Hi,
My mother-in-law has suffered from TN for over 30 years. During this time I have seen the effect it has had on her and the wider family. She has been unwell recently and due to her deteriorating health is no longer suitable for surgery that was offered a year ago. She will be home soon and although she is on a regime of tegretol & gabapentin I was wondering what else she can do help with the pain? What strategies do others utilise to help with the constant pain and the severe episodes?
Many thanks
I have finally found combination that seems to be working.Tegretal (forget gabapentin) 15mg. oxycodone 2X day, 25mcg/hr
fentayl pain patch 1 patch every 72 hours. This has cut back my episodes to maybe 3/4 bad ones a month .
The tegretal is the chewable 100mg 2X daily. The MVD I had at Duke did not help me. Also I quit feeling guilty about my pain and inactivity. We can't help having this god-awful condition therefore we owe no one explanations whatever we have to do to make ourselves as comfortable as possible
best wishes
judith
Lidocaine patches and cream helped me some : )
Thanks for your input. Other than medication are there any other techniques or 'tricks' you have learnt that help to either reduce the occurrence of the severe attacks or help control the constant, underlying pain? Her current medication is 1000mg tegretol (in 4 doses) & 600 mgs gabapentin (in 3 doses) daily so anything that would avoid increasing the medication would be helpful.
Thanks
Physical therapy consisting of mild stretching and resistance training; eliptical 2hrs p/day (work up to a time that is doable…it took a year to get up to this amount of time). Movement in general anytime is beneficial. The more movement there is, the more endorphins come down and minister to the body. Prayer for wisdom and discernment. Become a prisoner of hope…regardless of the trappings of illness. A nice manicure and pedicure from a professional or myself is a boost as well. Little, lovely things scattered throughout the day lift our spirits. Thirty years is an amazing feat with TN…my congrats to her for her tenacity and persistence! I draw a lot of strength from her story!
Thanks for your reply Lynda. The suggestions are good - unfortunately her mobility is poor at the moment but we are working on that. I like the idea of lovely things scattered around the house - anything to distract her and keep her mind occupied.
I met my husband in 1984 and she had been experiencing pain for a few years befreo then but it hadn't been diagnised. She had subsequent dentist visits (doctors thought it was a dental problem) ebfore she was finally refererd to a neurologist. It still took time for a proper diagnosis and then to get the teratment right. In the initial stages she had occasional bouts of pain which lasted a few days/week then months with nothing. Although over timne it seemed ot alwasy happen during the Christmas period - whetehr it was related ot stress ort not vcan't say. Over time the episodes became more frequent, lasting longer etc.... as a result the dose of tegretol & gabapentin increased to such a point that to control the constant pain she was turned ionto a zombie. This went on for quite a few years until about 8 years ago and we finally managed to get her refereed to a consultant who suggested a glycerol injection. This was like a miracle. In about a month she became pain free and no medication. She had her life back !!!
This lasted for a bout 2 years during which time her husband died. A second glycerol injection was not as effective but she was able to reduce her medication quite a lot. However it has not returned with a vengeance but her health is such that she is not fit for another surgical intervention so we have to find ways to manage.
In all the time I have known her this has been a shadow hanging overhead and has got worse. But she has been a fabulous mother-in-law, mother & grandmother and soldiered on through it all. I am sure lesser people would have folded by now. I hope that this story may give inspiration to others and help them carry on the battle.