2023 POTS and ME/CFS Progress Update

Each year since I started the blog, I have detailed my POTS and ME/CFS progress. This post is a continuation of that tradition.

A few things to consider:

  1. These changes happened very gradually and subtly over multiple 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 (when it was its most severe for me). This compares my progress from 2018 to 2020-2023. 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.
  • 2021- Based on how I feel, I am almost certain that I would continue to no longer meet POTS criteria. My heart rate monitor is on the fritz, so I did not retest this.
  • 2022– I don’t have a heart rate monitor anymore, but I am guessing that I would still no longer meet POTS criteria.
  • 2023– I would still guess that I no longer meet POTS criteria.

Out of breath

  • 2018- Very often.
  • 2020- Occasionally.
  • 2021- Rarely.
  • 2022– Rarely.
  • 2023– Not an issue.

“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.
  • 2021- This occurs pretty rarely and doesn’t bother me.
  • 2022– I would say this is still pretty rare. However, I have been lifting more/heavier and having a greater overall activity level due to work and my muscles struggle sometimes. They feel like they don’t recover very well and get tight/junky feeling. For a while I considered this one in the same as “gassed” muscles, but I would characterize it as different upon more reflection.
  • 2023– Same as last year- my muscles struggle with recovery, but it’s not the same as the original “gassed” feeling. Gassed muscles aren’t really an issue for me anymore.

Low grade fevers with fever symptoms

  • 2018- Frequent.
  • 2020- Fairly rare.
  • 2021- No longer occurs.
  • 2022– No longer occurs.
  • 2023– No longer occurs.

Sore throat

  • 2018- Occasional.
  • 2020- Rare.
  • 2021- Extremely rare.
  • 2022– No longer occurs.
  • 2023– No longer occurs.

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.
  • 2021- Same as last year.
  • 2022– This and other GI issues got temporarily worse post-COVID, but now they are better than before.
  • 2023– This is better and dependent on what I eat.

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.
  • 2021- I still feel very confident in my cognitive abilities. I don’t have any consistent brain fog anymore. It only crops up in response to something like a random crash or overwhelm.
  • 2022– My brain fog got worse for a few months after I got COVID-19, but now it’s back to only being an issue when I overdo it.
  • 2023– This is a little worse this year. From spring to fall, it was worse all day. For the last two or so months, it is limited to the evenings.

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.
  • 2021- I drive everywhere I need to go as normal. I don’t drive long-distance (ex. traveling out of state). I imagine that I could if I took breaks, but I don’t have the desire to try it at this point.
  • 2022– I’m doing great with driving. I drive every day, sometimes up to an hour in one direction for work.
  • 2023– I continue to improve with this. I have driven as far as 100 minutes each way.

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.
  • 2021- This is a rare occurrence.
  • 2022– This has been happening more frequently this year, but it still passes through quickly, so I’ve been fine. For example, I’ll squat down, stand up, see stars and hold on to something, then I’m fine several seconds later.
  • 2023– Same as last year.

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.
  • 2021- I function around 80% of normal most of the time, which is amazing. Energy improvement has come subtly and slowly, but I can see the change when I compare what I can do in a day now compared to last year.
  • 2022– I function around 85% of normal most of the time and during the daytime. I have continued to see gradual improvement. Evenings are a little harder for me now, though, because the Post-COVID booster pain catches up to me and I get more fatigued than I used to during that time.
  • 2023– I have struggled a bit more with fatigue this year. I began working at the same time that I got the COVID booster last year. I kept pushing and pushing through that fatigue and pain for several months until it caught up with me. Early in the summer, I chose to decrease my hours at work because I felt like I was getting beat down. Evenings are still rough- not because of pain anymore- just from physical and mental fatigue. However, I think I’m on a better trajectory with my adjusted schedule and am optimistic about future fatigue. It’s hard to put a percentage on it because, honestly when I look at 2020, I’m like there’s no way I was 70% then. It’s like I forgot what normal was like. Now that I’m closer to normal, I would assign different values to previous years. I’d say I’m more like 75% of a normal person now, but I’m way better off than I was in 2020-2021.

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.
  • 2021- Rare and still take less than a day to bounce back from.
  • 2022– Same as last year.
  • 2023– Same as last year.

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.
  • 2021- Normal.
  • 2022– Normal.
  • 2023– There’s a lot of variance, but I’m not worried about it.

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.
  • 2021- Same as last year.
  • 2022– Same as last year.
  • 2023– Same as last year.

