This time, I am talking to Dr. Monika Köchling about the causes and treatment options for trigeminal neuralgia. Since this form of facial pain can lead to extreme restrictions in the quality of life, it is extremely important to treat it. The good news is that there are many approaches to controlling the pain or even getting rid of it completely. However, this can sometimes take a little longer and it is important to work with your doctors to find a solution and possibly try several approaches.
The original interview was in German and I adapted it for the international MS community.
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Introduction Monika Köchling
I work in Grevenbroich, Germany, as a neurologist, psychiatrist and psychotherapist in a large group practice, the NeuroCentrum am Rheinlandklinikum. I live in Düsseldorf and am married for the second time. I also have two grown-up sons. My hobbies include singing in a choir, hiking and poetry.
Personal motivation for the job?
For me, it is definitely curiosity that repeatedly drives me to do the right things. I did my doctorate in the neurological department of Prof. Dr. med. Klaus Poeck, which influenced my choice of neurology.
It is fascinating to see how people cope with their personal challenges. I still learn a lot from my patients, because in neurology and psychiatry, it is often necessary to integrate coping with an illness into life. Thanks to my many years of experience, I can give one or two impulses for doing this well. I am motivated to keep finding out what I can contribute to giving this person sitting across from me something useful.
Since it is impossible to keep track of everything, I love being able to work as part of a large team with ten specialist colleagues, neurologists and psychiatrists, and psychotherapists as well as pain therapists, and three psychological colleagues and a large team of MFAs including MS nurses.
I am also an active member of the advisory board of the Neurotransdata network, which works with practices and colleagues to compile valuable real-world experience data using Destiny (Data basE– asSisted Therapy decisioN support sYtem) and to answer questions together in projects in order to optimize therapy and disease management. To do this, we also use PHREND (Predictive Healthcare with Real-world Evidence for Neurological Disorders) as a therapy optimization module.
Basics of trigeminal neuralgia in MS
What is trigeminal neuralgia and how can it manifest itself in people with multiple sclerosis?
Trigeminal neuralgia is one of the most painful disorders, with typical facial pain that is limited to the area supplied by the trigeminal nerve.
The pain attacks are particularly severe, characterized by sudden shooting sensations that last only seconds but in severe cases can occur in series and last up to 2 minutes. These pain attacks are relatively uniform and repetitive.
In addition to touching the skin in the affected parts of the face, even a draft of air can trigger the pain attacks, as can speaking, eating and drinking. In severe cases, there is a restriction in the intake of food and fluids, as well as a significant reduction in quality of life and ability to participate.The trigeminal nerve follows a path after a switchover station (ganglion Gasseri) with three nerve branches, which provide sensitive supply to the forehead, the area of the upper jaw and the area of the lower jaw. These nerve branches are designated as branches 1, 2 and 3 of the fifth cranial nerve, Roman V.
Typically, trigeminal neuralgia occurs much more frequently in the areas of branches 2 and 3, i.e. in the area of the upper and lower jaw.
How common is trigeminal neuralgia in people with MS and does the likelihood increase with the duration of the disease?
Two to five percent of patients with MS suffer from trigeminal neuralgia at some point. In addition, those affected develop the condition at a younger age (< 40 years).
Normally, trigeminal neuralgia primarily affects older people and women are more likely to develop it than men (prevalence 0.16-0.30%).
The probability of occurrence depends on the course of the MS.
Trigeminal neuralgia in MS patients is based on an inflammatory focus in the root area of the trigeminal nerve in the brainstem (level of the pons).
In half of the affected MS patients, there is also a neurovascular contact (dual hit theory).
How is trigeminal neuralgia diagnosed and differentiated from other facial pain?
The clinical diagnostic criteria of the International Classification of Headache Disorders (ICHD) are important. These include:
- Recurrent paroxysmal unilateral facial pain attacks in the area supplied by one or more branches of the trigeminal nerve, with no radiation beyond this area.
- The pain has all of the following characteristics:
- Duration of seconds to 2 minutes
- Severe intensity
- electric shock-like, shooting, stabbing or sharp quality
- Triggered by non-noxious stimuli in the affected area supplied by the trigeminal nerve.
- Not better explained by another ICHD diagnosis.
The decisive factor in classic trigeminal neuralgia is that the neurological findings are unremarkable, except for a slight sensory disturbance in the affected area of the face and hypersensitive nerve exit points of the nerve parts in the face.
Other facial pains may present with a similar distribution, but are usually permanent, with fewer lightning-like attacks.
Differential diagnoses
- Peripheral trigeminal neuralgia
- Mostly continuous burning pain and additional attacks
- (e.g. postherpetic neuralgia),
- Collagenoses such as Sjögren’s syndrome
- Traumatic damage or tumors in the area of the trigeminal nerve (involve ENT specialist and dentist for diagnostics)
Typical case history and electrophysiological evidence of trigeminal nerve damage with certain electrophysiological examinations (blink reflex and TRIG SSEP).
