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Adrenaline Surges: How to Sleep When Your Heart’s Got You Up

This post made SO MUCH sense to me! I was having this experience of what felt like adrenaline surges at night with POTS- rapid heart rate, sweating, shaking, etc. Thank you for validating that POTS adrenaline surge is a thing!

Chronically Salty

Have you ever woken up in the middle of the night with your heart racing, body shaking with tremors, and with night sweats? If you have dysautonomia or another nervous system disorder, you may be facing adrenaline surges. If you thought your sympathetic (flight or fight) nervous system was already maxed out as it is, you were wrong.

Adrenaline surges, or the sudden dumping of adrenaline in your body, can happen at any time of the day with nervous system dysfunctions.  For many, however, this happens most while sleeping. I often have triggers with mine: loud music, sound vibrations from movie theaters, after being scared, or even after having what I call an “active dream,” in which, for some reason, I am always doing epic parkcour.

POTS Flare vs. Adrenaline Surge

For people with Postural Orthostatic Tachycardia Syndrome, or POTS, you may be asking yourself how to distinguish between the…

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How Do Compression Socks Help With POTS?

I recently shared a post about compression socks on my instagram story and I had several folks reach out and ask why I wore compression socks for POTS. (If you want more information on POTS and how it’s diagnosed read my post on it here).

POTS, Postural Orthostatic Tachycardia Syndrome, is a condition where your autonomic nervous system malfunctions and doesn’t push enough blood back up when you stand up. In other words, gravity wins and pulls down more blood than your body can react against. As a response, the heart beats faster to try to pump more blood back up. Hence the tachycardia symptom.

In POTS, there can be two reasons why blood doesn’t make it back up:

Low blood volume (there’s not enough blood, so it can’t reach all the way up)

Loose blood vessels (lack of vasoconstriction doesn’t push blood back up)

In both cases, compression can help POTS- to augment the lack of blood volume or of vasoconstriction- to push blood back up towards the head and the heart.

POTS Compression- two people showing the impact of blood pooling without and with compression
The impact of compression on POTS. Two people are shown, one without compression and one with compression. Both have POTS. The one with compression has more blood available to the upper body than the one without.

There are various strengths and styles of compression. Strengths can range from light (10-15mmHg), medium (15-20mmHg), strong (20-30mmHm), firm (30-40mmHg) depending on your condition and what your doctor prescribes. Styles can include knee-high, thigh-high or waist-high, and can be footed or footless. There are also abdominal binders for those who find that blood pools in their stomach region or those who feel tired after eating.

Have questions? Let me know in the comments what you’d like to see on a future post! I hope this gave you insight into why I wear compression for POTS.

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recipes

One Pot (or one Pot + one Pan) Gluten Free, Dairy-Free, Low Histamine, Low FODMAP, SIBO-Friendly Pad Thai

One Pot (or one Pot + one Pan) Gluten Free, Dairy-Free, Low Histamine, Low FODMAP, SIBO-Friendly Pad Thai

IMG_3685

Yield: 4 Servings (or 2 if you’re hungry heheh)

You can cook this all in one pot, or use one pot for the noodles and one pan for the rest (I just prefer to sauté in a pan)

Ingredients

• 8 oz pad thai noodle, or noodles of your choice

• 1 tsp toasted sesame oil 

• 1 tsp avocado oil

• 2 Tbsp avocado oil

• 1/4 tsp salt (optional)

• 2 Tbsp chunky almond butter

• 1 Tbsp gluten free soy sauce (try not to get low sodium variety if you need to increase your salt intake. Opposite for those salt sensitive. Omit for low histamine)

• 1 Tbsp red Thai curry paste (omit for low histamine)

• 8 oz skinless boneless chicken breast, cut in bite size pieces (Omit and replace with tofu for Vegetarian/Vegan)

• 2 Eggs

• 1 Tbsp ginger, minced

• 3 large carrots, julienned

• 1 small to medium zucchini, julienned or spiralized

• 1/4 cup green onion, sliced (plus more for garnish)

• 1 cup mung bean sprouts

• 1 lime (more for garnish if desired)

• 2 Tbsp Fresh cilantro and/or basil, chopped

• 1/4 cup cashews, crushed

Instructions

1. Cook the noodles according to the package instructions. Set aside.

2. Softly scramble 2 eggs over medium heat in pot, or large non-stick skillet. Set aside.

3. Add 1 teaspoon avocado oil and chicken to pan and cook over medium heat. When chicken is almost cooked through, add 2 Tbsp avocado oil, ginger, carrots, green onion and zucchini until veggies are al dente and slightly browned, if desired. Add eggs back in at the very end.

