What is Dysautonomia?

I’m going to try my best to explain this disorder in a very easy-to-understand way.

For a more medical definition, Wikipedia does a good job at http://www.en.wikipedia.org/wiki/Dysautonomia

Dysautonomia is the term used to explain a range of disorders that are characterized by the malfunction of your Autonomic Nervous System. (ANS) There are many types – ranging from mild to severe. And every person is different. And every cause is different. And every prognosis is different. Some of the more common ones are Neurocardiogenic Syncope (NCS), Postural Orthostatic Tachycardia Syndrome (POTS), Chronic Fatigue Syndrome (CFS), Fibromyalgia, and Orthostatic Intolerance (OI). I’ll be focusing primarily on these types of Dysautonomia that are chronic, but not life-threatening and have the potential to improve over time. (Some other types of Dysautonomia cause a slow degenerating of the nervous system and eventually lead to death; but they are more rare and seen at birth, after major injury or trauma, and in the elderly.)

Okay, what is your Autonomic Nervous System? (ANS)

Well, your nervous system has many “branches” and your ANS is the branch that controls everything you do subconsciously – your heart rate, your blood pressure, your breathing patterns, sleep patterns, sensory perception, visual reflexes, body temperature, etc. There are two more branches that come from the ANS – the Sympathetic Nervous System (SNS) and the Parasympathetic Nervous System (PSNS). Your SNS is the “flight or fight” response – basically, it speeds things up if your body needs to fight or to flee. (Increases heart rate, breathing, stops digestion, dilates the pupils, etc.)

Example: If you were to walk into your house and find a robber with a gun pointed at your face – your brain would naturally send a signal that “starts up” your SNS – because it’s time to “fight or flee”. So, imagine what sort of things you would feel in that situation…….

For Dysautonomia patients, that “signal” can be set off inappropriately or for no apparent reason at all. We can feel these symptoms of terror and anxiety just simply sitting down and doing nothing. Seriously. And after they subside, they cause us to feel exhausted and fatigued because your body just worked extra hard for nothing.

The PSNS is more of the “slow” branch of the ANS. It controls “rest and digest” – it speeds up digestion, and slows down breathing and heart rate. (Things that happen while you’re resting.) This system is dominated most of the time in a normal person. But, with Dysautonomia, the SNS and PSNS are “going off” at different times, and not usually the RIGHT times – which is why symptoms such as palpitations, trouble breathing, constipation or insomnia makes sense, right?

What are the symptoms of Dysautonomia?

Symptoms of Dysautonomia (and related conditions) vary widely from patient to patient, can be mild to severe, and can change without notice. You might experience one set of symptoms one day, and another the next. Or different symptoms within the same day, hour, or even minutes. It’s very unpredictable. Usually they include:

  • Rapid heart rate (tachycardia)
  • Too slow of a heart rate (brachycardia)
  • All sorts of chest pain, all over the chest area
  • Dangerously low blood pressure (especially upon being upright or standing for too long)
  • Major swings in blood pressure
  • Dizziness, light-headedness, vertigo
  • Feeling faint, and sometimes actually fainting (syncopy)
  • Hot flashes, cold sweats, chills, and irregularities in body temperature
  • Anxiety attacks and panic attacks (panic attacks)
  • Trouble breathing, shortness of breath, hyperventilation
  • Headaches, migraines, neck pain and tightness
  • Other odd body aches and pains
  • Nerve pain, tingling sensations, burning sensations, numbness
  • Extreme fatigue and weakness
  • Trembling and shaking – inside and out
  • Inability to tolerate exercise (or sometimes even regular activity)
  • Hypersensitivity to adrenaline
  • Insomnia, sleep disturbances, or sleeping too much
  • Constipation, diarrhea, acid-reflux, and other digestive problems
  • Visual disturbances, changes in vision, blurry vision, fuzzy vision
  • “Brain fog”, spacing-out, losing words, inability to focus or concentrate
  • Frequent urination, urgency to urinate (polyuria)
  • Frequent thirst (polydipsia)
  • Super-sensitivity to lights, sounds, smells, etc.
  • And just other weird stuff…

There are a whole variety of symptoms that patients with Dysautonomia can experience and are not all listed here. Since Dysautonomia is a full-body condition, it can obviously exhibit itself in many different ways.

So what’s the big deal with standing up?

