Had a rough week, experienced intense pain of face for second time, first time resulted in root canal surgery which didnt help. This time for some reason I knew it wasnt connected with my teeth. I was visiting Cornwall with my hubby and was so miserable with this blooming awful pain, it was like going through labour pains again but this time it was in my face and there wasnt a baby to look forward to. Tried all different pain killers to no avail and ended up at a local hospital who didnt have a doctor to see me! So we put up with the pain, me pain in the face and my hubby, pain of me moaning! Back home 4 days later and straight to the GP who diagonosed TN(Trigeminal Neuralgia) straight away. Great! gave me details and on to google I went. Flipping eck as we say in Yorkshire, its an old persons illness and I am only 57 and doesnt sound too hopeful. well after going through cancer then a heart virus I thought my medical capacity was more than full but here we go again, can it be a result of that nasty chemotherapy yet again I ask?
Anyway had a few days on Gabapentin and now trying Carbamazepine, still with little or no relief. But I do sort of feel as if I am in cotton wool and have done alot of sleeping. Think you could say I am not functioning on all cylinders- in fact probably not even on one. Eating soft food and drinking through a straw!! as a good coffee addict this is not good! I have a wonderful supportive family and network of friends but I am sure they are all thinking how greedy I am having yet something elsewrong with me, although I am sure they would deny this. Doubling medication on Monday so dont know which earth I will be on by then, watch this space but if you see me running down the street naked then remember its the medication and dont take a photo the camera will break.
I am a Christian and believe very much in the power of prayer------for other peolpe, so if you are reading this then please do say one for me, I would like to say please pray that I will endure the pain stoically and let God use me in helping others, but really I would like for this bloody pain to go away for ever.
Forgive my self indulgence in writing all about me, me, me, I am not really like this honestly, in fact I can be quite nice and people tell me i am a good friend to have just not when going through a TN phase.
Oh annieblade, your sense of humor shines through, AND THAT will see you through anything!!
Sorry to hear of your recent diagnosis, but I am glad you found us here at LwTN. It has been so helpful for me to have the support and learn what others do to manage. There’s a wealth of information and great people!
Tegretol (carbamazepine) is usually the first med given to treat TN, it takes time to build in your system as well as find the right dose that works for YOU. Have a plan with your doctor on how to increase your meds when it’s not covering the pain. Usually many people find relief between 600-800mg, but of course we’re all different.
Everytime you increase you’ll go through that feeling as you say “of being not of this earth” ha ha, but side effects usually dissipate as your body adjusts.
One suggestion…maybe have a neighborhood watch for the next few weeks to prevent you from your naked romps down the road ??! Ha ha!
You’re a survivor, your strength of spirit is evident. I hope you find relief of your pain soon. I use a microwaveable heating bag, as heat helps to take the edge off my pain, maybe something you can try?
(( hugs )) Mimi
Hi, Please read the response that I just posted to Janice. There is nothing more powerful than prayer....I will pray for you too. Please try Horizant - and give it a chance!!! Many blessings to you for mercy and grace from our Heavenly Father. Nancy
Hi, I am only in the early stages of this too and yes I too could not believe the pain. Last week when my husband came down stairs I was sitting on the settee with a blanket over my head.
Just a couple of helpful things. Wear a hat and try to keep your head warm. It really helps I knitted this huge thing that I wear to bed, not a pretty sight!!! Last Saturday my pain was really bad and then the meds really don't move it, I was crying and my husband got out my hairdryer put it on warm and used it on my head. What a relief, it really helps.
I too believe in the power of prayer and I shall remember you in my prayers as I do all the people with awful sad stories on here.
This is a really informative site and I was very glad that I found it, it helped me to understand what I was going through but more importantly it helped my family understand too.
I warm up a rice bag which helps many times to fall asleep. also I found a snowmobile polarfleece hoodie that we can wear under helmets...it has a face cloth that you can pull up should wind blow near your nose or eyes etc...My harley has been parked due to the TN. I may get one ride in this summer...lol I certainly understand the warmth...also try your microwave with your hat....dampen a hand towel, place your hat in it and warm it up...it will last longer even with the towel over your hat on your head...let us know how it works...