I am pumped about this year’s conference. The topics are timely, intriguing, and I am thrilled to share my notes with you all.

Similar to previous years, I attend selected lectures that tend to be more specific in topic and are related to POTS, ME/CFS, and Long Covid. Therefore, these notes are not exhaustive to the entire conference.

Dysautonomia: Associations with Gastrointestinal Function, Joint Hypermobility, and Autoimmunity. By Jay Pasricha MD

• Dr. Pasricha discussed his study on JAG-A patients. JAG-A refers to a constellation of disorders including: joint hypermobility, autonomic dysfunction, gastrointestinal dysfunction, and autoimmunity.
• He treated 42 of his JAG-A patients with IVIG (intravenous immunoglobulin).
• The results showed highly significant improvement in overall quality of life (3-4 points of improvement on a scale that ranges from -7 to 7) and highly significant improvement in each gastrointestinal-related measure.
• The comparison group consisted of 7 “pseudo-controls”. They were not true controls because they were not randomized or blinded.
• Dr. Pasricha’s advice to other physicians is to not dismiss refractory symptoms to be “functional”. Functional GI disorders would include IBS, functional abdominal pain, etc.). He suggests that physicians look for the signs of joint hypermobility and autoimmunity in these patients.
• IVIG treatment may be indicated for GI patients with joint hypermobility or autoimmunity.
• Dr. Pasricha’s advice to patients interested in IVIG:
  • Autoimmunity alone isn’t an indicator that the patients is a good candidate for IVIG. Insurance may balk at this.
  • You need a doctor that is on board to do all the tests necessary to see if there are multiple autoimmune disorders or immune deficiencies.
  • Joint hypermobility may be an easier path to IVIG because IVIG is indicated for connective tissue diseases.
  • Immunologists are most likely to prescribe IVIG and find the criteria necessary for this treatment.
• Lauren Stiles (the president of Dysautonomia International) said that preliminary research indicates that Dyautonomia patients do well with lower dose (1g/kg bodyweight) of IVIG compared to the normal dose (2g/kg bodyweight).
• The gastric emptying test is not very reliable on its own to diagnose motility disorders. It has to be interpreted in the context of what is going on in the patient.
• IVIG ramps down the immune response via modulation, but does not suppress it like traditional immunosuppressants. For this reason, Dr. Pasricha prefers IVIG. That being said, IVIG is not benign and can bear side effects. The most common side effect is headaches.

Autoimmunity and Mast Cell Activation in POTS. By Taylor Doherty MD.

• Dr. Doherty has POTS himself. It developed after an infection he picked up in Europe.
• 20-50% of POTS patients have some sort of acute infection trigger similar to Dr. Doherty. Many different pathogens can trigger POTS..
• Other POTS triggers include: surgery, pregnancy, vaccine, and concussion. This is not an exhaustive list.
• 16% of POTS patients have a comorbid autoimmune disease. Autoimmunity tends to flock together so this is not surprising.
• There are some autoantibodies associated with POTS (ex. angiotensin 2, muscarinic cholinergic, and adrenergic).
  • The types of autoantibodies present differ among patients. This could explain the heterogeneity of POTS symptoms/presentation.
• Potential treatments targeting the autoimmune component of POTS (Dr. Doherty was treated with all of these along the way):
  • IVIG- Has been shown to increase the functional ability and decrease the Compass 31 score in POTS patients.
  • Plasmapheresis
  • Rituximab
• 9% of POTS patients have MCAS
• Omalizumab may be used to treat MCAS. It is a monoclonal antibody treatment.
• The histamine blocker famotidine also stimulates the vagus nerve which attenuates inflammatory cytokine activity.
• Dr. Doherty promotes the “3 leg stool model” for POTS treatment
  • Symptomatic medications ex. beta blocker, ivabradine, etc.
  • Lifestyle ex. Sleep, salt, compression, fluids, diet, etc.
  • Targeting underlying causes ex. autoimmune, EDS, structural, etc.
• SCIG (sub cutaneous immunoglobulin) may be the wave of the future as it can be self-administered and has a lower incidence of side effect compared to IVIG.

If you have attended any of the lectures, what did you learn?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

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

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.

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.

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:

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, 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.

• 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.

Sadly, as COVID-19 continues its devastating course, many are left in the wake with debilitating chronic illnesses. Their immune systems respond in a way to COVID-19 that leaves them with Post-Acute COVID-19 Syndrome (PACS for short). For whatever reason, COVID-19 has a penchant for initiating the overactive immune system response that leads to post-viral illness.

There are many people with PACS and other post-viral syndromes that don’t know where to start in navigating the medical system. I feel deeply for this struggle because I went through it myself. I hope this information serves as a guide for both PACS and other post-viral patients.

