Understanding dysautonomia - a guide for family & friends

NOTE:  If you are a part of a support group or and would like to receive printed materials to share with family, or local medical community, please contact webmaster@dinet.org DINET supports your efforts!

You have what?  You may have said words like that to your friend or family member when they told you they had a diagnosis.  When they began trying to explain things like dysautonomia, autonomic dysfunction, tachycardia and the many other rarely heard words, you may have felt it was all too obscure, too medical to understand.  You're right, those are a lot of complex processes and difficult concepts to tie together.  Even a large part of the medical community doesn't know about it.  

If you have a friend or family member who has been diagnosed with an illness falling under the umbrella term "dysautonomia", this guide will hopefully help you understand it and better help support your loved one.

What is dysautonomia?

Dysautonomia, simply put, refers to a sort of misfiring of the processes in your body that normally function without you needing to think about them. For example, when you go from a dark room to a backyard on a sunny day, you don't make your pupils contract to protect your eyes from the bright light.  And you don't have to think about whether your pupils will dilate to allow more light in, when you return to the dark room.  For a person with a dysautonomia illness, their pupils may not react automatically.  That dysfunction of an automatic system/response in the body is autonomic dysfunction - the core of dysautonomia.

Why does my friend/family member have so many different complaints?  There can't be that many things wrong with them, can there?

The example above doesn't sound too hard to live with maybe, but if you stop and think about all of the functions of the body that we don't have to think about - all of the autonomic functions - we can quickly understand how debilitating this illness can be and how widespread.

There are many types of dysautonomia (about 15 types) but they all involve the autonomic nervous system (ANS).  The ANS controls:

• regulating a constant internal temperature
• regulating breathing patterns
• keeping blood pressure steady - regardless of body position
• regulating the heart rate
• urination/excretion
• pupil dilation

The next time your friend or family member is sweating profusely, has a migraine headache and can't stand up without feeling faint, you will understand better how this can all be happening.

What are the symptoms?

The symptoms vary depending on the type of dysautonomia, but the most common symptoms are:

• lightheadedness & fainting
• tachycardia or fast heart rate
• chest pains
• shortness of breath
• stomach upset
• exhaustion - far beyond normal tiredness
• over-sensitivity to temperatures (extreme sweating regardless of temp)
• "brain fog" - confusion or memory loss that passes

What can I do to help?  When do I call 911?

If in doubt call 911, especially if the person loses consciousness or can not speak or help themselves.  It is always better to call than to risk the results of not calling when you should have.  But, most cases of fainting or lightheadedness, extreme tachycardia or BP, will resolve itself if the person returns to a lying down position.  But that is very dependent on the type of dysautonomia and the other illnesses present. Always call if you are concerned.

Understand, support and spread the word!  There is nothing that feels better to a person struggling to live through an illness, than to be believed and understood.  Too many times patients go through years of being told by the people around them that they are anxious or stressed or they need to push passed their symptoms.  When your body feels so out of your control, the last thing that you need to hear is that you should be able to control your symptoms somehow. Once you understand the illness, advocate for your loved one and help them be heard.

Remind and support their efforts to be well.  Remind them to hydrate.  Good hydration with electrolyte products is essential to feeling well.  Read more about the effects and pick up a coupon for an electrolyte drink - Banana Bag.

Keep them from feeling alone.  One of the tough parts of this illness is feeling as though the world is going on without you.  On their bad days, instead of trying to push the person to try and do what you can do, try adapting yourself to what they can do.  If you invite them to go for a swim and they can't, change the plan to playing cards, listening to music, or just a visit.  Your company will go a long way.

To learn more about illnesses classified under the dysautonomia umbrella, visit the Information Resources section of our site or visit our YouTube channel for more information.