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.
  • 2021- I continue to get stronger and have more stamina as time goes on.
  • 2022– Continued gains.
  • 2023– Continued gains.

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.
Me trying to keep it together in public with VOR issues
  • 2020- I do not notice this at all anymore. Three cheers for physical therapy!
  • 2021- No issues.
  • 2022– No issues.
  • 2023– No issues.

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.
  • 2021- I continue to tolerate the heat and the cold better as time goes on.
  • 2022– I think I’m normal in this regard now.
  • 2023– I rock at this now.

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.
  • 2021- I’ve stayed healthy and have had zero sinus infections.
  • 2022– I’ve been healthy except for a bout of COVID-19 in February of this year.
  • 2023– Healthy as a horse. Just a random cold or two, totally normal.

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.
  • 2021- Same as last year.
  • 2022– Same as last year.
  • 2023– This has been occurring more frequently.

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.
  • 2021- I notice it in the winter, but I don’t think it’s a problem.
  • 2022– Normal and random.
  • 2023– Same as last year.
Picture of Vanilla Ice

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.
  • 2021- I exercise for almost two hours every day doing: weight lifting, walking, running, drills, and stretching. I have better non-exercise movement tolerance as well.
  • 2022– I exercise around an hour each day doing similar activities to last year. Although I exercise less, I work more and my jobs are physical.
  • 2023– I exercise between an hour and an hour and a half each day doing running, lifting, varied cardio, PT exercises, and drills. I also stretch throughout the day. I am still working part-time in physical jobs. I began to do track workouts this year and am getting a lot faster.

Dry eyes

  • 2018- No problems.
  • 2019- Dry eye syndrome and blepharitis.
  • 2020- Prone to the issues above, but it’s under control/treated.
  • 2021- I’m still prone to those issues and they occasionally become a nuisance, but it’s mostly under control.
  • 2022– This has been a little more annoying this year, but it’s still mostly under control.
  • 2023– They got way worse this year. I sought out treatment from a dry eye specialist. That has significantly improved things, but it’s still an ongoing issue.

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.
  • 2021- Not an issue.
  • 2022– For most of 2022, none. However, I get headaches now due to the COVID-19 booster reaction. They occur a couple times per week, mostly in the evening or when I get worn out. This is improving gradually over time.
  • 2023– Not an issue.

Pain

  • 2018– Occasional mild fever body ache sensation during crashes.
  • 2020– Rare body aches.
  • 2021– Very rare body aches.
  • 2022– Very rare for most of the year. However, since the booster I get frequent, mild body aches that span from my head, down my neck, and down my arms into my hands. The pain has definitely improved after two courses of prednisone and with time.
  • 2023– Very rare body aches- only if I overdo it. I don’t get any of the pain from the booster anymore.

Heart Arrythmias

  • 2018– None.
  • 2020– None.
  • 2021– None.
  • 2022– After the COVID-19 infection in February, I had PVCs for around three months. Then, I was fine until I received the COVID-19 booster in the fall. Now, it feels like I get something. Perhaps it’s just more tachycardia than I’m used to. It’s hard to put my finger on what it is, but it feels like a random flutter in my chest. I haven’t gotten it evaluated yet because I don’t think it coincides with any other symptoms.
  • 2023– I get occasional PVCs or something similar. It doesn’t cause any problems and is infrequent, so I just ignore it.

Sleep

  • 2018- Rare insomnia.
  • 2020- No sleep problems.
  • 2021- No issues.
  • 2022– No issues.
  • 2023– No issues.

2023 has been a bit of a mixed bag like 2022. Some factors got worse, some got better. I believe 2024 will bring improvement across the board as I continue to learn, adapt, and seek out ways to improve.

Random thought- The other day I was thinking about how much time and money I spend to be healthy with POTS and ME/CFS. And it’s a mega ton. I just want to acknowledge this and if you feel like this rings true for you- I see you.

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.

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Advanced Dry Eye Treatments/Interventions

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.

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Notes From the 2023 Dysautonomia International Conference

The conference was a bit different this year as it was in person after a few years of being on Zoom due to the pandemic. Luckily, Dysautonomia International still offered a virtual option where the recordings would be sent at a later date. I chose that option as I live far from DC.

The number of recaps I have is on the light side this year. Not all of the sessions are available in the virtual portal (at least not yet), and of those, only a few piqued my interest. A year is not a long time in terms of research, so topics I have heard covered in the past, I tended to skim to see if there was any new information.

