On most days, I have an average of the type 1 attacks 5-20 times but always have a constant level of 7/10 type 2 pain. I have been trying to understand the severity of the disease in a way that I am able to explain it to doctors and those around me but often the words just do not come close to providing a true account of what it is I feel.
Most people with TN will speak of flares as a period of time when pain is at a maximum and can't seem to be relieved by medication or any other methods. Attacks are the more sudden, short-lived pain that brings you to your knees.
I have come out of an atypical TN (aTN) flare of 36 hours now and thought it best to just explain it as it is....perhaps someone out there will understand and it will hopefully help them to understand their friend, loved one, or colleague with this horrid disease.
For the past 36 hours I have been unable to eat or keep even liquids down. My husband has made sure that I have at least tried to. The pain has been mostly a sensation of some demon pushing out my eyeball with a knife from the inside, coupled with a knife or ice pick stuck in my ear and a blowtorch focused squarely on my jaw. I struggled to speak, move or focus on anything with my eyes. Vomiting was all I could do, but that just intensified the pain. I honestly didn't care if I wet myself as walking to the bathroom meant I would feel the vibration that comes with moving, so getting to the bathroom was not a priority. What could bring about such pain? This time... Unintentionally turning to face my husband in bed while he was sleeping and having him breathe onto me. It's not his fault,not mine either...I'm just an atypically typical TN sufferer.
During a flare of 10/10 pain my family begs me to allow them to take me to the emergency room. I know that there are people out there who believe that because I don't go to the hospital, it really can't be that bad. However, being on high doses of schedule 6 narcotics on a daily basis, and hearing the accusations from doctors or pharmacists about being a drug seeker already, it seems quite pointless to go to a place for help when there isn't help available. It's a chronic, progressive condition, so a short term knockout by meds in the ER with a dose of irritation from staff is honestly not worth it. In this case, based on the feedback from fellow support group members, I am again, atypically typical.
So today, I am back down to a bearable 7/10 aTN pain and have had a few 8/10 TN shocks.... But I can walk today, I can talk and I can finally focus enough to read and write.
just another atypical typical day for me. Wishing the same for those I know living with an elephant on their face.
There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader
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