What is Dysautonomia?
Dysautonomia is a dysfunction of the autonomic nervous system, or ANS. The autonomic nervous system controls all those “automatic” body functions you don’t have to think about, like heart rate, blood pressure, temperature, digestion, respiration and perspiration. There are several types of dysautonomia, including postural orthostatic tachycardia syndrome (“POTS”), which I have. I may use POTS or dysautonomia to describe my condition in this blog, since POTS is a form of dysautonomia. But not everyone who has dysautonomia has POTS. Here’s a diagram to hopefully help you understand:
Not sure why that diagram came out looking like an olive, but you get the point. 🙂
As I only have POTS, this blog will primarily focus on that form of dysautonomia. For information on the other types, visit this website.
What is POTS?
As mentioned above, POTS stands for postural orthostatic tachycardia syndrome. If you break it down, postural = position of the body, orthostatic = standing upright, tachycardia = fast heart rate, syndrome = collection of symptoms. Therefore, POTS literally means fast heart rate while standing. POTS is characterized by an increase in heart rate of 30 beats per minute (bpm) or more upon standing, and/or a heart rate above 120bpm upon standing.
When we stand up, gravity pulls blood towards our feet. Normal bodies respond by making slight adjustments to keep the blood pumping throughout the body. However, for those with POTS, the body has a difficult time counteracting gravity, and as a result, our heart rate increases drastically and the ANS has difficulty controlling blood flow. This results in many seemingly unrelated symptoms.
What are the symptoms of POTS?
As mentioned above, POTS can cause an array of symptoms, many of which seem unrelated at first. This is why POTS sufferers may have difficulty in getting diagnosed. Some of the common symptoms of POTS are:
- tachycardia (fast heart rate)
- digestive problems
- excessive thirst
- frequent urination
- shortness of breath/difficulty breathing
- difficulty regulating body temperature
- light/sound/vibration sensitivity
- blood pooling in the extremities
- visual disturbances
- exercise intolerance
- chest pain
- heart palpitations
- brain fog/cognitive difficulties
- increased adrenaline
How is POTS diagnosed?
POTS is typically diagnosed by a tilt table test. During a tilt table test, the patient is strapped to a table in the supine position. The patient is hooked up to monitors so heart rate and blood pressure can be monitored throughout the test. Once the physician begins the test, the table tilts vertically until the table is about 70% vertical. As the patient is strapped to the table, s/he will not fall and risk injury if fainting occurs.
Sounds like a fun ride, right? However, for someone with POTS, it is an extremely uncomfortable test.
Once the table has been tilted upright, the patient describes any symptoms to the physician. Heart rate and blood pressure are monitored and recorded to detect any changes. The test usually lasts 30-40 minutes, or until the patient faints. If the patient’s heart rate increases by 30bpm or exceeds 120bpm upon tilt of the table, it is determined he or she has POTS.
Is there a cure for POTS?
No, currently there is no cure for POTS. The condition is managed by treating the symptoms.
What causes POTS?
Teenagers who have POTS develop the condition around the time of puberty, thought to be caused by rapid growth. Some develop POTS secondary to another condition, such as Ehlers-Danlos Syndrome (EDS) or Lyme disease. Others develop POTS after sustaining trauma, such as a car accident, surgery, etc. Viruses or prolonged bed rest can also lead to POTS. Some doctors believe some cases of POTS do not have causes. I tend to think something must cause your ANS to stop functioning correctly, but I’m not a medical professional. The cause of my POTS remains unknown.
Does POTS ever go away?
Teenagers or young adults who develop POTS during their growing years may eventually “outgrow” POTS, or if the underlying cause can be corrected/treated, it may eliminate the patient’s POTS as well. However, for most POTS patients, the symptoms will fluctuate, but it will be a lifelong condition.
Who can get POTS?
POTS patients are typically women (4 out of every 5 POTS patients) of child-bearing age. There is speculation that POTS can be genetic and passed from mother to child. It is estimated that 1 out of every 100 teenagers has POTS. As a comparison, the Autism Society reports that 1 in every 88 children has autism. So, while information about POTS may be rare, the condition itself is far from it.
