I am a 36 year old female and my first episode (or at least the first that I associate with this condition anyway) was during Thanksgiving vacation when I was 26. I was speaking with my family when all of a sudden I felt a sudden something. I had no idea what it was as it stopped instantly - a shock of pain? a shock of heat? Just a sudden knowledge of a part of my body I cannot usually feel? It was weird. I stopped talking. I told everyone to stop talking. When next I swallowed - there it was again... a stabbing pain that resonated from my throat up to my inner ear - then it was gone. I refused to speak. I refused to swallow. I started to panic - and drool... a lot. Very quickly I realized that crying and getting upset increased my saliva which increased my need to swallow which increased the occurrence of the pain which in turn increased my panic... and so began what I now refer to as my "silent tears." I was rushed to the ER where I was treated like a drug seeker - forced to have x-rays and prodding in the area of the right side of my jaw, neck and ear. They didn't want to give me anything... Thank goodness for my dad who went to battle for me and I got Demerol... and pain killers... Then went home to bed.
The diagnosis... I must have dislocated my jaw and it went instantly back into place which caused a series of muscle spasms. Don't worry. You'll be fine.
5 years later... This time with my infant son and in a conversation with my sister - the above scene played out again. AGAIN. Same hospital, same reaction... oh you must have TMJ. Diazepam. Go see a Dentist.
1 year later... This time while watching TV with my husband... ER... Diazepam and IV Ibuprofen... TMJ. Go see a BETTER Dentist.
Ugggh... These episodes are debilitating. I cannot do anything. Saw a dentist. Had my bite shaved down. Got a bite guard. Fingers crossed...
1 year later... this time while pregnant and alone with a 2 year old. Knew I could not go to the ER and could not have medication. Put my screaming son to bed early and slept on a bag of peas...and cried.
Since then I have not gone to an ER... every time since I somehow convince myself that it's not really the episode... in fact it takes me a good 20 minutes to convince myself that yup, this is it again... and then 10 more minutes before I am floored with pain.
the most recent episodes were July 2012, May 2013 (during which I was CONVINCED I was going to die with my daughter in my arms) and August 2013... the gaps of, well I guess they refer to it as remission, are shortening... and yeah... I'm worried. I was finally diagnosed in June 2013 as GPN and have since had 3 MRIs, 2 CT scans, 1 Nuclear Thyroid Scan, 2 ultrasounds, and an unbelievable amount of blood tests. All of which have basically come back and said - hey - you're good. Hear that... I am fine. Whew... I guess I can relax, right?
Well... I am not. Relaxed that is. I live in fear that it will happen again. I have an emergency "action plan" that for the first time was put into play this week. But I am scared. Scared that it will happen tonight. Scared it will happen during my son's Karate graduation and I will miss it. Scared that all of my contacts will be "busy" during an episode. Scared that my job won't understand. Scared that it will come more frequently. Scared that the valium that seemed to help last time was a coincidence and it will not work next time. And scared that it is something more. I hate this. And more so - I hate feeling like nobody around me understands.
And that my friends... is my vent today. And in a crazy way, it helped.