Every Breath You Take: Hyperpnea, Hypocapnia, and POTS. By Glen Cook MD

  • The big POTS study showed that 88% of POTS patients have shortness of breath.
  • The decreased central blood volume typical in POTS leads to a decreased cardiac output, this causes a drop on the stretch of the baroreceptors in the carotid sinus, the medulla responds, sympathetic nervous system activity increases, ventilation and heart rate increases, the pH of the blood increases, and this causes a constriction of vasculature to the brain.
  • The decrease in central blood volume can have various causes depending on the POTS patient.
  • Increased ventilation in POTS is different than increased ventilation in panic attacks or self-induced increases in ventilation.
  • A research group from Vanderbilt is studying if a device the creates inspiration resistance improves POTS symptoms.
  • Different research groups are also studying POTS from this angle with different interventions such as a compressive neck collar or the modulation of P2X3 receptors.
  • Dr. Cook wonders if other breathing interventions will prove useful with future study (biofeedback-esque interventions).

Research Updates of POTS. By Satish Raj MD.

  • POTS and pregnancy study. Generally, patient’s POTS symptoms got worse during pregnancy (around 60% of patients). The rest were the same or got better. The first trimester symptom burden tended to predict second and third trimester symptoms burdens. 3.6% out of 218 studied report that pregnancy triggered their POTS.
  • POTS and EDS (Ehlers-Danlos Syndrome). Around 25% of POTS patients have EDS in their study. 28% of patients that have POTS and EDS also have mast cell activation syndrome (MCAS), while only 5% of patients with POTS and no EDS have MCAS. That is a very significant finding. EDS patients are usually diagnosed earlier in their lives but tend to have a longer diagnostic delay. EDS patients are more likely to have a family history of fainting or POTS (may demonstrate a genetic component). Neurological and GI symptoms rates are slightly higher in the EDS group than the only POTS group.
  • POTS and compression garments. The study demonstrated that compression decreased heart rate upon standing and decreased symptom burden. Several areas of compression were studied- full (legs and abdomen), abdomen, legs, and none as a control. Full compression is the most effective followed by abdomen and then drop off to legs which was modestly higher than no compression. Dr. Raj’s lab extended this study to commercial products used at home. In his words, they used “butt ugly” neoprene and velco wraps in the lab study. He’s a hoot. The home study demonstrated the same results- improvement in heart rate and improvement symptoms. They did not control garments used, they just gave the guideline of waist-high compression stockings.
  • Autonomic function in long Covid. He said us patients who had POTS before Covid should thank the Covid patients because before “no one gave a crap” (except more colorful language). I appreciate his honesty and agree that Covid has furthered the study of POTS. In this study they did an active stand test with beat-to-beat monitoring. The patients were on average 1 year post-Covid. 73% of the patients in the study had a cardiac autonomic abnormality (CAA). 61% had initial orthostatic hypotension (IOH), 30% had POTS, 2.9% had OH (orthostatic hypotension), and 1.4% had IST (inappropriate sinus tachycardia). Most groups were biological female dominant, except the IOH group which was more evenly split between biological males and biological females. A small percent improved 3 months after the initial study (so roughly 12 months vs 15 months post-Covid).
  • Q&A. Dr. Raj has had post-Covid vaccine POTS patients as had a physician who asked a question. This hasn’t been studied yet as it was hard to find enough people to participate in the study. Dr. Raj noted that he found the 3rd shot worsened some of his patients that already had POTS. I found that interesting because it was my 3rd shot that did me dirty. For compression stockings, he doesn’t necessarily recommend a single brand, but he says he usually tells his patients to get waist high compression tights from a sporting goods store. He said some of his patients like the brand 2XU.

Using an Ear Device to Monitor Blood Flow to the Head as a Dysautonomia Management Tool. By Daniel Lee MD and Marat Fudim MD.

  • The tool is called STAT, it is a wearable that measures a shallow ear artery.
  • It is the equivalent of a continuous glucose monitor, but for cardiovascular disease.
  • The device will measure flow changes in the external carotid artery.
  • Testing has demonstrated that the device is effective in its measurements compared to TCD ultrasound devices and carotid ultrasound. The testing for this has been small, so they hope to expand it further in the future.
  • Other methods of measuring blood flow changes have limitations that this device hopes to remedy by being ambulatory, realistic, discreet, continuous, and user-friendly.
  • The device links with an app that can be used as a pacing tool.
  • The product is launching its pre-order on October 19th. This is the link to Stat Health’s website.
Meme of Tom Cruise Sprinting saying "me signing up for STAT"

Brain Fog, Cognitive Dysfunction and Blood Flow in the Dysautonomia Brain. By Amanda Miller PhD.