When people stand up, gravity naturally pulls blood down into the feet and legs. In a normal person, the brain senses this change and sends a “neuro-signal” to the veins to constrict (tighten-up) in order to send blood back up to the heart and lungs so that blood pressure, heart rate, and oxygen levels can stabilize, and the person can function. For those of us with certain types of Dysautonomia, this whole process doesn’t work right. (Or at all.) When we stand up, the blood pools in our legs and feet but there is no signal telling our veins to constrict. In order to compensate, the heart beats faster and faster (in NCS it’s sometimes slower) to get blood pumping back up to the brain… BUT this actually makes things worse! Because when the heart rate is high, the brain senses this and in order to combat blood pressure going too high (naturally, in a normal person) it sends an opposite signal to the blood vessels – telling them to dilate (or loosen-up), causing blood pressure to get even lower and not enough blood gets to the brain or to the heart. (which is much needed!!!) As you can see, this can be quite frustrating. And this is why some people actually faint, while others of us just pretty much feel like crap.

What causes Dysautonomia?

Unfortunately causes of Dysautonomia are not very well understood, and they can be different for each person. It’s also really hard to determine the cause for each individual as it could be related to numerous things and there aren’t a lot of tests to determine it. Some generally assumed causes are viral illnesses, auto-immune disorders, brain, head, or chest injury and/or trauma, degenerative disorders of the nervous system, genetic factors, growth spurts in adolescents, exposure to toxins and chemicals, some people are just born with it, and others may never know.

How do you treat Dysautonomia?

Well, since there is no single cause, and it is difficult to diagnosis, it is understandable that treating Dysautonomia varies from person to person and can be hard to do. Like I mentioned before, the condition is chronic (long-lasting) and there is no cure. Therefore, treatment right now is aimed at controlling the symptoms. Most people need to increase their fluids and salt intake to help raise their blood pressure. Others can wear something called compression stockings that help blood that is pooling in the legs to be brought back up to the heart and brain. (Not very fashionable or comfortable though.) Usually, a slow increase in activity and moderate exercise is encouraged to build up endurance and can really improve symptoms over time. (This takes a lot of patience – make sure to take breaks in between and listen to your body!) An overall healthy lifestyle is a necessity for controlling symptoms of Dysautonomia.

There are different supplements that can help, and taking a daily vitamin is encouraged. There are also many medications that can be taken (only from the advice of your doctor) – some raise blood pressure and others control heart rate. Some can help a person retain water and salt, and others can help the brain produce more of the chemicals it needs to sort of “balance out” the nervous system. Anti-anxiety medications are sometimes used, especially in the beginning, to help control the symptoms of anxiety and regulate sleep patterns. Most of all, treating Dysautonomia requires major lifestyle changes and a lot of patience since most treatment methods are found through a trial-and-error process. Some can help one person, while make another person worse. And like I mentioned before, those of us with Dysautonomia are usually very sensitive to medications so that makes everything more difficult. (ugh!) Talk with your doctor, or a specialist, to find out what may be right with you. And just because one thing doesn’t work, or things don’t get better right away – DON’T give up trying! You’ll figure it out over time.

*On a better note, here are two Positive Points to remind yourself:

  1. Most cases of Dysautonomia tend to clear up and improve significantly within 2 to 5 years.
  2. Since these disorders have finally begun to be recognized by the medical community as real, physiological disorders (and opposed t0 psychological), there is a TON of amount of research being conducted to better understand Dysautonomia and get more effective treatment methods. So, the outlook for improvement is hopeful.

I hope this helps. Remember: take things at your own pace. Don’t compare your life to others – set your own expectations. You don’t need to meet theirs. Just know that things WILL get better. Stay hopeful and keep fighting!

There’s a lot of good information out there on the web about the disorder that you can read more about if you check out my Links.

Also, for a good YouTube video all about POTS, check out http://www.youtube.com/watch?v=o5D9T04OVZg

DISCLAIMER: I am NOT a doctor. I am just a patient, with a lot of experience and studying of the health sciences. Remember, all patients are different. Just because one person seems to function okay, doesn’t mean another one won’t be bed-ridden. And just because someone gets better soon, doesn’t mean it won’t take a long time for someone else. Keeping yourself educated and talking to your doctor is the best way to understand your own Dysautonomia and get the best treatment.

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15 responses to this post.

