Tag Archives: Dysautonomia

Of Mindful Manner

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Our Story
Of Mindful Manner was born out of a need to better represent the individuals of the world who show no outward signs of their illness. Coping with an invisible illness can be frustrating and painful, but these issues are compounded by a lack of knowledge and understanding. Our reason for being is to help enlighten and encourage our friends, families, neighbors, and co-workers to address individuals with empathy and understanding. At Of Mindful Manner we know that what you see is not always what you get, and because of that, each garment is carefully curated to serve as an invitation for conversation. The more conversation that surrounds invisible illness, the less room there is for stigmas, ignorance and misunderstanding.

We want you to know that we see you and we recognize the battle you are facing. There is a whole community at Of Mindful Manner that supports you.

The Founders
Hello, Cassidy & Savannah here! We are so thrilled you have found your way to our shop. We are sisters who have had our lives tremendously impacted by invisible illness. One of us has Dysautonomia and Chronic Migraines. The other one of us has grown up with a front row seat to living with these conditions, and has shared in the burdens they can cause. That’s the thing about invisible illnesses though.. you can’t tell by looking at us, which one of us fits which description.
We know our story is not unique. Nearly half of the U.S. population lives with some sort of chronic illness and 96% of chronic conditions are invisible. So while you may not suffer from an invisible illness yourself, chances are you know one or several family members/friends or co-workers that do. We pray the future holds cures for everyone, but in the meantime we will dedicate our lives to spreading awareness in hopes of making this world a more mindful one.
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What is Dysautonomia?

By Paige Wyant
Staff
Dysautonomia

1.1k 20
Dysautonomia includes a range of conditions – such as postural orthostatic tachycardia syndrome (POTS) or neurocardiogenic syncope – in which the autonomic nervous system (ANS) does not function properly. This can affect major organs and bodily systems, as the ANS is responsible for activities such as regulating internal temperature, breathing patterns, blood pressure, heart rate, digestion, excretion and pupil dilation. The dysfunctioning of these systems can cause a number of symptoms that may have serious effects on your health if not properly managed.
While some symptoms of dysautonomia are clearly visible, such as blood pooling in your legs and feet, many others, such as a racing heart, lightheadedness or an upset stomach aren’t always apparent. To better understand the experiences of those with the condition, we asked our community to share photos that show what dysautonomia really looks like. Everyone may experience different symptoms and forms of the condition, but the following photos show that all are warriors.
Here’s what the community shared with us:
1. “I have to nap daily. Sometimes all I do is wake up, take my medicine and already need to nap. Even napping is exhausting! But having the purrfect nap buddy makes it a bit better!”
Related Stories
6 Symptoms of Dysautonomia/POTS and How They Actually Affect My Life
20 People Describe What It Really Feels Like to Live With Dysautonomia

2. “I have dysautonomia and was diagnosed with neurocardiogenic syncope, autoimmune disease, irritable bowel syndrome (IBS) and more. To help with my bradycardia I have a pacemaker. This picture was taken when I had my first change of pacemaker, after 10 years of being diagnosed. I’m smiling because this is how I fight back. I always try to have the best attitude towards my condition.”

MIGHTY PARTNER RESOURCES
What are dysautonomias?
What we do
Other resources
via Dysautonomia Advocacy Foundation

3. “This was at college orientation tonight (I’m the one on the right). I was having a great time, but when I started dancing I immediately felt my symptoms. My legs got tired and started hurting halfway through a song, and I was too tired to keep jumping. I couldn’t follow the instructions in another song (‘get low’) because I probably would have fallen over. I spent the rest of the night wishing I didn’t have dysautonomia.”
Related Stories
9 Things to Say to a Loved One With a Chronic Illness
When Doctors Told Me My Chronic Illness Was ‘All in My Head’

4. “My 9-year-old diagnosed with dysautonomia, cyclic vomiting syndrome, anxiety and PANDAS. He has trouble controlling his body temperature and has low blood pressure. He is an amazing athlete, especially for all he deals with!”

5. “This day I was completely exhausted and my skin flushing was making me feel very hot. My blood pressure was super high, my heart rate was at 130 sitting and I was miserable.”

6. “I actually have an album in my phone titled ‘doctor.’ I try to take photos and videos of my symptoms, as they don’t always occur at my appointments. I also have a list I continually update so I don’t forget to mention things!”

7. “Weekly IV fluids… one to two liters along with daily Flecianide, fludrocortisone, metoprolol and amolodipine to treat my severe POTS. Cardiac rehab as well.”

