Understanding MCAS and POTS

Chronic illnesses need compassion, not shame

I’ve been asked by a few people recently about POTS and MCAS, so I thought I would write a post about their symptoms, potential treatments, what it is like to live with them, and how I deal with my anger, shame, and frustrations at my body, the medical system, and reactions from other people.

I am not a medical professional and none of what is written here is to be considered medical advice. Everyone is different and responds in their own ways. If you think you might have one or both conditions, I hope you can find a medical team that can work with you to address your specific concerns. The following are suggestions on what to discuss with them. Since it isn’t always possible to find medical professionals who believe you and know how to treat chronic illnesses, you might choose to test things out on yourself (which isn’t what I’m advising but is what I’ve done). There are plenty of treatment options that don’t require a prescription. They can, however, produce unwanted and sometimes dangerous side effects, so it is important to be careful and cautious.

Keep detailed notes of what you try, as well as an up-to-date list of all medications and supplements that you can share with a pharmacist, your doctor, or at the Emergency Department if in crisis. There are potential interactions that can make you much worse and some medications/supplements that work better when taken separately. My list includes the name of the medication, the dose, the time when I take it, and the days I take it.

This will be a brief overview and I highly recommend reading more at the links provided. I’m sure I will miss key details, and my experience is mine alone. I’m also going to use analogies that don’t perfectly describe the experience, but I think make it easier to understand. Content warning: I’m going to write about poop and other ways bodies can be “gross”.

Removing shame

Living with a chronic illness is often hard and painful, especially when living in a culture that tries to make us feel shame for being ill, and particularly when we don’t have a diagnosis. I do think that excising this shame is helpful for everyone, as I’ve previously written. I’ve found that the more shame I’ve felt, the less likely I’ve been to seek help or believe it’s possible to feel better. It requires paradoxical thinking, which can be tricky. “No matter what happens with my health, I am worthy of love and respect. I don’t need to be healthy to deserve compassion. I deserve dignity even if my health never improves. My existence makes me valuable, not my productivity. I am worth the effort, time, and money it will take to find treatments to reduce my pain and improve my quality of life. Using medical aids, implementing accommodations, asking for help, and spending time in rest and recovery mode are ways I show myself I am valuable, cherished, and worthy of love and respect” are various mantras I tell myself.

It's hard to develop this belief, especially if you are like me and want proof before believing something is true. I had to just accept that the proof was in my existence and that it doesn’t matter how anyone else treats me. If someone consciously or subconsciously believes I’m less worthy because of my illnesses, I tell myself they are wrong and double down on my compassion and belief in myself.  This belief gives me hope, reduces my suffering, and helps me persevere when life is extra challenging.

If you are reading this and you don’t have a chronic illness, I ask you to think about your own views on illness and how you might be contributing to the shame that chronically ill people in your life feel. Assuming we will get better and saying things like “this too will pass”, “are you better yet”, or “I pray you will get better” are not comforting! I know it can be hard to know what to say. Here are some ideas that would work for me, but of course the person in your life might be different, so ask them if they would appreciate hearing the following:

• I don’t know what to say; this is such a tough challenge you are going through.

• Please let me know if I say anything unhelpful so I can learn and better support you.

• Would it be helpful for me to send you studies or articles about [your condition]?

• I’d like to get together/invite you to a party. What can I do to make it possible and more enjoyable for you? And if you can’t make it, how can we best connect?

• Normal conversations about topics other than health and illness.

• I signed a petition/emailed my political representative to ask for more research/support/etc for [your condition].

• Of course I love you no matter what!

I’d love to read other suggestions in the comments if you have any.

Okay, on to the details of these syndromes.

What are mast cells?

Mast cells are part of the immune system. When there is damage to the body, whether from a cut, burn, hit, fall, infection, or anything else, the mast cells release molecules to start the healing process and to recruit the other necessary cells. There are over 1000 different molecules they can release, including histamine, serotonin, heparin, cytokines, tryptase, and elastase. The inflammation they cause is desirable when we have an acute infection and/or tissue damage as it is part of the healing process.

