Dysautonomia... what exactly is this?

Dysautonomia.  It's a big word for something that not a lot of people have heard of.  Unfortunately it is a big word that has affected my life in a big way. It is a rare disorder and is not well known.  There is also no cure, and only the possibility that you can manage the symptoms. It varies so much from person to person that even this is difficult and sometimes not possible.  So far I've written blogs about my story and my personal experiences.  I've not really went into a description of what this disease is or what it can do. So that is what this blog is designated to doing.  Bear with me as I'll use alot of medical terms, but I'll try and simplify it as well as I can. 


Dysautonomia is a broad term that describes any malfunction of the autonomic nervous system.  Your autnomic nervous system (ANS from here on out) is sometimes mistakenly called the "automatic" nervous system.  This mistake is not far off in actuality, because the ANS controls all your automatic functions of your body.  It affects things like your heart rate, digestion, respiration rate, salivation, perspiration, diameter of the pupils, etc.  Anything you do not have to think about, that your body automatically does for you, can be affected by dysautonomia.  


There are 2 parts to the ANS: The sympathetic system and the parasympathetic system. The sympathetic system can best be thought of as controlling the “fight or flight” reactions of the body, producing the rapid heart rates, increased breathing, and increased blood flow to the muscles that are necessary when an individual is in danger or under stress. The parasympathetic system controls the “quiet” body functions, for instance, the digestive system. In short, the sympathetic system gets the body ready for action, while the parasympathetic system gets the body ready for rest. And in normal individuals, the parasympathetic and sympathetic components of the autonomic nervous systems are in perfect balance, from moment to moment, depending on the body’s instantaneous needs. 


In people suffering from dysautonomia, the autonomic nervous system loses that balance, and at various times the parasympathetic or sympathetic systems inappropriately predominate. Symptoms can include frequent, vague but disturbing aches and pains, faintness (or even actual fainting spells), fatigue and inertia, severe anxiety attacks, tachycardia, hypotension, poor exercise tolerance, gastrointestinal symptoms such as irritable bowel syndrome, sweating, dizziness, blurred vision, numbness and tingling, anxiety and (quite understandably), depression.

Sufferers of dysautonomia can experience all these symptoms or just a few of them. They can experience one cluster of symptoms at one time, and another set of symptoms at other times. The symptoms are often fleeting and unpredictable, but on the other hand they can be triggered by specific situations or actions. (Some people have symptoms with exertion, for instance, or when standing up, or after ingesting certain foods.) And since people with dysautonomia are usually normal in every other way, when the doctor does a physical exam he or she often finds no abnormalities. (prior 3 paragraphs taken from http://heartdisease.about.com/cs/womensissues/a/dysautonomia.htm)

You can find more information on dysautonomia at 

http://www.dinet.org/ and 

http://www.dynakids.org/

The Center I am going to for my first visit with a specialist is at 

http://www.mvprolapse.com/ and there is lots of information here too!

My situation with dysautonomia so far is that I am rarely able to get up and do things without my heart beating so rapidly I get weak from the moment I stand.  Even on the beta blockers that are supposed to be keeping my rates low, I am experiencing tachycardia the majority of the time I stand or do anything you would consider normal everyday activity.  Tachycardia is basically a word that means fast heart rate.  A normal resting heart rate is anything between 60 and 100 beats per minute (bpm).

For me, dysautonomia causes tachycardia when I am standing, doing any form of light activity like walking from room to room in my home, showering, fixing my hair, getting dressed, or experiencing a temperature change like leaving my house and going out into the summer heat.  Everything I never had to think about before, I have to think about now. I try and space things out so that I have time to rest and bring my heart rate back down before the next thing needs to be done. When I am sitting or laying down at rest, my rates range in the normal range most times. Right now I am at 89bpm and I've been sitting for quite a while. If I were to stand right now, my heart rate would immediately jump from that 89bpm to well over 120, more likely in the 130's. It doesn't take minutes, but seconds, for this to happen to me. I get a heaviness in my chest and a strange fluttering feeling when it really gets going.  It get hard to breathe and if I allow myself to get scared by this, I will hyperventilate. When I am on my feet for any amount of time I began to tire very quickly. Because of the tachycardia I always feel like I've just ran a marathon. My heart is beating at high rates all the time.  Imagine how you feel after sprinting a short distance or after a good 30 minute workout.  You can feel your heart pumping, sometimes hear it pumping in your ears, you are short-winded, and thirsty. You're body sometimes aches.  This is everyday for me from just something as simple as walking to the kitchen or the bathroom. When my heart rate stays high for long lengths of time, or when I'm up and active during the day, eventually I get what most of us with Dys. call brain fog. It becomes hard to concentrate and to think clearly.  Once this sets in I know that if I do not rest then I am going to crash.  When I crash, I become so overly exhausted that I can't do anything. The only option I have at this point is to lay there and sleep until my body recovers.  Usually I will sleep anywhere from 12-15 hours straight and deep when this happens.  I have even slept close to 18 hours straight.  I have to be very careful now because I've developed insomnia so now I'm not resting well. Add this to a body that tires as quickly as mine, and it spells disaster.

During the last 3 weeks I have had other symptoms arise.  3 weeks ago they thought I had a stroke, but all my tests came back normal.  For 3 weeks I have been unable to speak without a terrible slur. This has gradually gotten a little better every day since then.  I think in a few days time I may be able to talk without much of a slur at all... at least I'm praying for this.  For 3 weeks I've had to use a wheelchair or walker to get around. I had lost all movement in my left leg.  I am finally able to move it, yet there is still weakness in it, so I am not able to walk without my walker yet, but like my speech I am praying for this to also get better.

I have my first appointment with a Dysautonomia specialist on September 29th.  I pray that I am able to get more answers then.  Thank you for taking the time to read this. I hope that it answers any questions you may have. If not leave a comment and I will be sure and post the answers. Please continue to pray for me and my family as we fight this together. May God Bless you Richly! Miranda