8. “This is a photo of blood pooling in my legs because of POTS. It is especially prevalent on my right side because I have problems with muscle weakness on that side due to a traumatic brain injury. This photo was taken after an especially taxing day that exasperated my symptoms. I was experiencing dizziness, lightheadedness, tachycardia and other pre-syncope symptoms. In addition, I was extremely nauseous and had been dry heaving for a few hours prior to this.”

9. “Tilt table results.”

10. “This was the day I received my Master’s degree. My spirit is feeling accomplished and grateful and amazed; my mind is focused on pretense, on pretending I’m not afraid I won’t make it through the ceremony without vomiting, fainting or collapsing. The best part about this day was, of course, receiving my counseling degree; the worst part was wondering whether or not my body was going to allow me to use it.”

11. “I took this picture by accident, but when I realized it was exactly what my world looks like when my dysautonomia is flaring, I kept it.”

12. “This is what happens when I stand up too fast or too long. I have both Ehlers-Danlos syndrome (EDS) and dysautonomia so it takes me a while to get back up when I fall/pass out. I had accomplished school and three choir rehearsals the day this was taken. I was very overdone, but my sweet doggie was making sure I was OK.”

13. “This is me now.”

14. “This is me when a friend wanted to use me as a model for her photography. I was dizzy and lightheaded because it was way too hot outside for my POTS to handle. After this picture I spent 15 minutes laying on the concrete trying to get my heart rate to go down.”

15. “This is what the end of my day looks like and what freedom really looks like. Because I have more freedom attached to an IV pump then I ever did before.”

16. “[This was] last week after accessing my port for the very first time on my own! It will make it so much easier to get fluids this way, plus I can get them more often.”

17. “Lyme-induced POTS. Trying not to pass out when going downstairs. A daily occurrence – multiple times a day. Here I am getting tunnel vision and the “whump-whump” staticky sound in my ears. Time to grab the rail and get my head down.”

18. “I have a few diagnoses, like most of us do, and most of us have dealt with their fair share of testing as well. This was last month. I had to have an EKG to check my heart.”

19. “I can walk, but not long distances. [I can’t] stand up for long without getting dizzy, drop in blood pressure, pre-syncope/syncope, etc… This was on my way to be a volunteer at a summer camp and had a few hours of waiting for the other volunteers. When I am traveling by airplanes I order assistance and borrow a wheelchair at the airports. Borrowing a wheelchair makes travel and shopping easier to overcome. Yes, it is exhausting to use a wheelchair as well, but I don’t have the same big risk of falling because of syncope or seizure and I still use less energy sitting in the chair than walking. It is a solution to the bad days I need to get out or am going somewhere to travel, but am I able to go without I will.”

20. “I was in the middle of nowhere at camp and I got one of the dysautonomic events. I started vomiting. This is what I ate all day – a hummus sandwich and electrolyte water – while everyone else enjoyed juice and normal water.”

21. “For me, life with dysautonomia means running IV fluids every day. Even before a birthday party, just so I can stay upright!”

22. “I have POTS. This was taken right after I had a bad syncopal episode in a grocery store. As you can see, my feet are bright red because of the blood pooling in my legs. I had to lay on the grocery store floor until it passed. This happens often enough that I now get one to two liters of IV fluid daily to increase my blood volume, and now use a wheelchair for shopping and community mobility so I don’t pass out and hit my head!”

23. “After pacemaker surgery for gastroparesis and POTS.”

24. “One of the worst POTS episodes I caught – well, before I was diagnosed. This was my norm for most of my life. My heart rate could spike as high as 150 – just standing. I felt like I was going to die when this picture was taken. I could barely stand, barely breathe. I was shaking all over and weak. I had to fight every second to get my diagnosis. I’m doing better now, but it’s only barely controlled by several medications (I’m one for whom water and electrolytes and salt do nothing, whee). I also have esophageal and intestinal dysmotility and possibly mild gastroparesis, which my GI says is probably caused by my dysautonomia.”

25. “This is a photo of what people see almost every day. I work so hard to try and look OK. Whether it’s with makeup or other things to distract from the fact that I really feel completely awful. My friend took this picture and while I look perfectly fine, I could feel my heart beating in my chest. My legs were turning purple, I was dizzy and nauseous. All I wanted to do was lie down and take a nap. But if I were to do that every time I felt this way I would never leave bed. So I put on this face. This is the face of dysautonomia.”

26. “I felt the lowest in this picture. I had been in the hospital for about a week and it had taken a toll on me. I used music to help soothe me and my mom sat there and sang with me. Dysautonomia can be extremely difficult to live with at times but I just keep reminding myself that there are better days ahead!”

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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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