19-8-2010 my doctor told me I got TN after done few X-ray, and gave me Tegretol CR 200MG, take 1 x 2 times a day after food, I feel geedy, vomit and diarrhoea, it happen for 4 days. On 22-8-2010 I was fainted, lucky..my daughter and my son with me, they rush me to the hospital. I am so disappointed with this hospital,they sent me there and there, done sooo many X-ray, blood test,urine test every hour,MRI brain,CT brain and so on for 4days, they pushed me every where with a drip on my hand, finally I told my daughter to take me out of this hell. The time I discharge, my daughter pay RM15,000=, thats a very big amount for me. The next day I went to my family doctor, he also a Rheumatology, he advised me to take cataflam50mg- 3x a day after food and Lasix 40mg 1 a day after breakfast. Since then everything under control. TN distroy my happiness,its make my daughter and my son so worry about me, this is very unfair for them because they lost their father (my husband) when they are still small (my husband died 20years ago). Now I feel so scared of every thing, until I found this group only I feel I am not alone.
Dear Korin,
First, Welcome to this group, I hope that you will make yourself at home here :o). This group has been so helpful to me! It sounds like you have had a very hard time lately. I hope that the medication is continuing to work for you. From what I read, you are still struggling with the TN. Are you still able to take the Tegretol, or has your doctor stopped that drug? If so, I want to reassure you that there are other drugs out there that are useful for stopping the TN pain. I want to encourage you to keep working with your doctor to get the right regimen set up for the treatment of TN. I know how hard it is to have this disease. But the reason that your daughter and son worry about you is because they love you. You have given them love all through their lives, and they are simply giving it back to you. It is good to practice accepting their love. They are adults now, so they can take care of themselves as well as take care of you.
I wish I could give you more advice on how to live with TN, but it is an individual journey for us all. I think that it is normal to grieve the loss of a normal life, because this disease changes how we live. But it also offers us a chance to understand how much we mean to other people, and what the meaning of love is for us all. We also must learn how to accept the care of others, even if it feels uncomfortable to receive instead of to give. I hope that you stay with us here and share your story, to help yourself, and to help others.
Take care,
Lily
TN makes us and everyone around us sooo tired.
Please don’t be scared, you are with friends! bob