I have previously written about dry eyes as it is common among people with Dysautonomia.

This summer, I hit a rough patch of dry eyes. My contacts were fogging up after an hour and were intolerable to wear, the dry sensation was more frequent, and I was experiencing a mild burning. Nothing I was doing would bring relief, so I decided to see a dry eye specialist.

The dry eye specialist did a battery of tests and determined that my meibomian glands were not secreting much oil due to multiple factors including inflammation and telangiectasias around my eyes. As a result, my tear break-up time was abysmal. Due to the dryness, I also had irritation along my sclera due to friction. Luckily, my cornea was still healthy.

After the treatments and interventions that I discuss below, my eyes are in much better shape. My contacts are no longer foggy and I can tolerate them, the mild burning occurs less frequently and less intensely, and my eyes feel less dry overall. My eyes are also better objectively. The doctor said my tear film looks stable, there is significantly less irritation on the sclera, and my meibomian glands look healthy and are expressing liquid oil rather than toothpaste-consistency oil.

This winter, I decided that I would like to see more improvement, so I tried a few other things and noted them as updates under some of the headings.

IPL

Intense pulsed light (IPL) is an FDA approved treatment for dry eye. It works by decreasing inflammation, removing telangiectasias which can impair meibomian gland function, and heating up the oils in the glands so that they flow easier.

The doctor puts eye shields in to protect the eyes, applies gel to the face, and does several passes around the eye area with the IPL device. My doctor also hits the cheeks, chin, and forehead with a different attachment. This is for extra measure to treat other potentially contributing telangiectasias, kill the demodex mites that live on the forehead, and to even the esthetic benefit out.

The procedure is mildly painful. The absolutely necessary application areas didn’t hurt at all to me, but the chin and cheeks smart a bit. It’s more startling than anything because it gives off a bright flash of light that you still sense despite using eye shields followed by a snapping sensation.

I did 4 sessions of IPL and began to see a difference after the 3rd session. This was a huge game changer for me and I am happy with the results.

Expressing and debridement

Before one of my IPL sessions, my doctor did a quick debridement of the lower lid, which was basically a quick scrape with a metal tool. It felt weird, but it wasn’t painful at all. After each IPL session, she would put a heat mask on and then express my glands using a special tool. I think this amplified my results.

Eyesuvis

Eyesuvis is an eye drop for the treatment of dry eye flares. It is a steroid that can be used in short-term bouts. My doctor says that she likes it because it has less risk of complication than other steroid drops.

I did not notice any improvement using this. However, I keep it on hand if I feel like it’s worth a shot. For example, the eye shields from IPL are somewhat irritating, so I use Eyesuvis for a day or two after IPL sessions.

Miebo

This is a new eye drop that just came available in the states this fall. It is made of perfluorohexyoctane.

It basically creates a fake oil layer in your eye so that your tears do not evaporate as quickly. I go back and forth on my opinion of it. I think it gives longer relief than most drops I have used. It can be used up to four times per day. On glasses days, I will use it a couple times per day. On contact days, I only use it once or not at all. You cannot use Miebo with contacts in and have to wait 30 minutes after instilling the drop to put in contacts. One tip I have noticed with this is that it works much better if you close your eyes and plug your tear ducts with your fingers for 1-2 minutes after instilling them.

Update- I have been using either Allegro drops or gel drops like Celluvisc instead of Miebo lately. I don’t know why, it’s just what I’m reaching for. I still have Miebo around and maybe I’ll experiment with it more again in the future. Sometimes Miebo feels dry to instill. I’ve heard it suggested to put in an artificial tear, waiting 5 minutes, and then put in Miebo. I can see the appeal of that, giving Miebo something to retain.

Allergy Eye Drops

My doctor thought that allergies may be contributing to inflammation in my eyes as well, so she recommended allergy eye drops. You can pick these up over-the-counter. I used Zaditor and it did not make any difference. I do not use these any more because it’s not worth the preservatives if it doesn’t work. Unfortunately, I cannot find any allergy eye drops without benzalkonium chloride, and that preservative is frowned upon for dry eyes.

Update- I also tried Lastacaft with no change. My doctor also recommended this drop that is newer to the states called Allegro. She said her patients with both dry eye and ocular allergies like it. It can also be used with contacts, which is nice. Allegro is not an antihistamine, but addresses ocular allergies with a different mechanism. I haven’t used it enough yet to fully evaluate it at this point.

