Monday, June 23, 2014

Learning Your Triggers...

How would you like being told by your neurologist that you are the first case of trigeminal neuralgia he's seen in 30 years? 

We all know the throbbing, the ice pick stabbing or electric shock that comes from nowhere, that wave of intense pain that literally knocks you off your feet. The pain cycle is inevitable and so are the feelings of anger, fear, and depression. We all know the feeling when we get to the end of the painkiller bottle, have a month before our doctor can see us, the painkiller makes us a zombie and unable to function, or worse, the painkiller no longer works and the doctor refuses to prescribe anything stronger for fear of drug seeking.

It's important to try and understand this disease and learn what our triggers are. I learned the hard way that powerade is one of my triggers. Every sip caused unbearable pain to the point where remission was a foreign word, but something longed for like a pot of gold at the end of a rainbow. I also had a crap job as a customer service representative where I had to give misleading information to less than intelligent customers, so you can imagine I got cursed at a lot, plus the management allowed the customers to verbally abuse us and paid us virtually nothing, so of course that caused a significant amount of stress. In addition to the verbal abuse, they had the thermostat on sub arctic temperatures, which coupled with my topamax and tegretol made me even colder, which also triggered numerous attacks. Talking on the phone for 8 hours daily triggered attacks, smiling sometimes triggered attacks, as well as chewing. Naturally, this leads to a deep fear of dentists and any dental work, which isn't a good thing because that will lead to massive tooth decay and tooth loss and cause more facial pain in the long run, which also increases stress.

I have Atypical Bilateral Trigeminal Neuralgia, meaning it's on both sides, but the pain presents primarily on the left side of my face. When I sleep on the left side, that can trigger an attack, and I have to sleep on my right side all night, which causes my entire right side to be sore.

Never a day goes by without my maintenance meds and my rescue meds and rarely is there a day without some type of pain, even if it's a level 1. With this disorder, we learn how to cope and function with different levels of pain and if we aren't completely debilitated, then it's a good day.

There are some natural pain relief that I use that seem to help a little and takes the edge off of the pain when I have an attack. Of course there's Orajel which numbs the gums quite nicely, but my new favorite is a few drops of tea tree oil directly on the tooth above the nerve. Or, put a few drops in some warm water and use it as a rinse, just make sure you don't swallow. I have heard that peppermint oil and oil of oregano has some healing properties as well, but haven't used either.

Every day in remission or pain level 3 and lower is a good day!

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