients that use this medication must be monitored.
• Studies on POTS patients using DDAVP plus drinking significant water showed a robust decrease in heart rate for a few hours. Dr. Raj doesn’t prescribe this medication a lot, but when he does he uses it as a “special event drug”.
• Dr. Raj just briefly mentioned Clonidine and Methyldopa. They work at the brain/brainstem level to lower sympathetic tone, but can be difficult to handle.
• Studies show that less is more with dosage of propranolol. You have to balance lowering the heart rate without lowering the stroke volume too much. It’s about blunting the heart rate, not fixing it.
• Mestinon decreases heart rate in studies, but propranolol does it better. So, he usually tries propranolol first.
• Ivabradine can be a good option for POTS patients. 38/49 in a study experienced improvement. More studies will be coming soon including a trial of ivabradine vs. placebo vs. propranolol. That will be an interesting comparison.
• There is not a lot of data on IVIg yet. In a 2018 study, IVIg demonstrated a decrease in autonomic symptoms and improved functionality for patients. Dr. Vernino is working on more studies along with other researchers.
• Dr. Raj cautions against the use of norepinephrine transport blockers like: Cymbalta, Effexor, Concerta, Adderall, Strattera, and Pristiq. They increase sympathetic tone and can be bad for hyperadrenergic POTS patients. In a study, atomoxetine (Strattera) increased heart rate and worsened symptoms.
• SSRI’s like Zoloft and Lexapro are usually safe for POTS patients. Studies demonstrated that there were no acute heart rate effects with these drugs.

Research Updates- Long-Term Outcomes in POTS Patients and Vagus Nerve Stimulation- Dr. Raffaelo Furlan and Dr. Franca Dipaola

• This study assessed the symptom burden over time in POTS patients.
• There was “progressive global clinical improvement” in POTS patients at the two year mark.
• It is important to note that the symptoms burden was still significant although it was improved.
• This study was small. Long-term studies typically struggle to retain their subjects.
• The vagus nerve stimulation study was done using a transcutaneous device (non-invasive- attached to the external ear). POTS is associated with low vagal tone and a hyperadrenergic state, so the hypothesis is that vagus nerve stimulation (VNS) may cause improvement. VNS works by reducing sympathetic activity and causes a shift in cardiac autonomic function toward parasympathetic predominance.
• The benefits to a transcutaneous device is that it is noninvasive, it bears minimal side effects (local irritation), it is easy to use, and it is inexpensive.
• The study observed 11 hyperadrenergic POTS patients. They received 4 hours of VNS for 2 weeks. The effect on the heart rate during tilt had minimal change. However, measures of heart rate variability (which is a good way to observe vagal tone) and plasma norepinephrine improved significantly. Patients also reported an improvement in the sensation of rapid heartbeat. The conclusion of the study is that VNS may be considered an adjunct therapy in POTS. Like most preliminary studies, this has a small sample size. Larger studies will be needed for this to gain more traction. And, to do larger studies, this kind of research needs more money.

• They stimulate the vagus nerve on the right side because the right vagus nerve branch acts the most on the sinus node to decrease heart rate.
• Dr. Furlan feels EDS patients respond especially well to VNS.
• GI motility improves with increase vagal activity.
• Dr. Furlan said you can buy or rent these devices in Europe. It seems it is more tricky in the US. There are a few FDA approved devices for things like IBS or migraines. However, we can’t access these yet for Dysautonomia.

Research Update- Zack Orban

• He is observing human leukocyte antigen (HLA) genes in POTS patients. The HLA system distinguishes self from non-self and this system is linked with autoimmunity.
• HLA associations alone do not prove immune dysfunction, but this may contribute to the overall understanding of POTS.
• There seem to be a few risk alleles for POTS and some of these overlap with conditions like Sjogren’s.

Advocacy Update- Lauren Stiles JD

• Wow, Lauren and Dysautonomia International work their butts off. They bring data to congress to convince them to increase funding for research in the field of Dysautonomia.
• They also petition for the approval or retention of important Dysautonomia medications.
• The group also works on getting Dysautonomia properly recognized and described by the NIH and other organizations (which also helps with funding).
• DI got a specific ICD code for POTS that will soon be implemented. This will improve the ability to do epidemiological research.
• I seriously cannot express how much good work DI does for the Dysautonomia community.

Q&A- Future of Research with Dr. Steven Vernino, Dr. Laura Pace, and Dr. Mitch Miglis

• Some of the top future big picture things this group would like to see worked on is: phenotyping POTS, discovering better biomarkers, understanding autoimmunity, reframing autonomic nervous system disorder genetics to understand the underlying pathophysiology, educating future and current doctors, and physicians working in consortium on Dysautonomia.
• They would like to see whole genome sequencing in multiple affected family members with Dysautonomia to help identify responsible genes.
• There are educational deficits in medical schools on autonomic disorders. Most do not learn about it at all. Some have one lecture on the topic. Clearly, that is not enough as it takes an average of 5 years for a patient to be diagnosed with Dysautonomia.