4. While noodles and chicken are cooking, prepare sauce by combining 1 teaspoon sesame oil, almond butter, gluten free soy sauce, 1/4 tsp salt (optional- can add more/ less to taste, if you have POTS like me, add a ton! heheh), lime juice from 1/2 of the lime, and red curry paste. Sauce should be thick, but if it seems too thick, add some warm or room temp water, mix in until desired consistency.

5. Add cooked and drained noodles to chicken, egg & vegetables. Drizzle sauce over and gently mix.

6. Transfer mixture to plate. Garnish with bean sprouts, fresh cilantro or basil, more green onion if desired, and nuts.

7. If you have dysautonomia, POTS, or otherwise need to increase your salt intake, salt the heck out of the dish now 🙂 I always eat with a salt shaker next to me so I can add as much salt as I can tolerate. Don’t oversalt & ruin your food, though!

8. Squeeze 2 of the lime quarters over dish and/ or reserve for garnish on platter.

9. Enjoy!

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Medications for POTS

Here are 20 of the top medication prescribed for POTS & Dysuatonomia. There are many POTS treatments, both pharmaceutical and non-pharmaceutical, so speak to your doctor about which POTS treatments or POTS medications are right for you.

Remember- POTS is a condition to be managed, so be wary of any site that claims that they will “cure POTS” or “cure Dysautonomia”, especially if they are charging large amounts of money to do so.

PDF of Top 20 Dysautonomia Drugs (Source: The Dysautonomia Project)

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pots workout

Working Out with POTS: “I feel worse when I do the suggested recumbent exercises, like the recumbent bike or rower. What gives?”

“I feel worse when I do the suggested recumbent exercises, like the recumbent bike or rower. What gives?”

The first thing any doctor will tell you about starting an exercise protocol with POTS is that recumbent exercise is the best to start with. However, if you’re anything like me, you might find that you feel WORSE when doing these exercises. In fact, my first ever POTS symptoms started after spin classes, whereas I could run or elliptical fine. So what gives?

I can’t find any scientific statements on this directly related to POTS, but first and foremost, let me reiterate to LISTEN TO YOUR BODY.

My best guess (based on consulting some friends in medicine and exercise science) is that something about the heart working as hard as it is with less of the body involved means that less of the body is getting blood. Perhaps the gravity is pulling the blood down when sitting on the recumbent and rower more than it is when running, because the blood is continually moving to all parts of the body when running (??) I’m prepared to be entirely wrong, so if you have a real answer PLEASE COMMENT BELOW.

xo

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Holiday Travel Tips with Chronic Illness

✨ Holiday Travel Tips with Chronic Illness✨ •

🎄 Pack medications & supplements in a carry-on rolling suitcase. Why? 1. You don’t want to check them in case it gets lost. 2. You don’t have to carry it on your back/ shoulder as you would a shoulder bag or backpack. I use a small duffel as my personal bag that I carry on top of my rolling suitcase until it’s time to board, then I put it under the seat in front of me. It holds my book, water, headphones, travel essentials. • ✨

🎄Hydrate!!! Bring bottles to fill up/ purchase extra water at the airport. Bring nuun/ liquid IV/ salt/ your favorite hydration. • ✨

🎄Eat every few hours (if you can). I find my POTS does better especially when traveling if I snack every 2 or so hours. Keeps the blood moving. •✨

🎄Plan ahead for food/ keep safe snacks on hand in case you get stuck in a hunger situation without any safe food options. It’s way less tempting to cheat on food that will make you feel crappy when you know you have safe snacks that can get you through until you can find safe food. • ✨

🎄Squeeze those muscles!! If you can, try to get up and move every hour or so. If you are stuck in a car or a window seat, try to engage several muscle groups (squeeze your buttocks, point and flex your toes, do some knee raises from your abs to work your core, squeeze your thighs) in order to pump your blood! Your legs and muscles are a natural blood pump. My blood pools a bunch when I travel due to my POTS. Compression socks help a ton too! •✨

🎄Let go of the fear of being “high maintenance”- the first time I checked a bag and did the rolling carry on/ duffel above was just a week trip to meet my boyfriends family. I didn’t want his family thinking I was “that girl” who needed multiple suitcases for a week- because it wasn’t all clothes and shoes!! But I quickly realized that I need to take care of me, period. If anyone said anything, I could shortly state it was a bag of medical items, end of story. No one said anything! 💖✨🥄🧂

What’re your favorite chronic illness travel tips? Share with me below! 👇🏻👇🏻👇🏻

As always, sending light, love, salt & spoons!

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Gluten & Dairy Free Homemade Spicy Gingerbread Cookies!

