You Have Been Diagnosed with Trigeminal Neuralgia, So Now What?

If you have been diagnosed with trigeminal neuralgia after visiting several dentists, doctors, and possibly even having a few ER visits for severe, unexplained facial pain, you might be wondering what your next steps should be and how you can ensure you are receiving the most optimal care.

First, let's start by explaining what trigeminal neuralgia (TN) is. TN is a painful condition affecting one or more branches of the trigeminal nerves (also known as the fifth cranial nerve, or CN V, using the Roman numeral system). The trigeminal nerve has three major branches: the ophthalmic nerve (V1), the maxillary nerve (V2), and the mandibular nerve (V3), which are responsible for the sensory innervation of the forehead, the cheek, and the jaw, respectively. Trigeminal neuralgia typically results in severe, sharp, or stabbing pain that comes and goes in one or more of the nerve distributions mentioned above. However, there is a great amount of variability in how it presents and how patients describe it.

After receiving a diagnosis of trigeminal neuralgia, here are the best six tips to help you get on the right treatment path:

1. Book an appointment with a neurologist, preferably a headache specialist. TN is a relatively rare disease, and different neurologists may have different experiences in treating it. A headache specialist receives extra training and exposure not only to headache conditions but to all craniofacial pain, making them usually the most expert in diagnosing, treating, and monitoring your condition.
2. Maintain a detailed pain log: After you secure your appointment, ensure that you keep a detailed pain log describing the date/time, pain location, type of pain, and its duration. Some of the other questions you will be asked at your appointment include listing what triggers your attacks, what helps relieve the pain, and what other symptoms you are having with your pain, such as tingling, numbness, and others.
3. Ensure your doctor obtains the right imaging: Part of the routine imaging for patients with trigeminal neuralgia includes the following:
   • MRI of the brain: However, it is crucial that your MRI is done with and without contrast, and using a protocol known as the FIESTA protocol, which ensures that the MRI images are obtained at very thin slices where the trigeminal nerve is, and hence make sure that it can be visualized better. Without asking for the FIESTA protocol, an MRI may image the brain at 5 mm cuts, and this is more than sufficient to miss a small abnormality such as a lesion or a vessel pressing on the trigeminal nerve.
   • MRA of the head: This "A" stands for angiography. This MRI can specifically visualize the arteries of the head. This is important in many instances as it allows revealing if there are any vessels pressing on the trigeminal nerve, which can be a common source of trigeminal neuralgia.
4. Ask for a referral for a neurosurgeon experienced in trigeminal neuralgia: Similar to neurologists, neurosurgeons have different experiences and exposure to trigeminal neuralgia. This is extremely important as there are numerous surgical procedures for trigeminal neuralgia, with widely (and wildly) varied outcomes based on the appropriateness of the procedure selected and the skill of the surgeons. That is why you need to make sure you choose a neurosurgeon who works closely with your neurologist (headache specialist) and has extensive experience in treating this condition.
5. Treating trigeminal neuralgia is a marathon, not a sprint: This is difficult to hear, but we cannot stress this point enough. Properly treating trigeminal neuralgia is a complex process that requires testing and trying different treatments. Some of these treatments will give partial effects, and some will result in no relief at all. It is important that you note any changes in your symptoms with any procedure or treatment and report these changes to your doctor.
6. Keep an open mind for alternative diagnoses: Trigeminal neuralgia is frequently misdiagnosed. It is not uncommonly missed in patients who have it, but it is also frequently diagnosed in patients who do not. Some other conditions that can present like trigeminal neuralgia include migraine headaches, cluster headaches and its sisters (collectively known as trigeminal autonomic cephalalgias), TMJ dysfunction, dental pain, stylomandibular ligament dysfunction, Eagle's syndrome, other cranial neuralgias, and numerous other conditions. While superficially these disorders may appear very different from trigeminal neuralgia, there are many instances where the distinction is not as clear as one might think, so keep that in mind, as treatments for these can vary drastically from the treatment of TN.

Let us know what worked for you in the comment section. 

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