Resources for POTS Syndrome
Are you or your loved one new to POTS Syndrome??? I was diagnosed with POTS in July of 2023.
Though I have a great medical team on my side, POTS Syndrome still impacts my life in big ways!
I hope to bless others along the way by sharing what I have learned through my journey.
Explaining POTS to Others...
For me, POTS is like a flashlight. I get physically "dimmer and dimmer" until I do reactive measures that recharge my physical batteries!
I don't do well answering anything on-the-spot! In the past, if someone asked me to explain my condition, I would ponder how much detail to give at any point. I wanted to be concise but not confusing!
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Here are a couple quick on-the-spot options that may help you explain POTS quickly and easily to others:
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~"POTS messes up my Autonomic Nervous System and makes it all wonky, especially when changing body positions!"
~"POTS makes my Autonomic Nervous System all messed up, especially when changing body positions."
~"POTS causes my nervous system to be out of whack, especially when changing body positions. It causes an increase in heartrate and can make me dizzy" (or fill-in your worst symptoms).
~"POTS gets my Autonomic Nervous System all out-of-sorts when I change body positions. It makes me feel..."
POTS Websites
Here are websites that have been helpful to me:
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~Cleveland Clinic (This article explains what POTS is very well!)
~Dysautonomia International (POTS is under the umbrella of dysautonomia.)
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*Social Media:
FB: POTS Awareness
Flare-ups and My Warning Signs/Red Flags
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What can cause flare-ups??
Here are some of the heavy-hitting causes of flare-ups.
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*Heat
*Menstrual cycle (definitely!)
*Standing too long
*Showering too long in hot water
*Dehydration
*Not enough salt intake
*Eating heavy meals/too many carbohydrates
*Getting a cold virus (etc.)
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Warning Signs/Red Flags
Here are my personal signs that I’m overdoing things physically.
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*Increased brain fog
*Light headache above one or both of my eyebrow bones
*Slightly elevated temperature (in the 99s)
*Lack of motivation to get my hourly step goal for my Fitbit watch
*Difficult time sitting up straight
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**It took me a while to learn my body’s warning signs to take it easy!**
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What are my go-to "helps"???
Depending on the severity of symptoms:
*Elevate legs and rest
*Take a quick power nap
*Increase salt intake!!!
*Sometimes after a really strenuous week (plus with lots of 'red flags' present), I need to cease from all manual labor (grocery shopping, any form of exercise, needless stair climbing, house work, etc.) for the remainder of the day.
Recommended Products
*I genuinely use the following products often!*
(The iHealth and LMNT are referral links...)
iHealth Air Pulse Oximeter
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I needed to check my oxygen levels after a small blood clot. I was originally drawn to this oximeter because it can be recharged using a USB cable. (I don't like changing batteries!)
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The oximeter can also be paired with a free health app to track your health data. For POTS patients, you can track your heartrate, among other things!
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Fitbit Watch
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I *love* my Fitbit! I have had the Charge 5 and now Versa 4 model. Both have served me well and allowed me to monitor and track my heartrate, steps, and health goals. The results can be paired with a free health app, too.
**Other big smart watch brands I have seen do not have the same ease/capability to show "on-demand" heartrate results like a Fitbit.** It's Fitbit all the way for me!
LMNT
Electrolyte Drink Mix
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This company offers a variety of (healthy, yes healthy) flavors that contain salt-infused gold! =]
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This product came recommended by my doctor and also a professional acquaintance with POTS.
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I can honestly tell you that this salt drink is a game-changer for me. When I feel like my physical body is dropping, I will "chug" this drink and feel more energized!
Brain Fog!?
This section is geared to help loved ones better understand brain fog and its effect on their loved one's daily life.
Dr. Kress in his book, Power over POTS, labels brain fog as "insufficient blood flow to the brain with compromised oxygen..."
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Brain fog is in a league of its own! It does wild things to the POTSie's brain. Some days brain fog is more pronounced than other days. For me, brain fog is often a big red flag for me that my body is overdone and needs to rest, elevate my legs, and/or increase my salt intake.
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Brain fog may look like:
~Difficulty problem solving
~Difficulty remembering the task at hand
~Forgetting important information learned just the day before (having a total brain block!)
~Difficulty drawing out words and communicating well
~Difficulty organizing thoughts AND things
~Having a general snail-paced brain function
~Inability to make decisions
One day after a strenuous and physically depleting day, I remember standing in the kitchen with NO ability to decide what to make for supper. My tween-aged daughter recommended hot dogs, and that's what we did! This severe brain fog made it impossible to formulate brain power to make any decisions. I have noticed that after any physically taxing days that I struggle to articulate any thoughts afterward.
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Speaking of brain fog...
In our homeschool, and since one of my kiddos was 6, I have used (and *loved*) the All About Learning Curriculum. They offer both a solid phonics/reading program and spelling curriculum.
Fast forward many years...
"So what," you can rightfully ask!? "Why is this on your POTS' page?"
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Remember the brain fog section from above? I had so much brain fog while gearing up for our 23/24 homeschool year. One of the beauties of this homeschool program (besides how practical it is for children) is that it's a "grab & go" curriculum. Even when my brain wasn't "strong" during any given homeschool day, I knew that this curriculum was laid out in such an EASY-TO-USE way! Aside from having activity pages on hand (which aren't complicated to prepare at all, and my other child loved cutting out the pages for me!), I could literally just spend moments looking at the lesson plan before teaching the material. Everything is laid out for the teacher/parent in such easy fashion.
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Even through brain fog, I didn't have to use unnecessary brain power to gear up for these great lessons.
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Yes, this link is an affiliate link, but I would still recommend this product 100x over, even without being an affiliate!
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Thanks for visiting my POTS' page!
I plan to add more info as I feel led!