Changing contacts

I have been experimenting with different contacts and that can also make a difference. I was formerly using Acuvue Oasys for Astigmatism (2 week) lenses. These don’t always last the full two weeks comfort-wise. I recently added Acuvue Oasys Max 1-day lenses in my arsenal and like to mix it up. Even when my eyes were awful (before I had completed IPL), I was able to wear these lenses all day long. I’m currently deciding whether to switch to them full-time now. They are significantly pricier, but they are magnificent.

Blinking exercises

Blinking exercises help strengthen the muscles in the eyelids to allow for a more complete blink. Incomplete blinking contributes to dry eyes. I incorporate these throughout the day, especially after doing warm compresses to express oil.

Gel drops at night

At my eyes’ worst, I would wake up and barely be able to open my eyes because they were so dry. I tried a couple types of nighttime eye drops, and the Genteal gel is my current favorite. It works all through the night, feels glorious, and is easy to use.

Punctal plugs

Punctal plugs are used to occlude one of the tear draining orifices to help tears to stay on the eye longer. My doctor recommended temporary, dissolvable plugs for me. I haven’t gotten these yet, but have it in my back pocket as an option.

Update- I decided to try plugs earlier this winter. It did not work for me. My eyes became way more dry and were itchy near my tear duct. My doctor isn’t totally sure why that happened because it didn’t appear like I had enough uncontrolled inflammation or allergies to produce that result. Who knows. The doctor flushed them out of my eyes and they improved gradually after that to go back to baseline.

Lipiflow

This procedure involves heat and pressure being applied to the meibomian glands to allow them to secrete more effectively. There are other similar procedures that accomplish the same thing such as radiofrequency, ilux, or mibo thermoflo.

Car Humidifier

My eyes always get super dry when I am in the car, so I put a humidifier in it. I just set this up the other day, so I’m not sure how much it helps yet.

Update- This didn’t do anything for me.

Hydroeye

Hydroeye is a supplement specifically for dry eye. It supports the three layers of the tear film to allow for more stable tears, and less dry eyes. I have taken high quality fish oil in the past and did not notice a difference. However, Hydroeye is a little different, so I figured it was worth a try. This is taken from Hydroeye’s website to describe why it is different than fish or flax oil:

“HydroEye provides the same omega-3s as flaxseed and fish oil. HydroEye now features EPA and DHA from highest-quality, USP verified fish oil. However, only HydroEye provides GLA (gamma linolenic acid). GLA effectively promotes the body’s production of anti-inflammatory compounds. Both GLA and the omega-3 from fish oils have anti-inflammatory actions, but only GLA has been clinically shown to decrease dry eye symptoms. Additionally, neither fish nor flaxseed oils contain other important nutrients that are included in HydroEye: vitamin B6 and magnesium to promote fatty acid metabolism, vitamin A to support the production of mucin in the tear film, and the antioxidant vitamin C to help fight the free radicals associated with inflammation.”

I just started taking this, so I will update in the future with my experience.

Update- After a full 60 days, I didn’t notice any improvement using Hydroeye.

Tyrvaya

Tyrvaya is a nasal spray that stimulates the trigeminal nerve causing an increase in tear production. After punctal plugs didn’t work out this winter, my doctor recommended Tyrvaya. I have only been on it for two weeks, so I can’t full evaluate it yet, but I think it’s already kicking in. I’ll update when I can full speak to how it worked for me. It’s interesting to use, you tilt the bottle towards the outside of your nostril rather than straight up like other nasal sprays. Shortly after instilling, it triggers a sneeze attack. It was more intense when I first began using it, but now it’s usually one or two sneezes with a bit of annoying nose itchy/throat irritated/eyes watery for a minute or two. I control the response by pressing my tongue on the roof of my mouth and breathing slowly. It’s not bad, in my opinion.

What has helped your dry eyes?

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.

A fairly common treatment used for POTS and ME/CFS is SSRIs (selective serotonin reuptake inhibitor). It isn’t well understood how they can help in these illnesses, but they have anecdotally helped some patients.

What is an SSRI?

