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Living With Facial Pain

New diagnosis - 13 year old boy


#1

Hi everyone. My 13 year-old, strong, athletic boy was diagnosed with TN this week by a paediatric neurologist and an oral pathologist. He is now starting day 3 of gabapentin at max. dose of 3 X 300mg for the first time. He is on 10mg of amitriptyline now to be increased to 25mg at the end of the first week. So far, he has had no pain relief.

His pain is in tooth 36 only. It is very localized and concentrated on this tooth. He has no pain on his face. His gums are sore surrounding the tooth. He has no other symptoms whatsoever. He has constant pain at 8.5/10 and sharp, searing jolts of pain intermittently. We tracked them two days ago at 76 events. They are generally very short. The pain is too much for him to attend school and he is now starting his 3rd missed week. He has stopped all sports/activities too. He said he had a bit of pain about a year ago. Then two weeks before the onset he started complaining about pain in that tooth and asked me to take him to the dentist.

Naturally, I have done nothing but read about TN. His oral pathologist published a paper a while ago about a patient with the exact same symptoms as my son. Just tooth pain, nothing else. A MRI revealed an Intracranial Epidermoid Tumour. It was removed and the patient recovered completely.

We are now just waiting for the MRI. This sounds awful but I really hope it reveals something.

Does anyone have any experience with tumours creating the pain as opposed to TN?


#2

I’m so sorry to hear about someone so young, having to deal with this. I’m assuming you have had the dental situation completely investigated? With visits to periodontist, endodontist, etc…? Has he had a high resolution CBCT scan of the area? (with an experienced interpretation of the scan?).

I would encourage him to continue good dental care of the area, as anything irritating at all can set the nerve off.

Have you tried any topical anesthetics for some pain relief (benzocaine or lidocaine)?

Please keep us posted on how he is doing.


#3

Sorry your son is in pain. Has he had root canal or any extractions. Does the pain keep him from sleeping? Get the book Striking Back, it’s the bible of mouth/ tooth pain. Is pain one sided or both. Does touch set off his pain


#4

Hi Ziggy,

He has had no dental work at all done to his adult teeth. He sees his dentist every six months. He has strong, healthy teeth and gums.

We are waiting for a MRI. His neuro. suggested we try to get a CT scan over the weekend at emergency but we had no luck. His blood work came back clean so the emergency doctor could not justify an emergency CT scan. It’s very frustrating. I am hopeful that he’ll have the MRI this week.

He is using lidocaine which takes the constant pain down to 8/10 from 8.5/10. He is now on day 5 on 900mg of gabapentin with still no results.

I am encouraging good oral hygiene. He is flossing around the painful tooth and brushing the rest of his mouth.

If we can just get the pain under control we can attempt to resume a normal life. Right now, everything is on hold.

Nancy


#5

Hi Ajb,

He has had not dental work at all done on his adult teeth. They are strong and healthy so far. He sees his dentist every six months.

He is sleeping well but he says it’s difficult to fall asleep. The pain is only in tooth 3-6 and percussion affects in only. It’s not sensitive to hot or cold. There is no sensitivity on his cheek or jaw. It’s just this tooth!

Thanks for the book recommendation. I"ll have a look.

Nancy


#6

If percussion is affecting the tooth, here is something you might try: buy an over-the-counter bite guard (the kind you heat up and bite on to form). Then cut out around the tooth that hurts so there is no pressure. This might help, especially if there is any possibility of grinding at night. It is annoying, but I find it helpful to wear, even during the day. Seems to calm things down.


#7

Hi Nancy,

Just a few words or thoughts for you to ponder. One is the book Striking Back. It is a tremendous book to have in your tool kit of resources for dealing with TN. The other is Carbamazepine also known as Tegretol.

Folks that do not get relief from Gabapentin often have better pain management from Carbamazepine. Like I said, just a few points for you to ponder. I know your heart’s desire would be to see your son pain free. I will be praying for that as well.

Peace, Patty


#8

Hi Ziggy,

That’s a really good idea. I’ve never heard him grind but we’ll give it a try to see if things improve during the day.


#9

Thanks, Patty. When this all started over three weeks ago his dentist thought it could be a nerve and prescribed carbamazepine. He tried it for about 4 days, was having side effects, so I stopped. Then when the endodontist ruled out the tooth I started it again while we were waiting for another specialist appt. I think this was about 3 days after stopping and tried it again for about 5 days. An emergency doctor said to increase his dosage to 1,000 mg a day (he was at 600mg). Still nothing so I stopped it.

I’m pretty sure this history is why his neurologist is giving him gabapentin now. He now is 7 full days at 900mg and still no pain relief. He has been in constant 8.5/10 pain now for over three weeks. All the medical professionals say to give the drug time to work since it can take up to three weeks. They all say he should have some relief in 7-10 days so we will wait a bit longer.