Note- PACS can mean that someone has a form of Dysautonomia (ex. POTS), ME/CFS, something else, or a combination of these factors. It seems that most PACS patients have Dysautonomia or ME/CFS, so I narrow in on those conditions.

Disclaimer- This article is based around the medical system and clinics in the United States.

Update- PACS is now called PASC: Post-Acute Sequelae of COVID-19. Excuse me while I google what sequelae means.

Step 1- Basic check-up to rule out many serious conditions

• Make a list of your symptoms and bring them to your primary care doctor to rule out certain serious conditions that can happen after viruses like COVID-19 (ex. heart inflammation).

Step 2- Make an appointment at a PACS clinic

• If you have a different type of post-viral illness (not PACS), skip this step.
• If you live near or have access physicians that specialize in PACS, visit them. An example would be the PACS clinic at Stanford. It also looks like Dartmouth has a PACS Clinic. According to this article, 44 hospitals have launched PACS clinics. I’m not sure how accurate that list is, but it could be a useful tool in knowing where to inquire first.
• If you get into a PACS clinic and are getting quality care, you do not need to look any farther as they can address the complexities of PACS.
• Continue to Step 3 if you do not have access to a PACS clinic.

Step 3- Get tested for Dysautonomia

• Ask your doctor for a tilt table test/autonomic testing to identify forms of Dysautonomia like POTS and Orthostatic Hypotension. It is currently estimated that 50% of PACS patients have a form of Dysautonomia.
• You may also perform a “poor man’s tilt table test” for your own curiosity’s sake. This may be used to demonstrate to your doctor that you need a tilt table test if they were previously hesitant.
• If you have Dysautonomia, go to step 4. If not, proceed to step 5.

Step 4- What to do if you have Dysautonomia

• If you have Dysautonomia, find a specialist near you. Specialists in Dysautonomia are usually Cardiologists or Neurologists. However, not all Cardiologists and Neurologists are familiar with Dysautonomia, so you really have to be sure that they have an interest or specialty in it.
• If you cannot find a specialist near you, get a telemedicine appointment with neurologist Dr. Svetlana Blitshteyn. She will give you recommendations which you share with your primary care doctor who will do that actual prescribing.
• Visit my page of List of all Posts and read the ones that may apply to your situation. There is a lot that can be done aside from the medication that a doctor prescribes.
• Make sure that the physician you choose rules out conditions that exacerbate or mimic POTS and other forms of Dysautonomia. You can check out my article Test to Consider if You Have POTS to learn more about this.

Step 5- What to do if you don’t have Dysautonomia and all of your other tests are normal

• If you haven’t received any diagnoses at this point and debilitating fatigue is one of your chief complaints, you may want to look more into ME/CFS. It is primarily a diagnosis of exclusion, so it can be tricky. However, if you go to the correct places, you can get diagnosed and treated for it.
• I recommend visiting a ME/CFS specialist.
• Make sure that the specialist you see tests for things that exacerbate or mimic ME/CFS. You can check out my article on Tests to Consider if you have ME/CFS to learn more about this.

Step 6- What to do if you’re stuck and cannot get any specialists to work with you

• This is where you have reached dead ends everywhere, have a “clean bill of health”, doctors will not work with you, you can’t get evaluated for ME/CFS, but you still have symptoms that sound like ME/CFS.
• This article from MEAction Network describes the diagnostic criteria of ME/CFS.
• Visit my page List of all posts. Read through any articles that are relevant and apply what you can.
• Visit the Health Rising site. Cort Johnson provides the most up-to-date information on treatments and research for ME/CFS.
• Check out the MEAction Network site. They are an excellent resource on ME/CFS.

Beware of…

Beware of scams. There are many companies and “practitioners” that are full of crap. If it seems sketchy to you, run.

Also beware of bad doctors. See my article on Green Flags and Red Flags for more about this.

Encouragement

This is 100% out of context, but you get my point. Don’t give up on your health. There are many ups and downs through the process of diagnosis, treatment, and navigating the healthcare system. However, there is a lot of hope as advancements in the field of post-viral illnesses continue to grow exponentially. Feel free to e-mail me at dropitlikeitspotsblog@gmail.com if you could use some support/advice/sounding board etc.

Do you have PACS or another type of post-viral illness? What tips do you have for other PACS/post-viral patients?

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.

What is medical gaslighting?

According to ME-Pedia, medical gaslighting is when a “medical professional blames a patient’s illness or symptoms on psychological factors or denies a patient’s illness entirely”. As with common gaslighting, it causes the individual to doubt their own experiences.

Medical gaslighting occurs far too often (especially for women and people of color). According to Myheart.net, 78.5% of POTS patients have been told their symptoms were psychological. In a study by McManimen et al., 89.4% of ME/CFS patients reported experiencing a dismissive attitude from a healthcare professional.

