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Saturday, July 9, 2016

Ehlers Danlos Syndrome Pills


After my last pain clinic doctor’s visit, I wasn’t satisfied with the medicine recommendation.  As I mentioned in my last post, the doctor wanted to reduce a medicine that really helps me.  The awful dizzy spells that have recently been making me miserable, are what I asked this doctor about.  He seemed to not really listen to me.  Since I see an intern for the visit and then the prescribing doctor for only about one minute, it’s not always easy to get your point across!


So, I’ve  been doing my own investigation to see which medicine may be causing the dizzy spells.  I’ve thought long and hard about which medicines were added the most recently, because the dizzy spells have just recently started.  The doctor wanted to lay off a drug that I’ve been on for 4 years.  
That didn’t make any sense to me.  The last medicine he added to my mix was Extra Strength Tylenol (4 doses per day).  When I skipped a day the dizzy spells were lessened to only 1.  The next day I started the Tylenol again and the dizzy spells were back with 3 spells before noon.  The following day, no Tylenol….no dizzy spells.  I think I may have found my problem pill.
I’ll continue not taking the Tylenol and see if the spells stay away.  When you have Ehlers Danlos, Orthostatic Hypotension, Mast Cell Disorder, autoimmune, etc…you have to advocate for yourself.  I am always reading articles, research studies, forums, and anything I can find to help myself.  Many times I can find nothing about the problem.  Ehlers Danlos Syndrome hasn’t been studied much.  Also, many of my disorders call for drugs that may conflict.

This is my journey that continues along a crooked path.  As I read the journeys of others with chronic illness, I know that they have similar journeys.  As our journeys progress we do the best we can and try to enjoy the life we have.  I love living.  My back may be throbbing, but I love the feeling of breathing.  My head may hurt, but I love to be alive.

James 1:17
 – Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning.

@2016, copyright Lisa Ehrman

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