All kidding aside, this is serious stuff that affect lives. I’m talking about POTS (Post Orthostatic Tachycardia Syndrome). Knowing this could save a life, you never know if it could be yours. In my case, this is more plausible than I care to consider. POTS is not fun, but here are some great tips on making it just a little bit easier to manage.
Reduce POTS Symptoms - Dr. Clair on Dizziness, Brain Fog, and High Heart Rate
My medical history and that of my family lends itself to a condition called POTS and with regards to EDS, the vascular EDS which can be fatal. It was for my dad and my brother, both dying from heart related issues. My dad’s doctor explained that he died from “his heart walls exploding”. This rupture of a hollow organ is one of the diagnostic tools. I guess my small bowel rupture could be counted too. My brother died in his sleep with heart related complications. I never learned anything more specific but my guess was he may have suffered from Long QT Syndrome which can cause a fatal arrhythmia, often during sleep.
I always have a bottle of water wherever I go to stay hydrated. Occasionally I mix an electrolyte supplement in my water to keep them in balance. I don’t do this everyday but on hotter days or when I feel more “light headed” than usual.
My recent project of my greenhouse helps with increasing oxygen for me to breathe. Plants breathe in our carbon dioxide and give off (breathe out) oxygen. When I step into my greenhouse it’s like going into an oxygen chamber. When the sun is out it’s like being in an infrared sauna, but better. There is energy my body uses, just like the plants do with photosynthesis, my body does it too..but a little different. I’m not green, because as a human I consist of blood, not chlorophyll (the stuff that makes plant green). In our bodies it is heme, or the iron rich blood in our systems.
Venous Insufficiency in EDS and HSD | What you NEED TO KNOW
The iron assimilation in the body is regulated by copper or actually an amino acid called ceruloplasmin. Copper and zinc need to be balanced in the body, when one is high the other is low. People with EDS have issues with IBS or other bowel issues that can be alleviated (to some degree) by checking and elevating zinc levels. Most people that experience chronic bowel issues have low zinc. I had what are known as “Beau Lines” on my thumbnails as a child and into adulthood, until I started supplementing with zinc in my multi vitamins and drops in my water.
Zinc is also beneficial in repairing the intestinal lining from GI issues such as IBS, Crohn’s or Celiac disease. Always best to test and work with a nutritionist who can titrate your dosage properly. (Zinc and copper should be properly balanced and supplementing too much zinc can lead to copper deficiencies.)
Common Gastrointestinal Symptoms in EDS & HSD
In The Beginning - Before Your Birthday
When woman is pregnant her body ramps up the copper levels, up to 200% compared to the normal levels of when she’s not pregnant. This increase of copper nourishes the ability of the fetal growth to develop the neurological system. The best conductor of electricity, which is what the nervous system is made of, is copper and water.
Copper is assimilated in the body in the duodenal area, where the duodenum and the stomach meet. I go into this detail for obvious reasons…stay with me and I’ll explain.
Majority of copper is absorbed in the enterocytes of the duodenum and proximal small intestine and incorporated in the liver into apoceruloplasmin, forming ceruloplasmin. Ceruloplasmin represents 90% of circulating copper, and excesses are excreted into bile. Copper participates in multiple enzymatic reactions with varied physiological roles from melanin production to wound healing to electron transport. It stimulates the absorption of iron and is required for the synthesis and function of hemoglobin. It is also involved in the production of elastin and collagen which contribute to the structural stability of bone, cartilage, and tendons [1].
Two weeks after birth I started regurgitating my feedings with projectile force. Doctors didn’t know what caused it even after “testing” me. At the time I was born, in 1956, the textbook case was a “first born male” and I was the second child and born a female…and still am. Sick and wasting away I finally was operated on for pyloric stenosis at the age of about 8 weeks old.
Our Bodies Are Electric
Another interesting tidbit is the unusual situation I found myself in, quite by accident. About the time I had my second child I was a “stay at home mom” and started baking bread. I now know that yeasts and fermented things are my “kryptonite” due to mast cells misbehaving.
Every time before I would knead the dough I would remove my jewelry, including my watch. I noticed the watch had stopped working when I went to put it back on. I decided to wear it so it would remind me to get a new battery next time I went to the mall. But the funny thing was, the watch started working again. Of course it was the wrong time since it had been stopped for several hours while I finished baking. So I forgot about the battery.
Stranger things have happened, but this one was one of those “Twilight Zone” moments where you almost heard the music in your head. Okay, so I’m just a little dramatic. Again, when I removed my watch it stopped and began to run shortly after putting it back on my arm. After it happened the third time I told my husband, thinking he might have an explanation.
Just when you don’t think it could get any wackier, my husband makes a suggestion that made me look a little sideways at him. “Let’s hook you up to the volt meter and measure your electricity…you’re a walking battery.”
“Only on one condition, you have to do it too,” I insisted.
