I agree, my husband was dx with tn nearly 13 years ago and had it for a few years before that. It flares every 1-2 years and lasts about 1 week to 10 days . He only takes tegratol during that time . He does have side effects and the uncertainty of an attack but he hasn’t had a day off work and it hasn’t become worse so far. He doesn’t want to know about progression and the future but the information here has helped me to plan a bit for the future with finances and insurance .
How reassuring to hear stories like your husbands Kaylee. I have the hope that it may never get worse, tell your husband to hold on to that also. Yes your wise to plan for the future for the worse eventuality but never take away your husbands hope and do not think of it as a dead cert that things will get worse. xx
personal stories for me, I feel like they are all so similar. It's just like really?! I don't want that to happen to me but these things just sound inevitable.
Greetings elstep,
I too have wondered about the members that have posted alot and then you don't hear from them again. Is it because they are better and resuming their lives more normally, or worse and don't feel well enough to post.
Have they lost access to a computer or given up on this site? There can be many reasons as we are all different individuals with the same disease. I agree that their successes and failures with tn can be beneficial for hope and learning to others. Maybe a note in the monthly newsletter asking everyone to give an update to those who have been silent for awhile.
Scott
elstep said:
I think it is very important for people who have been successful in finding the right medication for them or who have had successful surgery or alternative treatment that has helped to keep coming back and sharing on here. There is hope are there are success stories. Lives can improve, I think that is so important to know for newcomers and long timers who are loosing hope. This is why I prefer to read real life experiences.
I have been on here for just over a year ( newcomer really) and I have followed threads of people who are in so much pain then gradually you hear their pain is easing and then they disappear! I know that is a good sign, but please come back and tell us how you are, if gives everyone else hope.
Yeh. Scott, I second that notion.. sounds terrific. :)
not a problem, I am on facebook , and very open about this, glad I could help!
Wendy
Jackie said:
Thank you for that Wendy. I have just shared your comment on FB, anonymously of course! It makes me proud to be a member here!
crashgirl said:You know the one thing that Hopkins told me was to keep up on this site, they felt that this was the most informative thing for everyone with this disorder. Thats some heavy duty praise right there and says alot! They even told me that the average neurologist had no clue how to handle this disorder and that most had the wrong info. When I was diagnosed I was told this would just go away in about two weeks, once I researched this site, well it scared the crap out of me, but at least I wasnt sitting around waiting for it to go away! I got pro-active at that point and feel that had I not read this, I would be lost right now.
Wendy
Scott and Min, You feel like you know someone really well as your following their comments and your feeling for them and suddenly they stop! I wrote a personnel message to a couple to ask how they were but got no response and of course you have to respect peoples feelings.
I myself stopped coming on this site for a few months because of fear as I was getting upset reading stories of people who's TN was much worse than mine and I was so afraid I would end up like that. During that time I stopped getting any alerts. After a while I came back.
I would love to hear more positive stories on here and I think there are many but people leave and dont come back when this happens. People may think others dont want to hear this because they are in pain but I think it i the opposite we all want hope.
To me, the medical books were more frightening for TN. They lacked much in the way of hope or any spirit of being able to cope. The facts, I found, were disheartening. As one person put it, and I can't remember who, "there was just no good news about this condition". And, I suppose, there isn't a lot of actual good news about TN, but while I find it hard to read some of the stories here, I also am given hope and encouragement about the many clever ways people learn to cope.