Gingerbread cookies were always my family’s favorite growing up. My mom would make them from scratch every year and use red hots for their eyes and buttons.

When I moved away from home, I took mom’s recipe with me. This year, with my chronic illness flaring, I wanted to have the magic of making homemade cookies, but didn’t want to feel ill. Thankfully it’s 2019 and with a few tweaks I was able to make them!

gluten dairy free gingerbread cookies

Now, just a few quick NOTES before we get started!:

Note 1, on flour: There are different kinds of gluten-free flour. I used a 1:1 variety by Bob’s red mill (I got mine on Amazon via Whole Foods) so that I could avoid having to add any Xantham gum or other ingredients. Make sure whatever flour you use is 1:1 OR that you have whatever additives you need to replicate ‘real’ flour consistency.

Note 2, on shortening/ butter: There are so many different shortenings and butter substitutes. I recommend finding one made of ingredients you are comfortable with (eg. some have soy, others don’t). I used this one by earth balance, soy-free. (again, from Amazon via whole foods because I got my groceries delivered #spooniewin)

Note 3, on molasses: This recipe calls for light molasses. I did some research, and it seems as though any brand of light or normal molasses should do. I recommend the Grandma’s brand, unfortunately not at whole foods, surprise! hehe. Any light or normal molasses should do, DO NOT use black strap molasses as it’s far more bitter. My whole foods only had black strap so I bought this separately.

Note 4, on spices: I always throw in a pinch more ginger and cinnamon than called for, because I LOVE spices! But rest assured if you use the measurements below you’ll be plenty flavorful!

RECIPE: 

Homemade Spicy Gingerbread Men Cookies 

Yield 24 cookies

5-10 min prep time, 1 hour refrigeration time, 20-30 min cutting/ baking time. 

2 1/4 cups flour

1/2 cup sugar

1/2 cup shortening or butter substitute

1/2 cup light molasses

1 egg

1 1/2 teaspoons ground cinnamon

1 teaspoon double-acting baking powder

1 teaspoon ground ginger

1 teaspoon ground cloves

1/2 teaspoon ground nutmeg

1/2 teaspoon baking soda

1/2 teaspoon salt

Instructions: 

  1. In a large bowl measure all ingredients. Beat ingredients with mixer at medium speed until well mixed. Cover and refrigerate for 1 hour.
  2. On lightly floured surface, with floured rolling pin (note: my gluten free flour didn’t stick super well so you may have to kinda wing this part), roll chilled dough 1/8 in thick. Preheat oven to 350 degrees F.
  3. With cookie cutters, cut out desired shapes. Reroll trimmings and cut again. With spatula, place 1/2 in apart on cookie sheets.
  4. On each cut out, use sprinkles, cinnamon red hots, or desired decor to embellish cookies. Or omit and use frosting to decorate after (frosting not included in recipe)
  5. Bake 8 minutes or until browned, then with spatula remove cookies to cooling rack.
  6. ENJOY!!!!

 

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Compression Stockings for POTS

One of the first things many POTS patients are told to do is to get compression stockings or compression socks. But what does that mean? Where do you begin?

I have very sensitive skin and a low pain tolerance as well as a low what I call ‘tight clothes’ tolerance, and below I’ll share my experience with compression socks and stockings, what was comfortable, how they helped and what I recommend. Note: I get zero commission or buy back from this, just sharing my own advice!

Quick Note on the Growing Popularity of Compression Socks: There are more and more ‘fad’ compression stocking companies coming out. Unless the socks or stockings explicitly list the compression level (20-30mm is recommended for POTS), I would save your money and avoid these.

First of all, compression socks/ stockings DO NOT have to be ugly or uncomfortable. Trust me- there are MANY uncomfortable and ugly varieties- just walk down the compression aisle at your local drugstore. But as anyone with chronic illness knows, the key to any aid is comfort and utility, and that’s what I’ve found in the following compression garments.

Disclaimer: These are just what worked for me. Everyone is different (and everyone’s POTS symptoms are different, so these may not work for you and that’s ok)

How Much Compression Do I Need?

A minimum of 20-30mmHg is the recommended compression level for POTS patients. If this is your first time wearing compression garments, you could start with a 15-20mmHg to get used to them. Some folks don’t like the feel or need to get used to it, and that’s entirely ok. 30-40mmHg is recommended as well, if you can tolerate it. I find that the material on many full-length compression garments at 20-30mmHg isn’t the most comfortable, so I don’t like to go any higher than that.

Knee High, Thigh High or Full Length?

I have both knee high and full length. Personally, since I have such sensitive skin, thigh high will leave a mark at where it hit my thigh and be very uncomfortable, but some people like them.

