POTS Patients Must Follow Stay-At-Home Order

Last year, I finally came at peace with the fact that I have postural orthostatic tachycardia syndrome (POTS). I got diagnosed with this illness in 2018 at the height of my career as a marketing consultant. The news hit me so hard that I soon fell into depression, and it did not feel like I could continue living again.

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But my family and doctor this never lost hope in me. My parents stayed in my house for the most part, while my doctors called me to check on how I was doing. My bitterness started to dissolve gradually until I no longer felt like ending my life. Soon enough, I was able to accept that POTS would forever be a part of me and that I would have to work around it.

I picked myself up and contacted my old clients so that I could work from home. This setup was more ideal for me than going back to the office because I did not need to push myself to get up when I was hurting. I managed to regain my social life, too, and even attend some parties.

However, my life changed again when the governor of California ordered us to stay at home amid the coronavirus outbreak. The regulation was notably stricter for me than anyone else because I was technically immuno-compromised. I had to get my groceries delivered; none of my friends could visit me.

Did it sadden me? Yes, of course. But did I wish there was no quarantine? No way—not with the coronavirus still on the loose. Here’s why I won’t ever break the stay-at-home order.

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It Is Safe At Home

Your house is the best place to be at the moment—walls shielding you from the people who may be carriers of the virus. You are not brushing against strangers who may not even know they have it, either.

Because of the POTS, it is effortless for you to catch the coronavirus. But there is no need to keep on thinking if you already have COVID-19 if you avoid going out.

I Don’t Have A Death Wish

That’s correct—I have no dream of dying before I even turn 40 years old. Perhaps during my depressed days, I did; however, it’s very well at the back of my head at present. I love the life that I have, even though it does not seem too exciting for other people.

This is the reason why quarantine is ideal for me. I can imagine myself contracting COVID-19 in less than an hour of staying outside. If POTS’ extreme symptoms have not killed me before, the overlapping effects of the coronavirus may do it.

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It Saves Everyone From Worrying

I heard from the news that COVID-19 patients were not supposed to accept visitors wherever they might be. Their parents, siblings, and close friends, therefore, had no other choice but to talk to their infected loved ones online. However, we all know that it does nothing to reduce their worries.

Now, I am aware that I already brought a lifetime worth of stress to my parents when I developed depression after my POTS diagnosis. They no longer need to go through that again, so it is best not to risk my health by breaking the stay-at-home order.

Final Thoughts

I feel a deep sense of appreciation for life now more than ever. Sadly, a lot of people have not been so lucky to get away from or win against the coronavirus. However, those of us who do not have COVID-19 have an opportunity to avoid becoming new hosts of the virus by staying at home. Thus, whether you have an incurable disease like me or not, follow what the governors tell you to do at this time.

Living With Dysautonomia – Dysautonomia Live

Do you or someone you know is diagnosed with an autoimmune disorder and they have to start living with dysautonomia?

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There used to be a time when I dealt with so much pain every day, and no doctor in the local hospital in our small city could tell me its cause.Living with dysautonomia disrupted my life for months and kept me from doing the things I loved. Then, someone suggested going to a specialist. And what did they find out?

The 2017 MSA Conference happened in Nashville, Tennessee, and was the Annual MSA Patient and Family Conference.  Around 200 families attended the event, and 2000 people streamed it online. This event put more emphasis on updates about Multiple System Atrophy (MSA) of the critical advances in the study of the disease, including treatment.

There is no definitive test for dysautonomia. The condition is often diagnosed by taking a thorough medical history and ruling out other medical conditions with similar symptoms. People living with this condition struggle to get up in bed. They have problems with focus, practice, and management. As a result, they should eat a healthy diet and avoid caffeinated beverages. They should also veer away from exhausting events. Increasing awareness about living with dysautonomia can help save lives.

How Does It Feel Living With Dysautonomia?

Living with dysautonomia means undergoing the necessary treatment for dysautonomia, according to healthcare providers. This also means dealing with the stress, anxiety, and physical symptoms of the condition. However, a patient that is dealing with the condition is not simply managed with medications. Because someone with the illness may suffer from recurring thoughts, worries, and depression, it’s equally important to consider their wellness and manage their stress (through yoga, healthy nutritional food, standing exercises, etc.) to their benefit. This is where therapy can help someone with a condition like dysautonomia.

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Therapy Treatment For People Living With Dysautonomia

Therapy for a primary condition like postural orthostatic tachycardia syndrome (POTS) or dysautonomia is different from taking medication. It can show you ways to relax, perceive situations in a new light, and generate better coping and problem-solving abilities. Anxiety disorders vary considerably, some of which are a result of other issues like high blood pressure, fainting spells, dizziness, poor food choices or diet, lack of friends, limited walking or exercise, not treating diabetes, nausea, or chronic fatigue in my case. So when seeking therapy from physicians for someone managing autonomic nervous system dysfunction, it should lead toward your affected forms, severe cases, and diagnosis.

Dysautonomia is a condition that can cause headaches, dizziness, and fainting. People with the condition are unable to regulate their blood pressure and heart rate, which can make it hard to stay upright or even lie down. There are many different types of dysautonomia, but all share some common symptoms, concerns, progress, and treatment options. There is no cure for dysautonomia, but there are reviewed ways and tips to manage and cope with the condition and improve your ability. Acupuncture is an example.

