Thursday, 10 March 2016

Hour by Hour, Day by Day.

My Stereotactic Radiosurgery has failed. I know it can take some time, but I've given it enough time to work. I'm disappointed, and sadly my pain is worse than ever. 

On my left side, I have Atypical Trigeminal Neuralgia, but now I have pain on my right too. Unlike the left side, the pain comes and goes on my right, which means I have TN type 2 on my left and TN type 1 on my right. What are the chances that I would get this hellish condition on both sides? 

The past few days have been really tough and sleep has been practically non existent. Sometimes I grab a few hours sleep here and there, but I can't sleep now. The pain is just too extreme, I literally want to bang my head off the wall. Yesterday I wanted to rip my face off. It's a real worry too, my mood is getting darker and darker as the pain gets worse and worse. 

Finding the positives in life is difficult. I look around me and I see my cat and dog snoozing happily, and I envy them. Writing this is hard, I know what I want to say, but the bright screen is seriously hurting my eyes, sending sharp stabs down my face. If I didn't know how to type I would be in trouble. 

I have said this before and I will say it again. We need a cure. Living like this isn't right and it isn't fair. We are pumped full of medications, used as guinea pigs to see what, if any procedure will work, There has to be a universal solution, they can walk on the moon and dive to the deepest depths of the ocean, yet fixing us is not even on the World Health Organisation's list of priorities! The Light Up Teal campaign is well underway, and we will change that. 

Light Up Teal for TN - TNNME

Taking it hour by hour and day by day is how I survive and I am surprised my sanity is still intact. Will it be intact in a years time? How about 2 years?? 

Petition to the World Health Organisation - TNNME- Trigeminal Neuralgia Petition to the World Health Organisation, please sign and share. 


  1. Sarah, I'm sorry to read that things are bad. We are starting my daughter on CBD treatment with hopes of some pain relief. This is something that we have discussed with her pain Dr. and at this point he is open to try anything. Yesterday she had the Botox injections done to try for some relief so far nothing, we should know by day 3 if this has any effect. I will undate on the CBD, however like any Meds if we see anything it will be about four weeks. After that we will be going for THC. Please stay strong, I know what you're going through, because I see my daughter suffer all day and night and I wish everyday I could take her pain. Please stay strong...

  2. My daughters Botox treatment has dropped her pain level from off the scal to about an 8. She is up laughing and shopping with her Mom and sisters. The pain Dr. put some of the injections as close to the nerve as he could. It was 18 injections in her face and head with 2 in her shoulders. It won't hurt to try.

  3. I hope you can find something to try and relive the pain, even for a few hours to sleep. I know how it feels to not sleep because the pain is so bad. I spent 4 months in never ending 9-11 level ATN pain before my diagnosis. I would nearly OD on a variety of pain meds to get 3-4 hours of sleep a night. By month 2 I wanted to die so badly I gave the narcotics the ER kept throwing at me to my Roommate and told her she could only give me 3 at a time. By the start of month 4 I was hallucinating mildly due to sleep deprivation. Even now over a year after my diagnosis I still have low to medium levels of breakthrough pain everyday, and short term memory problems from the sleep dep and medications. I hope you can live moment to moment until something helps a little. I know I've been there, and as long as I don't contemplate the future possibilities I am able to be happyish now. I can be emailed at ELHinze@gmail if you ever need someone to just listen. <3

  4. Hey Sarah, I have TN too on the left side of my face around my mouth. My TN pain level goes up and down every 3 or 4 months. The past 4 days, chewing and brushing my teeth give me a pain level of 10, on the scale of 1 to 10. I'm too afraid to have surgery and fear that surgery might aggravate my TN so I just bear the pain... Also, surgery is expensive in my country and I don't have that much money. My religion or faith has also helped me to bear the pain

    In 2007, 8 months after the initial diagnosis of my TN, the part around my upper mouth would feel like electric current was flowing around it every minute for 5 minutes. A Catholic priest who was said to have healing hands came to our parish church. I'm a Catholic man who tries to live out my faith and I lined up with other people to get this priest to lay his hands on my face. Days after that event, I noticed the "electric current" flow gradually lessening.

    I'm still praying for total healing of my TN. I will include you and all others who have this condition.

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