Did anyone else attend the conference? What did you learn?

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.

Wow again! This conference has been very educational and exciting. I believe Dysautonomia International is going to keep the registration page open for a while, so you can still sign up if you want to receive the recordings of all the sessions.

Autonomic Dysfunction in ME/CFS- Dr. Peter Rowe

I was really excited about this talk since I also discuss ME/CFS in this blog. Dr. Peter Rowe is another fierce advocate for our community and this talk was excellent.

• It seems that most post-viral cases of ME/CFS occur after a severe infection. The opposite seems to be true with COVID-19 so far, though.
• There are two peaks of incidence in age groups concerning ME/CFS- 10-19 and 30-39.
• Dr. Rowe spoke passionately about the fact that cognitive behavioral therapy (CBT) and graded exercise therapy (GET) are rightfully waning as the treatment for ME/CFS. This is due to the actual effects being modest, there are no studies on how these affect severe ME/CFS cases, there was research misconduct in the primary source of this information (PACE trial), and the fact that rigid advancement of graded exercise can cause harm to some ME/CFS patients.
• The main point to this lecture is that there is a very high prevalence of orthostatic intolerance in patients with ME/CFS.
• Therefore, treating orthostatic intolerance is important to managing ME/CFS.
• Dr. Rowe discussed a study on 429 adults with ME/CFS. 28% had POTS. 14% had orthostatic hypotension. 58% had normal heart rate and blood pressure. These same individuals were tested for the reduction of cerebral blood flow (blood flow to the brain) upon standing. In the healthy controls, cerebral blood flow dropped 7%. Cerebral blood flow dropped 26% in the ME/CFS patients. This means ME/CFS patients experience nearly 4 times the drop in cerebral blood flow compared to healthy individuals. One of the most important notes of this study demonstrates that the group of ME/CFS patients that had a “normal blood pressure and heart rate”, even they experienced a 24% reduction in cerebral blood flow upon standing. That means, there is a group of ME/CFS patients that are experiencing orthostatic intolerance, but are not meeting the criteria of a traditional diagnosis and therefore missing out on treatment options.
• Cerebral blood flow decline was the same between conditioned and deconditioned ME/CFS patients, which is further evidence that conditions like ME/CFS and Dysautonomia are not caused by deconditioning.
• The cerebral blood flow testing is only done on a research level at this time.
• Dr. Rowe explains how telling ME/CFS patients to just start exercising without any interventions would be like telling an asthmatic to go run a lap before giving them an inhaler. Patients need to have their medical problems addressed (like orthostatic intolerance), and then perhaps they may be able to tolerate some gradual exercise.
• An example would be a 22 year old patient he had. She literally could not exercise. After proper treatment (Ivabradine worked well for her), she was able to begin exercising starting at just 3 minutes and eventually working up to the 10 mile hikes she does today. Everyone is different, but I relate to this story. Once I finally received proper treatment, it worked as a bridge for me to exercise and then reap the benefits of that exercise.
• Dr. Rowe cracked me up with this low-key quip- to paraphrase, he said “I’d like to see that physicians that advocate for cognitive behavioral therapy as a cure to try and exercise with the level of decreased cerebral blood flow these patients have”. Say it louder for the people in the back.

• Dr. Rowe briefly touched on ME/CFS and orthostatic intolerance in COVID-19. He has a 30 year old patient who is a high-level scientist. By day 10 of COVID she couldn’t make sense of her bank statement or follow the plot of a tv show. This is validating to those of us who experienced a rapid onset of brain fog.
• He said that anybody with severe fatigue post-COVID needs to be assessed for orthostatic intolerance.
• He has a post-COVID patient that was a cross-country runner. That male patient now experiences 4-5 days of post-exertional malaise after playing bags (a.k.a cornhole).
• Dr. Rowe feels ivabradine is safe for long-term use based on the information they currently have.
• He feels seeing a manual physical therapist to address muscular and tissue imbalances is an important part of recovery.
• 30% ME/CFS patients have a milk protein intolerance. Dr. Rowe mentioned that it may be wise to drop dairy if you have ME/CFS because it could then interfere with the efficacy of medications.

Post-COVID-19 Autonomic Dysfunction- Dr. Mitchell Miglis

I was struck in this lecture by how little we know about COVID-19. Dr. Miglis even said himself that he had trepidation to give this lecture as we need much more data to discuss this topic. Kudos to Dr. Miglis and others that are studying this very important topic and treating COVID long haulers.

