I remember being in your shoes vividly and hoping/willing ANYONE to help. The waiting for the appointments was so very hard. There’s a wonderful supportive group on Facebook as well: Young Patients Committee (YPC) of TNA that has some great people in it.
Hello. My 9 year old daughter has been experiencing extreme pain in her ear unrelated to an ear infection for a month. Lel, just like your daughter, the diagnosis for now is geniculate neuralgia. My husband and I are so scared and worried and feeling hopeless. She was hospitalized on Monday - CT scan & MRI results came back normal, as well as blood work. I don’t know what to do. My daughter’s on tegretol 3x/day - with no relief. We’re following up with neurologist on Monday. Please any advice or help is greatly appreciated.
Thank you.
I am so very sorry to hear your daughter is in pain. I have lists of dr’s our daughter saw as well as the titration of her medication over the course of our journey. I’ll private message you my email address and you can send me a note there. I can then send you the details I have in hopes they may help her neurologist.
Near the beginning, the dr’s used lower doses less frequently of tegretol for our child combined with neurontin.
The final medication combination for our daughter which reduced the pain the most without awful side effects was this:
7am: 300mg Tegretol
4:30pm: 300mg Tegretol
8:30pm: 300mg Tegretol, 60mg Amitryptiline
Plus rubbing on a compound gel of Amitryptiline/Lidocaine/Ketamine to the hard part of the ear before the opening (the pinna)
There was suspicion near the end of our many many visits to dr’s that it was actually auriculotemporal neuralgia which is why it was responsive to an external gel for some relief.
I cannot emphasize enough the importance of Pain & Palliative Care. I was so against going initially because I thought it was giving up, but the team we had was amazing and ultimately once the medication combination was right they were the ones who got her up and off the meds and out of pain.
Thank you. I really appreciate all the information you are providing. We
are following up with the a pediatric neurologist tomorrow for the first
time. I will definitely ask about the medications you mentioned below. As
of now, my daughter is on Tegretol 3x’s/day.
Thank you so much for responding to me. Its giving me hope.
How’s your daughter? How long has it been since the pain has completely
stopped?
Best,
Miranda
I have it too , I’m so sorry that your child is going through this .
I’ll be super quick here , I’ve had it for 3 yrs , tried every pill , my next step is MCD. I wad so depressed I tried something completely different . Out side the box , weaned off all meds and began vigorous exercise 3 days a weeks for and hour and 15 min each class . And it’s like a miracle, the constant throb behind my ear is gone !!! I ever stopped working out and it came back , so I started back up and the pain is gone again ! It’s a miracle for me , I hope it may help someone else someday. Working out is hard but it feels a lot better then those meds I was taking . Best of luck to you guys
Thank you. I really appreciate your response. Glad everything is working out for you and I hope it stays that way. We’re trying and keeping hope.
Best.
After reading the last post saying exercise helps, bit of a leap but consider the neck as a cause, GN and it’s nerve share the nucleus in the neck, knowing how kids throw them selves on trampolines etc. How about a gentle massage on your child’s neck muscles every evening? Gentle being the word, for four or five days,see if it helps any.