Drop It Like It's POTS

Running with POTS

May 26, 2022 5 Comments

Prior to POTS, I was an avid runner and loved it. I ran cross-country and track throughout high school and college. Post-college, I continued to train and would do a race every now and then. Right before POTS hit me like a ton of bricks, I started thinking about racing again and was trying to get in 1-mile road race condition. I didn’t try running again until a few years later during the Modified Levine Protocol. It felt horrible, so I stopped and figured my running days were over.

Last year (2021), I had the itch to try to run again. This is cheesy, but it struck me after watching the Olympics. It reminded me of the joy that running used to bring me. So, I thought, why not give it a whirl again? It may not work out long-term, and that is okay. I made peace with the fact that I was done running a long time ago, so this is all just a bonus for me.

Note- For those not familiar with my story, when I was first diagnosed, I could tolerate 3 minutes of extremely light exercise. It has taken nearly 4 years of gradual building, recovery, treatment, etc. to get to this point. This is a big effing deal. That being said, this is my unique journey, take it for what it is.

The Process

First, I built a foundation by working up to 3 miles of walking every day for several months. That was smart. Then, I started running 10-15 minutes at a time and threw in some fast intervals. That was NOT smart. If you’re a healthy high-schooler, sure, that may work. But, I’ve come to understand that my mid-thirties POTS body requires an extremely gradual approach with tons of TLC.

Eventually, I worked with a PT that helped me get on a better path. You can read about my experience with that here. I currently do PT exercises three times per week (just dropped down from daily) using a combo of what I learned at the PT recently, things I have taken away from previous PT stints, new things I learn from podcasts, articles, books, etc., and sometimes things that I make up. I also strategically lift weights three times per week and do plyometrics once per week. Collectively, this is all very “extra”, but through these last several months of trial and error, I have learned that it is what my body needs to get it able to run healthily.

As for the actual running, I used a walk/jog approach for a while, starting with three sets of one minute of running. I increased the time when it felt right. I eventually switched to two longer sets of walk/run, and then to just running when I was around 12 minutes total. After Covid (about 6 weeks off), I started with 3 minutes of running and just added one minute each session. However, I would occasionally plateau at certain levels for a couple sessions when it felt prudent.

Where I’m at now

As I mentioned, it’s been a long process rife with minor injuries and illnesses (you can read about my experience with Covid here). I have been working on this “running project” since September 2021, and as of now (May 2022) I can successfully run 20 minutes three times per week.

I recently started incorporating speed work. On one run each week I started doing a couple “striders”, which are repeats of roughly 100m below a sprint pace. Currently, I am doing low volume interval workouts like 3×1 minute with 1 minute rest between followed by 2×30 second sprints.

I still walk every day, but I walk less on the days that I run.

I am thrilled by where I am at. Sure, it’s taken a long time with a lot of ups and downs, but if you would have told me back in 2017/2018 that I was running again, I wouldn’t have believed you.

Future Plans

I plan to continue to increase the time spent running, how many days I run, and the volume of the speed workouts (as my body permits). It would be awesome to race middle distances again some day, so I’d like to get to the point of tolerating the workload necessary for that. However, I don’t know if that is a realistic goal. I’ll just keep building and see if I get there.

Words of Wisdom

You must be strong to run. I recommend lifting weights and having a repertoire of PT accessory exercises that you mix with it.
See a PT if you’re having trouble.
Add in plyometrics when you’re ready. It will train your tissues be able to handle the loads of running more. Start small (one set, 6-10 reps, simple exercises, once per week). Plyometrics are a power exercise, so they require full rest to get the most out of them. Insanity-style HIIT workouts and bootcamp workouts are NOT going to achieve the same thing.
Start with ridiculously low volume and advance ridiculously slowly.
Use massage tools like a foam roller or Yoga Tune-Up ball.
Strengthen and mobilize your feet. I do this by wearing minimalist/barefoot shoes for walking and daily life, Yoga Tune-Up ball, Happy Feet socks in the evening, and some exercises I’ve picked up from various sources.
Be mobile in every day life, not just in running. It’s jarring on the body to go from a sedentary lifestyle to running.
Incorporate an extensive warm-up including drills to improve form.

