What I Wish I Knew at the Beginning of My POTS Journey
Hi folks! In lieu of Dysautonomia Awareness Month, I wanted to write a little more about what Postural Orthostatic Tachycardia Syndrome (POTS) is, my personal experience, what works for me, and affirmations for this month!
What is Postural Orthostatic Tachycardia Syndrome?
Postural orthostatic tachycardia syndrome (POTS) is a condition that causes symptoms when you transition from lying down to standing up. This can include a fast heart rate, dizziness, chest pain, and fatigue. There is no cure for POTS but several treatments and lifestyle changes can help manage the daily symptoms.
Normally, your body’s autonomic nervous system balances your heart rate and blood pressure to keep your blood flowing at a healthy pace, no matter what position your body is in. If you have POTS, your body can’t coordinate the simultaneous act of blood vessel constriction (squeezing) and heart rate response. This means that your body can’t keep your blood pressure steady and stable. This causes a variety of symptoms, which can include:
Dizziness and lightheadedness
Fatigue
Brain fog (difficulty concentrating or remembering things)
Fainting or near fainting
Chest pain
Nausea (or vomiting)
Shakiness
Excessive sweating
Difficulties regulating temperature, heat and cold intolerance
Bloating
Diarrhea and other GI issues
Feeling nervous or on edge
Disrupted sleep and insomnia (especially due to symptoms)
Headaches
Shortness of breath
Pale face and discoloration of hands or feet (often purple or blue-ish)
A little about my POTS journey
I currently live with Long Covid and have secondary POTS as a result of this chronic illness. I had chronic migraines starting as a young child and was put on Propranolol to manage my daily headaches. Coincidentally, this beta-blocker is also commonly used for managing POTS. I suspect that since I was already taking Propranolol daily when I got COVID, it began helping with my POTS due to Long Covid and I probably didn’t even notice.
I have frequently been dismissed by doctors, nurses, other medical professionals and up until this year, I was giving up on getting a diagnosis. I have seen Emergency Care providers who dismiss my POTS as panic attacks or anxiety. I have often been told that if I just drink more water, rest more, or lose weight, my symptoms will go away. I have even had quite a few Cardiologists tell me that nothing was wrong and I just needed to see a therapist!
I often plan my days around my symptoms and flare ups. I don’t usually shower in the morning because my POTS symptoms are worse when I first wake up. I often do not go out in the middle of the day or have to cancel plans, depending on the weather. I usually avoid activities in the sun, buildings with lots of stairs, or bus stops without benches. It’s so incredibly frustrating to have to interact with a world that is not set up for chronically ill and disabled folks.
I used to play sports in high school and as a child and was very active. Basketball, volleyball, swimming, biking, kayaking, hiking, and rock climbing– just to name a few. That all changed when I contracted COVID in 2020 and developed Long Covid (and POTS and MCAS as a result). It has been extremely hard and I often grieve for the body I once had.
I was misdiagnosed with Fibromyalgia for several years, which was more recently recognized as hEDS (hypermobile Ehler’s Danlos Syndrome) and there is a pretty large overlap between EDS and POTS. I also live with MCAS (Mast Cell Activation Syndrome) as a result of Long Covid. Most of the time, at least one chronic illness is flaring up. They all interact with each other and often when one gets better, another gets worse. I feel very fortunate to have found such a thorough and caring Primary Care Provider who finally diagnosed me with POTS and hEDS a few months ago. She referred me to a wonderful Cardiologist who was finally able to confirm that I do in fact have POTS. I know, shocker.
It is traumatizing to consistently be dismissed and told I am exaggerating my symptoms. It is extremely enraging, unfair, and unprofessional. I am often told that I am just too young to be dealing with chronic illness. As if my age automatically makes me unable to be disabled.
Below are some affirmations/ reminders that have been helpful for me in these situations and are good reminders for Dysautonomia Awareness Month.
Reminders for Dysautonomia Awareness Month
You do not know who has Dysautonomia just by looking at them.
Some people often think that you can tell who is disabled or chronically ill by looking at them but this is in fact an ableist sentiment. Dysautonomia is an invisible disability!
Dysautonomia does not just mean my heart rate is a little fast.
People sometimes assume that POTS or dysautonomia is just getting a little dizzy or having a fast heart rate. It can come with a plethora of symptoms and often affect every organ in the body.
You can still have Dysautonomia and not be diagnosed.
