As I’ve been watching my baby man wrench in pain for the past week, I’ve relentlessly been trying to find alternative solutions for pain management. I’ve heard mention of accupuncture and also botox injections. Can anyone please share their experiences with either of these and how effective - if at all - they were. I’m desperate to find a solution for him! Thanks in advance 
I have had regular acupuncture for the past 1.5 yrs. and it has helped some. The first thing I noticed improvement with the headaches I was getting. My experience is that it has lessened the symptoms and when I go about a month or so between appointments I start to feel a bit worse. I know my gabapentin helps me more than the acupuncture but with TN, I think the more things we can do to help cope, the better.
As an aside, have you read the book "Striking Back!" by Dr. Ken Casey? It might greatly benefit you and your husband to better understand what your precious little boy is experiencing.
Yes, get the book as suggested, learn all you can… Find the BEST TN NEUROLOGIST AND TN NEUROSURGEON…find all your options!
I have the book saved on my eBay list to order. That is one of my top to-dos. And Blake and I both relentlessly researching and asking questions to find every possible option suitable for my very complex baby boy. There’s just so many different ways u can go…it makes my head spin a bit.
I have had accupunture twice which didn't do squat for me and had several months of chiropractic which helped at first but then when I stopped it all came back how old is your son? I have tn2 my pain started in my teeth. I tried two diff antisez meds that had a adverse effect on me I am now on nortriptyline 75 mgs a day and it has taken a lot of the pain away thank goodness If you have any questions feel free to write me.
Daniel is only 3. He is on gabapentin 400 mg three times a day. I can’t tell if it really helps much because when the beast is flared up, it seems as if nothing helps. We have taken him to the chiropractor on several occassions, but like the gabapentin, we r unclear if its really doing any good other than. Adjusting his spine…if he’s even out at the time.
Can you call the doctor ask them to call you in… Lidocaine patches for face!, Cut them up to small pieces over the pain areas!
I can definitely try. Hopefully they wont object. Do u think it will help ? Because the only place he tells us it hurts is actually INSIDE his mouth. Now I’m sure it probably does hurt other areas, but so far that’s all he can tell us.
Ohhhh lidocaine mouthwash!, That should do it!
orajel will sometimes take the edge off my gum and teeth pain
Misty you can get some oragel before you can get the prescription for mouthwash!
Got anbesol. Took the edge off briefly. Then tonight he wont let me put it on him, says it hurt more than did good. Back to the drawing board…
Kc Dancer Kc said:
Misty you can get some oragel before you can get the prescription for mouthwash!
There can be severe swallowing issues with lidocaine mouthwash. I wouldn’t risk it with a child.
Acupuncture takes perhaps weeks of treatment. (Two times is not enough to go on.)
Have you tried to figure out if specific kinds of food act as triggers or make the mouth pain worse? Specifically I’m thinking about acidic food or drink, anything from orange juice to salad dressing. Check the ingredients of the oragel for anything acidic or acidic sounding. You might find clues there.
Oh Bella, never read this…even if they only swish? I want to be informed on that one!
Bellalarke said:
There can be severe swallowing issues with lidocaine mouthwash. I wouldn’t risk it with a child.
Acupuncture takes perhaps weeks of treatment. (Two times is not enough to go on.)
Have you tried to figure out if specific kinds of food act as triggers or make the mouth pain worse? Specifically I’m thinking about acidic food or drink, anything from orange juice to salad dressing. Check the ingredients of the oragel for anything acidic or acidic sounding. You might find clues there.
I had thought we might could just swab it in his mouth where he points to avoid him swallowing it. Do you think there would still be issues if administered that way? Don’t want to do anything to make matters worse…
pharmacist will know!
It was my neurologist who explained to me about the possible issues with swallowing when I asked for a prescription of “magic mouthwash” quite some time ago. In the epithelial layers of the soft palate and the back third of the tongue, as well as other points on the hard palate, there are nerve endings that are part of the glossopharyngeal nerve, or ninth cranial nerve. It is one of the nerves that is involved in swallowing. Since I live alone I was strongly advised against using such products. I am afraid that a child would not be able to tell in advance that he was starting to have swallowing difficulties.