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Cognitive Behavioral Therapy (CBT) For Dysautonomia

Considered a widely used approach, it has shown effectiveness in the alleviation of panic disorder, social anxiety disorder, and phobias, among many other conditions. Patients with MSA tend to develop mental illnesses. Thus, CBT can help address distorted perceptions of the way many people with dysautonomia look at the world and themselves. It mainly involves two components:

Cognitive Therapy For Dysautonomia

Examines the contribution of negative thoughts to your dysautonomia-induced anxiety.

Behavior Therapy For Dysautonomia

Examines your behavior and help in handling the situation.

Exposure Therapy

People with Multiple System Atrophy (MSA often experience anxiety. A patient with dysautonomia depends on inconvenient actions to avoid symptoms of fear, and it’s only natural to avoid the things that scare you. However, the problem with this behavior is you never get the opportunity to overcome and walk past it. You can be stuck with fear and do irrational behaviors all your life to evade it, according to doctors.

Exposure therapy allows you to confront your fears. Its objective is to expose you to it numerous times until you gain control over your fear.

Thoughts On Dysautonomia

Primary dysautonomia is an umbrella term that can affect the peripheral nervous system or sympathetic nervous system and the physical health of familial patients chronically and progressively. It adversely affects the mental health of dysautonomia patients and increases brain fog and chronic illness symptoms and likely reduces blood flow and high heart rate if you don’t make vast improvements to raise awareness about this medical condition and other autonomic disorders. However, the diagnosed condition won’t be as difficult to cure as it may seem based on research body if you have proper support systems and treatments from healthcare professionals (for example, a physician) in your daily life.

Dysautonomia therapy methods such as talk therapy can ultimately help identify sores in the muscles caused by disorders in the nervous system. So, it’s important for you not to lie to your therapist about your medical history. Give your therapist access to your experiences. Make lives count.

Living With Dysautonomia FAQs

  1. Can you live fully with dysautonomia?

Absolutely, it is possible to lead a fulfilling life with dysautonomia syndrome. While the condition can present challenges, individuals with dysautonomia can thrive by working closely with healthcare providers to manage symptoms through medication and lifestyle modifications. Building a strong support network, practicing self-care, setting realistic goals, and connecting with others facing similar challenges are essential components of living fully with dysautonomia. Prioritizing overall health and well-being is key to achieving a satisfying and meaningful life despite the challenges posed by dysautonomia.

  1. What worsens dysautonomia?

Dysautonomia symptoms can be worsened by various factors, although triggers can differ from person to person. Common exacerbating factors include dehydration, heat, stress, physical exertion, infections, certain medications, alcohol, caffeine, prolonged standing or sitting, high-sugar meals, and hormonal changes.

  1. How does an individual with dysautonomia feel?

Dysautonomia is a condition characterized by dysfunction in the autonomic nervous system, leading to a wide range of symptoms. Individuals with dysautonomia may experience dizziness, fatigue, heart rate blood pressure irregularities, digestive problems, temperature regulation issues, exercise intolerance, cognitive difficulties, and psychological symptoms such as anxiety and depression. The specific symptoms and their severity can vary widely, requiring a thorough medical evaluation for diagnosis and individualized management.

  1. What is the role of the neurologist in autonomic dysfunction?
  2. Is a person with autonomic dysfunction considered disabled?
  3. What are the different types of dysautonomia?
  4. What can cause autonomic dysfunction?
  5. What kinds of mental health professionals can manage dysautonomia?
  6. What type of dysautonomia is life-threatening despite lifestyle changes?
  7. What is the lifespan of people with dysautonomia?
  8. What organs are affected by dysautonomia?
  9. Can you fully recover from dysautonomia?
  10. How disabling is dysautonomia?
  11. What triggers dysautonomia?
  12. Why do people get dysautonomia?

Cognitive-Behavioral Therapy For Dysautonomic Syndrome: Will It Work?



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Transforming one’s thoughts will ultimately result in positive actions and behaviors in difficult moments. — Greta Gleissner LCSW


Dysautonomia comes in various forms such as POTS, MSA, and NCS, but it brings forth the same feelings of frustration, anger, and hatred to the person who finds out they have this disease. Consoling them and saying that everything will be okay isn’t okay since it’s difficult to gauge their daily struggles because of it. Besides, how can they readily accept that the rare chronic illness may stay with them for as long as they shall live?

That is the reason why many dysautonomic patients develop anxiety, depression, and other psychological disorders. Luckily, assistance in the form of cognitive-behavioral therapy (CBT) isn’t too challenging to discover these days. Psychiatrists offer this treatment, whether you go to a regular clinic or in an online platform. The only standing question is, will it work for people with dysautonomia?


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Below are some of the things to learn from CBT.


  1. Accept The Condition Fast

As asked earlier, how easy is it to continue living with the fact that you have a disease that doctors most likely cannot cure now? Someone who doesn’t have a similar issue cannot possibly fathom its difficulty. One day you’re feeling great, in the next hour, your heart beats so fast that your other organs cannot keep up.

Through CBT, the counselor will help you see dysautonomia as something manageable. Remember, nothing will break you unless you allow it to do so.