Many of us are not diagnosed due to lack of health insurance, discrimination and biases, medical racism, fatphobia, queer phobia, and ageism. And folks can go their whole lives without receiving a diagnosis.
Dysautonomia affects all people of all genders, races, sizes, and ages.
Despite the majority of diagnosed folks seeming to be white and cis women, POTS and dysautonomia can affect every race, sex, gender, size, age, belief, background, religion, socioeconomic class, etc.
Dysautonomia is not just anxiety or all in your head.
Some healthcare providers and other folks seem to associate POTS with anxiety or mental health conditions. Maybe because it is an invisible disability, but either way– it simply is inaccurate and ableist!
Dysautonomic folks are worthy of support and accommodation.
YES!! Yours and your loved ones’ needs with dysautonomia matter just as much as anyone else!
Things that can help
Unfortunately, there’s no cure for POTS. Instead, healthcare providers use several strategies to manage the symptoms of POTS. Treatment is highly individualized based on your symptoms and what works best for you.
Below is a list of things that I do to manage my POTS symptoms (remember each person is different!):
Compression Garments
Medical compression socks (I wear mine everyday, all the time)
Compression gloves and sleeves
Abdominal binder (helps push blood flow out of a larger area than compression socks/ sleeves)
Sleep, rest, and pacing
Sitting up slowly and waiting several minutes before standing after lying down (dangling my feet off the edge of the bed helps!)
Raising the head of my bed about 10-inches (helps with the transition after lying down)
Making sure I get enough sleep
Following a consistent sleep schedule
Structured rest
Pacing myself when doing things that require lots of walking etc.
Slowly increasing exercise and physical therapy exercises (swimming is especially helpful)
Limiting long periods of standing
Monitoring pulse and blood pressure (I wear a smart watch and use a blood pressure cuff, as well as a pulse oximeter)
Dietary changes
Increasing hydration (I carry a water bottle everywhere)
Increasing salt intake (I carry salt packets with me, especially for hot days)
Making sure to eat enough (especially breakfast). Spikes in blood sugar don’t help!
Gluten-free or anti-inflammatory diet (I follow a low-histamine diet)
Avoiding alcohol
Medications
Beta-blockers (may reduce upright tachycardia)
Nausea (and motion sickness) medication
Heat and cold intolerance
Cool showers
Using a shower stool
Facing my chest away from the shower head (especially with warm/ hot showers)
Avoiding heat and hot weather as much as possible
Remember that each individual with dysautonomia and POTS is unique and a lot of symptom management is trial and error.
Thank you so much for reading! I hope this was informative and helpful. Feel free to contact me if you would like to book a peer support consultation or are interested in learning more about my chef and nutrition services :)
You can also find me on Instagram and Substack for more disability justice content, chronic illness stories, dietary restriction friendly recipes and more!
Sources include:
Postural Orthostatic Tachycardia Syndrome by Cleveland Clinic, 2022
Postural Orthostatic Tachycardia Syndrome by John Hopkins Medicine
Low-Histamine Diet: How do I get started & what foods are safe?
Do you need to start following a low-histamine diet? This step-by-step guide will provide some helpful steps for getting started with a low-histamine diet and what foods are safe and what foods should be avoided or reduced.
It can seem extremely overwhelming at first. A low-histamine diet can be a necessity for those of us with Mast Cell disease and MCAS (Mast Cell Activation Syndrome). Many people with ME/CFS and Long Covid also have symptoms of histamine intolerance. When your body produces too much histamine, the high histamine levels in certain foods can cause symptom flares. Some foods are lower in histamine themselves, but they can cause a release of histamine in your body (something called a histamine inhibitor; citrus fruits are an example of this) which can cause worsening symptoms.
Some helpful tips:
Start with an Elimination Diet: Remove high-histamine foods for approximately four weeks. Monitor your symptoms!
Identify Your Threshold: After a successful elimination phase, reintroduce foods gradually to determine personal tolerance levels. I would recommend only one new food component or ingredient per meal, at the very least! You won’t be able to tell what is affecting you if you add everything back at once.
Picture your threshold like a bucket: unlike a true allergy, things are not black and white with histamine intolerance or reactions related to MCAS etc. The more high-histamine or triggering foods you eat, the faster your ‘histamine bucket’ overflows. Sometimes I don’t have reactions until hours or days later because of this.
Maintain a Food Diary: Track everything you eat and any symptoms to identify triggers and patterns.