Mast Cell Activation Syndrome (MCAS)

But for reasons that aren’t fully understood yet, mast cells can also become sensitive and degranulate, which is to say burst, when triggered by relatively benign things. These include: hot and/or cold temperatures, humidity, sunlight, hormonal changes, emotional stress, physical stress, pressure on skin (for example from tight clothing) a large variety of foods, dust, mold, chemicals, perfumes, fillers in medications and supplements, infections…the list of possible triggers is almost endless. And what makes it very difficult to recognize, understand, and diagnose is that a trigger isn’t always a trigger.

We have to imagine that we have a bucket that can hold a limited number of triggers without issue. Each trigger remains in the bucket for a couple of days and then disappears. If we accumulate enough triggers, our bucket overflows and the mast cells start bursting. This leads to a wide range of symptoms including but not limited to: swelling, hives, fatigue, post-nasal drip, tinnitus, ulcers, dental decay, coughing, wheezing, difficulty breathing, blood pressure lability (swings from high to low), fainting or near-fainting, all the above listed gastrointestinal symptoms, decreased libido, painful periods, miscarriages, bone/joint/muscle/nerve pain, joint laxity, cysts, headaches, dysautonomia including POTS, weakness, brain fog, restless legs, sleep apnea, sleep paralysis, nightmares, depression, anxiety, mood lability, irritability, thyroid issues, glucose issues, anemia, easy bruising, impaired healing, and increased susceptibility to infections. See this paper for the full list.

Anaphylaxis is a continuous danger, so it makes sense to keep Benadryl and an EpiPen at hand at all times.

Diagnosing MCAS

Although it is estimated that 17% of the population has MCAS to some degree, it is very difficult to diagnose, especially as doctors differ in what they view as necessary for a diagnosis. The paper I linked to above discusses these challenges. I am still waiting for an appointment with an immunologist for an official diagnosis, but since my cardiologist suspects it is the root cause of my POTS and I respond to the treatments I’ve been able to try, I am comfortable with claiming the diagnosis.

If you’ve had many bizarre, idiopathic symptoms in a number of body systems over the years, and/or treatment resistant illnesses such as depression or anxiety, I would consider investigating if MCAS could explain your experiences. You could print off that paper, highlight all the symptoms you’ve experienced, and ask your medical provider if you can get referred to a mast cell specialist (not all immunologists are familiar with MCAS) and trial treatments in the meantime.

Treating MCAS

A large part of managing MCAS is avoiding triggers enough to keep the bucket from overfilling. This will probably include dietary changes, although the goal typically is to find treatments that allow you to eat a wider variety of foods. It isn’t unheard of for people to be limited to just a handful of different foods, which isn’t ideal for obtaining adequate nutrition, but if eating a specific food leads to anaphylaxis, you will understandably want to avoid it.

Keeping an air purifier running in your home and workplace (if you are able to work) can reduce many triggers including dust, pet dander, mold, airborne viruses, odours, smoke, and chemicals in the air, depending on the filters used.

There are also many medications and supplements that can stabilize mast cells and/or block the release of their molecules. From what I understand, the condition will always have to be managed, even when taking mast stabilizers. I think of them as decreasing the amount of space my triggers take in the bucket, not eliminating the need for a bucket altogether. Not all mast stabilizers work for everyone, which adds a challenge to finding effective treatments. For example, Aspirin works for many people, but not in anyone who is sensitive to salicylates. For them, it does the opposite and triggers the mast cells. Flavonoids such as quercetin and luteolin work very well for many people, but not for people who have a “slow” COMT gene. In these people, the flavonoids potentially do more bad than good as they accumulate and possibly increase susceptibility to developing cancer.