He agreed and the results were interesting to say the least. My voltage was twice what his was. I WAS a walking battery, he confirmed.
I had recently given birth to my second child and nursed him for 11 months. My body was in the process of eliminating the excess copper from his birth. But, it seems I must have a problem with dealing with copper and it’s balance in the body.
VEDS (Vascular Ehlers Danlos Syndrome)
Blood pressure is affected by EDS, especially the vascular type. The blood flow is largely regulated by the electrical charges in your body. I believe that this is how the heart “pumps” blood and when it doesn’t work, blood pools…hence POTS.
After my condition of Left Bundle Branch Block (LBBB) was discovered due to high blood pressure. I was hospitalized for further testing and was prescribed the usual cardio “cocktail” as a combination of beta blockers and multiple diuretics. They didn’t work to bring my blood pressure down low enough to release me from the hospital. After four days of various dosages and no results, I told the cardiologist what I just told you. I was prescribed Xanax, a member of the benzodiazepines at the lowest dosage. On the fifth day in the hospital, my blood pressure came down low enough and I went home.
Fast forward about ten years and Covid lock downs and the prescription for Xanax was harder to get refilled due to the narcotic classification of this drug. (This class of drug requires a written prescriptions for refills). This meant going in to the nurse practitioner to get the prescription and then (in person) to pick up at the pharmacy. No one else could pick them up and every facility was in “lock down”. I started to research an natural alternative.
I found one after following Trudy Scott a certified nutritionist. She has a class for individuals who want to study about GABA. The amino acid GABA does the same thing (without the side effects from the prescription) as Xanax does in the body (see GABA QuickStart 2.0). I also learned about the vagus nerve and how GABA affects this and ultimately my blood pressure.
The vagus nerve requires GABA to regulate your autonomic nervous system, that controls your blood pressure, breathing, digestion and a whole lot more. The vagus nerve is often called the “wandering nerve” because it is the main branch of your nervous system and regulates how it does or doesn’t function. This has a lot to do with heart rate variability (HRV) and how you respond to stress.
The Heart and EDS - a simple test
A simple thumb test for aortic aneurysm, a YouTube short video by Joel Kahn, MD, an integrative cardiologist who practices in the Detroit, MI area. The hyperflexible thumb often seen with EDS, is indicative of the “flexibility” of heart valves, especially the mitral valve and the aorta’s size and condition and potential for aneurysms.
So now I’m learning about how EDS is affecting my “blood vessels of a 20 year old” said the cardiologist when I was actually 58 years old. The elasticity of my blood vessels can be attributed to vascular EDS, it’s one of the “signs”. Could this be related to an imbalance of copper?
Copper-containing enzymes such as cytochrome play key roles in many oxidative processes and, hence, in the production of most of the energy required for metabolism. Certain cuproenzymes are important in the body's defense against free radicals (e.g., superoxide dismutase in cytosol and mitochondria), in the synthesis of connective tissue (e.g., lysyl oxidase), in the transport and utilization of iron (e.g., ferroxidases, including ceruloplasmin), in the synthesis of norepinephrine (dopamine-hydroxylase), and in other metabolic pathways (Solomons, 1985).
I’m still learning, in the meantime I designed some active wear that acts as a light compression for me when I my weight is normal. (See my Splash Collection on my website, The Lone Zebra.
I’ve had some major issues with dysphagia (trouble swallowing) and I attribute it to infected molars that are scheduled to be extracted July 7th this summer. (It’s been moved up to June 5th due to the ongoing infection and my heart history.) Keep me in your prayers. I’m on antibiotics and pray the infection doesn’t get into my heart before the teeth come out.
Dental issues are another problem for EDS patients, but that’s a whole other blog post. I promise I’ll be covering that topic soon.
Additional References:
Copper: from neurotransmission to neuroproteostasis
Carlos M Opazo 1,*, Mark A Greenough 1, Ashley I Bush 1,*
https://pmc.ncbi.nlm.nih.gov/articles/PMC4080678/
AMPA receptor
https://en.wikipedia.org/wiki/AMPA_receptor
Folate and homocysteine metabolism in copper-deficient rats
T Tamura 1 , K H Hong, Y Mizuno, K E Johnston, C L Keen
https://pubmed.ncbi.nlm.nih.gov/10350650/
The Role of Fe, Zn, and Cu in Pregnancy
Konrad Grzeszczak 1, Sebastian Kwiatkowski 2, Danuta Kosik-Bogacka 3,*
https://pmc.ncbi.nlm.nih.gov/articles/PMC7463674/
A Case of Isolated Elevated Copper Levels during Pregnancy
LaToya R Walker 1,*, Meghan Rattigan 1, Joseph Canterino 1
https://pmc.ncbi.nlm.nih.gov/articles/PMC3135074/
Nutrition During Pregnancy: Part I Weight Gain: Part II Nutrient Supplements.
https://www.ncbi.nlm.nih.gov/books/NBK235243/