Category Archives: chronic fatigue

What is Dysautonomia?

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.

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
  • nausea
  • pain
  • migraines
  • excessive thirst
  • frequent urination
  • hypotension
  • hypertension
  • lightheadedness
  • dizziness
  • shortness of breath/difficulty breathing
  • difficulty regulating body temperature
  • light/sound/vibration sensitivity
  • blood pooling in the extremities
  • visual disturbances
  • fainting
  • exercise intolerance
  • fatigue
  • chest pain
  • heart palpitations
  • weakness
  • brain fog/cognitive difficulties
  • anxiety
  • increased adrenaline
  • insomnia

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). Others develop POTS after sustaining trauma, such as a car accident, surgery, etc. Viruses or prolonged bed rest can also lead to POTS. It is suspected that my case of POTS resulted from a virus I picked up while studying in the Czech Republic, although there is no way to confirm that.

Does POTS ever go away?

Teenagers or young adults who develop POTS during their growing years will likely eventually “outgrow” POTS. For others it may be permanent.

Who can get POTS?

POTS patients are typically women (4 out of every 5 POTS patients) of child-bearing age. 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.

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. Personally, I support this one:

ME/CFS is a severe, complex neurological disease that affects all body systems. It is characterized by a profound dysfunction/dysregulation of the neurological control system and results in faulty communication and interaction between the central nervous system and major body systems, notably the immune and endocrine systems, dysfunction of cellular energy metabolism and ion transport, and cardiac impairments. Its cardinal symptoms include a pathological low threshold of fatigability that is characterized by an inability to produce sufficient energy on demand. There are measurable,objective, adverse responses to normal exertion, resulting in exhaustion, extreme weakness, exacerbation of symptoms, and a prolonged recovery period. (source)

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
  • rashes
  • ringing in the ears (tinnitus)
  • allergies and sensitivities to noise/sound, odors, chemicals and medications
  • weight changes without changes in diet
  • light-headedness
  • mental fogginess
  • fainting
  • muscle twitching
  • orthostatic dysfunction
  • seizures
  • 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.

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Musings of a Dysautonomiac

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Accident’s and Menieres

 

Adventures with Fatigue in the Aftermath of an Avocado Disaster

This is going to be a tough one…

The sentences just don’t want to flow. My brain feels likes like mush, and fatigue steals the words off my tongue.

But I expected it this time. In fact, I even tried to prepare for it. Yet here I sit, dizzy, and exhausted…after a full night’s sleep, at 11:00 am. It’s been a hard week to say the least, and this time, Meniere’s is not to blame. Well not directly.

It all started with a simple accident, one careless moment while preparing dinner several weeks ago.

I was in my kitchen on a Friday night, and had decided to cut up an avocado. I sliced it in half and began to cut out the pit, when the knife slipped and went straight into my left thumb. It was a small cut, but it went in deep, and I immediately knew something was very wrong.

As I ran my thumb under the faucet, I couldn’t feel anything. The top of my thumb was completely numb. I sealed the cut closed with liquid bandage and hoped for the best.

A week later, the cut was almost healed, but I still had no feeling in the top of my thumb. I decided to see a doctor. After considerable searching for a local orthopedic hand specialist who accepted my insurance, I was able to book an appointment for the next day.

I’ve had trouble finding good doctors in the past, but this time I got lucky. The doctor couldn’t have been nicer or more patient. He answered all of my questions, but after an X-ray and physical exam he broke the bad news.

I had damaged one of the nerves in my thumb, possibly severed it, but there was no simple way to tell. He explained that there are no tests sensitive enough to be able to see the damage on a nerve that small. The only way to know for sure, and fix it if need be, was exploratory surgery.

The situation had escalated so fast. My doctor explained that, depending on the severity of the damage, the feeling might come back on its own, but there was a chance it never would. And even if it did, scar tissue could develop around the nerve and cause problems later in life.

I also didn’t have a lot time to make a decision. The longer I waited, the less effective surgery would be. I decided later that night that if I didn’t get the surgery, and the feeling never came back in my thumb, I would always regret it. I scheduled the surgery the next day.

A Complete and Total Loss of Momentum:

This was my second surgery in the last year alone. About nine months ago I had to have a surgery to repair a hernia. So I had a rough idea of what to expect this time around.

After my hernia surgery, I had a really difficult time. I was hit by a mountain of brain fog, fatigue, and dizziness that had threatened to crush me. My Meniere’s symptoms had returned with a vengeance. The accompanying exhaustion, boredom, loneliness and resulting depression had lasted for weeks.

But when I started to feel better, I realized what had happened, and I learned something incredibly valuable:

One of the most powerful forces in treating Meniere’s disease is forward momentum.

Before I had my hernia surgery, I was working on exciting projects, exercising and meditating every day, and eating a healthy diet. I had so much momentum behind me.

But then I had the surgery. I was in pain, doped up from the meds, eating comfort foods, and laying around all day. When it came time to transition back into my life, I was stuck.

It was the first time since becoming diagnosed with Meniere’s disease that I had reached a point of complete inertia. I’ve had my share of setbacks over the years, but I had never been so completely out of commission. It took me a long time to find my way out of the hole. It took so much effort to get the ball rolling again.

So when I scheduled the surgery for my thumb, I wanted to try to avoid a repeat of the aftermath of my last surgery. I made a plan, and although I’m having a tough time, it’s nothing like it was before.

Time for Action:

Life always gets in the way. We not only have to face the adversity of Meniere’s disease itself, but we also have to face adversities with Meniere’s disease. Often, we have to deal with both at the same time. But every once in a while, we know what’s coming, and we get a chance to prepare.

My avocado disaster was ultimately an accident, but the damage was done. All I could do was accept that it happened, and get it taken care of. This time though, I knew the challenge was to prevent inertia.

After my hernia surgery, the brain fog was so thick I could barely function. It dragged on for so long. I was starting to lose hope. At some point I realized that it wasn’t going to improve on its own. I needed to do something, anything, to try to get better. It was time to take action.

I focused what little bit of energy I had on two key tasks: creativity exercises and rebuilding my routine.

For years I have used creativity exercises to combat brain fog, and it would always help. But I hadn’t done it for weeks and I knew I needed to up the stakes. I decided to push myself to try something completely new and I started writing creative short stories in response to writing prompts on Reddit. (Click here to read one of my short stories)

It was hard, really brain-achingly difficult. But I would finish a story and for a short while I would feel amazing. I had created something new and accomplished something I never knew I was even capable of. And the fog slowly started to lift. Every day I felt a tiny bit better.

I also started to try to rebuild my routine. I started eating my meals at the same time again, and I cut out the junk food. I couldn’t exercise, but I started going to bed and waking up at the same time every day, making sure to get 9 hours of sleep. It was an agonizingly slow process, but eventually I bounced back.

To keep up momentum after my thumb surgery, I knew what I had to do. I kept the junk food to a minimum. I went to bed early and got more sleep than I usually do. And I kept up my daily creative practice. As hard as it has been to write, I am feeling better now than when I first started writing this article.

Despite my best efforts, it has still been a hard week. But I am grateful to have learned my lesson the first time around. I was prepared and that preparation paid off. After only a week, I am already starting to feel better.

I hope I don’t need surgery again for a long time, but I know that at some point, somehow, something will go wrong. And when it does, I’ll be ready.

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