Another wrinkle is that it is possible a supplement or drug will work, but your mast cells react to the other ingredients in the pill or capsule. Many people with MCAS require their medications to be made without the triggering ingredients by a compounding pharmacist, which is expensive and often not paid for by insurance. A compounding pharmacist might also be needed to make smaller doses as you may need to slowly acclimate your mast cells to the new medication.

Some treatments require an adequate amount of vitamins and/or minerals available in your body to work. For example, the flavonoids I discussed above require folate to be metabolized, so a person with a folate deficiency might think flavonoids don’t work for them. It’s important to make sure our bodies have the proper amount of minerals and vitamins for cellular processes to work, although it can be difficult and expensive to figure out if we have deficiencies. This document and protocol has information on optimal levels and the best way to test for them.

When introducing new medications or supplements, it can be prudent to start with a small dose and only one at a time so that you can determine if you tolerate it. Dr. Ric Arseneau has many great resources on his website, including directions for how to use antihistamines to improve MCAS. He advises his patients to start with a quarter of a pill of one medication to see if there are any negative side effects, then increase the dose until they’ve found the best dose for that medication. They are then to stop that medication, and do the same with the second, followed by the third. Once his patient knows they are safe to take all three, they then take them all every day. As you can see, it is a long process and patience is required.

It’s also important to know that the severity of MCAS can change over time and no two people will react the same way to the same triggers. I look back and wonder how my life might have been different if I had known about MCAS earlier, when I had milder symptoms. I bet I could have significantly reduced my anxiety and depression over the years. I now find having a curious attitude and thinking of myself as a detective looking for clues in research, my body, and the experiences of others to decide what treatments to try and if they seem helpful. Having the attitude of a detective is also helpful to limit my own gaslighting and shame.

Non-prescription stabilizers and blockers

Unless otherwise linked, this is the reference I used for these non-prescription medications and supplements:

• Luteolin

• Quercetin

• EGCG (found in green tea)

• Silymarin (found in milk thistle)

• Ellagic acid (found in fruits and nuts such as raspberries, strawberries and walnuts)

• Resveratrol (found in grapes)

• Parthenolide (found in feverfew)

• H1 antihistamines (such as cetirizine)

• H2 antihistamines (such as famotidine)

• Acetylsalicylic acid (Aspirin)

• Vitamin C

• DAO

Prescription stabilizers and blockers

• Montelukast (Singulair)

• Cromolyn sodium

• Ketotifen

• Low Dose Naltrexone (LDN)

• Calcium channel blockers (CCBs) – no studies that I could find, but my cardiologist suggested we try diltiazem to treat my POTS since in theory, CCBs should stabilize mast cells as they require calcium to degranulate. It was true for me.

What is POTS?

POTS stands for Postural Orthostatic Tachycardia Syndrome, which means when you are standing (orthostatic) you have a racing heart (tachycardia) and other symptoms (syndrome). It can be incredibly debilitating, but like MCAS, there is a range of severity that can change over time. I’ve never liked standing and since my teenage years I’ve frequently had to hold onto the wall when I stand up in the morning due to dizziness and losing my vision. This was annoying, but my doctors were never concerned when I mentioned it, so I assumed there was nothing to be done and I just dealt with it. But after my COVID infection, I got much, much worse. I once again wonder what my life would have been like if I had received treatment for my (presumed) mild POTS as a teenager.

The criteria for a POTS diagnosis is the following:

• Heart rate increases over 30bpm (40bpm for teenagers) when moving from lying down to a standing position after 10 minutes.

• Blood pressure does not drop upon standing (this would indicated a different type of dysautonomia)

• Other symptoms when standing that go away when lying down, including fatigue, weakness, blurred vision, headaches, palpitations, dizziness, light-headedness

• No other explanation for the tachycardia

Previously, patients required a tilt table test for diagnosis, but that has changed – at least in Canada. A ten-minute standing test or NASA Lean Test is now sufficient. This paper in the Canadian Medical Association Journal has all the information a primary care physician needs to make a diagnosis. My doctor still referred me to a cardiologist who is a POTS expert, but after reading that document, she ordered all the necessary tests to rule out other conditions, which meant my cardiologist had all the data she needed for a diagnosis (after getting an extensive medical history from me).

