Chronic Chiari, The Medication Debate

Recently, I read a Facebook post that really got under my skin.  The poster asked on a Chiari group if there were others that had chosen to be medication free.  Well, sure I would choose be medication free too, if I could.  But I can’t! And I don’t like the implication that not taking medications is a choice.  For me, medications aren’t a choice; they are a requirement for daily survival.  I can’t toughen up.  There isn’t enough willpower in the world to overcome nerve damage.  I truly resent the fact that someone could imply that being on medication is a choice.  I don’t think anyone would willingly sign up to take the medications I take just for the fun of it. 

In this same post, this person also joked about passing the Xanax.  I am pretty sure that the poster has never experienced a panic attack or else they wouldn’t be able to so callously joke about the need for such medication.   No, I’m not on Xanax but I easily could be someday soon.  See, I don’t reach R.E.M. sleep like I should.  Therefore, I have sleep related panic attacks.  Just as I am falling to sleep BAM! I am in full fledged panic mode.  Luckily, I can recognize that it’s just a panic attack but I am powerless to stop it.  I have this overwhelming need to escape. I need to escape the confines of the walls in my bedroom, to escape the walls of my house, to escape the confines of my own body.  Frequently, you can find me walking circles in the backyard in the middle of the night trying to walk off a panic attack.  It’s not fun but it is my reality.  In case you didn’t know, not reaching R.E.M. sleep can cause psychosis and other mental illness.  So I don’t find the humor in joking about things that can become and are real problems for others.

I fully embrace alternatives to medications.  I have explored and utilize plenty of therapies that are not based on medication.  I have even tried several that were most definitely not right for me.  Acupuncture, for instance, caused such a violent reaction in my body that I threw up all over the doctor’s shoes.  But I would never imply that those that find relief with acupuncture are not in solidarity with me.  Everyone that battles Chiari should be able to stand together to face this adversary, regardless of the treatment options we chose to pursue.  I am thankful that I have found plenty of options that have decreased the number of medications I take.  But I would never want to make anyone feel excluded because they utilize any treatment option that works for them.   This is one brutal disease with no clear cut path of treatment.  I am not sure why we would segregate ourselves from within.  We need to stand together to find better treatment options.  We need to try to educate doctors on all the treatments options that have potential to help those of us that are suffering.  For those of us that aren’t suffering, please don’t make the rest of us feel beneath you because we must rely on drugs.  We want the medical community to understand that Chiari can and does cause suffering. We must work together as patient and doctor to find the best treatments possible for relieving the suffering. 

Ok, enough of my soap box rant. I would love to hear your thoughts on this so please leave a comment below.