You need to repeat creating these new thoughts and behaviors many times before you create new circuits in your brain. — Robert Taibbi L.C.S.W.

  1. Handle The Symptoms Well

As a recurring illness, dysautonomic syndrome patients tend to experience the symptoms regularly, especially when several factors trigger it. The dizziness and chest pain may be bearable if you’re at home with zero stuff to take care of, of course. However, in case you have a small child depending on you or a career to maintain, the setbacks that the illness creates can take a toll on your well-being.

It is impressive, therefore, that a cognitive-behavioral therapist can teach you some coping mechanisms to handle your symptoms well. Though the ideas cannot remedy your problem per se, it may prevent you from going down the rocky road of depression or anxiety.


  1. Reduce Stress In Different Life Aspects

Whenever you’re in pain or feeling frustrated about the illness, it isn’t shocking to hear that you yell at your loved ones or distance yourself from them or avoid going to work. In a troubled individual’s mind, their actions are justifiable since the others are healthier than them.

The reality, however, is that you need these people more now than ever. They will support you in any way possible. A stable job is essential as well as your wage will let you try new treatments to cure your dysautonomia hopefully.

Considering you want help in realizing that, get cognitive-behavioral therapy. The sessions can assist you in eliminating stressors even in the future. That may also be beneficial in lessening the symptoms of the disorder.


4.Improve Your Way Of Thinking

For folks who carry a chronic disease, it’s common to think that they are worthy of no love. Others assume that they are already useless in the office or, worse, it’s better if they take their lives.

You ought to know this instant that although dysautonomic syndrome is quite rare, there are still hundreds or thousands of individuals with this illness. For sure, they struggle as much as you do due to the condition, or perhaps even more. But giving up is at the bottom of their priorities since they believe that dysautonomia isn’t connotative to the end of the world.

That’s something you will understand during CBT too.

We feel safer when the use of our own two feet is unrestricted. — Tom Bunn L.C.S.W.

  1. Boost Confidence

People with chronic illness aren’t strangers either to shame, failure, and various negativities. In fact, they may feel it more every time they have to cut a meeting short or bail out on a planned trip when symptoms attack. They can’t force their bodies to function differently in such instances, so their confidence level may keep on dropping until they no longer have the will to talk to others.

What a cognitive-behavioral therapist can do is help you see your value as a person. Some individuals have more severe issues to handle, e.g., abuse, trauma, cancer, and diabetes, yet they can keep their chin up while speaking to people. If they can do that, then there’s no reason for you to remain in the shadows forever.


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It is undoubtedly a hardship to live with dysautonomia – or any chronic disorder, for that matter. But the thing is, a physical condition does not stay in the same level for long. The longer you carry the illness, the more it can affect your mental and emotional states. Hence, you should consider getting cognitive-behavioral therapy to manage your well-being.


The Significance Of Mental Help In Chronic Illness

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Individuals who are diagnosed with terminal illness and chronic medical conditions can sometimes go into major depression and may need psychological support. It is relevant while they obtain treatments to manage their physical problems, they also need substantial psychological and emotional interventions to help them cope.


After being diagnosed with Type 2 diabetes mellitus, Sandra is left with more questions than answers with her present situation. Individuals who finally receive the final diagnosis of what’s going on with their body will find it hard to fathom the uncertainty that lies ahead of them.


What now? Am I going to die soon? What should I do in order to survive this? These are just a few of the things that will trouble them.

Can you tell that you are going down some rabbit-hole of worry? How do you talk to yourself when you’re feeling depressed and feel that you can’t get out of bed? — Robert Taibbi L.C.S.W.

What is Chronic Illness and how people cope?


Chronic illness is defined as a medical condition that lasts for a longer time, usually 3 months or more. Examples of medical conditions that are considered chronic are diabetes mellitus, rheumatoid arthritis, heart disease like hypertension, kidney disorders, HIV/AIDS, lupus, multiple sclerosis, chronic pain disorder, stroke and paralysis, and much more.


At first, there will be a denial of the new information. Reactions such as “This can’t be happening to me right now” or “I’m too young.” are usually the first emotions to show. The feeling is a way of coping with the negative information that is highly not favorable to the person.


Source: lifescript.com


This will be followed by anger towards anything or anyone. At this time, the person tries to project the unwanted information by being hostile. Because in the first place, she is just more vulnerable, confused and frustrated.


As the person comes to terms slowly and proceeds to the treatment process, there will be some form of bargaining. Mostly internal and in the spiritual level, the person will make amends holding on to the notion that there is still a chance to make things go right again. Statements like “If I make this through this treatment, I’ll do everything to be a good wife and mother.”

 CBT and insight therapies rely on the left brain which, compared to the right brain, is emotionally fragile. — Tom Bunn L.C.S.W.

In the midst of all these emotional turbulence, the most devious reaction would be depression. For some, it can be very obvious like having no appetite, showing no interest in usual activities, crying spells, lack of energy and other related manifestations of depression. While others are able to mask their depression and if not detected can result in suicides.


The inability of the person to cope and adapt to any effects of illness does not only affect the person, but it can also create an impact to the family, friends and other individuals related to him or her.