Since doctor visits are often limited to 15 minutes, you may want to do your own standing test at home and bring the results to your doctor. The Bateman Horne Center has a printout with instructions, pictures, and a chart to fill out. You will need a blood pressure monitor and a second person to help with timing and to observe changes, such as blood pooling in your feet. This test can be distressing and dangerous as it can lead to fainting, so if you choose to do it, please don’t feel the need to stay standing for the full 10 minutes if you feel quite unwell. You might also consider video record it and/or take before and after pictures.

When I did this test the first time, I didn’t think I had POTS as I had never fainted. I learned that POTS can be an explanation for breathing difficulties, so I thought I would do it to rule it out. Instead, my heart rate increased by 56 beats per minute and my blood pressure skyrocketed. I felt terrible for the rest of the night, but it is what finally put me on a path to treatments and improved quality of life. I will forever be grateful I did this test at home.

Non-pharmacological interventions (NPIs)

It is common to start treatments with non-pharmacological interventions first. The thing about treating POTS that is tricky, is that the high heart rate only happens when upright – you don’t want to take medications that will put you into bradycardia (low heart rate) or extremely low blood pressure while lying down.

POTS can be caused by decreased blood volume, called hypovolemia. This is why almost all POTS patients are first advised to drink more fluids and add sodium to their diet. Sodium is required for the body to keep the extra fluid in the blood, rather than quickly pee it out. For example, I add half a teaspoon of salt to every 1.2L pot of herbal tea I make. I drink a full pot of tea (that I made the night before) upon waking, followed by a cup of coffee and a smoothie (with salt) for breakfast, followed by another pot of tea. I am barely functional with significant brain fog and headaches without all the salt and hydration. But not everyone has hypovolemia, so this might not be good for everyone.

With POTS, a person’s heart isn’t able to pump its blood properly and gravity works to keep the blood below the heart. This is why your feet and hands can look purple – blood that should be in the head is pooled there instead! Compression clothing can help push the blood back up to the heart so it doesn’t have to work as hard. Any Spanx-type of clothing can be used if you don’t have a prescription, but medical-grade leggings are probably best.

Using a shower chair has been incredibly helpful for me - I could barely shower without it, literally goings months between showers. I also have a collapsible stool I bring with me to appointments so I can elevate my feet and/or sit if there aren’t any chairs. Dysautnomia International has cards you can print and laminate to show people if you need a seat, on public transit for example. This is also a reminder to the general public that not all disabilities are visible and if a person says they need to sit and you don’t, please give them your chair without questions!

My cardiologist advised me to elevate the head of my bed by approximately 4 inches by putting lifts under the bed feet. Using extra pillows doesn’t cut it! She discusses the reasons for elevating the bed at 22:44 in this video (the whole presentation is worth watching).

Finally, exercise can be helpful as contracting muscles can help the heart pump the blood back up. Unfortunately, many people with POTS are intolerant to exercise as it increases their POTS symptoms. In a large subset of POTS patients, exercise can also cause post exertional malaise (PEM) or symptom exacerbation (PESE). If this happens, too much exertion of any kind – physical, mental, emotional, or social – can damage the body (mitochondria) and lower one’s baseline. This video explains PEM/PESE and if you or someone you know experiences this, it’s a good video to watch to understand a condition that seems so counterintuitive. Exercise is healthy, except when it’s dangerous.

Even if a POTS patient doesn’t experience PEM, being upright is what causes them problems, so they will likely need to start with exercises they can do while horizontal or sitting, such as swimming, using a rowing machine, riding a (stationary) bike, or weight training that can be done lying down or while sitting. Even just squeezing muscles helps, but for some people, even that is too much exertion.