  • Dr. Miller is a Dysautonomia patient.
  • Brain fog can be triggered even while lying down.
  • Language, executive function, complex attention, learning, and memory are all domains affected in POTS.
  • Attention scores for POTS sit between the level of normal controls and people with ADHD.
  • Ruff 227 speed scores were worse in POTS patients than controls.
  • POTS patients performed worse on identification tasks when upright compared to lying down. When lying down, the POTS patients performed roughly the same as the controls.
  • POTS patients performed significantly worse than controls on executive function testing (in this case the stroop color word test).
  • Working memory scored lower in POTS and CFS patients than controls (verbal n-back test).
  • There is no difference in psychomotor speed or verbal fluency between POTS patients and controls, which suggest a selectivity in the cognitive deficits.
  • 1/3 of POTS patients had mild impairment in executive functioning.
  • Attention seems to be affected by position.
  • Treatment- 70% of patients using stimulants demonstrate improvement. Patients report these as the top 5 treatments for brain fog: IV saline, stimulants, salt tablets, B-12 injections, and midodrine.
  • In POTS, mild changes in blood pressure alter cerebral blood flow. Healthy people’s blood pressure can vary, but cerebral blood flow remains constant.
  • Decreased brain blood flow precedes tachycardia.
  • Dr. Miller is doing a study where fMRIs will be taken during cognitive testing on POTS patients under orthostatic stress (lower body negative pressure).

Dysautonomia After Covid- What Should My Doctor Do? By Liza Fisher and Svetlana Blitshteyn MD.

  • Liza mentioned a therapy that I had not heard of that helped her- external counterpulsation therapy (EECP).
  • Of Dr. Blitshteyn’s patients with post-Covid dysautonomia, 60% have been unable to return to work.
  • A number of physicians can manage long haul Covid including a PCP, physiatrist, neurologist, cardiologist, pulmonologist, PT, psychiatrist/psychologist. The main thing is that they need to be compassionate and knowledgeable.
  • Dr. Blitshteyn and colleagues wrote a paper outlining guidelines for the assessment and treatment of post-Covid Dysautonomia.
  • This is the link to that paper. It is a beneficial resource for both the patient and the physician to use to collaborate on a treatment plan for post-Covid dysautonomia.
  • A lot of the interventions and assessments covered were things that have been staples in this field, but there were a few things that were newer such as the recommendation of a short course of steroids. The paper is also comprehensive, and having all that info in one place is fantastic.

Immunotherapy for POTS. By Tae Chung MD.

  • Proposed mechanism of POTS: pathogen, immune system fights it, molecular mimicry occurs, immune system then attacks its own nervous system.
  • Volume expansion therapies treat the symptoms, but not the underlying cause. Immunotherapy targets the underlying cause. It’s not a cure, but it still address more of the underlying pathophysiology.
  • When to consider immunotherapy: when autoimmunity is clinically suspected such as a post-infectious onset, volume expansion fails to restore function, flares are too frequent and too debilitating, and only when the potential benefit outweighs potential side effects.
  • Potential benefits: disease modifying effects, more powerful, may restore function, and may possibly prevent flares.
  • Potential concerns: immune suppression, lack of biomarker/outcome, uncertainty, and drug side effects.
  • Dr. Chung aims to rule out non-immune mediated POTS via a workup to make sure it truly is the correct path of treatment.
  • Immunotherapy drugs: temporary high-dose steroids (sometimes in conjunction with a secondary agent), IVIG, Subcutaneous IG, and agents like plaquenil, methotrexate, azathioprine, mycophenolate mofetil, and rituximab.
  • High-dose steroids have a lot of side-effects and are not ideal beyond a short bout.
  • IVIG- may take several months for symptoms to respond. IVIG is very expensive and there is a high rate of denial from insurance. It is common for POTS patients to get bad headaches. fatigue, and pain from infusions. Infusions can also be a hassle.
  • Subcutaneous IG tends to be tolerated better. It is difficult to find an equivalent dose with IVIg if patients do not have enough subcutaneous tissues. Dr. Chung usually starts patients with IVIG, and the switches to subcutaneous IG.
  • Dr. Chung doesn’t use agents like plaquenil and the others listed above very often.
  • There isn’t clear evidence to support any of these immunotherapy agents at this point. More studies need to be done.
  • Randomized controlled trial studies need to occur for this to become more widespread and more acceptable to insurance.

Venous Disease and Dysautonomia, Underdiagnosed and Misunderstood. By Alexis Cutchins MD.

