I am the parent of my 11 year old daughter diagnosed with Trigeminal neuralgia (left side) about a week ago. She was started on 400 MG of Carbamazepine per day for the next week then increased to 800mg per day. It has been 8 days days (at 400mg/day) dose and so far has had no pain relief. She also takes Amitriptyline in the evenings to help with sleep.
We are awaiting a few brain scans to determine cause of TN, which will be within the next weeks.
I am concerned on how bad the pain is, she is missing considerable amounts of school, as well as her after school activities. Even simple tasks like teeth brushing are near impossible due to the pain at this point.
This diagnose of TN took approximately two years to get. Previous to this she had Eustachian tube dysfunction that was believed to be casing the pain and has a diagnosis of right side TMJ.
Please share with me any comments, thoughts, suggestions. I will be happy to receive anything that may help my daughter with this issue.
You asked for comments and suggestions. One item in your post prompts a comment: While MRI can confirm vascular compressions of the trigeminal nerve, it can't confirm that there are none. MRI is best viewed as a means of confirming that the patient doesn't have a benign brain tumor, arterio-veinous malformation, cysts, calcium deposits, or MS lesions. But when people with typical TN are taken through a microvascular decompression surgery, substantial numbers of them who had no indications in MRI are found to have compressions during the exploratory phase of surgery. I've even heard reports of small vessels growing "through" the core of the nerve, though that seems rare.
Second, although many patients get almost immediate relief from Carbamazepine, this is not universally true. Generally, if you haven't seen improvement within a month, then it is time to consider other medications or combinations of medications. These may include Neurontin, Trileptal, Baclofen, Phenytoin, or a higher dose of Amitriptyline or Nortriptyline than your daughter is now on.
Third, I personally believe from nearly 20 years of study in the medical literature, that TMJ Disorder is significantly over-diagnosed by dental practitioners who lack adequate training in the assessment of neuropathic pain. It's sort of a "when all you have is a hammer, everything starts to look like a nail" thing.
If you're having to wait weeks to get an MRI scan, then I'd guess you're living outside the US in either Canada or the UK. NHS in either country is notorious for this kind of negligent nonsense. For the UK, we have included a list of neurological assessment facilities in our "Find a Doctor" page (menu above). You might find it appropriate to contact one of those centers if you're within driving distance and eligible to use it. You may have to pay costs for private care to get timely assessment for your daughter.
I am aware that the MRI's may not indicate any compression and that they are testing to rule out other disorders etc. I've spent many late nights on google.
Ava's TMJ was diagnosed by her ENT specialist; Her TN wad diagnosed by a neurologist.
Hi 4evajessca,
I’m in Canada too, so sorry your daughter is suffering with pain.
One suggestion if I may…maybe ask your doctor if he/she would consider switching Ava to Tegretol CR, it’s Controlled Release, so the medication is slowly released and I found that instead of taking it morning and night , I responded better to taking it 3x a day. My doctor recommended it, saying this way the med is continuously, slowly released in your system and from there we built up to a therapeutic dose, which for me was 800mg.
Not sure if it will help or not, but worth asking your doctor about.
I hope your Ava finds relief soon, I’ll keep her and you in my prayers …
Mimi