Medications for POTS

It can require patience and trialling many medications before find one that works for you. Most doctors will start with beta blockers, but they aren’t tolerated well by many, especially in people with MCAS. The beta blocker I tried gave me such bad acid reflux in just two months that my dentist was thoroughly alarmed at the amount of tooth decay that had developed between my 6 month visits. It was great for my heart, but terrible for my teeth and esophagus, so I had to try something else.

Medications that might work will either lower the heart rate (heart rate inhibitors), “squeeze” the blood vessels (vasoconstrictors), decrease the sympathetic nervous system activation (sympatholytic drugs), or increase blood volume (blood volume expanders). Common examples include:

• Propranolol

• Ivabradine

• Pyridostigmine

• Midodrine

• Clonidine

• Fludrocortisone

The two prescription medications I take aren’t on the list in the paper I linked to above, but work well for me. They are diltiazem, a calcium channel blocker, and low dose naltrexone (LDN). I’m still working my way up to my ideal LDN dose and I hope to experience continued improvements. After 3 days of taking diltiazem, I was able to stand long enough to make a pour over coffee - amazing! With the LDN I am able to (mostly) keep my heart rate below 120bpm when I walk on flat surfaces, although my pace is quite slow. Still, a year ago it would go up to 160bpm while walking, so this is a vast improvement. I am also able to sit and stand for longer periods of time before needing to lie down or put my feet up to help get more blood to my brain. I am also happier, less anxious and irritable, and more energetic. I also take multiple supplements and OTC medications. Taking appropriate medications has improved my quality of life tremendously.

What causes POTS?

There are a variety of contributing factors to developing POTS and any one person can have any combination. This is why it can be difficult to figure out the best medications to use. Some of the factors include:

• Low blood volume

• Hypermobility

• MCAS

• Autoantibodies

• Low stroke volume

• Sympathetic nervous system over activation

• Small fibre neuropathy

It commonly begins or worsens after a viral infection, which is why the number of people affected have exploded since the beginning of COVID. Certain types of hypermobility, and MCAS flares, can cause the blood vessels to droop, which makes it difficult to impossible for them to constrict enough to push the blood back up.

A few more considerations for MCAS, POTS, and possibly other chronic illnesses                                                     

Moving easily between fight or flight and rest and digest – regulating the nervous system

Many chronic illnesses can put us into a stress response, which “turns on” the sympathetic side of the nervous system. This side of the nervous system is good when it helps us be active and fight stressors, but good health requires it to be able to switch to the parasympathetic side so that we can rest, digest our food, sleep well, and recover. This is also one of the potential issues contributing to POTS. We aren’t in total control of switching to the parasympathetic side, but there are some things we can test out and incorporate into our daily lives.

Breathing exercises

Breathing in stimulates the sympathetic nervous system and breathing out stimulates the parasympathetic nervous system. If you wear a heart rate monitor, you can see this as your heart rate increases during the inhale and decreases on the exhale. So, exhaling longer than inhaling can be helpful. I have an HIIT timer app on my phone that I programmed with the number of seconds I want to inhale for the high intensity interval, say 4, and the number of seconds I want to exhale for the low intensity interval, say 8, and then choose a number of reps, say 15.

This helped me so much in the beginning to get used to the timing as I could just follow the beeps rather than focusing on counting, which can be an issue due to racing thoughts and/or brain fog. Note: for people who experience PEM, breathing exercises can use too much energy and lead to crashes and ill health. Pay attention to how you feel and stop if these exercises make you feel worse rather than better!

The vagus nerve runs from the brain down to the digestive system and also impacts all the organs it passes along the way. Stimulating the vagus nerve through massage, diaphragmatic breathing, or vibrations, including singing and humming, can be helpful, which explains why singing and humming can feel good and be a helpful stim!