If you have any questions or want more details about these points, feel free to comment or send me an e-mail.

How Running Has Impacted my POTS

This is the most exciting part of running again- my POTS improve the more I run!

My energy levels and pre-syncope have improved since I began running. I am super psyched about it. I also saw a correlation between doing longer walks/faster walks and how I felt. So, do not be dismayed if you cannot run. There’s a lot of benefit you can reap before getting to the point of running.

If you have been following this blog for a while you may remember that I was pretty indifferent on long cardio and interval training after doing the Modified Levine Protocol. I thought the protocol was helpful for me, but felt like the volume was too high and it burned me out. That was true for where I was at that point. However, now, I can handle more and am continuing to reap the benefits of doing increasing loads/volume/intensity as tolerated.

A few years ago, I read an article about how jump training improves POTS due to its effect on the muscular pump to return blood back upwards from the lower legs. Unfortunately, I cannot find that article anymore to link it. If you find it, please let me know! This study has been on my mind as I experience an improvement in POTS from running and plyometrics. Obviously plyometrics is jump training, but running also checks this box. Running is essentially a series of jumps. If I find that I am no longer able to run, I will definitely find ways to incorporate jump training to continue reaping these benefits. In addition to plyometrics, I would try jump roping. Jump roping produces less impact than running, but still has that rebounding off the ground effect that is beneficial.

To read more about the benefits of exercise in general, you can check out my article on Exercise and POTS.

Do you run with POTS or a different chronic illness? How has it impacted your health and life?

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.

Other

My Experience with COVID-19

March 17, 2022 7 Comments

After successfully dodging COVID-19 for nearly two years, I got it at the tail end of the Omicron wave. I am fully vaccinated, but not boosted.

Note- I have not received the booster because I was not eligible due to receiving monoclonal antibodies back in November from a positive rapid test that I suspect was a false positive (had multiple negative rapid tests after that, a negative PCR, and no symptoms after one day of feeling vaguely crummy).

What it was like

The onset of symptoms and first couple of days felt very similar to the 2nd dose vaccine side-effects that I had- aches, chills, and fever. I also developed congestion and a cough. It was very contagious and spread to my family quickly. They experienced various levels of it, but I’m happy to say they were back to full health quickly.

How it affected POTS and ME/CFS

A few days into Covid, my POTS/ME flared up pretty severely. It was terrifying. I felt like all my progress was lost and I was anxious about what this would mean for my future.

After a few days, the most severe aspects of the flare subsided. It was a huge relief. However, I still have more pre-syncopal episodes upon standing and brain fog (around six weeks later at this point). My daily energy levels are mostly normal, so that is helping me cope with it and continue my normal schedule including work. I would say, though, that I’ve had a couple energy crashes that I feel I wouldn’t have had pre-Covid.

This is my new favorite meme. The phrase “physically cannot listen” cracks me up. That’s exactly what it’s like when you crash with brain fog.

I get minor GI issues from POTS and they have also flared up post-COVID. It seems like my gut is taking issue with certain things that I eat. So, I’m going to do my best to keep my gut happier by minimizing what irritates it. I’m also going to try to eat smaller meals.

Overall, I am not worried about these flares. I believe that they will pass over time.

Another effect

On the first day of symptoms, I noticed a weird flip-flop feeling in my chest from my heart. I ignored it and didn’t even mention it when I saw the doctor for Covid the next day. However, this sensation persisted and became more frequent. After a few days, I went to urgent care where they performed an EKG. The EKG showed that I was having premature ventricular contractions (PVCs) and that my left atrium was enlarged. The doctor told me to follow up with my family doctor and go to the ER if I got short of breath etc. So, I followed up after I was no longer contagious with Covid, the EKG was still abnormal, and my doctor referred me to a cardiologist.