He had a MRI and a CBCT scan this week. We should have some solid answers next week. There is still no movement of the pain. It is just focused on tooth 3-6.

I think we’d all be happy if his pain could drop to a 7/10!

Nancy


#10

Most meds used for nerve pain, not just gabapentin, take about two weeks to get into your system and have the bioavailability to help with the pain. You seem to be stopping trials well short of this general guideline and therefore could be missing the positive effect.

Depending on the severity of side effects, if gabapentin doesn’t seem to help after 2-3 weeks you may want to back track and give the first meds another try, being sure to titrate fully over 2-3 weeks. Some meds like cymbalta can take 30 days.


#11

He was taking the carbazamine under the supervision of his dentist and then an emergency doctor. Probably not the best people! He had bad side effects but i think it was due to how it was being administered.

We’re sticking with the gabapentin now and following all the neurologist’s instructions. Hopefully, he’ll feel some improvement in the next day or two.


#12

Hi Nancy, I too am sorry that your son is having to face this much pain at such a young age. I too had problems Tegretol/carbamazepine. Another medication that can be tried when a person can’t take carbamazepine is called Trileptal/ oxcarbazepine when the Tegretol can’t be taken because of side effects. It’s in the same family but it doesn’t often create as many side effects.

One note about school, when I was a teacher I used to work with kids that couldn’t go to school because of medical reasons after school. Most schools have something known as a homebound teacher that will go to homes to work with kids five hours a week. A homebound teacher gets the assignments from the student’s regular teacher and takes finished assignments back to the regular teachers. It doesn’t sound like an lot of hours but as long as the student can do some work at home having a teacher come in can be really helpful to work on subjects especially English and math which create a lot of problems for students. You just need to contact your school counselor or principal to find out more information on how to get a homebound teacher. Normally you must have a doctor’s note explaining that the student won’t be able to attend school for an extended amount of time. Doing this May help relieve the pressure you are probably feeling about your son being unable to go to school and missing so much school.

I encourage you to continue what you’re doing to find some combination of meds that will reduce the pain for your son. I’m glad that your son has you to advocate for him!


#13

We have started the process of getting in-home schooling. His school board will supply 3-5 hours/week. I’m waiting on a note from his doctor and then waiting for his pain to drop a bit so that he can focus better. His teacher has told me that they will modify the curriculum for him when he gets back. I’m just hoping he can get back to learning/school soon!


#14

Hi Nancy,

How’s your son doing? Is he able to do homebound schooling or was he able to return to school? I hope things are going better but I know with this painful affliction it takes time as we learn how it ebbs and flows.


#15

Hello!

My son is doing a bit better. In December his meds where changed to oxcarbazepine with the gabapentine. By Christmas he was taking 1,200 mg of oxcarbazipine along with 900mg of gabapentine. His pain decreased and he was more of his old self. He was able to go back to school after the holidays.

His MRI revealed an artery and blood vessel touching the trigeminal nerve but the radiologist said it was inconclusive. It also revealed fluid in his left sinus which I find interesting. In December he started complaining of pain in his left eye at the start of his brow. The way he described the pain was very much like a sinus infection but I initially thought it was just the top branch of the nerve flaring up (his pain has always been only at one bottom left tooth).

He had a broken nose 7 years ago and I am now wondering if there is a sinus issue which is presenting as TN. We are now waiting for an ENT.

We saw a neurosurgeon this week and he is a candidate for MVD. The surgeon said no other options would be good for him. His main diagnosis was that he was getting some pain relief (his spikes/jabs of pain have pretty much disappeared) with the oxcarbazepine which supports TN.

I am not making a decision though until we see a second surgeon in early March. I also will wait until we see an ENT. Maybe all that is necessary is a course of antibiotics to clear up the infection???

On another note, his neurologist decided to increase the oxcarbazipine to try to get his pain down even more. For the last week, he acted like he was drunk! He has constant stomach pain, involuntary eye movement, blurred vision and double vision and has passed out/nodded off three times. He missed school again. He got up to 1,800 mg when this happened. Today he will be back at 1,200mg and he is already feeling better. This medication is so powerful!


#16

re: broken nose 7 years ago and I am now wondering if there is a sinus issue which is presenting as TN

I’m glad things have calmed down a bit for your son. When I read your first post, I wondered if he had some kind of injury. So, I’m glad they are all zeroing in on diagnosing what might be the problem.

I can only add two bits to the advice you have already been getting here and elsewhere. First, relief may not come easy; rely on the neuro for pain relief and the best neurological advice especially if there could be nerve damage. Second, it sounds corny, but relief can come by reducing stress and other complications to lifestyle. With the home schooling, you are well along that path. I’m glad that you can provide him the home schooling and care that he needs.


#17

May have mentioned it before, on a different thread, but maybe, have someone look at his neck, a broken nose isn’t always going to confine trauma to the area but likely the neck.