  • Dr. Cutchins stated that this is largely anecdotal based on her experience.
  • Venous disease causes blood pooling in the lower extremities or pelvis, contributing to POTS.
  • There is a lot of symptom overlap between POTS and pelvic venous disease.
  • Symptoms of lower extremity venous insufficiency include aching legs, swollen feet and ankles, burning or tingling in legs, cramps in legs especially at night, itchy and thin skin over affected vein, and pain that worsens upon standing.
  • Iliac vein compression- left iliac vein becomes compressed by the right iliac artery. Symptoms include left leg symptoms such as swelling, heaviness, and varicosity.
  • Nutcracker syndrome- entrapment of left renal vein between the abdominal aorta and superior mesenteric artery. Symptoms include hematuria, orthostatic proteinuria, flank pain, abdominal pain, pelvic venous congestion, fatigue, orthostatic intolerance, dysmenorrhea.
  • Pelvic venous disease overall typically features pelvic pain that worsens in an upright position, dyspareunia, vulvodynia, dysuria, low back or hip pain, and varicosities.
  • It is quite possible that mixed connective tissue disease seen in the POTS population makes them more likely to develop venous disease.
  • In a study, 70% of POTS patients had iliac vein compression while only 40% of the normal group had iliac vein compression.
  • Treatment for lower extremity venous insufficiency includes compression garments, radio frequency ablation, or supplementation with diosmin.
  • Treatment for nutcracker includes aspirin, renal vein stent, or autologous renal transplant.
  • Treatment of iliac vein compression includes an endovascular stent or sclerotherapy/coiling.
  • Treatment in terms of Dysautonomia is not clear. Concerns include MCAS and reactivity, stent embolization, stent thrombosis, infection risk, and worsening of symptoms.
  • One patient of Dr. Cutchins had MCAS and Dysautonomia along with lower extremity venous insufficiency. Venous ablation had a profound positive effect on her Dysautonomia symptoms.
  • Another patient had POTS and mild iliac vein compression. An iliac vein stent improved pelvic and dysautonomia symptoms.
  • It’s not a cure to treat these venous diseases, but they may be helpful in the improvement of dysautonomia symptoms of these patients.
  • Dr. Cutchins screened all her patients- 88% had lower extremity venous insufficiency and 80% had pelvic venous disease.
  • The data from 6 of her dysautonomia patients that were treated for their venous diseases ended up with significant improvement across broad areas of symptoms.
  • Dr. Cutchins does all the usual treatments for her patients but also evaluates them for venous disease using both an extensive review of systems and imaging.
  • She orders doppler imaging for suspected lower extremity venous insufficiency and venograms for suspected pelvic venous disease.

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.

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Current Favorite Electrolyte Drink Recipes

I have been continuing to run through the summer and I lose a lot of water. Which, is a polite way to say I sweat a lot.

Meme about sweating

I was finding that I needed an electrolyte drink after each run. However, my personal preference is to not consume artificial sweeteners, flavors, etc. on the regular. So, I was on the hunt to find an electrolyte drink that still works as well, tastes good, and has more simple ingredients. I could not find any fully pre-made solutions that I was satisfied with, so I decided to make my own concoctions.

Base Electrolyte Solution

You can mix your own oral rehydration solution (ORS) using the WHO’s recommendation. I have been using Hi-Lyte for the base since it’s similar electrolyte-wise and then you just add sugar with the drink you use. I have been using the regular liquid version of it.

Picture of Hy-Lyte

Recipes

These two drinks are tasty and effective for me. I used drinks that have some sugar as it helps electrolytes absorb better, but not an exorbitant amount of it.

Watermelon water

I add 1 teaspoon of the Hi-Lyte solution to an 8 oz. glass of watermelon water. I found this at Target.

Picture of watermelon water

The watermelon water is super tasty! Then, the Hi-Lyte solution adds a bit of saltiness, so it ends up tasting like salty watermelon. Watermelon water also contains some electrolytes on its own.

Organic strawberry lemonade

I found this juice at Target as well. It is freaking delicious and reminds me of Fruit by the Foot or a Fruit Roll-up. It gave me some 90’s kid nostalgia. I dilute the juice to half since it is more sugary. Luckily, it is still tasty and flavorful that way. So, I mix 4. oz of water with 4 oz. of the juice and a teaspoon of Hi-Lyte.

Picture of Organic Strawberry Lemonade

These two drinks have been working well for me to rehydrate after runs. What are you favorite ways to rehydrate after exercise?

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.

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SSRIs for POTS and ME/CFS

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.

Meme about pacing

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.

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