I tend to use my knee high ones for everyday wear, working out, and when I just want to throw on compression without a whole ordeal of getting the waist-high ones on (sometimes its my cardio for the day!)

I wear full-length pantyhose stockings when I go to a full day of work and feel I need more support than knee-high.

Since some full length medical grade stockings can be expensive, I started with these Run Forever Sports Knee High 20-30mmHg socks, and I LOVE them. I have like 5 pairs now.

Material: Sock, Tight, or Pantyhose?

My knee highs are softer sock material. I have full length tights as well as pantyhose. I prefer the pantyhose because they’re actually softer than the tights, and thinner. I can fit my full length allegro pantyhose 20-30mmHg under my skinny JCrew and Madewell jeans- no one knows I’m wearing them! Score! Cute outfits in tact!!

Bonus: The above stockings are on sale for $21! I have had mine for a year and they just wore out!

Footed or Footless Tights and Pantyhose?

Both!! I have one pair of footed pantyhose that I ordered to try them out and ended up loving. I found that I wanted to wear them to work under dresses in the summer with sandals, so I needed them not to be footed. Thankfully my favorite pair comes in footless too so I snagged a pair of those!!

I also recently ordered some sheer knee high footless sleeves as well. Some days I don’t feel like wrestling on the full leg compression but want to wear, say jeans with sandals, and I needed to not have toes on mine. I got the same brand as my socks, just the calf sleeves! Think about the color though, I ordered hot pink and bright teal, and should have gotten black for work! Haha! Now i just walk around with jeans and hot pink sleeves sticking out from them. Once my coworker asked me if I was wearing a wetsuit under my clothes! lol!

Final Thoughts

I hope this was helpful! What questions do you have about compression socks? I’ll be posting more about how they’ve helped me and my experience!

 

 

 

 

Categories
media

POTS in the News!

The link between POTS and sex hormones is particularly important, as most women report worsening of POTS symptoms around their cycle (before, and during mostly).

Children’s Hospital of Philadelphia reports on three transgendered individuals with POTS who improved after initiating testosterone supplementation for female to male gender transition. Importantly, the authors do NOT recommend the use of testosterone as a POTS treatment, but they do suggest that we need more research to understand the role of sex hormones in POTS. Article: https://www.liebertpub.com/doi/10.1089/trgh.2019.0041?fbclid=IwAR03VAb7jR41Nc3gup-P5ig9Ho8W9s98-ycKLATU9ZcYUGrdnLWTb3BRfBY&

Via Dysautonomia International FB Page

 

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health pots

How is POTS Diagnosed?

POTS stands for Postural Orthostatic Tachycardia Syndrome.

The diagnoses evades many patients for several years, but it is relatively simple.

This diagnostic criteria comes straight from Dysautonomia International:

Diagnostic Criteria
The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension.1,2,3,4 In children and adolescents, a revised standard of a 40 bpm or more increase has recently been adopted.4,5 POTS is often diagnosed by a Tilt Table Test, but if such testing is not available, POTS can be diagnosed with bedside measurements of heart rate and blood pressure taken in the supine (laying down) and standing up position at 2, 5 and 10 minute intervals. Doctors may perform more detailed tests to evaluate the autonomic nervous system in POTS patients, such as Quantitative Sudomotor Axon Reflex Test (QSART, sometimes called Q-Sweat), Thermoregulatory Sweat Test (TST), skin biopsies looking at the small fiber nerves, gastric motility studies and more.

Can I Diagnose Myself With POTS?

You can certainly perform the “poor man’s tilt table test” described above, to see if your heart rate increases 30 BPM or more, and take this information with you to your doctor.

Lay down for 5 minutes. Take your HR. Stand up, immediately take your HR. Stay standing and take your HR at 2, 5, and 10 minute intervals. Do not move around or talk during this process.

Sources
1. Postural Tachycardia Syndrome. Blair P. Grubb, Circulation. 2008; 117: 2814-2817.

2. National Institute of Health, Neurological Institute of Neurological Disorders and Stroke, Postural Tachycardia Syndrome Information Page.

3. The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management. Satish R Raj, MD MSCI, Indian Pacing Electrophysiol J. 2006 April-Jun; 6(2): 84-99.

4. Consensus statement on the definition of orthostatic hypotension, neurally mediated syncope and the postural tachycardia syndrome. Autonomic Neuroscience: Basic and Clinical 161 (2011) 46-48.

5. Postural tachycardia in children and adolescents: what is abnormal? Singer W, Sletten DM, Opfer-Gehrking TL, Brands CK, Fischer PR, Low PA, J Pediatr. 2012 Feb;160(2):222-6. Epub 2011 Oct 11.