SSRIs are antidepressants. They are commonly used for depression and anxiety disorders. Examples of SSRI’s include Prozac, Lexapro, Celexa, Paxil, and Zoloft. They work by blocking the reabsorption of serotonin, which makes it more readily available for use. Serotonin is a neurotransmitter indicated in the stabilization of mood. So, SSRI’s can improve mood by allowing more serotonin to be used throughout the body. SSRIs are used off-label for POTS and ME/CFS. They can sometimes improve symptoms such as pain and fatigue.

Let’s get this out of the way

First of all, allow me to clarify that POTS and ME/CFS are NOT psychological disorders. POTS is a dysfunction of the autonomic nervous system that is well-documented. ME/CFS is a complex, heterogenous disorder with a wide array of physiological findings depending on the patient.

What the research shows

The only direct study I found on PubMed relating SSRIs to POTS was a big “womp womp”. Sertraline demonstrated a modest vasopressor effect while patients were sitting. However, there was no difference in the hemodynamics of sertraline vs. placebo patients. Also, symptoms were worse in the sertraline group that in the placebo group.

I found a number of sites, without any references, that say that it is believed that SSRIs stimulate the vasoconstriction reflex and therefore may assist with POTS. This study also makes the same claim based on the work of two other studies. However, those studies in reference are clearly discussing SNRIs, which are a different class of antidepressent that stimulate the reuptake of norepinephrine. I also found this study that demonstrates that SSRIs have a vasodilation effect and specifically states that chronic treatment with fluoxetine may cause orthostatic hypotension. So, to sum it up, there doesn’t seem to be a consensus on how SSRIs impact the hemodynamics of POTS patients.

SSRIs may decrease fatigue and muscle tension while also improving sleep. These effects may be particularly beneficial for those with ME/CFS where sleep dysfunction, chronic pain, and chronic fatigue are common issues. This semi-old longer-term study demonstrated that patients on antidepressants recovered quicker and had less fatigue than patients who did not take antidepressants. This review of other studies states that the use of SSRIs for ME/CFS is met with varying success. It also clarifies that antidepressants are palliative, they do not treat the underlying cause of ME/CFS.

Side effects

Side effects of SSRI’s can include:

• Nausea
• Headache
• Vivid dreams
• Appetite changes (can go either way)
• Sexual issues
• Insomnia
• Dizziness
• GI changes
• Agitation

SSRIs interacts with certain drugs, so it is important to discuss potential interactions with your doctor.

Personal Experience

I took Lexapro to help me through a mental health rough patch. With my psychiatrist’s guidance, I built up to an effective dosage, stayed there for three months, and then slowly tapered off. It did the job as far as my mental health was concerned and allowed me to make more progress in therapy. I am in a much better place now. However, regarding POTS and ME/CFS, Lexapro did not produce any noticeable improvement. The good news is that it didn’t worsen any symptoms.

Tapering off Lexapro

My psychiatrist tapered me very slowly, dropping in small increments and staying there for 6-8 weeks before continuing on with the taper. I experienced turbulence due to a rebound effect at some of the taper levels, but it was short-lived. When I dropped to being completely off of it, I experienced the most significant withdrawal of the whole process. I am still recovering from it now nearly a month out. The weirdest part has been the dizziness. Every time I turn my head or change positions, I get a couple seconds of a vertigo sensation. That seems to be improving finally. I have also been in a POTS and ME/CFS flare since discontinuing Lexapro. My instincts tell me that it is not merely from the withdrawal, though. I was pushing my limits in multiple areas and in retrospect can see that it wasn’t wise. I still fumble pacing at times. Or stubbornly want to believe I’m totally healthy and can do it all.

Have you tried an SSRI in the treatment of POTS and ME/CFS? Did it help your symptoms?

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.

COVID-19 vaccinations are a contentious topic. They have gotten wrapped up into the ugly “us vs. them” tribalism that is rampant in U.S. politics and culture. For the purpose of this article, we’re going to leave that aside. My intention is to simply share my personal experience with the original Moderna COVID-19 booster so that others may benefit if they have a similar experience. I’m also curious to know what has worked for other people in similar situations. I have no interest in throwing my hat into the vaccine debate.

I received my initial Moderna series in the spring of 2021 without any long-lasting issues. I had chills, fever etc. after the second dose for a few days and two-week POTS flare. Overall, I happy with that outcome. Due to a positive Covid test and monoclonal antibody treatment in the fall of 2021 and a bout of Covid in February of 2022, I had to keep pushing back my booster. Cases were very low in my area over the summer and the rest of my family got Covid in August, so I waited to get my booster until early September of 2022. I received the original Moderna booster (not the newer one for the omicron variants).

