My 12-year-old daughter has been suffering from severe inner-ear pain that feels like an ice-pick stab since October, 2014.
We went through the usual hoops -- pediatrician for possible ear infection, orthodontist, TMJ specialist, ENT specialist, and finally to a pediatric neurologist. The orthodontist is the one who mentioned Geniculate neuralgia as something to look into. After researching, I do feel that is what my daughter has
When we met with the neurologist, she had never heard of GN, which concerned me, but she has been researching the protocol of treatment other neurologists are trying. Two MRIs and an MRA reveal no issues except possible shrinkage of some cranial blood vessels. She said the neurosurgeon she consulted did not consider that the problem.
My daughter has been on just about all the drugs recommended for GN without any success. She is now just starting Lyrica so we don't know if it is working yet. I'm worried about side effects but desperate to get her pain relief.
If Lyrica doesn't work. the neurologist said she will try Topamax next.
I read somewhere on one of the discussions that some patients are resistant to the usual nerve pain medications. Never heard that before. Want to ask the neurologist about that.
After watching my daughter be in pain for almost a year, I am desperate to find a solution. It has been helpful reading other people's posts.
Sorry Stacey I don't have any personal experience with this. I would advise waiting to see if Lyrica brings any relief if not go back to neurologist. mary
Stacey, For GN like the other neuralgias, it helps if you can work out what the trigger is. I get knitting needle ear and all sorts can set it off - noise, cold wind, stress etc. and using earphones & buds. Maybe see if you can work out what your daughters triggers are and reduce them. Toppimax is great for this, but again, what works for one doesn't always have the same result for others. Trial and error unfortunately seems to be the only way to work out which / combinations are best suited for your daughter.
As per my note, we have a geniculate neuralgia group on the TN community if you want to check it out.
I thought I would check in with you to hear the most recent "news" concerning your daughter. And to echo the comment from Smiley. We often hear from TN patients who also have Geniculate ("Nervus Intermedius") Neuralgia, and the group at Living with TN that addresses that disorder is fairly active.
Please let me know if I can assist with further research or doctor referrals.
Thank you! My daughter is weaning off of Lyrica because it provided no pain relief and has just started Topamax. Really hoping this will help her.
Thanks for checking in.
Stacey
Red said:
Good morning, Stacey.
I thought I would check in with you to hear the most recent "news" concerning your daughter. And to echo the comment from Smiley. We often hear from TN patients who also have Geniculate ("Nervus Intermedius") Neuralgia, and the group at Living with TN that addresses that disorder is fairly active.
Please let me know if I can assist with further research or doctor referrals.