- Persistent idiopathic facial pain (formerly atypical facial pain)
- continuous, usually dull, deep-seated pain without sharp boundaries, often beginning in the area and spreading diffusely over time, and can also radiate to the opposite side; no intense shooting attacks, often triggered by painful events (e.g. dental treatment)
- electricity-like attacks in the first branch of the trigeminal nerve
- Differentiation of trigeminal neuralgia from SUNCT (short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing)
- or
- SUNA (short-lasting unilateral neuralgiform headache attacks with cranial autonomic symptoms; both are rare trigeminoautonomic headache disorders with short unilateral pain attacks in the forehead and eye that are accompanied by ipsilateral trigeminoautonomic symptoms such as tearing and redness of the eye)
Classic trigeminal neuralgia with compression by a vessel (atrophy or displacement)
neurovascular contact or conflict between a vessel (superior or posterior inferior cerebellar artery) and the cisternal portion of the trigeminal nerve; or an embryological variant, the trigeminal artery primitiva, a branch of the internal carotid artery at the level of the Meckel’s cave; or a cardiobasilar anastomosis
The diagnosis is made by magnetic resonance imaging of the cisternal cranial nerves
in a T2-weighted sequence with millimeter-range resolution (constructive interference in steady state (CISS) or sampling perfection with application optimized contrasts using different flip angel evolutions (SPACE) or fast imaging employing steady acquisition (FIESTA) or balance fast field echo (FEE).
Additional vascular imaging using 3-dimensional time-of-flight technology, which is helpful for visualizing the contact.
The cisternal veins, especially the superior and inferior petrosal sinus draining veins, can also cause the relevant contact.
Important secondary causes:
- MS lesion in entry zone
- Tumor in the entry zone (intrinsic tumors such as schwannomas, neurinomas; extrinsic compressing tumors such as cisternous meningiomas of the tentorium)
Treatment options for trigeminal neuralgia in MS
What treatment options are available for trigeminal neuralgia in MS, and how are these customized?
There is no efficacy of direct-acting painkillers (e.g. NSAIDs). Seizure-suppressing medications, formerly called anticonvulsants, are used.
Drug treatment of trigeminal neuralgia
Basic therapy
- Carbamazepine (200-1200mg)
- Oxcarbazepine (300-1800 mg)
for advanced cases
- Pregabalin (150-600 mg)
- Gabapentin (900-3000 mg)
- Baclofen (25-75 mg)
- Lamotrigine (200-400 mg)
- Phenytoin according to serum level
- Misoprostol (600 µg)
- Botulinum toxin (Onabotulinum A: 25-100 U)
Treatment of acute exacerbation
- Phenytoin (250 mg slow intravenous)
- Pimozide (4-12 mg)
- Series of ganglionic local opioid analgesia at the cervical superior ganglion
- Sumatriptan (6 mg s.c. or 100 mg orally in 2 doses)
If medical therapy fails, the decision is made to proceed with neurosurgical treatment.
Microvascular decompression (surgical procedure according to Janetta)
Percutaneous procedures:
- Radiofrequency thermocoagulation
- Glycerol rhizolysis
- Balloon compression
Radiosurgery
What non-drug approaches can help to alleviate the symptoms of trigeminal neuralgia?
Non-pharmacological approaches to therapy alone are not sufficiently helpful. Sufficient pain management strategies can be used to support this, such as:
- Relaxation therapy, in particular progressive muscle relaxation (PMR) according to Jacobson, to acquire basic relaxation skills.
- Stress management
- Occupational therapy
- Biofeedback therapy – a psychotherapy method that is sometimes also offered by occupational therapists.
- Psychotherapy with a focus on pain psychotherapy
- If the pain becomes chronic, participating in an inpatient or day-care multimodal pain therapy program can also be helpful and may contribute to the establishment of successful pain management.
What role do accompanying therapies such as physiotherapy or relaxation techniques play in coping with pain?
They are very helpful in regulating muscle tone (e.g. specialized physiotherapy for craniomandibular dysfunction, CMD for short).
Are there any promising new developments or therapeutic approaches for patients with trigeminal neuralgia?
Yes, the further development of seizure-suppressing medication, in particular sodium channel blockers, which do not require an up-dosing phase and offer a favorable side-effect profile; e.g. vixotrigine.
Effects of trigeminal neuralgia in MS
How does trigeminal neuralgia affect the general well-being and quality of life of MS patients?
Trigeminal neuralgia can lead to a significant reduction in quality of life. It often restricts the ability to participate, even to the point of being unable to work regularly. Those affected have a high risk of developing comorbid depressive phases of illness.
What are the long-term prospects for MS patients with trigeminal neuralgia and how can the prognosis be improved?
There is often a risk of chronification and a high risk of recurrence, depending on the cause and treatment options. Neurosurgical measures in particular can provide relief.
What is the best way to prevent trigeminal neuralgia, if it is possible at all?
There are no specific factors. The trigeminal nerve is susceptible to transient reactive symptoms after viral infections. So everything that keeps us immunologically robust, such as a healthy diet, sufficient exercise, regenerative sleep and no stress escalation have a preventive effect.
Quickfire Q&A
Complete the sentence: "For me, multiple sclerosis is...
… a challenge for patients and doctors.
What breakthrough in MS research and treatment would you like to see in the next 5 years?
Medication with an optimal side-effect profile and improved disease management services, such as psychoeducation.
Farewell
Finally, what is the most important message you would like to give to MS patients with trigeminal neuralgia?
Attitude is crucial. Don’t despair. Become and remain resilient and dare to try new things.
To quote Hilde Domin:
“I put my foot in the air and it carried me.”
Many thanks to Dr. Köchling for the in-depth insight into the treatment options for trigeminal neuralgia.
See you soon and make the most of your life,
Nele
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