If you are in eating disorder recovery or struggle with these behaviors, I know this step is extremely daunting. I would suggest not writing down amounts of food or only the specifics that are necessary. Such as: I had scrambled eggs and oatmeal with apples and maple syrup for breakfast. Keep it simple! And if this is too much emotionally, that's okay too.
Emphasize Freshness: Choose fresh ingredients. Avoid canned, cured, or fermented foods and freeze your leftovers. I like to go grocery shopping for fruit and vegetables every few days (although I know this is not accessible to everyone).
Low Histamine Foods List - The Complete List:
Proteins:
Fresh meat (cooled, frozen or fresh)
Chicken, duck, turkey (preferably fresh or frozen)
Certain frozen or fresh fish (hake, trout, plaice, cod, haddock)
Eggs (fully cooked)
Avoid or reduce:
Soy (tofu, edamame, miso, tempeh)
Smoked and cured meat products (salami, ham, pepperoni, bacon, lunch meats, sausages)
Shellfish
Dairy:
Cow’s milk
Fresh cheese (cream cheese, cottage cheese, fresh mozzarella, ricotta)
Diary substitutes
Coconut milk, rice milk, oat milk, almond milk (not canned)
Goat’s milk/cheese, sheep’s milk/cheese (fresh cheeses!)
Avoid or reduce:
Aged cheeses (cheddar, gouda, blue cheese, parmesan)
Buttermilk, Kiefer, sour cream
Yogurt
Ice cream
Most cow milk products
Starches:
Rice (and rice noodles, rice crackers, rice crisp bread, rice flour)
Oats, quinoa, millet, arrowroot, amaranth
Potatoes, sweet potatoes
Millet flour, oat flour, coconut starch, tapioca starch, (some individuals can tolerate almond flour)
Avoid or reduce:
Gluten
Breads with yeast
Beans and legumes in general (dried beans cooked after they are soaked overnight can be well tolerated by some)
Fruits:
Apples, pears, peaches, nectarines
Mangos
Blackberries, raspberries, blueberries
Pomegranates, figs, grapes
Watermelon, honeydew, cantaloupe
Juice (apple juice is a good option)
Avoid or reduce:
Strawberries
Papaya, pineapples, bananas, kiwis, dragon fruit, avocados
Cherries, plums
Citrus (lemons, oranges, grapefruit, lime)
Overripe or stored fruits (as they increase in histamine as they ripen)
Dried fruits (raisins, dates, dried mango)
Vegetables:
Cauliflower, broccoli, cabbage, asparagus
Cucumbers, zucchini, squash, pumpkin
Carrots, celery, bok choy
Beets
Peas, green beans
Arugula, lettuce, kale
Ginger
Leeks, garlic (garlic is high-FODMAP)
Avoid or reduce:
Tomatoes, bell peppers, eggplant
Onions (scallions are low histamine)
Spinach
Mushrooms
Fermented vegetables (sauerkraut, kimchi, pickles)
Nuts, Seeds:
Pumpkin seeds, sunflower seeds
Flax, chia
Brazil nuts, pine nuts
Whether nuts need to be avoided on a low histamine diet seem to really vary based on individual tolerance and the type of nut. Different people have different thoughts on whether some nuts and seeds are truly low-histamine.
Avoid or reduce:
Peanuts (and peanut butter)
Macadamia, cashews, almonds, pistachios, pecans, walnuts (can be tolerated by some)
Herbs, Seasonings, Oils, etc:
Olive oil, avocado oil, coconut oil
Maple syrup, agave, honey, brown sugar
Coconut aminos (some tolerate it, some don’t)
Basil, parsley, cilantro, thyme, rosemary, tarragon and oregano (fresh herbs preferred)
Avoid or reduce:
Cinnamon, anise, cloves, nutmeg, sassafras, allspice
Chili powder, curry, hot peppers, peppercorns, cayenne
Bay leaves, paprika, mustard
Canola oil, soybean oil
Soy sauce
Fermented or preserved sauces or sauces with vinegar (jams, ketchup, bottled dressings)
Others to avoid or reduce:
Chocolate and cocoa products
Caffeine: coffee, energy drinks, caffeinated tea (green tea seems to be the most well tolerated if adding back in)
Fermented or preserved foods (canning, smoking, and pickling can increase histamine levels)
Preservatives and additives (artificial colors, xanthan gum, sulfites, carrageenan, lecithin, MSG)
Leftover food (freeze your leftovers!)
Alcoholic beverages
Be kind to yourself throughout this process. Medically necessary diets are exhausting and take patience to identify your threshold and triggers! You’re not alone.