My Experience

Within a few hours of the booster, I began to experience body aches and headaches and other symptoms similar to what you experience when you have a fever. This wasn’t a surprise as I heard that most people react similarly to how they do with their second shot. Unfortunately, the aches were sticking around long after the other symptoms subsided. I kept telling myself, surely just a few more days and I’ll be in the clear. After nearly three weeks I decided that what I was experiencing was not normal and went to a family doctor that I trust to take me seriously.

First Round of Prednisone

My family doctor was a great help. He ran some bloodwork to rule out some things and checked my inflammation markers. Everything was normal and he said that it appears that I had a reaction to the Moderna booster. He prescribed me a taper of prednisone. It came in a blister pack as pictured below. Prednisone suppresses immune system activity, so the thought is that it would calm down the overreaction that my immune system had to the booster shot. Prednisone also calms down inflammation which is likely the cause of the pain.

By the second day of the prednisone taper, I was feeling much better, which confirmed that the overactive immune system response to the booster and inflammation were the causes of the pain. Unfortunately, around the second to last day of the taper, the pain started to come back. I was very disheartened as I was beginning a new job and was worried about my ability to function. Thus far I had been keeping it together, but barely. Especially in the evenings, I was exhausted and very uncomfortable with the head and body aches.

Second Prednisone Taper

I checked back in with my doctor and reported how the first taper went. He suggested that I do another taper and he prescribed it in a bit more aggressive way. You can see the schedule of this taper below.

The numbers correspond to how many 5 mg pills I would take at those times. Shout-out to the pharmacist who wrote this out for me after seeing my eyes glaze over at the instructions.

As with the first prednisone taper, the pain subsided around the second day. And, similar to the first round, the pain came back around the second to last day. I was even more disheartened this time because I was like, “Great, how am I going to keep my job, take care of my kids, and figure out this new medical problem while being in life-sucking pain???”. Maybe disheartened isn’t the right word. Pissed at the situation more accurately sums up my feelings.

I got back in touch with my family doctor to update him and made an appointment with my neurologist Dr. Blitshteyn since she handles cases of post-Gardasil reactions. Unfortunately, the earliest appointment she had available was in January 2023 (I made this appointment back in October, I think). My family doctor told me that if things get worse to see a neurologist sooner.

I am happy to report that a few days after the initial re-flare of pain after I finished the second prednisone course, things have significantly improved.

Where I’m at Now

It is now a few months down the road and mid-December 2022. I still have pain. I would characterize it now as mild, fluctuating, and annoying. It primarily sticks to my neck, head, and down my arms. The pain is fatiguing. It is at its worst in the evenings or when I get worn out.

I’ve also been noticing that I’m getting weird heart palpitations. It reminds me somewhat of the weirdness I felt getting the PVCs after COVID, but it’s a different rhythm. Right now, I’m not concerned. For all I know, it’s just some increased tachycardia. I follow up with the cardiologist I saw post-COVID around March of 2023, so I’ll ask about it then if it is still happening.

My daily lifestyle has not changed much, but I struggle more than I did prior to the booster. I have to be more mindful with pacing than I needed to pre-booster. I also have to say “no” to more things that are in the evening. For example, I had to quit one of my jobs that I did as a hobby because it requires a lot of evenings and occasional late nights. I am keeping up with my day jobs and parenting duties.

Exercising is going pretty well. I had to take a couple-week hiatus recently because I was struggling to make it through work. My body didn’t have enough energy to do both and my muscles were extremely gassed and tight. I am back on my normal exercise routine as of last week. For the last year to year and a half, I have been increasing distance and intensity with running, but I am finding that I have to be careful with it. If I push too much, the pain gets worse. Some of my worst days are after I run, but I’m determined to not give it up completely. I’m still figuring out where that line is.

Update– It is now mid February of 2023. Things continue to get better over time, which is encouraging. I had an appointment with my neurologist. She said that unfortunately, this can happen- COVID can do this to people and so can the vaccine. She said at this point there is no way to predict it. I asked about future COVID vaccines and she said it is my choice. She said I may do fine with future ones or not, there’s no way to know. Since my pain is improving on its own and isn’t too disruptive at this point, she just recommended: 5000 IU vitamin D (unfortunately I cannot do that because it gives me kidney stones), a gluten-free diet, and over-the-counter pain medications. If I was doing worse, she would have different recommendations, but there’s no sense in doing dramatic things at this point.