When we breathe using our diaphragm, the breaths slightly move our organs and our vagus nerve, so it is better to breathe this way if you can do it without pain. Take a deep breath with your diaphragm. If you feel your face, neck, shoulders, upper back, legs, butt, toes, hands – basically any muscle that isn’t your diaphragm – tense as you breathe, you could be doing more harm than good with these deep breaths. I would suggest sticking to shallow breathing for now and work with a physio or exercise expert to learn how to activate your diaphragm on its own. Using all the other muscles can lead to pain, including headaches. This is common in people with hypermobility.

Creating safety

Our sympathetic nervous system activates when we are in danger, so we conversely need to be safe to move into the parasympathetic system. This is, in part, why it is important to replace any feelings of shame we might have with compassion. Shame isn’t safe. Compassion is. We can’t always control how safe our environment is and life brings us many crises. But we can try to make our thoughts and feelings safe for us. It also might mean we need to process trauma any trauma we have experienced.

It’s also important to remove ourselves from stressful and/or over-stimulating environments when possible and use accommodations to reduce stressors and triggers. For example, the lighting in doctors’ offices often triggers migraine in me, so I wear my sunglasses. One doctor offered to dim the lights for me after asking why I kept my sunglasses on, which I really appreciated! I’ve been teased in the past for wearing sunglasses indoors or at night. Since I didn’t understand why I instinctually wore them, I often felt embarrassed. But now I know it helps my health and keeps me safe, so I don’t let anyone’s attempt to shame me work. Note: please don’t make fun of people who are “weird”!

As an aside, many people, doctors included, seem to think that psychological therapy is the best treatment for many physical illnesses, including MCAS and POTS. And while I think it can be helpful to work through trauma, shame, and grief, I made the biggest improvements both physically and psychologically when I started medications that stabilized my mast cells. CBT can’t train my mast cells to not react to venegar and canned tuna. But LDN did. I would be skeptical of anyone who thinks you can train yourself well with only your thoughts.

Helping out the lymphatic system

The lymphatic system is often overlooked by medical professionals, but if it is clogged and not flowing well, it can be hard to get well. It can, in part, be thought of as the body’s plumbing system as it transports toxins and waste products from the body so they can be removed safely. This happens in the blood as well, but the lymphatic system is able to take in larger particles that can’t directly enter the blood. These particles are broken down within the lymph system and then deposited into the subclavian veins, which are located just below the collarbones.  Inflammation causes a build-up of waste byproducts, and chronic illnesses often involve excess inflammation, so this is a system we want working to the best of its ability.

One challenge is that unlike blood, which has the heart to pump it around the body, the lymph system has no pump, so it often needs our help. Gentle massage, movement, and contracting our muscles get it moving.

Dr. Perry Nickleston has so many resources on his social media pages and website – he’s a great place for more detailed information. He created a quick and easy ritual called “The Big 6” that can be done everyday to maintain the lymph system’s health.

This video explains it, but basically you massage and tap the following areas in order: above and below the collar bones, both sides of the neck, both arm pits, the belly button area, both sides of the groin, and the back of both knees. You can follow it up with bouncing on your toes and shaking your arms and legs if able. The order is very important because you want to break up any bottlenecks going from the end point to the start point so the “pipes” don’t burst during the massage and release the build up of waste products into your body. It’s also important to stay hydrated as without enough fluids, the lymph gets sludgier and stickier and harder to move.

Faecal loading

Twitter/X is a cesspool in many ways, but there are also many researchers, clinicians, and fellow patients sharing so much information. Specifically concerning digestive issues, I recommend following Dr. Rebecca Ryan, a gastroenterologist from Australia who is very generous with explaining problems, particularly the issue of faecal loading. When we have POTS and/or MCAS plus gastro issues such as diarrhea, constipation, bloating, painful gas, or acid reflux, it can be because we are literally full of shit that is preventing the stomach from digesting food and moving it along the digestive tract.

