I have just been diagnosed but have been dealing with symptoms for a year now. While I am happy to finally have an answer I so wish it was something that was going to go away and never return as I'm sure many of you can understand.
Everywhere I read says that this disease(?) or condition commonly increases in severity and becomes resistant to medical therapy. I have had a few break downs and am having trouble dealing with the pain now and am having alot of anxiety thinking it's only going to get worse.
Does it ALWAYS get worse and become resistant to medication? How do others cope?
I think being here on this website around others who know what I am going thru has been an integral part of my healing.. I also have a good anti-depressant that helps with anxiety too. My neurologist told me that my nerves can get worse or get better or stay the same. There are periods of remission. Some people go for very long periods with type I of remission where they have no attacks at all. I think tho with Type II there are remission periods too, but is has a tendency to accelarate over time. But there are exceptions I think with anything. Time will tell. Stress does add to the pain level of this disorder for sure. Meditation is really good coping mechanism for stress. Best wishes to you for finding meds that work well for you..
I'm sorry to hear about your pain!!! This can be a very hard thing to deal with. Having people to talk to who r dealing with the same thing really helps. I wish I had found this group earlier. I hope they can find some meds to help keep the pain away. If you ever have any questions feel free to message.
Nancy, as your friend I have to suggest to you to save your energy to learn to cope with the diagnosis and try not to worry about the future so much, sorry if that sounds harsh as I don't want it to be. I am now 7+ years into TN, in fact in time I have learned better ways to manage my condition and it is better controlled now than years ago. I have done this by listening to my neuro and site information. I take my meds regularly and NEVER play with the dosages. I always do what my neuro says. It has helped more than you can imagine. Apologies to all the members who also do this and still have no relief, that is very hard to bear. Worry about tomorrow is counterproductive to how we manage our TN, There is a lot of information on COPING WITH CRISIS in the Face Pain Info.
So that's the hard facts, as your friend I would like to say I am so sorry that you are struggling just now. I have been there and it is no fun:(
I so agree with Jackie ,when I first had TN I wasted so much time just worrying how I was going to cope with this for ever !
Now I take my meds and I am more or less "normal" I still have bad times ,but a lot of good too ,I used to be scared to make arragements or book anything in case I couldn't go ,I was afraid of letting friends down ,now I think if they don't understand they are not my friend .
If my pain is really bad enough to take myself off to bed I watch easy DVDs love "ugly Betty" but don't tell anyone .
Yes take your drugs ,don't think oh I am ok today ,because then you won't be okay tomorrow as the drugs wont be in your system ,love Lyn x