• Dr. Miglis discussed a few case studies where patients developed Dysautonomia post-COVID-19.
• He discussed the studies on other related post-viral conditions such as post-SARS and post-MERS syndromes. Very little is known about those, either. Basically, we know that some people develop ME/CFS-like illnesses after contracting these diseases. There was a small (only 14 patients) study done on post-SARS patients that found that 4 out of the 14 had abnormalities in a standing test.
• COVID-19 is less deadly than SARS and MERS with a mortality rate around 2-3% (although this is still somewhat unclear).
• Around 10% of COVID-19 patients experience chronic symptoms. I thought this figure was quite high. I can’t remember if this figure came from a study or a survey. When I get the slides in about a month, I will look into this stat.
• In a study looking at 841 hospitalized COVID-19 patients about 57% had neurological symptoms and 2.5% had Dysautonomia (although Dr. Miglis mentioned that this was not specifically defined).
• The mechanism in which COVID-19 affects the nervous system in unclear.
• Damage from COVID-19 could be due to a “cytokine storm” (an inflammatory response).
• In a study looking at 143 Italian COVID-19 survivors, after 60 days, 87% still had symptoms. After 4 months 50% were still having symptoms, 30% were having breathing difficulty and lung scarring, and 30% had clotting abnormalities.
• In a survey of 300 COVID-19 long-haulers: 55 report developing an autoimmune disease, 124 report developing Dysautonomia, 133 report having difficulty doing basic activities, and 61 are concerned that they won’t be able to return to work.
• As I mentioned in the previous lecture notes, it seems that patients that are becoming long-haulers typically had mild to moderate acute onset symptoms of COVID-19.
• Many COVID-19 long haulers indicate that their symptoms wax and wane (they call it the Corona-coaster).
• Potential mechanisms of these post-COVID-19 syndromes could include: persistent cardiac or pulmonary injury (50% of COVID survivors in Bergamo have lung dysfunction at 4 months out), direct neuroinvasion of brain or brainstem by COVID (SARS can infect the brain stem of rats), damage of peripheral nerves (ex. neuropathic POTS), indirect neuronal injury and glial activation (persistent inflammatory response), or mast cells may be involved in the cytokine storm seen in ARDS in severe COVID-19.
• In considering treatment, Dr. Miglis states that it is important to rule out cardiopulmonary and thromboembolic disease. He said they are “not there yet” to recommend IVIg for these post-COVID-19 patients unless they also have an underlying autoimmune disease. He wonders if neuromodulators of vagal nerve stimulation (see Dr. Kevin Tracey’s lecture from Day 2) could be useful.
• In Dr. Miglis’ patients with pre-existing POTS that got COVID-19, most experienced a fairly severe exacerbation of POTS along with some new pulmonary symptoms. The Dysautonomia International advisory board concurs in the sense that most Dysautonomia patients experience exacerbation with any illness. However, it does not seem that Dysautonomia patients are at higher risk of severe complication of COVID-19.

Expert Q&A- Comorbidities- Dr. Clair Francomano, Dr. Brent Goodman, and Lauren Stiles JD

I’m going to be totally honest here, my brain started to go a wee bit downhill at this point. So, bear with me as my notes diminished.

• Common comorbidities include: MCAS, Ehlers Danlos, sleep disorders, GI dysfunction, brain fog (Dr. Goodman considers this a comorbidity), Sjogren’s, and other autoimmune diseases. As Lauren Stiles put it, “Autoimmune diseases tend to invite more friends to the party.”
• Dr. Goodman said some symptoms that would raise red flags to him to investigate autoimmune diseases in Dysautonomia patients would include: the abrupt onset of Dysautonomia, rapid weight loss at the onset of the Dysautonomia, a strong family history of autoimmunity, and mast cell symptoms.
• Lauren Stiles reiterated what Dr. Tracey said in the keynote address that it is possible that POTS drives autoimmunity due to the hyperadrenergic state.
• Dr. Francomano is an expert in the realm of Ehlers Danlos and she said that typically those patients feel less hopeful because their cause of Dysautonomia is genetic. However, she finds that many can also experience significant improvement with proper treatment.
• They referenced a study where patients post-concussion complaining of dizziness actually had normal vestibular testing results, but their dizziness was due to POTS and OH. The point is that orthostatic intolerance is a common post-concussive finding.

Stories of Hope and Recovery- Anoushe Husain, Meredith Brooks, and Jacqueline City

What struck me most and encouraged me about these stories was that none of these women were cured despite being the “stories of hope and recovery”. That may sound like a weird thing to be encouraged about, but bear with me. For most people, Dysautonomia is chronic. So, these stories were realistic. They found a path that works for them in living with Dysautonomia.

The three women described a nonlinear path of healing and all said that their symptoms are still a daily struggle. Yet, they have found a place where they are thriving despite their challenges. They have found a medical and adaptive regimen that works best for them. As Jacqueline City called it, “A new way to live.”

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.

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.