CHRONIC FATIGUE SYNDROME
What is the difference between chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME)?
I use CFS and ME interchangeably. Some think they are separate conditions, but the symptoms and effects are extremely similar. Thus far, the term “CFS” is used more in America, and “ME” is used more in other parts of the world. Personally, I support the name ME or myalgic encephalomyelitis, because I find CFS or chronic fatigue syndrome to be misleading. CFS makes it sound like someone is just really tired, whereas ME/CFS is actually much more than that, as you will see below. So, at least for purposes of this blog, I will use the term ME/CFS.
What is ME/CFS?
There is little consensus among the medical community regarding a proper definition of ME/CFS. This one has recently been proposed (source)
Diagnosis requires that the patient have the following three symptoms:
- 1. A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest,
- 2. Post-exertional malaise,* and
- 3. Unrefreshing sleep*
At least one of the two following manifestations is also required:
- 1. Cognitive impairment* or
- 2. Orthostatic intolerance
What are the symptoms of ME/CFS?
As noted above, there are many varying definitions of ME/CFS. Historically, one definition required a patient to satisfy the following:
Have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis; and
Concurrently have four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours.
Other symptoms include:
- difficulty finding words
- inability to comprehend/retain what is read
- inability to calculate numbers and impairment of speech and/or reasoning
- visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes)
- psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings)
- chills and night sweats
- shortness of breath
- dizziness and balance problems
- sensitivity to heat and/or cold
- alcohol intolerance
- irregular heartbeat
- irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas)
- low-grade fever or low body temperature
- numbness, tingling and/or burning sensations in the face or extremities
- dryness of the mouth and eyes (sicca syndrome)
- gynecological problems including PMS and endometriosis
- chest pains
- ringing in the ears (tinnitus)
- allergies and sensitivities to noise/sound, odors, chemicals and medications
- weight changes without changes in diet
- mental fogginess
- muscle twitching
- orthostatic dysfunction
- frequent sighing (source)
How is ME/CFS treated?
At this point, there is no cure for ME/CFS. Only the individual symptoms can be treated, not the overall condition.
ME/CFS sounds similar to dysautonomia. What is the difference?
Honestly, I don’t know. I was diagnosed with ME/CFS before POTS/dysautonomia. Whether I have both depends on which definition of ME/CFS you use. If ME/CFS involves symptoms that can’t be explained by any other condition, then I don’t have ME/CFS, because almost all of my symptoms are explained by POTS/dysautonomia. However as you can see from the above, the list of symptoms of the two conditions is almost identical. Both conditions affect the nervous system, thus influencing numerous bodily systems, including the circulatory, digestive and endocrine systems. There is quantitative diagnostic criteria for POTS/dysautonomia – an increase of 30 bpm or more when going from supine to standing. ME/CFS still lacks universal diagnostic criteria. Many medical professionals believe there is a correlation between ME/CFS and POTS/dysautonomia. (source) The extent of the correlation is currently being researched.
MAST CELL ACTIVATION DISORDER
What are mast cells?
Mast cells are a type of white blood cells that store a number of different chemical mediators—including histamine, interleukins, heparin, and various enzymes. They can be found in skin, lymph nodes, internal organs, and the linings of the lung, stomach, and intestine. Mast cells are the primary responders in allergic reactions and release histamine in response to certain stimuli.
What is MCAD?
Mast Cell Activation Disorder (MCAD), also sometimes referred to as Mast Cell Activation Syndrome (MCAS) [Note: but NOT referred to as Mastocytosis – that’s something different], is an immunological condition where mast cells do not function properly. Mast cells release histamine and other substances during inflammatory and allergic reactions. Mast cell disorders are characterized by “accumulation of genetically altered mast cells and/or abnormal release of these cells’ mediators”
Symptoms of MCAD include:
- digestive issues,
- abdominal cramping or pain,
- itchy skin, rashes and/or hives,
- chest pain,
- blood pressure changes,
- cognitive difficulties/brain fog,
- shortness of breath,
- lymph node swelling,
- fatigue, and
- general weakness.
How is MCAD treated?
- H1 blockers (antihistamines)
- H2 blockers