Impact of Chronic Illness


Certainly, the normal and usual routine will now be altered. There will be changes in the activities of daily living like arranging and going to appointments with several doctors and doing therapies. The person may not continue to work due to medical concerns or may not be able to attend social functions anymore. The present condition has created a new world for the person. Sometimes, they feel like they are being isolated or cast away on an island. This is where mental and emotional problems arise.

Transforming one’s thoughts will ultimately result in positive actions and behaviors in difficult moments. — Greta Gleissner LCSW

Why is it important to seek mental help?


By seeking mental help, the person can explore ways to help address and resolve any troubling feelings as he or she is slowly adjusting to the new chapter of his or her life. Mental health professionals are the right people to consult and to ask for specific interventions to guide them as they face this ordeal.


The support and presence of the family and significant others are also important in this phase. They will serve an important role in the recovery and rehabilitation process that the person is undergoing. As mentioned earlier, family and friends are not spared from the psychological impact of chronic illness. They can also benefit from the mental health professionals’ therapy sessions with the patient.


Source: lifescript.com


Aside from a one-on-one consultation with a therapist, the person can also benefit from joining any support groups or attending a group therapy where they are able to share and learn from other individuals having the same medical condition.

Tips On Supporting Your Spouse During Their Battle Against Dysautonomia 

In a relationship wherein one half of the couple has dysautonomia, a condition that the medical world cannot fully understand or cure, it is not only that person who’s having a hard time. Their healthy significant other suffers as well, but not because he or she feels tired to care for the ill spouse. The most likely reason is that it is difficult for them to see the love of their life go through such misery and never have the means to take away their pain. 


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 This is about increasing your own awareness of how you think, what you do when you are stressed, anxious, depressed, in pain. — Robert Taibbi L.C.S.W.

If you can identify with that circumstance, please don’t bother to hide it. Every loving individual will feel that way, especially when their husband or wife’s disease is recurring. However, what isn’t true is the thought that you cannot ever help your spouse deal with the health issue. 

Check out the tips on how to support your better half during their battle against dysautonomia down below. 


The first thing that you need to remember is that you can always ask your spouse concerning their mood that day or whatever you do not understand about the disease. You should never be afraid to do that, thinking that it might hurt his or her emotions. Your unwillingness to ask questions may even make them assume that you do not care, which isn’t a terrible lingering idea for couples. 


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In case you have a talkative husband or wife, you will not have difficulty in letting them realize that they can talk to you about everything they are feeling. That person will do it without much prompting, no worries. However, if your better half is usually silent regarding the illness, and then he or she speaks up all of a sudden, you ought to listen to him or her well. It is the only way for you to figure out what’s going on in their head before, during, and after a painful episode. 

Transforming one’s thoughts will ultimately result in positive actions and behaviors in difficult moments. — Greta Gleissner LCSW


Most chronic diseases luckily take some days off too. Meaning, there will be times in which you can both act as if neither of you has a disorder that keeps on coming back and go on adventures together. To make such occasions extra memorable, therefore, you should plan what places you will visit or what activities you will try months or weeks before that. 


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Last but not the least, support your significant other in any way possible. If he or she wants to try a new activity, say yes to it. If there’s a blockbuster movie he or she wishes to watch, go for it. Moreover, in times of ordeal, though the spouse may not want you to see him or her in that state, ensure that they know you are around whenever they need anything. 

Some persons have good enough executive function that they can quickly mobilze CBT strategies and keep arousal from rising to the point where their cognition is overwhelmed. — Tom Bunn L.C.S.W.

When you have a till-death-do-us-part type of relationship with your spouse, there is virtually nothing that can stop you from being there for him or her through thick and thin. Sometimes you may argue or get frustrated with each other, but that is normal for any married couple. What matters is that you will not leave your better half during their fight against a chronic illness like dysautonomia. 

10 Mantras To Boost Your Relationship With Yourself



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Transforming one’s thoughts will ultimately result in positive actions and behaviors in difficult moments. — Greta Gleissner LCSW

A healthy individual can use image training all day long, but he won’t still be able to imagine what it’s like to have an illness like dysautonomia. How can it happen when you’ve never had food change its course on the way to the stomach or your heart hammering in your chest even though you’re resting for hours?

To tell you honestly, going through such occurrences for the first time may invoke a feeling of annoyance within yourself. You might think, “What sins did I commit to deserve this ordeal?” or “When will it ever end?” But the grim reality is that it may never end. You can only work around it; that’s why the lesser amount of time you spend looking for something to blame for your condition, the better your life will become.

In case you’re unsure of how to move in that direction, you may start by boosting your relationship with yourself through the ten mantras below.


  1. I’m Lucky To Wake Up Today

As miserable as it may sound, many aren’t lucky enough to see the next morning. Thus, despite having the disease, you’re still fortunate to be awake and alive.


  1. My Illness Won’t Weaken MeFor Long

You can’t help it when the symptoms of your illness flare up and cause you to take several steps back. But once they subside, you should be able to stand up again on your own.


  1. I Choose To Stay In The Present


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As mentioned earlier, it’s inadvisable to dwell on the past and worry about how you ended up in that situation. Even your specialist can’t offer an exact response to that; thus, you better live in the moment instead.

Unlike other approaches the source is not in your past but what happens in the present, in your brain. — Robert Taibbi L.C.S.W.