The cardiologist said that he has seen many post-Covid patients come in with new Dysautonomias, which would make sense as to why my POTS is worse. He mentioned that a similar mechanism most likely disrupted the electrical signal of my heart causing the PVCs. The cardiologist said that they will go away over time and that I can take medication to minimize symptoms in the meantime.

The cardiologist ordered a thyroid test, a transthoracic echo, and a 3-day holter monitor. The thyroid test and echo came back normal, which was great news. The holter monitor showed that I had PVCs 2.8% of the time. They do not get concerned until the burden of PVC’s is above 10%, so I checked out with that test as well.

I tried Propranolol and Diltiazem for the PVCs (at different times). Propranolol didn’t do very much, but Diltiazem lessened the sensation of the PVCs quite a bit. Unfortunately, both caused side effects that were more disruptive than the PVCs. The purpose of these medications were simply symptom management, so I discontinued them.

Update

It took about 2.5 months for me to feel like things were turning a corner. The PVCs are much better- less frequent and less noticeable. The POTS flare is also on a good trajectory- I’ve had significantly less pre-syncope. The energy crashes may also be getting better. The brain fog and GI issues are persistent.

At 3 months post-Covid the PVCs are gone or at least very infrequent and mild. The pre-syncope is back to its pre-Covid state. The energy crashes are significantly better and almost back to normal. Brain fog and GI issues are still sticking around at the same level. I am very encouraged about where I am at now. My progress took off exponentially around the 2.5 post-Covid mark, so I have a lot of hope for what these next few weeks will bring.

At almost 4 months post-Covid the PVCs are definitely gone, pre-syncope is back to normal, and energy crashes are back to normal. Brain fog is slightly better lately with it mostly being noticeable in the evenings. GI stuff is unchanged.

At 4.5 months post-Covid, the brain fog seems to be on a good trajectory, but the improvement is moving in slow and gradual increments. The GI issues have seen some improved in the last two weeks. I strictly cut dairy and gluten out of my diet and that has made a difference. I’ve known that dairy was an issue for a while, I just got lax about it. However, having such a significant and direct impact with gluten is new for me. It seems that my brush with Covid has enhanced this food sensitivity. Has anyone else experienced this?

Summer of 2022, the brain fog is gone and the GI issues are resolved. I have no more lingering COVID-19 effects.

What was your experience with Covid like? Do you have any long-term effects?

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.

Exercise

Recent Physical Therapy Experience

January 6, 2022 6 Comments

One of the things on my “to-do” list for last year was manual physical therapy. In early October, I began seeing a physical therapist that uses both manual and traditional physical therapy modalities.

Why I sought out PT

Ever since I became ill with POTS and ME/CFS, I have struggled to regain my core/hip flexor strength and have been prone to patellofemoral pain and random issues like a nerve impingement. In addition to those chronic issues, I recently strained a calf muscle and it has been extremely slow to heal. I had been chomping at the bit to start running again (which is super exciting), but these issues were a hindrance. I was also hoping to improve overall function and energy/efficiency. Dr. Peter Rowe recommends manual PT to his patients for this reason.

Side note, the way my calf strain occurred is hilarious. I was goofing around and running with my kids, when suddenly my younger son ran right in front of me. I went from full stride to a superhero maneuver in a split second to avoid plowing into him. My calf was like, “Who do you think you are?” and got promptly injured.

What this PT is like

In the initial hour-long appointment, I was evaluated for strength and mobility in the areas of concern. Then, the PT did manual work on tight areas. Manual work is very similar to sports massage or orthopedic bodywork. Finally, I was given a set of exercises and stretches to do twice per day at home. It took roughly 30 minutes for me to complete each exercise/stretch session. In addition to the exercises and stretches, I use massage tools like a mini foam roller and Yoga Tune-Up ball to maintain the manual work.

Follow-up sessions lasted about 30 minutes. They included manual work and review of the exercises. The PT would watch me do the exercises to check form and to determine when I was ready to move to the next progression. She would also add in new exercises or stretches as she saw fit.

Each office, practitioner, and patient is different, but I went in for appointments roughly every two weeks. I felt prepared to do the exercises on my own, I have the necessary equipment at home, and can replicate most of the manual work myself with tools, so this schedule worked well for me.

