Glossophary-WHAT?!?!

Glossopharyngeal Neuralgia.  Yep, that’s a mouthful and painful as hell.  I had a small episode about a year ago.  It came and went over the course of two days and then vanished.  A couple months ago Dr. Casey diagnosed me with Glossopharyngeal Neuralgia after I started having the stabbing sensations again in my throat.

I was given a short dose of Dilantin to help calm the pain down.  After my 3 day dosage,  while eating dinner I started to feel really “weird”.  There was no good way to describe the feeling.  I knew what was happening but it had been YEARS since I had passed out.  I laid down on the floor just waiting and about 30 seconds later it happened, and again, and again.  My husband gave me a sternum rub every time I passed out.  We spent several hours in the emergency room that night not sure if it was the medication or just another side effect.  Besides my blood pressure being off the charts, all of the tests came back clear.  I received some medication that helped to lower my blood pressure and helped bring some calmness back to my head.  The doctor I saw was very compassionate and very thorough.  I consider myself lucky knowing how people dealing with TN are usually treated.  I was told that I needed a smarter doctor to make a better guess as to what happened that night.  I followed up with Dr.  Casey the next morning and on top of the rarity of glossopharyngeal neuralgia, only 10% of people suffer from vagoglossopharyngeal syncope.  (yep, another mouthful)

Vagoglossopharyngeal syncope happens with your tenth cranial nerve is irritated along with the ninth cranial nerve.  The high blood pressure with passing out and heart arrhythmia I’ve experienced over the past 11+ years  finally had a name.  FINALLY I had a doctor not telling me that I was NOT crazy for having “unexplainable” symptoms.

I was pretty symptom free for about a month following that and then it started up again.  I lasted about 3 weeks dealing with lots of pain before I reached out to Dr. Casey once more for help.  He slightly changed my medication and put me on a permanent dose of Dilantin.

Today I have been on the new medication for about a month.  Do I feel better? No.  Honestly, I feel overly medicated.  I don’t feel great about 80% of the time.  I’m not able to eat hardly anything anymore.  I’ve tried to adjust and it’s not working for me.  I have reached out to Dr.  Casey again and waiting to see where we go from here.

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