  1. Giving Up Will Never Be An Option

A quitter, as you know, never wins a thing. You won’t reap benefits from giving up. If you want to see progress in yourself, you have to work hard for it.


  1. I’m Trying My Best

While the illness may not have a long-term cure, it does not entail you can’t try different approaches to get rid of your health condition hopefully. Whether you succeed in controlling your problem or not, what matters is that you tried your best.


  1. My Mind Is Powerful

What you think of is what you’ll get. So in case you wish to feel great, you should picture that out precisely, and you’ll eventually achieve it.


  1. I Thank Each Cell In My Body

Yes, you ought to appreciate every cell that makes up your body. There may be days when you experience unimaginable pain, yet there are more days in total wherein your life is as healthy as possible. That’s due to those cells, no less.


  1. I Deserve To Like Myself

You’re hurting your chances of feeling well when you hate being you. It’s okay to admire yourself in front of anyone and do the things that fill your heart with joy.


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  1. This Life Is Mine

Saying this statement may allow you to remember that you are the only one who can rule your life, not any disorder you may have.

Certain relational moments cause the release of oxytocin, which inhibits the amygdala, preventing the release of stress hormones. — Tom Bunn L.C.S.W.

  1. I May Be Imperfect, But I’m Enough

The disease may make your way of living diverse from others, yet you’re still complete. Thinking of the opposite will make your detractors happy, so try to refrain from doing that.


Doesn’t reading all the mantras above make you want to mend or improve your intrapersonal relationship? Though it may be a struggle at times – mainly if the doctor diagnoses you with a disease that may not even have a definite cause or cure – you ought to give yourself a break. No one wanted you to develop a chronic illness; you surely didn’t ask for it either. But it’s already there, so all you can do is ensure that your life won’t stop moving because of it.

Feel free to recite the said mantras until you believe them 100%.


How To Support Someone With Dysautonomia


source: themighty.com


Dysautonomia disorders can be extremely difficult to live with and can not only take a physical toll, but also an emotional toll in someone’s life. Sometimes, it can leave partners, friends, and families of people with a diagnosis of dysautonomia lost as they watch their loved one spiral and suffer not knowing what to do. If you have someone in your life experiencing a type of dysautonomia, there are a number of ways you can support them. This article outlines a few of the ways you can do this.

Transforming one’s thoughts will ultimately result in positive actions and behaviors in difficult moments. — Greta Gleissner LCSW

Talk to one another


source: themighty.com


It is important that you continue to keep the lines of communication open. Sometimes, when people are having a hard time, they may tend to withdraw and even push people away. It is important that you don’t allow them to do this as it will leave them with no support. This involves more than simply talking to them about their illness. You also need to:

  • Listen
    • Be there when they need someone to talk to, listen to their concerns and show empathy.
  • Empathize 
    • Be very careful in how you respond to their concerns and symptoms. One of the problems with dysautonomia is that it is inherently difficult to diagnose. The symptoms are not always physically obvious. Often times, people feel that it is “in their head”. If you try to suggest that you know exactly how that person is feeling, they are likely to feel invalidated and demoralized. They may see you as someone who does not take them seriously. Try to focus more on expressing how difficult you realize it must be for them, rather than telling them you know how it feels to be tired or feel sick.
  • Show interest
    • Actually, take in the information they are telling you about the illness and ask questions. It is important that you have a true understanding of what it is, the treatment, symptoms, side effects and long-term outcomes in order to provide support. Taking an interest in yourself, and even suggesting that you would do some research together, might be helpful too. Use your loved one as a guide here. However, they may be overwhelmed with the information they have received so far and may not be ready yet to seek out for more.

Obviously, what makes it different from psychodynamic, insight-oriented, past-oriented approaches is a focus on the present: What are you thinking about right now? — Robert Taibbi L.C.S.W.

Be patient

Be aware that experiencing a dysautonomia can place a lot of limitations on someone’s life. As we mentioned above, your loved one may become overwhelmed and even go through a grieving process when they grieve the loss of their previous healthy life. Be patient during this time. They are unlikely to be able to push themselves physically like before. This will likely impact their social, household and work commitments. Being aware of this, and the fact that it is not simply “laziness” or them trying to be difficult, is very important.

Look after yourself


source: opencolleges.edu.au


We’ve all heard it before, you can’t be of any help to someone if you are not okay yourself. This is true. When supporting someone through a difficult time, you also need to ensure you have a good support system around yourself as well as ways that you can “de-stress”. Things that can help with this are joining a support group, making sure you keep up with your own hobbies and interests, leading a healthy life and having some time for yourself personally.

In spite of diligently maintained thoughts that flying is safe, emotion does not follow suit. — Tom Bunn L.C.S.W.


Know that they are likely to not only be grieving the loss of what they used to be able to do, but they may also feel guilty about not being able to do these things. Check in with them if you notice they may be doing too much. Let them know that it is okay to take a step back and have a rest. When this happens and you have the capacity yourself, see if you can do some of these tasks for them such as doing extra chores around the home for your partner or dropping off some groceries to a friend.

Most importantly, tell them you love them often. They will feel as though they have changed. But, knowing that you still accept and love them regardless of their illness will be the best support you can possibly provide.

