15 Things I Tell Dysautonomia/POTS Patients.

November 2, 2018

Here are 15 things I tell Dysautonomia/(POTS) patients.

 

  1.    I am sorry that you have Dysautonomia. You are part of a big family. (Three million members in America alone.)

  2.    I know how it feels (more on that later).

  3.    Your dizziness, digestion problems, shortness of breath, blurred vision and fatigue are most likely related to your Dysautonomia.

  4.    Just because the symptoms are similar, doesn’t mean the problem is the same. Reading someone else’s horror story online doesn’t mean it will happen to you or that you even are suffering from the same problem.

  5.    There is one type of dysautonomia that is familial. The rest are secondary to other causes.

  6.    Migraine is one of the most recognizable yet forgotten forms of dysautonomia and can contribute to many other symptoms besides head pain.

  7.    When we get older, problems with the autonomic system can look different and are reflected in different kinds of problems like stroke and vascular dementia. It’s a cliche for a reason-”An ounce of prevention is worth a pound of cure.”

  8.    Getting professional guidance on Dysautonomia early can save a lot of turmoil and anxiety down the road.

  9.    Worrying about Dysautonomia is easy to do but completely unhelpful. Plus, excessive worry makes dysautonomia symptoms more likely to occur.

  10. Dysautonomia isn’t immediately life-threatening, even though it feels that way.

  11.     Important new work suggests Dysautonomia is modifiable with lifestyle measures. As in you can help yourself.

  12. Some treatments of Dysautonomia can be worse than the disease. Treating the cause rather than the symptoms can be very helpful in the long run.

  13.  The most harmful strategy is the one where you assume the sick role.  Acting like a sick person is the fastest way to become one.

  14. There are many different treatments for dysautonomia symptoms. If you give a full effort to one treatment and it isn’t 100% successful, it just means it wasn’t addressing the cause for you. Find your cause, find your treatment. Keep an open mind.

  15. If your heart rate is fast and your blood pressure is normal, rest assured that your body is responding the way it is supposed to under the current conditions.  Removing or alleviating the problem in the system will likely allow the heart rate to return to normal.

 

There are obviously more than 15 things to say about Dysautonomia. It’s a complicated disease with many different roads to the same party. Patients should have as clear of a picture as possible of their own health and need time to digest all the possible options. Your doctors are human and despite their best efforts can’t know everything. The best ones will do their best and fill in the rest with compassion.

 

At the end of the day, Patients need to weigh the disease against the treatments. Find the balance between devouring online anecdotes and seeking professional guidance specifically for your needs.

 

NDK

 

 

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