Thursday, June 21, 2012

Migraine Awareness Month Blogging Challenge #21: "Shaking in my Boots."

AwarenessMonth2012BC2 Today's prompt is:
Migraine Awareness Month Blogging Challenge #21: "Shaking in my Boots." What's your biggest Migraine related fear?  How do you cope with it?
Another ER Visit - Another Medical Mistake

Several years ago, I went into the hospital for Status Migrainosus.  I had tried everything I could at home and was both exhausted and dehydrated.  My doctor told me they were using a *new* treatment for Migraines.  He called it "The Mayo Protocol".   

The protocol utilized several medicines.  One was oral, the rest were IV.  

I had a serious reaction to one of the IV medicines.  I fell over and was unable to breathe.  My brain swelled and I am told that I postured.  (Posturing means your body draws itself up into a fetal-like position).

Unfortunately, the drugs used on me that day are very commonly used Migraine medications, especially in a hospital setting.  

Unfortunately, the nurse who gave them to me didn't pay very good attention to what she was giving me when.  She swore she gave me Benadryl, but the reaction was actually more like a tardive reaction to one of the other meds I was supposed to receive - thorazine.  

The fact is, we will never know for sure what happened - the drugs all looked the same in the syringes.  Suffice it to say, I am a very lucky girl who now has to tell everyone that I am allergic to Benadryl.  We now know that I have tardive reactions as well, so there is also a long list of those medicines I also react to. 

As a patient who also suffers from autoimmune diseases and a related circulatory condition called Raynaud's, there are a whole list of meds I can't take, or I risk amputation.  Triptans and ergotamines are big on that list.  This means doctors want me to take the medicines I was given at the hospital that caused the reaction. 

This is a huge red flag for emergency physicians.  

As a result, I have had multiple physicians try to give me these medicines regardless of this reaction.  When I tell them of my reaction, I am flagged as a drug seeker.  Despite my history, on more than one occasion I have had doctors try to trick me into agreeing to take these meds by telling me their generic name when asked.  As a result, I have been refused all Migraine treatment on more than one occasion.    

How do I deal with this fear?

I got educated.  This incident was one of the things that triggered me into becoming a proactive and educated patient.  An educated patient knows when they are being played for a fool, because an educated patient knows the name brand and generic names of Migraine related medicines.  They also ask a lot of questions.

I got smart, which is not the same as educated.  I now always try to have someone go with me to a doctor's appointment or a hospital trip.  When you have someone with you, you are less likely to to be tricked or disrespected.  They are there to stand up for you when you cannot stand up for yourself.    

I have a printed list of medicines I cannot take.  That list goes with me and is in my checkbook and my glove box in the car in case someone else needs to know about it.    

I may not be able to stop my Migraine Disease, but I can sure stack the deck against anything else bad happening to me as I manage it.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by
To help raise awareness about Migraine, please Tweet this post with the hash tags #NMAM and #NMAMBC and share it on your Facebook page. Thank you!

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