Pros

Having to do the exercises and stretches twice per day has improved my strength where I previously felt “stuck”. I have done many of these exercises before, but doing them twice per day rather than twice per week made a difference. The exercises I had to start with were pretty remedial, so it was okay to do them this often. It’s important to note that as you progress to more challenging moves and loads, you do not have to do the exercises as often.

It is helpful to be guided through a strength progression by a professional. Not only does in ensure proper form, but then the exercises are tailored to meet you where you are at. For example, before PT I was already doing single leg Romanian deadlifts. First of all, I was doing them incorrectly by opening my hip and second, I probably wasn’t ready for them without first establishing more basic movements.

The manual work helps to accelerate the results. I had been dealing with a consistent nerve pain starting in my hip and ending with a hot feeling at the top of my foot whenever I would flex my hip joint for almost two months. Since manual PT and my at-home maintenance, it is a rare occurrence.

Most insurance companies cover this type of work, so it can be relatively affordable if you choose a provider in your network. It is also something that you don’t have to go to very frequently if you feel comfortable replicating things at home. Even if you don’t feel comfortable with it right away, it is something that you can work towards so that PT becomes less of a burden.

Cons

Because insurance is involved in this type of PT, it is restricting. So, I had to narrow the focus of the areas I wanted addressed. Also, insurance will only cover it for a certain number of sessions/period of time.

Due to having to narrow the focus to a limited area, this work isn’t conducive to the manual physical therapy work needed to boost overall energy (the type Dr. Peter Rowe discusses). For that, you would most likely need to find a provider who doesn’t submit claims to insurance. The downside of that is it becomes very costly. I don’t think I will pursue that type of treatment anymore for that reason in addition to the fact that I don’t want to have frequent appointments at this time.

The twice-per-day sessions are exhausting. Now, I love exercising, and motivation isn’t an issue. However, I found that my muscles did not recover as I expected. I had to take that into consideration and adjust accordingly. Some days I would take off completely, some days do less sets in the evening, etc. After about six weeks when the movements progressed to be more difficult, I switched to once per day. Then, once I was doing more advanced progressions, it evolved to a few times per week.

Update and Final Thoughts

After several sessions of PT, I felt like I was on a good trajectory and decided with my PT to discontinue sessions. For the most part, I have been doing fairly well with my areas of concern. However, running has still been a finicky thing. It is taking a lot of trial and error for me to successfully return to running. I’ll discuss this in a future post.

I think PT would be a great idea for people returning to more movement if they find themselves injury prone. In particular, this would be useful for people that were bed-bound or sedentary. Muscular imbalances can occur during that time and sometimes it takes a professional to get things going in the right direction. My advice would be to make sure you take it extra slow in progressing to more movement, especially if you want to return to a sport.

Have you seen a manual or traditional physical therapist? How has it impacted your health?

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.

Other

2021 POTS and ME/CFS Progress Update

December 14, 2021 10 Comments

A little over one year ago, I detailed my POTS and ME/CFS progress. This post is a copy of that, but I have added where I am at in each category in 2021.

A few things to consider:

These changes happened very gradually and subtly over multiple years.
This improvement has happened with the culmination of dozens of small things/treatments and time.
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, and to now in 2021. 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.

Out of breath

2018- Very often.
2020- Occasionally.
2021- Rarely.

“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.

Low grade fevers with fever symptoms

2018- Frequent.
2020- Fairly rare.
2021- No longer occurs.

Sore throat

2018- Occasional.
2020- Rare.
2021- Extremely 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.
2021- Same as last year.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Sleep

2018- Rare insomnia.
2020- No sleep problems.
2021- No issues.

I am glad that I updated this for 2021, because it opened my eyes to how much better I am doing this year. These changes can happen so subtly that they are imperceptible until you take a step back. I am very encouraged by the progress that I continue to make and am hopeful about my 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.

Medications/Treatments etc.

Things I Have Tried for GI Symptoms

November 24, 2021 2 Comments

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.