I went to the ER Saturday. Cat scan, steroids and Dilantin. I had a Gamma in March of 2012. I was teaching and running and living again. If I knew it was going to end I would have done more. It seems so cruel. I called last week about a strange numbness on the right side of my face. I was told this could happen. Waiting for a brain scan now. The pain crept in slowly and is worse than ever. Gabby some crap has been thrown into the mix now. I need to not cry it hurts my face. I don’t want anyone in my family to know it is back. I feel so desperate. I feel like I failed somehow. My poor husband. He looks so terrified. I need to go calm down.
Hi Lou. I’ll join you in praying. That is what keeps me sane while I endure this horrible affliction we share. I TOTALLY get how the crying is the natural reaction - every day/all day but can’t do that because it’s a trigger for the pain! And OMG the ER visits. They are so horrible to withstand with the waiting…and then the relief is so inadequate and short-lived. I was a teacher too, but before I got this condition. I could NEVER teach now because TALKING is a trigger! And I was a daily fitness fanatic - for over 20 years I kept very fit. Then came this condition and I’m bedridden most days for the past couple of years. (I’ve had the condition ATN for 8+ years - 6 of them it was so much more manageable, kept my normal life and activities - milder once a month episodes.) Now I have daily pain due to stress past 3 years that exacerbated the pain into a Chronic Pain Syndrome. So let’s pray for relief and remissions as we also pray FOR RESEARCH TO FIND A CURE!!
You poor dear! I had gamma in December 2012, relief did not occur until 3 months later and lasted only 8 months. Just had a second the end of March and got relief after 3 days. I pray every day it doesn't come back again. I try to live each pain free day to the fullest as a gift. I whiteknuckled it from last November to March without pain meds, they made me a zombie. ER visits with 3 hits of Diluadid did not help one bad attack a few months back. My husband is also terrified I'll get this back, my (now adult) kids are also wary and every time I grimace they think it's back.
Hope you can get in to see a good neuro and can get some relief. I know I'd take permanent numbness in my face over a return of TN. Is MVD an option for you? I'm not a good candidate due to brain surgery years ago for Chiari malformation (scar tissue is the problem, I guess).
Mollycule
mollycule said:
You poor dear! I had gamma in December 2012, relief did not occur until 3 months later and lasted only 8 months. Just had a second the end of March and got relief after 3 days. I pray every day it doesn't come back again. I try to live each pain free day to the fullest as a gift. I whiteknuckled it from last November to March without pain meds, they made me a zombie. ER visits with 3 hits of Diluadid did not help one bad attack a few months back. My husband is also terrified I'll get this back, my (now adult) kids are also wary and every time I grimace they think it's back.
Hope you can get in to see a good neuro and can get some relief. I know I'd take permanent numbness in my face over a return of TN. Is MVD an option for you? I'm not a good candidate due to brain surgery years ago for Chiari malformation (scar tissue is the problem, I guess).
Mollycule
Just got back from the dentist. Had molars checked. Everything’s ok. She gave me an oral mouth wash with lidocaine. MRI on Wednesday and then back to Philly with the films. So much pressure in my head. I am a zombie, but need to surrender to it. Thanks for the information on your situation. Going to try and sleep.
I hope you are resting! You did not fail in anyway, not enough is known to know what will work for one and what doesn't for others, TN is bad enough, don't beat yourself up about anything! It is just darn frustrating, I don't have insurance so have to just go with Meds, but each month I have to up up the dose, only Gabapentin and also topicals, over the counter. No doubt it sucks, but you have done nothing wrong. We are all survivors with this, my hubby at the age of 52 has become permanetly disabled, I am his caretaker. The situation seems pitiful, but TN or not I won't quit and I know you won't either. Don't be ashamed if something didn't work, it is not your fault in anyway. It sure is a battle everyday and don't we all get darn tired of it, yes, but we are here for you and support you 100%, venting is such a good release with people who get it. I have days I want to give up, that is for sure, but we keep on, embrace your hubby's love, you have done nothing but have TN, we all ask why, I know I do. This site has saved me on many an occasion, know how much we care, I will be praying for you. Contact me on or off list anytime,
Gentle Hugs,
Betsy