(Postural orthostatic tachycardia syndrome)
POTS can be very difficult to diagnose due to so many symptoms. This often leads patients to try many doctors. Sometimes it takes years before a doctor actually figures it out. It was a very frustrating experience. I was in the ER many times and even they didn't put it together. Thankfully awareness on this topic is becoming more known now. It used to consume me and effect how I lived each day. Even my last cardiologist didnt recognize i had POTS despite my horrible symptoms and repetitive visits.
Below you will find some possible solutions, information on POTS testing, and education on the condition itself. It is super common among Lyme patients, RMSF and especially if you have Babesia.
I used to get some scary low BP drops due to POTS. I get confused, dizzy and act like I had been drinking. The room spins and I get blurred vision when I stand up. I took many failed medications but eventually I found solutions to keep my electrolytes balanced and BP up to 100/60. I've managed well for years. Most of the time. My diet and how much I sweat alters my needs.
Below you will find information on the following:
ELECTROLYTES
COMPRESSION SOCKS
SALT
ADDITIONAL LIFESTYLE TIPS
NOTE ON CLEAN DIETS
POTS EDUCATION
POTS TESTING
ORS ELECTROLYTES
MENSTRUAL CYCLES AND THEIR EFFECTS ON POTS
1.
ELECTROLYTES
I must use a quality electrolyte drink every single day or I have major issues. I need more in hot weather. I also make sure I increase on sauna days. I use right before the sauna to prevent an electrolyte imbalance.
Please do not buy a poor quality one with low sodium. I have found many products work and many do not. I have tried many. I am always testing new ones to expand my suggestions. Top recommended electrolytes that work for me here:
RECOMMENDED BRANDS:
These companies also respond with compassion when I ask them to give products away for raffles.
1. Redmond's Reltye. (Capsules or drink mix)
Click here to apply discount automatically. You can also use code RISEABOVE https://glnk.io/oq72y/httpstheriseabovelymeigshidmznlngnkzwq4mg
2. Jigsaw Adrenal Cocktail caps or powder
This is cheapest here since everything is always 25% off:
3. Ceralyte 70 (I used this for 2 years when POTS was severe)
(buy direct below with discount RISEABOVE)
4. Homemade idea:
2.
COMPRESSION SOCKS
I was told knee high and I find them on Amazon. Many of these resources suggest waist high but I didn't need that personally. I had to wear them everyday for a year
3.
SALT
Above in the electrolytes section you see a mention of how important sodium is but i wanted to add the salt section since we all need and use additional salt besides taking electrolytes.
My cardiologist stressed for me to keep up on my salt intake. He says his POTS patients need 4,000 to 6,000 milligrams sodium. Typical Bad American diet gets around 5-6 normally. Clean diet gets around 2,000 or 3,000 total therefore I am to add about 3,000 in sodium. Some bad POTS patients need 6,000 to 8,000mg total. The better my diet, the less sodium I get so I have to adjust.
REDMOND'S is once again the best quality and taste and used in many supplement brands because of it. I buy their electrolytes and their salt products. They did a giveaway recently in my group so they are also compassionate. Coupon code to save on their website: RISEABOVE
4.
ADDITIONAL TIPS
*Avoid situations that can contribute to worsening of symptoms, such as heat exposure, alcohol and large/ heavy meals.
*Sleep with head of bed elevated.
*Exercises specific for POTS (rower, recumbent bike and swimming are often mentioned).
Physical counter maneuvers (squats or leg crossing maneuver).
NOTE ON CLEAN DIETS
A doctor asked me if I eat much packaged foods, processed? She then explained why she asked. She said when someone has chronic health conditions they tend to eat a cleaner diet than most, less processed. Basically you are making better choices, healthier choices. But in that choice, you consume less salt more times than not. She said most people are watching their salt but with POTS, you need more. A healthy diet can make POTS worse. Sodium adjustments must be made.
POTS/DYSAUTONOMIA EDUCATION
"Successfully advocated for a unique ICD-10 code for POTS in the US for the first time! US clinicians can begin using the new POTS code, G90.A, as of October 1, 2022" https://dysautonomiainternational.org/blog/wordpress/
My favorite cardiologist, Dr. Sanjay Gupta, a Consultant Cardiologist at York Teaching Hospital in York, UK. He is such a nice man and has taken the time to communicate with me several times.
His website: www.potsspecialist.com.
His POTS video:
Recommended video on how regular intravenous saline can benefit POTS patients. I sent this video to my cardicardiologist and actually got insurance coverage.
How LDN may help
POTS TESTING
"A tilt table test is the gold standard of POTS diagnosis. The tilt table measures your heart rate and blood pressure as you change posture and position.Besides the tilt table, other testing may be done for POTS:
-Blood and urine test for causes of POTS and conditions that mimic POTS.
-QSART (a test that measures the autonomic nerves that control sweating).
-Autonomic breathing test (to measure how your blood rate and pressure respond during exercise).
-TST (tuberculin skin test).
-Skin nerve biopsy.
-Echocardiogram.
-Blood volume with hemodynamic studies."
"Below are some of the tests that may be performed as part of an attempt to identify and diagnose POTS."
Cardiologist letter for lyme patients
ELECTROLYTES (additional info)
What is an ORS?
(I often needed this type when I was severe)
MENSTRUAL CYCLES AND THEIR EFFECTS ON POTS
We decided to provide some information on this subject due to my personal experience. I woke 2 hours late, with low BP, high pulse and super weak and dizzy. Not my normal except for a heavy cycle. Most of us know our cycles have an effect on our symptoms but it also makes POTS symptoms worse. The joys of being a woman. 😠
Disclaimer: Rise Above Lyme makes no claims about any possible benefit of using any product mentioned within this site. Always consult with your doctor before adding anything. The information shared is based on personal experience, years of accumulated researched resources from Lyme Literate doctors and polls conducted within Lyme groups from actual patient experience using these solution ideas.