It gets so bad

Yesterday was horrid. It came on like a train wreck when I was gone. I was home within 20 minutes but she suffered for hours. Begging to go to the ER. I took her to her PCP to ensure she does not have another ear infection because the other ear is now plagued. I called the neurologist and am waiting for a return call. Today I gave her both the indomethician and phenergan at the same time. The neuro said to take the phenergan an hour after the indomethician if the pain doesn't abate. I just want to her to have some time with a pain level below 5.

These attacks are so horrid. I have so little to offer other than myself. I hear her now, talking nicely with her brother. I pray today is a better day. We both need relief. My own disabilities are exacerbated by stress and we have a ton of it.

She is now up to 300 mg of Neurontin. God, I really need a break in the storm, for her sake. I can manage the mystery of redemptive suffering and offering one's life for another physically, daily. It is not easy. But for a child this is beyond comprehension. My whole being aches with few to talk to; few can comprehend.

I strive to remember the early days of my diagnoses. My frustration and fear I recollect vividly. To see it in her and know the pain is so much worse leaves a path of physical and emotional destruction. She sounds in good spirits now and I am toast.

I belong to a support group for my own health issues and how do I put into words what is happening?

Hi,

I just wanted to say that I am so sorry for what your daughter is going through. I am 24 years and have had TN for over 6 years and it was so hard to start experiencing TN when I was 17, but your daughter is so young and shouldn’t have to experience this disease. I hope you are able to find support on this board and a really doctor.

I will be praying for you and your daughter

Thank you Beth.

Simple notes like yours help tremendously.

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