Personal examples of medical gaslighting

• In college, I went to a doctor for sudden, intense fatigue. Before running any tests, she told me I probably was just depressed and offered to prescribe me an anti-depressant. I had mono.
• After several weeks of having GI issues in college, I went to see a Gasteroenterologist. He said, “You just want to get a colonoscopy, don’t you?” His insinuation was that I was an attention-seeker.
• After my tests came back normal early on in my POTS onset, an internal medicine doctor told me I must be “latently depressed”. Whatever the eff that is. I pushed back by explaining that I had mental health struggles in the past and could tell that this was different. The doctor used that information against me and doubled down.

• I wouldn’t necessarily accuse this neurologist I saw of medical gaslighting, but in his list of potential diagnoses “latent depression” was included, which added more fuel to my self-doubt.
• I went to the ER when I was scared by my symptoms several months into POTS onset. The ER doctor was very harsh with me, barking orders and making hurtful accusations. She told me that my issue was psychosomatic and/or I had “latent depression”.
• Earlier this year I went to a Gastroenterologist to address abdominal pain and bloating. He asked me questions in a rapid-fire way that made me feel self-conscious to be bringing up my concerns. I’m aware that there’s a degree of projection on my part because of bad past experiences, but this situation was more than that. This doctor was also a creep, but that’s a story for another day.

My recent experience- the aftermath of medical gaslighting

In this recent experience, I wasn’t gaslighted. However, the pain of my past experiences caused me to not advocate for myself properly.

To make a long story short, I’ve had bladder pain and intermittent hematuria since May. It took two months of pain to finally get diagnosed with kidney stones and a UTI.

Both the kidney stones and UTI presented in an atypical way. Therefore, these were tricky diagnoses and it is reasonable to expect some degree of diagnostic delay. When I finally ended up at a Urologist, he put me on a regimen of ibuprofen because he thought it would be unlikely for tests have any findings. I knew there was something going on, but instead of pushing for a test right away, I agreed to the approach that I felt was wrong. In my mind, if I pushed harder, the doctor may think I am an attention-seeking hypochondriac. I also spent weeks before getting the Urologist referral doubting myself and trying to ignore the pain. I was worried that it was all in my head or that I would be shamed by a doctor.

It sounds ridiculous, doesn’t it? But for those of us who have had experiences with medical gaslighting, this is all too common. Every time I go to the doctor, make an appointment, or even think about going to the doctor, I get intense anxiety. The fear is that I will feel ashamed like I did when I was gaslighted.

Update on my kidney stone/bladder situation

Since the problematic kidney stone is stuck and another sizeable one is still in my kidney, the recommended treatment is a ureteroscopy where the doctor reaches the stones and removes them by going up through the urethra/bladder/ureter. Then, they place a stent in the ureter to allow things to heal up properly.

I have had this procedure done many years ago and it still makes me shudder to think about. The doctor drew a picture to demonstrate the procedure and I almost dry heaved when he drew the stent. That cursed object caused me weeks of horrible pain both while it was in and after it was removed.

Luckily, I may have another option. In the past, my stones were made of uric acid, which means they can be dissolved with an oral medication called potassium citrate. There’s no way to know for sure if I have uric acid stones this time, but I think it is worth a try. I go back in three months for a follow-up CT to see if it worked. If the pain keeps up this way for more than a month, though, I may just opt for the procedure so I can move on. I don’t want to end up waiting three months, get the CT, find out I have to get the procedure anyway, and will have dealt with this pain for 5 months plus however long it takes to recover.

POTS-related side-note about my electrolyte usage and kidney stones

I am discontinuing Saltstick Vitassium, Drip Drop, and Liquid IV. They contain potassium citrate which could be overkill on the massive doses of potassium citrate I’m already taking for the kidney stones. Also, I learned from a test done years ago that excess sodium contributed to past kidney stones. I wondered if this high sodium intake would catch up with me, and now I know. Unless I struggle a lot without it, I do not plan to resume Saltstick Vitassium. I’ve suspected for a while that it isn’t a significant factor for me at this point. I only consume Drip Drop and Liquid IV occasionally, so I plan to resume that sporadic usage (if needed) when the kidney stones are resolved.

How I am coping with medical gaslighting

I see a therapist and was very grateful that I had an appointment when I was in a lot of pain but was anxious about advocating for myself. She used cognitive behavioral therapy techniques (cognitive restructuring) to help me re-frame my anxious thoughts. That gave me the courage to ask to move my Urology follow-up appointment sooner and ask the doctor to investigate further. Although I made missteps in the process, I am proud of myself for eventually doing the right thing. Medical anxiety is still with me (and may always be to some degree), but perhaps I can learn from this and do better for myself in the future.

It’s also helpful to discuss this with others who have experienced medical gaslighting and/or reading their stories. Knowing we’re not alone is healing.

Have you experienced medical gaslighting? How do you cope with it?

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.