I'm hurting. The shocks are so bad lately I want to blow my head off. No wonder they call this "The Suicide Disease". I know that blowing my head off won't help, and I honestly don't feel like I would ever do that, however, I'm just soooo tired of the jolts & shocks. I'm so tired of not sleeping, not being able to eat anything, not being able to speak, or wash my face or brush my teeth without the shocks. I'm grateful that my TN is very sporatic, and not an every day thing, it can come and go for weeks, but seems like each time it returns it is more intense and reminds me that the TN is in control of my life. Therefore, I believe that TN is like the devil, it is trying to take my life over, but I won't let it! To God Be The Glory! Thank you Lord for sending your son to be my personal Lord & Savior! Although the pain is so intense these days, I may not fully enjoy this Christmas season, I am still wishing you all Merry CHRISTmas and may you all have pain-free days.
PS: I'm starting Topamax this week, so hopefully that will help calm the pain, will take a few weeks before I notice any changes, but I'm confident that eventually one of these meds can and will help me.
Happ Christmas and may it be pain free. Think TN has made me a more patient person, I used to rush everywhere, now I can stand in a queue and not get hot and bothered. I listen to people more these days without thinking what work I have to do. Yes TN is a demon, one we can't always beat, but with the help of medication we can put him on a back burner. Enjoy each and every pain free day. Margaret.
Wishing you and your family a Merry Christmas Robbie, I agree with Margaret in that TN has made me a much more patient person and I have come to understand more about others and listen better also.
The pain for me too, may make the family gathering this Christmas day much more difficult as I am in a great deal of pain from daily attacks. I awoke at 3 am this morning because I'd fallen asleep and layed on the wrong side of my face. I have touch triggers from my pillow too. It took medicines and just sitting quietly for 2 hours to get back to "some" semblance of sleep.
But however much pain I am in, I only have to look at other people now to know that each of us has their own suffering to carry, everyone has their issues - and even though I've always labeled TN as a monster, I cannot deny that to each person their own issues are always bad - it's a personal interpretation. No, these people do not understand the full extent of what we must suffer through, and they never will. They show concern and I am grateful for that. So my answer for myself for Christmas day, is simply to struggle through it, pretend to nibble food if I can try and keep the day happier for others and make sure I take my box of drinking straws with me for beverages on the day.
I have recently replaced my heat pack, with a sports rub heat cream. It leaves a menthol smell around quite strongly, but I now rub this cream around the back and sides of my neck - the heat generated from this cream has even sometimes been able to "distract" my own brain from the pain it's trying to give me. It IS helping.
I hope very much for you Robbie that the Topamax is the answer for you! I've never been on it, and will be interested in your analysis of the medicine later on after Christmas!
Best wishes and calm beautiful pain free days to all!
Kerry xx