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What is postural orthostatic tachycardia syndrome (POTS)?

Postural Orthostatic Tachycardia Syndrome (POTS) is often a puzzling condition, the causes of which can be extremely difficult to pinpoint, and it can significantly incapacitate individuals.

So, what is POTS?

During a POTS crisis, a person may feel as though their heart starts beating harder and faster than usual when they suddenly change positions. They may experience dizziness or even loss of balance as if their legs are not obeying them. Often, there’s a sense of weakness or fatigue, as if energy is rapidly leaving the body. The head may start spinning, much like after a long swing on a swing set, and discomfort may spread to the chest, causing unpleasant sensations. The skin may become pale or cold, and at times, breathing may feel difficult. All these sensations can be quite frightening and can significantly affect a person’s overall condition and mood.

Many symptoms of a POTS crisis may resemble symptoms of low blood sugar, such as dizziness, weakness, rapid heartbeat, and fainting. It can also resemble cardiovascular issues or a panic attack. All of this can make it difficult to determine the source of the problem without additional testing and diagnosis.

Precisely because these symptoms may indicate serious cardiovascular issues, anyone experiencing them for the first time should immediately go to the hospital or call emergency services. Since such symptoms can also be present in less dangerous conditions, the hospital may say they haven’t found a problem. Note that they are telling you they didn’t find serious cardiovascular problems! That’s what they were looking for. Everything else is just not of interest to them. You should then continue to investigate the explanation of your symptoms with a doctor familiar with all the problems leading to POTS.

POTS Symptoms

POTS is not a diagnosis, it’s a set of symptoms. POTS symptoms can be divided into several subgroups, including:

Cardiovascular Symptoms:

  • Tachycardia (increased heart rate).
  • Hypotension (low blood pressure).
  • Postural changes-related symptoms such as dizziness, fainting, or feeling weak.

Orthostatic Symptoms:

  • The sensation of “things spinning” especially when rising, and loss of coordination.
  • Fainting or near-fainting upon sudden standing or standing.
  • The feeling of heaviness in the legs.
  • The feeling of instability or loss of balance.

Neurovegetative Symptoms:

  • Loss of body control or feeling that the “body is getting out of control.”
  • The sensation of heat or cold, especially in the upper and lower extremities.
  • Symptoms related to changes in sweating, often with increased sweating.

Symptoms Related to Physical Activity:

  • Orthostatic tachycardia: rapid pulse when transitioning from a horizontal to a vertical position.
  • Dizziness or fainting upon standing; feeling of instability and/or dizziness during physical activity.
  • Fatigue or weakness.
  • Pain or discomfort in the neck and cervical vertebrae area, which may worsen with physical exertion.

Symptoms Related to Cognitive Functions:

  • Problems with concentration, attention, or memory.
  • Mental confusion or sluggishness.
  • Difficulty making decisions.

Associated Symptoms:

  • Headaches, including migraines and tension headaches.
  • Sleep problems, including insomnia or sleep disturbances.
  • Digestive problems, including nausea, vomiting, or abdominal pain.

Symptoms in women:

  • Symptoms of POTS occur more frequently in women than in men.
  • Women may notice worsening of POTS symptoms before menstruation or after pregnancy, likely due to hormonal fluctuations.
  • Women may also experience POTS symptoms at an earlier age than men and have additional symptoms such as abdominal pain, muscle weakness, and numbness in the hands and feet.

Symptoms in children:

  • Approximately 33% of people with POTS experience symptoms before they turn 18.
  • Symptoms of POTS in children can often mimic those experienced by adults.

What causes POTS?

I’ll say it right away, genetics can be involved here, which is why you often hear: “My mom had the same problems her whole life, it’s hereditary!” But even without genetic problems, there are plenty of reasons for POTS. Let’s list them right away so you can understand why I decided to write a separate article about POTS:

  1. Autonomic Nervous System (ANS) Dysfunction: Disorders in the regulation of the autonomic nervous system can lead to POTS symptoms. This includes dysfunction of the sympathetic nervous system, which controls the cardiovascular response to changes in body position.
  2. Hereditary Connective Tissue Disorders: People with hereditary connective tissue disorders, such as Ehlers-Danlos Syndrome (EDS) or Hypermobile Joint Syndrome (HSD), have an increased risk of developing POTS. This is due to structural and functional abnormalities in the connective tissue, which can affect the circulatory system and pressure regulation.
  3. Mastocytosis: Mastocytosis is a group of rare inherited and acquired disorders characterized by excessive production and activation of mast cells. This can lead to increased sensitivity to histamine and other mediators, which can contribute to POTS symptoms.
  4. Intoxication with mycotoxins, Lyme neurotoxins, and heavy metals: These toxins can affect the nervous and cardiovascular systems, leading to the development of POTS symptoms in some individuals, especially those susceptible to intoxication or with increased sensitivity to these substances.
  5. Infections: Some infections, especially those affecting the nervous system or cardiovascular system, can cause POTS symptoms.
    • Viral infections such as influenza, Epstein-Barr virus, cytomegalovirus (CMV), and herpes simplex virus.
    • Bacterial infections: Some bacterial infections, including Lyme disease, bartonellosis, babesiosis, urinary tract infections, and others.
  6. Traumatic Injuries: Injuries, especially those affecting the brain or spinal cord, can disrupt cardiovascular regulation and lead to the development of POTS symptoms.
  7. Spontaneous Cerebrospinal Fluid (CSF) Leak: Tears in the dura mater or other disorders causing cerebrospinal fluid leakage can lead to symptoms similar to POTS due to changes in fluid pressure around the brain and spinal cord.
  8. Anemia: A low red blood cell count or their inadequate ability to carry oxygen can lead to fatigue, weakness, and tachycardia, resembling POTS symptoms.
  9. Autoimmune diseases (e.g., systemic lupus erythematosus, Sj√∂gren’s syndrome): Autoimmune diseases can cause inflammation and damage to blood vessels or nerves, which can lead to POTS symptoms.
  10. Celiac Disease: Some people with celiac disease may experience symptoms similar to POTS, likely due to inflammation or disruptions in the digestive system.
  11. Irritable Bowel Syndrome (IBS): IBS is a chronic functional gastrointestinal disorder characterized by various symptoms, including abdominal pain, diarrhea, constipation, and bloating. Some people with IBS may also experience orthostatic tachycardia and other symptoms similar to POTS, likely due to the influence on autonomic nervous system function and vascular response to changes in body position.
  12. Vitamin B1 (thiamine) deficiency: Vitamin B1, or thiamine, plays a crucial role in the normal functioning of the nervous and cardiovascular systems. Deficiency of this vitamin can lead to various neurological and cardiac symptoms, including muscle weakness, tingling or numbness in the limbs, and fatigue. Some of these symptoms may resemble manifestations of POTS. The status of vitamin B1 should be considered when diagnosing symptoms resembling POTS, especially in people at risk of deficiency, such as alcoholics, those with poor nutrition, or pregnant women.
  13. Hormonal Problems: Imbalances in hormonal balance, such as decreased cortisol levels (insufficient or excessive production), thyroid gland imbalance (hyperthyroidism or hypothyroidism), problems with adrenal hormones, sex hormones, and excess estrogen, can affect cardiovascular regulation and response to changes in body position. For example, inadequate cortisol production can lead to an inadequate response to stress, including changes in posture, which may mimic POTS symptoms.

What happens when multiple factors causing POTS are combined?

Everyone has probably heard that people with hypermobile joints often have a greater risk of mold intoxication. But they also have a greater risk of symptomatic Lyme disease, they react worse to gluten, and they have many other problems.

Here’s where it gets interesting. As you may have already noticed, mold can be a cause of POTS. But in the presence of a genetic component, namely, in the case of diseases related to connective tissue problems, POTS can simply be one of the manifestations of such a disease. That is, there may be a genetic problem that leads to POTS, or there may be no genetic problem at all, and POTS develops simply as a result of the influence of mycotoxins on the body.

I brought up mold just as an example; there is a whole range of toxins, viruses, and other causes that can trigger POTS symptoms: neurotoxins, endotoxins, heavy metals, and gluten. Yes, gluten. My reaction to gluten is precisely POTS symptoms. Why? Because gluten can cause problems with connective tissue as it is an extremely toxic substance. Perhaps now there should be no questions as to why it takes several months to see the results of this diet after removing gluten from your diet. No other food requires 3-6 months to cleanse from the body.

What does cerebrospinal fluid have to do with it?

I would like to explain something to you that is practically never talked about. Namely: why, in the presence of connective tissue problems or mold intoxication, the same symptoms can occur as with the loss of cerebrospinal fluid? Cerebrospinal fluid (CSF) is a colourless, transparent fluid that surrounds and protects your brain and spinal cord. It is produced inside the brain in special cavities called ventricles and circulates around the brain and along the spinal cord, providing buoyancy and protection for nervous tissues.

Cerebrospinal fluid leakage occurs when this fluid leaks from the spinal canal due to a rupture or damage to the dura mater, the membrane that normally holds the fluid inside the spinal canal.

This can occur due to various factors, including injury, surgical intervention, or genetic connective tissue disorders, as well as exposure to toxic substances or any inflammatory process, which can weaken the dura mater and lead to microtrauma of the brain membrane. This happens roughly as follows: a bubble with cerebrospinal fluid forms on the brain membrane, it bursts, and a small portion of the fluid leaks out. It is precisely at this moment, most probably, that the POTS crisis, described at the beginning of the article, occurs.

It all becomes clear when you’re pointed to this moment, isn’t it? Yet, this aspect is almost always overlooked, making POTS appear like something mystical haunting your family.

Symptoms that may indicate cerebrospinal fluid leakage:

  • Orthostatic headaches: Headaches that worsen when the body is in an upright position and improve when lying down. This is related to changes in cerebrospinal fluid pressure when changing body position.
  • Tinnitus: Ringing or noise in the ears, which can occur due to cerebrospinal fluid leakage.
  • Nausea and vomiting: Common symptoms associated with disruption of normal cerebrospinal fluid pressure and composition.
  • Neck pain: Pain and discomfort in the neck and spine area associated with fluid leakage.
  • Fatigue and neurological symptoms: Deep fatigue, difficulties with concentration, and memory, and other cognitive problems can also be symptoms of cerebrospinal fluid leakage.