To Those Who Live with Chronic Pain

I just have to say, to those who live in chronic pain, I see you. I have given birth (okay, I kinda cheated and had epidurals, but still!) and had multiple kidney stones including one that sat there for months, and I would still take those over the aches I experienced post-booster. It’s truly draining and I feel for those of you that deal with this.

Future Covid Protection Plans

I do not want to face Covid unprotected as I developed a temporary heart arrhythmia from it last time. So, after a few months, I will check in with my doctor about my options. I would be open to a different vaccine- possibly Novavax.

What Has Helped You???

If you have reacted to a vaccine or medication, what helped you recover? I am very curious since I am still not back to my pre-booster state.

If I learn anything to share from my appointment with Dr. Blitshteyn, I will include it in this post. Also, if I figure out anything else that seems to move the needle, I will add it here.

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.

I have had mild GI symptoms that have waxed and waned throughout the course of POTS and ME. Here is a rundown of what I have tried and how these interventions have worked. Spoiler alert, none of these were a success, but since everyone responds differently, I thought they were worth sharing.

Gastroenterologist

At the end of last year, I was discussing some GI things with my nutritionist and she suggested that I rule out SIBO as it is very common among POTS patients. After an eternity of Google deep-diving, I finally found a Gastroenterologist that deals with SIBO.

Early in 2021, I saw the Gastroenterologist. As I mentioned in a different post, it was a strange and creepy encounter. I didn’t follow up with this doctor, but I did follow his recommendations.

GI’s Recommendations

The GI told me that classical cases of SIBO come with a fever and severe issues. He thought that since my issues were mild and chronic that it was most likely not SIBO. He also feels that SIBO diagnoses get thrown around rather flippantly. It was interesting to hear his take as I had only heard from the school of thought that thinks it is under-diagnosed. There is clearly not a consensus on SIBO at this time.

The GI told me that I most likely have IBS and food intolerances. His recommendations were to: start a probiotic, take the antibiotic rifaximin for 2 weeks, do a stool test, and keep a food journal. I felt pretty underwhelmed by an IBS diagnosis after listening to Dr. Laura Pace and others at the Dysautonomia International conference refer to it as a lazy, BS diagnosis. However, that’s what I was offered, so I figured I would do what I could with that information.

Rifaximin

Rifaximin is FDA approved for IBS-D. It is also the same medication prescribed for SIBO. Rifaximin is specific to the gut. This did not help at all. It actually gave me a bad POTS flare, too. Antibiotics do me dirty like that from time to time.

Probiotic

I hadn’t been on a probiotic in a while, but I went back on one to follow the GI’s recommendations. My nutritionist told me this may be a good idea as well if I don’t like fermented foods. At that time I had only tried sauerkraut, which took every shred of self control I possess to swallow at my in-laws Thanksgiving.

My nutritionist thinks probiotics can be tricky on whether they are worth it or not. However, she does feel comfortable in recommending either Visbiome or VSL#3, because they have the most robust studies. I tried VSL#3. I didn’t notice any improvement, so I stopped taking it after a few months. VSL#3 is VERY expensive, so it’s not worth keeping around without noticeable improvement.

Elimination diet

I didn’t food journal this year, but based of previous observations and hunches, I tailored an elimination diet that lasted about three weeks. This diet reduced GI symptoms around 30-40%.

This ended up being a failed experiment, though. The diet was too restrictive to be sustainable, and by the time I was done with the elimination part, I was too burned out to do a proper reintroduction. If I were to try this again, I would most likely do it under the supervision of a professional to avoid this burn out.

Nerva Hypnotherapy

After my elimination diet fail, creepy Facebook algorithms read my mind and targeted me with an ad for Nerva Hypnotherapy. I was impressed by the small study demonstrating that gut-directed hypnotherapy is as effective as a low-FODMAP diet for IBS. So, I gave it a whirl.

Nerva uses hypnotherapy sessions, deep breathing, and learning to re-educate the mind and body to function as it should. The sessions were very enjoyable and calming (although they felt repetitive towards the end of the 6 weeks). Sadly, I did not notice any improvement in GI symptoms from using the app. No regrets, though. As I’ve said before, you miss 100% of the shots you don’t take (credit to Wayne Gretzky and Michael Scott).

