hi this is my 5th week after mvd and still having mostley a num ber 10 all the time. is there any other causes that can cause tn? i go back to my follow up appt. on monday. i dont know what to do with my self, its getting to hard to do anything all i do is pace the floors all day. can someone help me on any suggestions. thanks michelle
michelle - do you feel your MVD worsen the situation or is it the same ?
i'd advise you to go to :
a. your refular eourologist to see what he think nexts
b. a pain clinic - and get all the painkiller meds you need it order to be pain free for a while even if it means side effects such as being dizzy or sleepy etc. you must break the pain. and between the time you figure the cause of it - you have to find ways to decreases it - (i know it won't go ways 100 % and even not 70 % )
My understanding is that certain autoimmune diseases can cause TN. I know Sjogren's Syndrome is one of them, but there were others...I just happen to have SS. I think, in these cases, it is sometimes called Trigeminal Neuropathy, but it is the same thing as TN. At least if what I was told and have read is true. I do not, however, know fully how this works. Do you have other health issues?
Booklass,
My name is Lynnette. My dad suffers from TN. Just to let you know, my dad was diagnosed with Myasthenia Gravis a few years ago. Now, he has developed TN. I was told the same thing about once you have one autoimmune disease, it can often lead to others. I'm thinking that's what caused his. Best of luck......
Lynnette
Lynnette, I am glad you said something. I try to find information on what is going on, but it seems like it is all on my shoulders to figure things out. Thank God, literally, for this site.
I know. This site is wonderful. What a blessing. How long have you had TN? Have you tried anything so far?
Where did you have your MVD done? There are many dr's that do them, but need to make sure they have an expertize with TN.
i had my mvd done in new york by dr babu.
Lynnette, I take Lyrica and Tramadol, plus practice "avoidance techniques" like wearing ear plugs to help with ear sensitivity and pain, not letting my lunk headed puppy smack me in the face when she wants to get kissy, avoiding extreme temps (ha, ha, ha...it's WEST Texas), and things like that. Did you mean have I had an MVD? No, I have not.
As to how long I have had it, well, that is a good question. I had my first attack, now I know, when I was pregnant with my oldest son, who is 24. There have been other times, looking back, that I have to wonder. Things increased, however, in 2009, the year I graduated college, and I was feeling pretty bad, but still not at my worst. In 2011, I was finally diagnosed because the pain had become chronic and horrible.
I tried a few combinations of meds with Tegretol always being the primary med. For me 400 Mg of Tegretol twice a day and 600 Mg of Gabapentin twice a day keep my pain under control. The downside is I constantly feel medicated and it’s very difficult for me to get motivated. So for me it’s dealing with the affects of medications or dealing with the extreme pain of TN. Your Dr. should know about meds to deal with nerve pain and anticonvulsants. There is no need for you to be in pain if you are on the proper meds but you may have to deal with the side effects of them. Good luck and don’t give up in your search to get your pain under control.