I have glossopharyngeal neuralgia as well as TN. GPN can sometimes on its own cause swallowing issues and I have experienced that a lot, especially in the early days before I started gabapentin. It is a freakishly terrifying experience to NOT be able to swallow. Panic sets in easily because the throat becomes constricted and you feel like you can’t breathe. In fact for a few moments you can’t breathe. When this happens I have learned to stay calm and start to sip warm water right away.
This of course is my experience. But my neurologist is Mayo clinic trained, young, extremely smart and compassionate and on the ball with all the latest research.
Misty, I would advise serious caution about applying chiropractic to a very young child. The record of outcomes in adults is very mixed, and kids bones and joints are still growing and changing rapidly. 1200 mg/day of Gabapentine is on the high side for a kid, due to their lower body weight. It may be that some other combination of medications will need to be tried. Oxcarbazepine (Trileptal) has a good record of outcomes with fewer side effects in adults. It may be worth discussing. Likewise, you'll want to be working with a neurologist who has training specifically for treatment of facial neuralgias. Our "Find a Doctor" page provides recommendations from members who have had a good experience.
I will read your full profile later this week to see if there is anything else I can suggest.
Regards, Red
Misty H said:
Daniel is only 3. He is on gabapentin 400 mg three times a day. I can't tell if it really helps much because when the beast is flared up, it seems as if nothing helps. We have taken him to the chiropractor on several occassions, but like the gabapentin, we r unclear if its really doing any good other than. Adjusting his spine....if he's even out at the time.
Right, so “swish” and/or “swab” difficult for a three year old. There is also the issue of lidocaine building up in the tissues and/ or central nervous system.
Misty, I really feel for you and your son and your husband. I can’t imagine having to go through this with him. I’d be frantic. But I also know that being calm will be helpful for him. Also avoid loud sound or bright light as much as possible. The quieter you can keep his whole central nervous system the better. It is a good idea to keep a log of when his attacks occur, as well as what he was eating and what he was doing. Cold air is often a big culprit. The more clues you have the better your doctors will be able to help.
Please keep us updated and ask questions when needed. My thoughts are with you.
Hugs and Keep Heart
Help will be found
Bellalarke
Hi Misty!
My two cents...all of my TN pain, both type I and type II, is located inside my mouth, so i can certainly relate to your son. (although i can't imagine being able to handle it so young...i'm barely handling it now! sheesh...but anyway.....)
Regarding mouthwashe etc....Before i knew about magic mouthwash, i was using OraBase gel inside my mouth. It is basically made for people with braces...but it's just a thick benzocaine paste. It does help for a short while. (maybe 30 mins or so)..but for me, sometimes if i could stop a flare while it was just starting, i could avoid major pain.
After i heard of magic mouthwash, but before i could get dr to give me some, i came across a recipe online on how to make your own at home. It is NOT as effective as the prescription stuff, but in a pinch, it helps a lot. It's basically, maalox, childrens liquid benedryl, and liquid benzocaine. The prescription stuff is the same except it has liquid lidocaine instead of the benzocaine.
AFTER i got the real magic mouthwash from pharmacy...i was in heaven. H-E-A-V-E-N. It would stop the pain dead in it's tracks for a long while. (at least an hour and more). Since then, i have some with me at all times. It is not my main method of dealing with the pain; i take meds for that..., but in the midst of a flare/breakthrough pain, it is my ace in the hole.
As far as swallowing/breathing problems and all that...i have no opinion one way or the other. It's your child and you know what risks you are and are not willing to take. I will say that the first time i got the mouthwash from the pharmacy, i was in so much of a hurry to use it that i DID swallow some of it, and the inside of my throat was numb for a while and even though i could swallow just fine, i couldn't "feel" myself swallow. it was a very odd sensation.
Tell him there's some lady in Kentucky who has the very same thing inside her mouth too...and that she's thinking of him.
~Mistee