  1. I have been battling POTS and CFS for over a year now. I’ve created a blog to help raise awareness to these illnesses. Research for these are very little and bringing awareness will help to increase research for potential cures and fighting agaisnts POTS and CFS. Please Join and Help spread the word!
    xoxo Kristen
    POTSbecomeaware.blogspot.com

    Reply

    • Posted by Marilyn Hayes on April 16, 2013 at 6:39 pm

      I was diagnosed 3 years ago with dysautonomia…ncs, pots, oi. gastroparesis and possibly fibromyalgia. After a lot of trial and error, I have found that ritalin three times a day works great for the ncs. Although, nothing can be done about the numerous other symptoms of dysautonomia…the headaches, nausea, tingling, blood pooling in limbs or the unexplainable feelings of not being well. I try not to give up but it’s very hard. Living a normal life isn’t easy. Those around you can’t understand that every minute you battle some kind of unusual symptoms….I have a wonderful and supportive husband that puts up with everything, but even he can’t fully understand how overwhelming life is with dysautonomia. The best way to cope? Make sure you find doctors in every field that understand what you are dealing with. Lucky for me, I have numerous doctors that do understand. Rhuematologist, Endocrinologist, Neurologist, Gastroentrologist and even family doctor. You need a team.

      Reply

      • Marilyn,
        Thanks so much for sharing your story, I’m glad you’ve found some things to help and have some support around you. It’s definitely difficult and challenging, no matter the circumstances. Your advice is excellent — we definitely need a team and having understanding, compassionate doctors is vital. It’s great that you’ve found some.
        Take good care.
        H

  2. Posted by susieqsinger on May 14, 2012 at 6:16 pm

    I find this blog to be really interesting as I’ve been dealing with some really weird symptoms lately many of which are on this list. I’ve had numerous blood work done and everything is coming back normal. When I explained to my Dr that I get faint, dizzy, fuzzy feeling to my Dr. I was told it’s a vasovagal response which she said is a “normal or typical” response to certain things such as going to the bathroom. It certainly doesn’t feel normal to me – it feel absolutely awful. I keep worrying myself that something is seriously wrong and that I’m dying. I just wish someone could figure it out.

    Reply

  3. Posted by lorrie ryals 38 on June 24, 2012 at 2:15 am

    I havestroke like episodes each time i feel my head tingle. I instantly start sluring my words and in my head im saying lay down but i cant figure out how. Thats when the rears start rolling and my face freezes up. It can last up to a hour or the shortest was 30 minutes. I hate it it has usually happened in the evening thank god. So im in by 7ish. Im on nadalol 60 mg 2xs a day tons of water and salt and klonapin yeah! Iwant to exercise any ideas my episodes are crazy!!!!!

    Reply

  4. Posted by Bryyon Lambert on July 2, 2012 at 6:10 am

    All the above is actually a weakness of the aorta and its nerve controllers. This weakness can be genetic, but usually acquired by weak [ civilised ] people becoming weaker through Severe Postural Deflection. SPD is presently not recognised by Science or Modern Medicine, or anybody else for that matter. This is not only a preventable condition, but also fixable if not to old or chronic.

    This is a comment by an anatomical engineer.

    Reply

  5. Posted by Tina on March 6, 2013 at 3:57 am

    I think I’m dying…

    Reply

    • What’s going on Tina??

      Reply

      • Posted by Tina on March 12, 2013 at 3:05 am

        I’m getting worse and still unable to get out of bed.. I know my condition is a lot worse than some people and I’m scared that no one is going to figure this out before something happens.. Being that a possible connective tissue disorder can be causing my dysautonomia , and effecting all my organs, no dr is going to take the time to get to the bottom of this. I’ve been sick all my life with no answer.. I’m loosing hope.

        Sent from my iPhone

  6. Posted by cheryl on April 8, 2013 at 3:12 pm

    Go to Cleveland Clinic-they know all about dysautonomia…after 15 months my daughter was diagnosed 90 minutes after meeting the MD

    Reply

  7. Hey there, You’ve done an excellent job. I’ll definitely digg it and personally recommend to my friends.
    I’m sure they will be benefited from this site.

    Reply

  8. […] Here’s quite a good explanation of the basics of dysautonomia. I notice she includes CFS (chronic fatigue syndrome) in the list. There is good science behind the idea that fibromyalgia is dysautonomic as it looks to be a form of hyperadrenergicPOTS. But I wasn’t aware that CFS has been included. It’s not that surprising though as some doctors (one in Australia that I can never remember the name of in particular) insist that up to 96% of patients with a dx of ME/CFS have some form of dysautonomia. But as Ramsay felt that a dx of dysautonomia meant a patient couldn’t have ME it’s a bit confusing. […]

    Reply

  9. What’s up, constantly i used to check weblog posts here in
    the early hours in the break of day, since i like to find out more and more.

    Reply

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