For more information on supporting someone with dysautonomia please see the links below.




Supporting Relationships Through Chronic Illness

When You Love Someone With Postural Orthostatic Tachycardia Syndrome



What are the different types of Dysautonomias?

As we have outlined on our other pages, dysautonomia is the name used to describe a number of disorders where the nervous system no longer works the way it should. This means that there are a number of different types of dysautonomia. Each type of dysautonomia differs in terms of the type of symptoms experienced. Before you can begin treatment, or even when you are trying to support someone else with a diagnosis of dysautonomia, it is important to have a good understanding of the type of dysautonomia you are dealing with. As there is such a vast array of different dysautonomias (at least 15), we won’t be able to discuss them all. However, this article will give you a quick rundown of the most common dysautonomias.


Source: theoicenter.com

Over the years others have focused more on behaviors — while you can’t directly control what you feel (you can’t right now make yourself happy) you can learn to control your thoughts — what you say to yourself — and you absolutely can control your behaviors. — Robert Taibbi L.C.S.W.

The most common…. Neurocardiogenic Syncope
Neurocardiogenic syncope can be called NCS for short. The symptom that is most prevalent within NCS is fainting (which is also called syncope). Generally, what happens in the body is that when a person stands up, the blood will naturally flow downwards — heading towards their feet and legs. For most people (those without NCS), the automatic nervous system (the system involved in dysautonomias) will take measures to make sure that the blood will not pool down in the lower parts of your body so there is still a good amount of blood fueling your brain. This is done by tightening the muscles in your veins and adjusting your heart rate. However, because dysautonomias involve problems with the automatic nervous system, this process tends not to work properly for people with NCS and as a result of blood draining away from the brain, they faint. The frequency of fainting can vary between people with NCS and can range from relatively rarely, to so regularly that it makes daily living difficult.

However, the autonomic nervous system tends not to work properly for people with NCS. As a result, the blood is drained away from the brain that causes fainting. The frequency of fainting can vary between people with NCS and can range from relatively rarely to regularly which makes daily living difficult.


Postural Orthostatic Tachycardia Syndrome

Source: clinicaladvisor.com

That is a mouthful, right? Postural orthostatic tachycardia syndrome can be called POTS for short. This is a dysautonomia that is characterized by a number of different symptoms including strange or fast heart rate, problems with breathing, fainting, nausea, stomach problems, chest pain, problems with exercising, problems with temperature and shakiness.

POTS is relatively common in teenagers and more often found in females opposed to males. Generally, POTS does not occur in isolation and is often caused by another medical concern. These can include autoimmune diseases, genetic disorders, infections (such as Hepatitis C), multiple sclerosis, diabetes, problems from poisoning, medications, alcohol use or surgery. It can often be difficult to isolate exactly what causes POTS. There is still significant research being conducted to investigate this.

Transforming one’s thoughts will ultimately result in positive actions and behaviors in difficult moments. — Greta Gleissner LCSW

Diabetic Autonomic Neuropathy

This type of dysautonomia is quite commonly found in people with a diagnosis of diabetes. Diabetic autonomic neuropathy impacts the sections of the heart that helps to manage blood pressure and the level of glucose in the blood. When these processes do not work properly due to problems with the automatic nervous system, you can experience increased heart rate, problems with digestion such as constipation, problems with sexual arousal, breathing, excessive or restrictive sweating and generally more difficulty managing diabetes.


Multiple System Atrophy

Source: verywell.com

Another more well-known type of dysautonomia is multiple system atrophy. This type of dysautonomia is more likely to impact individuals over around 50 years of age. Unfortunately, it can be commonly misrecognized as Parkinson’s disease when it is in its early stages. This makes treatment difficult without an accurate diagnosis.  Multiple system atrophy is characterized when parts of the person’s brain begin to disintegrate (atrophy). The symptoms of this type of dysautonomia can include rigid muscles, poor flexibility, problems with balance, coordination, speech, problems swallowing, difficulty focusing or blurred vision.

For some persons, even the slightest restriction leads to difficulty. Some of us need an aisle seat in a theater rather than one in the middle of the row. — Tom Bunn L.C.S.W.

And the rare… Familial Dysautonomia

Although this is not a common form of dysautonomia, it deserves a mention given the significant impact it can have on sufferers of this disorder. It is one of the least frequent types of dysautonomia but can have the worst outcomes including premature death (with the chance that the person will live to 40 years old being only 50%). This type of dysautonomia can be detected from a young age and is characterized by a number of symptoms including problems with temperature, under-sensitivity to pain, cycles of vomiting, excessive sweating, spinal difficulties, poor growth, kidney problems, issues with the heart, problems with sleep apnea and frequent lung infections to name a few.

We have only mentioned a few of the types of dysautonomia here. But, you can clearly see from those discussed just how detrimental these disorders can be to someone’s life. There is hope for ways to help manage these disorders and treat the symptoms. Head over to our page on treatment {how are dysautonomias treated} for more information on this.

This article was only able to touch on a few of the types of dysautonomia. Therefore, further information on the different types of dysautonomias is needed. Please see the links below.