Sugar elimination

I made it 5 days. That is all.

Fermented food and drink

I read Cort’s article at Health Rising about the impact of a high fermented food diet on the gut microbiome and it inspired me to try fermented food/drink for multiple reasons. First, I have been on three courses of antibiotics this summer alone (UTI’s from a stuck kidney stone), so I thought this would be a good idea. Second, for the impact it could potentially have on the POTS/ME. And finally to see if it could impact GI symptoms by virtue of improving the gut microbiome.

I trialed fermented food/drink for about two months. During the first month, I worked up to drinking 4 ounces of coconut kefir by Fermenting Fairy and two tablespoons of their fermented applesauce each day. I don’t enjoy the taste of coconut kefir, but the applesauce has grown on me. I like both the ginger and cinnamon applesauce.

During the second month, I drank 4 ounces of GTS Kombucha per day (Gingerade is my favorite) and two tablespoons of the Fermenting Fairy applesauce. I switched to kombucha because it’s cheaper. Two bottles of the coconut kefir exploded in my refrigerator (refrigerator’s fault) and that waste pushed me to find something more economical.

A note on one of the GTS kombucha flavors- I have tried several and none are gross. However, I tried one called “Living in Gratitude”, which is their fall edition. My brain goes WTF every time I drink it and I have to know if anyone else has experienced this. Let me know, because it’s cracking me up. It’s like they mixed pickle juice with pumpkin spice and a splash of apple cider. That makes it sound truly repugnant, but it’s not bad.

Here are other options for fermented foods and drinks:

• Kimchi
• Sauerkraut
• Dairy kefir
• Tempeh
• Miso
• Yogurt

After this two month trial of fermented food and drink, I did not notice any changes in my GI or other physical health aspects. My mental health improved during this time, but I don’t know if it was the fermented food and drink as there were other variables involved.

I plan to discontinue the fermented food/drink and see how things go. I see myself using fermented food/drink in periodic phases when it feels right intuitively. In addition to that, I will return to this well when I have to do a course of antibiotics.

Next Steps

Since my GI symptoms do not disrupt my life and are mild, I am most interested in low-key options. Here are things I’m curious about trying in the future:

• Smaller/more frequent meals. This is recommended for people with POTS anyway due to blood distribution during digestion.
• Manual physical therapy/bodywork modalities. These claim to aid in GI issues.

What are your experiences with GI issues in chronic illness? What have you tried and what have been the results?

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.

After the Dysautonomia International Conference in 2020, I had some serious FOMO about Transcutaneous (through the skin- noninvasive) Vagus Nerve Stimulation (tVNS). It was a hot topic and seemed like a viable option. So, I researched the crap out of it, asked my doctor if it was okay, and went for it.

Disclaimer

If you are considering using a tVNS device, please consult your doctor. In most cases, if something is strong enough to work, then it is strong enough to cause harm if used improperly. Also, as I mention in my sidebar (or bottom bar if you’re on a mobile device), I am not a medical professional.

How tVNS relates to POTS and ME

Certain brands of POTS and ME can be characterized by a hyperadrenergic state. This means that the body is perpetually in fight-or-flight, or functioning with primarily sympathetic nervous system activity (this is also called Central Sensitization). Our bodies are not meant to function this way. This can eventually lead to a disruption of autonomic nervous system (Dysautonomias like POTS). Certain types of ME are thought to have similar origins. You can check out my article on Vagus Nerve Stimulation to read more about the link between VNS and POTS and ME as well as natural ways to stimulate the vagus nerve.

Transcutaneous VNS devices stimulate the vagus nerve which increases the parasympathetic nervous system activity (and therefore decreases the sympathetic nervous system activity). By addressing part of the underlying pathophysiology of the disease, tVNS could be a promising treatment.

Completed studies on tVNS (and VNS) and relevant diseases

So far, there are not many completed studies that demonstrate the effectiveness of tVNS or VNS on relevant diseases. Here is a rundown of the studies I found:

• Transcutaneous VNS demonstrated promise in lowering immune responses which correlated with lower fatigue scores in subjects with primary Sjogren’s syndrome.
• A POTS patient had a VNS device surgically implanted for her epilepsy. Her POTS ended up improving as well. Although this patient used an implanted device, I still felt it was worth mentioning because it related specifically to POTS.