In other words, cerebrospinal fluid leakage produces all the symptoms that we usually call POTS. And trauma is not necessary at all here; the loss may be due to problems with connective tissue, which are not always genetic. Mold can also create this problem without any genetic component.

How is POTS diagnosed?

The tilt-table test, or tilt-table test, is a diagnostic procedure that helps assess the body’s response to changes in body position. During this test, the patient lies on a special table that can be tilted at various angles.

The procedure typically proceeds as follows:

  1. The patient lies on the table and is secured to it.
  2. The table begins to tilt, changing the angle of inclination.
  3. The doctor observes the patient’s heart rate, blood pressure, and other physiological parameters in different positions on the table.
  4. If symptoms such as dizziness, weakness, fainting, or changes in heart rate or blood pressure occur during tilting, this may indicate the presence of POTS or other autonomic disorders.

The tilt table test allows doctors to assess the response of your nervous system and cardiovascular system to changes in body position, which can help diagnose POTS.

How is POTS treated?

Treatment usually involves a combination of medication therapy and lifestyle changes tailored to the individual needs of each person. Here’s an overview of treatment options:

Natural therapies

I always try to avoid using medications, so I won’t elaborate on these options. There are other methods to reduce POTS symptoms:

  • Magnesium: Magnesium can help improve muscle and heart function, as well as reduce stress and fatigue levels.
  • Coenzyme Q10: This antioxidant can help improve energy levels and support heart and muscle health.
  • Omega-3 fatty acids: Omega-3 fatty acids can help improve heart and vascular health, as well as reduce inflammation in the body.
  • Phospholipids: can help improve the condition of cell membranes, support normal heart and vascular function, and improve metabolism and energy exchange in the body. They may be useful for improving cell membrane structure and reducing inflammation.
  • Lycopene: This antioxidant, often found in tomatoes, can help improve heart and vascular health.
  • Adaptogens (Ginseng, Eleutherococcus, Ashwagandha, Rhodiola Rosea) – these herbal remedies can help cope with stress and improve endurance and energy during POTS symptoms.
  • RG3 – a nasal form of ginseng, which immediately reaches the brain and helps very effectively in many cases when it is necessary to relieve neuroinflammation.
  • Licorice root is not only an adaptogen but can also help raise blood pressure, improve immune system function, and reduce inflammation in the body.

Lifestyle changes

  • Diet: It’s important to work with your doctor to determine the optimal sodium intake based on your individual needs.
    • Add extra salt to your food. Snack on high-sodium foods such as olives and salted nuts.
    • Drink enough water to prevent dehydration, which can exacerbate POTS symptoms.
    • Eat smaller, more frequent meals to maintain hydration, blood sugar levels, and energy.
    • Moderate caffeine consumption can help improve POTS symptoms by its stimulating effect on the heart and blood vessels. However, caution should be exercised as excessive caffeine intake can worsen symptoms because coffee is a diuretic and can therefore lower blood pressure.
  • Regular exercise: Engage in a structured exercise program tailored to your abilities. Exercises targeting leg strength can help improve circulation and reduce POTS symptoms. Start slowly and gradually increase intensity under the supervision of a specialist.
  • Sleep: Adhere to healthy sleep habits to ensure quality rest, which is important for overall health.

Other helpful therapies

  • Compression stockings: Using compression stockings can help improve blood flow in the legs and reduce POTS symptoms.
  • Aromatherapy: Some people find relief through aromatherapy, using essential oils such as lavender or peppermint for relaxation or refreshment. These herbs can also be used in teas to help the body cope with stressful situations.

How to manage POTS symptoms

  • Symptom tracking: Keep a journal to identify triggers and patterns in your symptoms, which will help you better manage them.
  • Avoiding triggers: Limit prolonged periods in an upright position or exposure to heat, which can exacerbate symptoms.
  • Psychological support: Seek support from a psychologist or support group members to address the emotional impact of living with POTS.

Can POTS disappear if the underlying problem is treated?

Yes, of course. If you have anemia, raising the level of iron in your body will eliminate POTS symptoms. Even if the problem is genetic, there are cases where connective tissue issues do not cause symptoms. Therefore, it’s important to strike a balance between the demands on the body and its ability to withstand those demands.

Conclusion

In conclusion, I want to remind you once again that there can be many causes, and it’s important to understand what primarily triggers POTS symptoms. If you have celiac disease and you just drink coffee and eat more salty foods, then, of course, it may help for a while, but the situation can get out of control at any moment.

POTS is just set of symptoms; you need to understand what causes them and work on addressing that issue. Even if a genetic component is identified, you can improve the situation with a range of therapies. If there is intoxication present, which, by the way, occurs much more often in people with genetic connective tissue problems, toxins need to be removed. In this case, you always need to be careful about your living environment because you may get intoxicated again by spending a long time in a moldy room. But in any case, it’s not advisable to self-treat until you know the cause of the problem. Always conduct tests and only then seek treatment with a specialist.


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