Dysautonomia – Self Help

A Range of Symptoms


Dysautonomia is an umbrella term for a number of disorders or medical conditions caused by damage to the autonomic nervous system ANS. Since the ANS controls all the automatic functions of the body including heart rate, blood pressure, body temperature and gastrointestinal system, sufferers may have a wide range of symptoms. The severity of the symptoms can range from irritating to incapacitating and can fluctuate from day to day.


Most people with this disorder look perfectly healthy and others may see them as suffering from a psychological disorder, or worse still, as lazy. Either way, since this is a chronic disease with very real physical symptoms, their attitude may leave you feeling unappreciated.

Suddenly, I was now the subject, and not just an observer, of what I had been writing about for nearly a decade. — Tamara McClintock Greenberg Psy.D.

Share How You Feel


Source: ak2.picdn.net


If you have been diagnosed with Dysautonomia you will have to make some lifestyle changes to accommodate the condition. You should take the time to explain the condition and how it makes you feel to your family and friends. You may need their support. They also need to understand why on some days you are just not well enough to do what they may want you to do.



Everyday Tasks


Source: transcare.org.au


Running a home when you suffer from Dysautonomia can be daunting especially if you suffer from fatigue. Learn to ask for help. Employ others to do what you can’t do, or buy the latest appliances to reduce the effort. Don’t be too harsh on yourself if you don’t manage to complete what you set out to do.


Don’t allow yourself to feel guilty or discouraged when your daily goals are not met. Schedule plenty of time for rest before and after difficult tasks. Prioritize the important things. Remember that stress can exaggerate the symptoms of this condition.


Find time to do the things that you enjoy. You may have to adjust your hobbies to accommodate your symptoms, but there are still many things that you should be able to do. Reading, art, and music are all relaxing pastimes that you can enjoy.

I made it clear in my tone and body language that my chronic illness was a minor setback, a hiccup, a pesky footnote in the narrative of my life. — Katie Willard Virant MSW, JD, LCSW

Moreover, sleep is very important especially if you suffer from chronic fatigue. Eight to nine hours of sleep per night is important. Take small breaks throughout the day so that you don’t wear yourself out.





A healthy and nutritional diet is vital for people suffering from this condition. Avoid refined carbohydrates and sugar. These increase your blood sugar and could trigger symptoms. Food intolerances are recognized as a contributing factor to Dysautonomia in some people. Be on the look out for such intolerances and if necessary hire a dietician to assist in identifying them.


A diet that is high in sodium and fluids will assist in raising the blood pressure, which when low causes so many of the symptoms. Consuming between two and four grams of sodium and between two to three liters of water a day will alleviate symptoms.


Eating several small meals a day rather than two or three large meals can also help to reduce symptoms.





Source: rd.com


Exercise is recognized as one of the best ways to reduce the symptoms of Dysautonomia. It will help to improve your mood as the brain releases endorphins during exercise. It will also help to improve sleep patterns and to recondition the autonomous nervous system.


Your exercise plan should be discussed with your doctor who can provide you with heart rate targets and goals. The exercise options are many. You may choose to exercise in the comfort of your own home with or without an exercise buddy. You may join a gym, go to a physiotherapist or hire your own personal trainer. Some clinics also offer inpatient exercise plans where the patients are taught how to function effectively with their symptoms.


Because symptoms are generally worse when you are upright, exercise for people with Dysautonomia normally starts in a recumbent position. It can include swimming, weightlifting from a sitting or lying position, Pilates or yoga. Upright exercise should only be attempted after you have spent some time building up resistance.


The secret is to start slowly and then build up the pace. Your current level of fitness will determine the start of the exercise plan. The point of the exercise is to get the heart rate up so you may want to invest in a heart rate monitor. Your aim should be forty minutes of aerobic exercise three times a week.


Sometimes the cause of a chronic illness/condition can be identified, but often no specific cause can be determined and nothing can explain why it happened. — Dan Mager MSW

Keep informed


Find support groups. It always helps to talk to people who are going through the same or similar problems as those that confront you. Keep abreast of the most current research into Dysautonomia and discuss it with your doctor.



The Start of a Journey


The diagnosis of Dysautonomia is the start of a journey to understand and to alleviate the symptoms and to mitigate any negative effects that they may have on your life. A few lifestyle adjustments and a lot exercise will go a long way to making your life easier.

Understanding Dysautonomia

There is nothing that will hurt a parent more than hearing that your child has an incurable illness like Dysautonomia. For sure, kids with the condition won’t need to get radiation therapy, which is often necessary for cancer patients. Staying away from sweets or having insulin injections practically forever is just for the diabetics as well. But the fact that a kid will most likely struggle with the disease for as long as they live after the diagnosis of this can’t be comforting either.

Source: pixabay.com


Dysautonomia is the medical term for when the autonomic nervous system (ANS) a part of your nervous system that controls involuntary functions of the body does not work as it should. The disorder disturbs cells in the autonomic nervous system, which controls involuntary actions such as digestion, breathing, pupil dilation, kidney function, sexual function, and the regulation of heart rate blood pressure and body temperature.

According to Dysautonomia International, dysautonomia affects more than 70 million people worldwide. They come in many forms and can be primary or secondary. There are many forms of dysautonomia that can occur at any age: pediatric, adult, and/or geriatric. The diagnosis of this depends on the overall function of three autonomic functions – cardiovagal, adrenergic, and sudomotor.

