Hi. Have had TN for almost 5 months and managing well with 1200 mg of Trileptal a day. Sometimes I feel I am starting to feel breakthrough pain but then think maybe it is just in my head. Main side effect is a feeling of severe nausea that can last 1 hour or 2 days of which I just have to cancel any activity or plans I have. Just hate being on Trileptal and my Neurologist says I can start going off of it in August if no problems. I don't think he knows much about TN so wonder if this is a bad idea as I do not want to mess anything up and have the debilitating pain come back...but, can TN sometimes just go away! Thanks and prayers to all with TN for pain free days.
You can get remissions on and off, but is progressive and permanent,
and meds will stop working… Or meds will be on such high dose, you won’t be yourself. There are meds you can get prescription for nausea! Call and ask.
BUT THERE IS HOPE,!
Find a neurologist within a couple hours of your area that has TN EXPERIENCE.
. Look at doctors tab
Also within first three years of TN1, should consider MVD surgery if you are healthy… CAN give years of remission… Here are success stories
http://www.livingwithtn.org/forum/topics/positive-thoughts-1?commen…
Scroll up a little to start reading
Get THE BOOK… Striking Back by dr. Ken Casey
Read, ask, learn repeat… You have to guide this ship and we can help! Knowledge is power mad the more you learn, the faster you can be better in the long run!
Hi and thanks so much for great info..so blessed to have great bfolks like you to provide wonderful information. Warmest regards. P.S. I replied earlier but don't see it so this may be a duplicate reply..still learning how to reply.
Kc Dancer Kc said:
You can get remissions on and off, but is progressive and permanent,
and meds will stop working..... Or meds will be on such high dose, you won't be yourself. There are meds you can get prescription for nausea! Call and ask.
BUT THERE IS HOPE,!
Find a neurologist within a couple hours of your area that has TN EXPERIENCE.
. Look at doctors tab
Also within first three years of TN1, should consider MVD surgery if you are healthy.... CAN give years of remission..... Here are success stories
http://www.livingwithtn.org/forum/topics/positive-thoughts-1?commen...
Scroll up a little to start reading
Get THE BOOK..... Striking Back by dr. Ken Casey
Read, ask, learn repeat...... You have to guide this ship and we can help! Knowledge is power mad the more you learn, the faster you can be better in the long run!
Your neuro is right to suggest weaning off the meds after a period of consistent “no pain” …
The very first time I did this with my neuro, I experienced an 8 ( right side) and 10 ( left side) year remission for my bilateral TN !!!
It did come back , but we should always try to be pain free first, then med free second.
One never knows…
Good luck!!
Thanks Mimi. I guess I just am never wanting to experience vthe pain again but just wishful thinking. Warmesr reagards to you and to pain free days.
Mimi said:
Your neuro is right to suggest weaning off the meds after a period of consistent "no pain" ...
The very first time I did this with my neuro, I experienced an 8 ( right side) and 10 ( left side) year remission for my bilateral TN !!!
It did come back , but we should always try to be pain free first, then med free second.
One never knows.....
Good luck!!
I was very lucky as i did reduce on my meds and i am now meds free but i know of many others who did the same and the TN returned with a vengeance. If you do reduce take it very slowly I did and I was very scared but i did it with the ok from my GP and Neuro. xx
I've had TN for 11 years but only on meds for the first 3 or 4. I still have some flare-ups occasionally (with my period or flying/driving in mountains) but they are no longer debilitating. I feel like I live with the shadow of the monster - and I can cope with that without meds!
Thanks and praying I will have your same experience.
elstep said:
I was very lucky as i did reduce on my meds and i am now meds free but i know of many others who did the same and the TN returned with a vengeance. If you do reduce take it very slowly I did and I was very scared but i did it with the ok from my GP and Neuro. xx
Thanks and hoping I have the same experience! Best to you!
elstep said:
I was very lucky as i did reduce on my meds and i am now meds free but i know of many others who did the same and the TN returned with a vengeance. If you do reduce take it very slowly I did and I was very scared but i did it with the ok from my GP and Neuro. xx
I get nausea very bad as well and ginger takes it away immediately. There are ginger chews, ginger brews (not beer) and if in the U.S. Vernors which really is high carbonation very sweet soda. I keep chews with me always. Ginger capsules work also.
I hope this helps your nausea.
Hi and thanks. I got the ginger chews but really my feeling is more in the upper throat as far as feeling sick...should have clarified that in my comments I now realize. You are so kind and I will look for the Vernors and ginger brews as that might work for me. Again, thank you for you kind and informative response, much appreciated!! Take care
Moxie said:
I get nausea very bad as well and ginger takes it away immediately. There are ginger chews, ginger brews (not beer) and if in the U.S. Vernors which really is high carbonation very sweet soda. I keep chews with me always. Ginger capsules work also.
I hope this helps your nausea.