Feel free to contact me if you’d like support with planning low-histamine meals or are looking for peer-support from someone who gets it. You got this!
Sources include:
Low Histamine Diet- The Chronic Fatigue (ME/CFS) Clinic at Johns Hopkins, Revised 2025
Food Intolerances, Histamine, FODMAPs & IBS Guide; online app by BALIZA
Maintz L, Novak N: Histamine and Histamine intolerance, American Journal of Clinical Nutrition, 2007
Melbourne Functional Medicine: Low Histamine Food Guide, Updated 2024
Choosing Myself Over My Eating Disorder: Why Should I Even Want To Recover?
I really want to choose myself. I deserve to choose myself.
My one year anniversary since fleeing domestic violence is coming up and I’ve been reflecting. What do I wish I had been told when I was first struggling with an eating disorder? Why should I even want to recover? Is relapse a natural part of recovery?
When I was first recovering, I wished my mental health providers and parents had approached things from a gentle place. I wish someone had said “It’s okay that you binged last night. Your body was so hungry and it makes sense. If you need to binge- do that” instead of shaming me and saying “Stop overreacting and just eat. Your ED is telling you that, not you”. But it's just not that simple. It never is.
As people with eating disorders, we are often stigmatized, misunderstood and denied care. Especially folks who are disabled, 2SLGBTQIA+, BIPOC, fat, low-income, or otherwise marginalized.
The eating disorder Partial Hospitalization Program (PHP) I went to helped me to eat consistently and be weight-stable for about 6 months, but I never truly processed things. I never really felt like I had control, even when I was eating consistently. I didn’t truly learn what it means to have an eating disorder, how relapse is natural and necessary, and why I struggle in the first place.
So much of my life, these behaviors were legitimately the only thing in my control. Even in high school, I didn’t have agency over what I ate but I had control over how much. I was so hungry all the time and it makes sense that I have lots of urges to binge, eat my comfort foods or restrict myself. I feel like I have been starving for my whole life, not just because I was starving for enough nutrients, but because I was starving for love, connection and peace.
Every day, choosing yourself over your eating disorder, is a battle. It’s exhausting. You deserve to have an identity outside of your eating disorder. You deserve to choose yourself too.
Here Are Some Reasons To Recover That I Have Found Helpful:
I want to have an identity outside of my ED.
I want to enjoy food and not plan my entire life around it.
I want to travel to new places and try new foods.
I want to be able to enjoy going out with my friends.
Sweets and chips are yummy!
I want to watch cooking shows again without getting anxious.
I want to be able to allow people to cook for me and feel relief, rather than anxiety.
I don’t want to have to avoid mirrors or be afraid of taking photos.
I want to have real energy, rather than the fake, stress response ‘energy’ from my ED.
I want to enjoy cooking again.
I want to enjoy popcorn at the movies.
I want to tune out when diet culture conversations come up, instead of being overly defensive or activated
I want to enjoy buffets.
I want to stay out late and order food with friends instead of needing to go home to have my safe, planned evening meal.
I want to enjoy birthdays and holidays.
I want to find my body’s natural, set point weight range and accept it, instead of spending my life fighting it.
I want to try and enjoy new foods, without foods being my main source of joy, purpose and fulfilment, instead food becoming just that: food.
I want to feel just as okay going to bed after a day of rest as after a day of activity.
I want to actually eat the cookies I baked.
I want to feel happy when someone gives me a treat, rather than feeling terrified it’ll make me ‘lose control’.
I want to ‘break the cycle’ and not pass it onto the next generations (children learn from what they see us do and not do).
I want to order what I truly want from the menu.
I don’t want to be standing there analysing nutritional labels and looking up ingredients in the middle of the supermarket.
I want to reconnect with my body’s cues, and enjoy the intimate sense of trust and comfort that entails.
I want to stop living in an endless pursuit of ‘the perfect diet’, and instead accept there is no such thing.
I want to stop secretly resenting someone for being thinner than me.
I don’t want to dread grocery shopping.
I don’t want to spend the rest of my life constantly cognitively impaired by undernourishment, or constantly fighting my own hunger and body.
I want to experience just how amazing my body and brain is at healing, as long as I give them the fuel to do so.
I want to choose myself and my life over my eating disorder.
You have everything inside of you that you need to recover. There is no ‘right’ way to recover. It is not a linear path and no one else can tell you how. Which I know is incredibly scary. But it can also be incredibly empowering. Trust yourself and this process!