The most common form of dysautonomia is optional autonomic neuropathy or secondary dysautonomia which occurs because of a physical issue or other diseases (e.g., autoimmune diseases, multiple system atrophy (MSA), etc.). A possibly more common form of it is postural orthostatic tachycardia syndrome (POTS). POTS is a dysfunction of the autonomic nervous system that involves abnormal symptoms in many parts of the body, including abnormal blood flow to the heart, lungs, blood vessels, and brain.

According to the National Institute, it can be a mild, temporary condition or a serious long-term illness. The most common sign of this is orthostatic intolerance, which means you can’t stand up for long without feeling faint or dizzy. In severe cases, people might have life-threatening complications such as pneumonia and respiratory failure. Doctors call this orthostatic hypotension.

Parent’s Thoughts After Their Kid’s Dysautonomia Diagnosis

The typical thoughts of parents who witness generalized dysautonomia or primary or familial dysautonomia, or pure autonomic failure symptoms in motion include “If only I can transfer their pain to me” and “I hope a miracle will happen and dissolve this and underlying condition, it comes with.” Neither, of course, is plausible at the time of writing this blog. You may leave treatment to the physicians and focus on helping the child with this illness.

  1. Never Doubt Your Kid’s Words Immediately

The most prominent fear of parents whose youngster has autonomic dysfunction is that they might use their dysautonomia information page to get out of unfavorable situations. In case you ask the child with dysautonomia to clean their room, for instance, they may say that they’re dizzy or feeling unwell due to central nervous system degeneration. Despite that, it doesn’t mean that symptoms like frequent lung infections, diabetes due to autonomic neuropathy, blurred vision, lack of bladder control, decreased pain sensitivity, and other autonomic medical conditions aren’t there.

When you live in the same house as your kiddo with dysautonomia, you should know by now whether they’re capable of efficiently lying or not. If they are, you may scrutinize your kid further before believing they aren’t in great health. Considering they don’t lie or are not good at it, however, then you shouldn’t draw conclusions about what they’re saying about dysautonomia before they even finish talking.

  1. Ensure That They See Their Dysautonomia Doctor On A Regular Basis


Source: commons.wikimedia.org

A healthcare provider will highly suggest that anyone with dysautonomia get checkups with a specialist regularly. Even though it won’t be cheap, that’s the best way to understand the progression or regression of it.

  1. Maintain Your Composure

When kids go through puberty, they develop mannerisms and ideas that can make a parent happy or sad. It’s cool in case your kiddo is one definite cookie, to the point that the symptoms of the dysautonomia don’t faze them too much. But once they give in to their rebellious side and start talking back at you or sneaking out at night, you might lose your calmness before you know it.

Will your outburst help your kid with dysautonomia? No. If anything, it may merely aggravate the situation as the children with dysautonomia see how much effect it has on you. So stay level-headed to help your offspring better.

Sometimes the cause of a chronic illness/condition can be identified, but often no specific cause can be determined and nothing can explain why it happened. — Dan Mager MSW

  1. Consider Joining Support Groups
Source: pixabay.com

Taking care of a child with dysautonomia can’t be as straightforward as dealing with a regular kid without dysautonomia.

Joining a dysautonomia support group may help some moms and dads overcome this issue. The dysautonomia organization ideally consists of parents whose children have dysautonomia too. You may ask them dysautonomia questions and garner advice on how to help your youngster with dysautonomia better.

  1. Subject Yourselves ToFamily Counseling

Whether your child is six or 16 years old, you may speak with a counselor together and deal with the psychological aspect of dysautonomia. The ups and downs that come with this, after all, don’t affect the patients. While the latter feels its dysautonomia symptoms alone, knowing that you can’t alleviate their dysautonomia can be burdensome for parents. You might be concentrating too much on the kid as well, which may cause your other children to rebel or develop adverse feelings toward the entire family.

Through a dysautonomia group counseling session, you’ll be able to address all issues. You can learn coping mechanisms for dysautonomia as a family as well and become one another’s rock.

Final Thoughts

It’s definitely not a walk in the park to know your kid has dysautonomia. Dysautonomia is a lifelong condition. You and your kid will face multiple hardships from dysautonomia. There is currently no cure for any form of dysautonomia, but secondary forms may improve with treatment of the underlying disease. You need to stay strong and work together in managing dysautonomia. The good news is there are many dysautonomia researchers at the National Institutes Of Health looking for ways to cure dysautonomia once and for all.

Frequently Asked Questions (FAQs)

Can dysautonomia be caused by stress?

Stress can exacerbate dysautonomia symptoms, but it’s not a direct cause of the health condition, which primarily involves issues with the autonomic nervous system that can affect blood pressure and other bodily functions.

Does dysautonomia get worse over time?

Dysautonomia can vary, and its severity may change over time, affecting heart rate and blood pressure differently in individuals.

What are the signs and symptoms that your nervous system is malfunctioning?

Signs that your nervous system is malfunctioning may include dysautonomia symptoms, which can involve symptoms like shortness of breath.

How does dysautonomia make you feel?

Dysautonomia can make you feel unwell due to symptoms of dysautonomia, which can affect multiple systems in the body, and it is related to conditions like multiple system atrophy.

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