Studies in progress on tVNS in relevant diseases

• Dr. Furlan is studying the effects of the NEMOS device on POTS. He and his research partner Dr. Dipaola presented their preliminary findings at the Dysautonomia International Conference last year (I talk about this here). To sum it up, the small study was showing promising effects on heart rate variability (an indication of parasympathetic nervous system activity) and a few other markers as well as reported symptoms by the subjects.
• Dr. Kem and Dr. Stavrakis are studying the use of the Parasym device on POTS including on how it impacts the presence of certain autoantibodies found in POTS.
• Dr. Kovacic is studying the use of the IB-Stim device on POTS.
• Dr. Gauthey is measuring the impacts of tVNS on heart rate variability and muscle sympathetic nerve activity.
• Dr. Zanos is studying the effects of tVNS on autonomic nervous system function.
• Dr. Kong is studying the impact of tVNS on pain in fibromyalgia.
• Dr. Biaggioni is studying the use of tVNS alone and in conjunction with Mestinon and galantamine on POTS.
• Dr. Paccione is studying the impact of tVNS vs. deep breathing on fibromyalgia.
• Dr. Alptekin is studying the use of tVNS in fibromyalgia.

An interesting side note- as I was scanning ClinicalTrials.gov for this information, there are already several studies underway looking at the use of tVNS in COVID-19.

tVNS devices

There are several available tVNS devices, depending on your country. Some require a doctor’s prescription, some companies will provide the script themselves via an on-hand practitioner, and others are available without restrictions.

Here are a few examples:

• Parasym
• InTENSity devices
• CES Ultra
• IB-STIM
• Cerbomed (tVNS Technologies GmbH) NEMOS. The website it in German and I don’t sprechen ze deutsche, so I can’t tell what the new name of this device is.
• Fisher Wallace
• Gammacore
• Alpha-Stim

Some of the devices use ear clip electrodes. These can be placed on the ear lobes or the tragus of the ear. The NEMOS device (or whatever it is called now) uses electrodes on the superior concha of the ear. Others like the IB-STIM access the vagus nerve through the neck. I do not know which electrode placement is the most effective. There doesn’t seem to be a consensus among the companies or research articles. To my understanding, the mechanics of these devices are basically the same and they differ based on placement options. So, to choose one, I would go off of which electrode placement option you prefer (as well as price and availability, of course).

I will not disclose which specific device I used for ethical reasons. My evaluation of the device is partially outside the scope of the product’s claims, which is unfair. I hope you all understand and respect my reasoning. However, I will note that it was one of the ear clip electrode devices as that information is useful.

First experiences

In the beginning, I was absolutely terrified and worried that I would harm myself. There was a weird pressure sensation in my chest the first several sessions. In retrospect, it was probably anxiety.

After I got over the anxiety, I worked up to two 45-minute sessions per day. I clipped the left electrode to the tragus and the right electrode to my ear lobe. To find the right setting I would slowly increase the intensity to where I would feel it, and then back it down to where I could no longer feel the tingle.

Did it help?

Unfortunately, tVNS did not produce any positive effects for me. I used the device every single day for a little over two months. It did not even help with anxiety, which surprised me because there is a fairly robust amount of research to support this tVNS benefit. I was bummed about my lack of improvement. I try not to get my hopes up about new treatments, but I thought this would be a slam dunk because it targets the excess sympathetic nervous system activity that contributes to POTS and ME.

Side effects

I did not experience any side effects except for stressing myself out about it. It is possible that the device gave me a minor headache a couple times, but I suspect that was stress-induced.

Side effects can include: minor headaches, vertigo, and local skin irritation. Studies demonstrate that these side effects are pretty rare and some can be minimized by lowering the setting on the device.

Thoughts

I wonder if vagus nerve stimulation is a solid no-go for me, or if the electrode placement I used wasn’t specific enough to the vagus nerve. In the future, I would be curious to try out a superior concha or neck electrode placement as it seems that is the route that most clinical trials are going. I would be especially interested in trying the superior concha placement because the neck scares me without direct doctor supervision.

I also wonder if the future of vagus nerve stimulation will lie in external devices or in the surgically implanted ones. Although the external devices are noninvasive, easy to use, and bear less risks, they are less specific to the vagus nerve than surgically implanted devices.

Have you tried tVNS? How did it work for you?

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.