TN rapidly progressed
My frustration has been the lack of knowledge in my state by both neurologists and other healthcare providers; especially when experiencing a severe flare attack. It has only been through my own research and support groups like these, that I was able to find a neurosurgeon in NYC who dx me with TN.
My pain began with left side lower jaw pulses, which progressed to being unable touch the my left side my cheek, brush my teeth, laugh or smile as to avoid triggering the pain. ( which smiling and laughing are my main known characteristics) Most recently, my TN sent me through a three month battle with extreme crushing pain flares which last over an hour at intervals of sometimes 5-7 waves a day with left side paralysis, and jaw lock' et.. I have not been able to function with daily activities and the pain is so excruciating it has sent my normal low blood pressure skyrocketing to over 200/140! Having multiple attacks in succession has also, drained my optimistic soul and hopelessness does come over me. If not for my supportive family, I may have not be able to function at all. But most of all, the lack of insurance coverage and access to be able to have highly specialized image studies.. at major medical centers is astounding, and the misperceptions of uneducated HCP's who place a stigma on you.
I believe if there was a device created to simulate the pain to a health care provider that we experience with TN there would be not only a cure but awareness, and never again would we be looked at as many of do now as having a mental issue.. The pain is real the anxiety of not knowing when an attack is coming is real and the realization that most folks can not comprehend what you are experiencing coupled with the reality of perhaps being forever altered from a healthy function life is frightening.
But wish you all positive healing energy !!! And empathy and compassion!
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