These hardened poops are visible on x-rays, if you can convince your doctor to order one, as she described in this thread. If a person has POTS due to low blood volume, the body might take water from poop in the colon, which hardens the poop and leads to faecal loading. Drinking enough fluids is extra helpful as faecal loading can cause an MCAS reaction, which can worsen POTS, which can worsen faecal loading. We need to stop this feedback loop from continuing. Dr. Ryan explains treatments options and more details on her account, so I highly recommend reading her tweets and replies as there is a goldmine of information there.

Talking with doctors and other medical professionals

Most doctors are not well educated on MCAS or POTS and it can be frustrating to deal with them as most routine tests come back with normal results. They are often happy to say something like, “everything looks great! You are healthy!” or maybe “you are worrying too much and that’s making you sick. Here’s a prescription for an antidepressant”. If you haven’t been in the position of being ill without a diagnosis, it’s hard to imagine that normal test results are deflating, but that’s often the case. Before I learned about POTS and MCAS, I was desperate for an abnormal test result that would indicate what the problem was and how to solve it. I didn’t want to be sick as some assumed; I already was very ill. I wanted a treatment plan so that I could stop being sick. I got so angry when my doctors stopped looking for answers as my medical needs were not being taken care of.

I don’t know about every jurisdiction in the world, but in Ontario, Canada, family doctors (our primary care physicians) are underpaid. They also do not get paid time to keep up with new research. When I learned that, I became less angry at my doctors and directed my anger instead at my provincial government and the medical schools that don’t thoroughly teach these illnesses. I developed more compassion for my doctors, and tried to think of ways I could convince them to not give up on me. Here is a script I came up with, a pared down version I used successfully with my previous doctor in Toronto when she came back from maternity leave:

Doctor: Hello, what can I do for you today?

Me: big breath...so, as you know, we’ve done all the regular bloodwork and the results have come back normal, which is good to rule out common diseases, but I am still feeling quite ill. This is very frustrating for me, and I appreciate that it also must be frustrating for you to not have the answers either. So, I guess I want to start off by saying that I am trusting that you want to help me get well and that you trust me that I want to get well. As much as I like you, I don’t want to keep coming back to see you every couple of months!

Doctor: Yes, I definitely want you to get better.

Me: I also understand that you don’t get paid time to do any research, which is terrible and something I’ve written to my MPP about. I was hoping though, that if I bring you relevant research, you can read it over during our appointments and decide if it makes sense for us to try the potential treatments listed.

Doctor: First, thank you for saying that and writing to your MPP because it really is frustrating, although of course mostly for you. I would be happy to read research you bring in. Do you have something with you?

Me: Yes! I have this paper on POTS that lists how it can be diagnosed, as well as potential treatments. I’ve already increased my fluid and salt intake and that has helped me, so I think it’s worth investigating further.

Or

Yes! I’ve printed out this paper on how to diagnose MCAS. I’ve highlighted all the weird symptoms I’ve experienced - MCAS would really explain a lot. That paper doesn’t have treatments listed, so I printed off this medication list from The Mast Cell Disease Society. I particularly want to discuss if I should get an EpiPen, especially since I have experienced lip swelling.

Doctor: Okay, wow. I’m not well versed in POTS/MCAS, so I’d like to carefully read over these printouts on my own time. (Checks calendar) Can we have a follow up call on [day of week] to further discuss our options?

For doctors who aren’t so receptive and refuse further tests, I’ve read that asking them to document their refusal in your chart can be very motivating for them as it opens the door for future litigation. It can be hard to stand up for yourself, but remember that you are worth the time and resources it takes to find out if your quality of life can be improved.

I hope this is helpful for anyone who suspects they might have POTS and/or MCAS. I also hope it’s helpful for friends and family members of people with these conditions to understand what it’s like for us. It can undoubtedly be challenging for you to witness our pain and adjust to our changing requirements in food, rest, activity, etc. We also might have a lot of anger and irritability that is unpleasant to be around. But, hopefully by learning about our experiences, you can give us extra compassion and support. It can make a real difference.