Medication for trigeminal neuralgia type 1 is usually prescribed during the episodes of symptoms. Most patients will take these medications life-long. We usually prefer to give people “drug holidays”, which is where the drug will be stopped if their symptoms go away in the hopes that they don’t develop a tolerance to the drug. The natural history or the natural progression of this condition, however, is that we find the drugs become less and less effective over time. We need higher and higher doses, which is why many patients after several years of having this condition do ultimately need some sort of intervention, whether it’s radiation, a needle procedure, or brain surgery.

Trigeminal neuralgia type 1 has a short list of medications that are in some cases just absolutely spectacular and life-changing for the treatment of this condition. One of those is Carbamazepine (its other name is Tegretol) and that medication is so reliably good that for somebody who has this condition and has never been treated with this medication before, it’s almost certain that their symptoms will get either markedly better or in most cases go away. The problem is: with time, a tolerance will build to these medicines, so the natural history (or in other words: what happens as the disease progresses) is that the medications become less and less effective, the doses have to be raised and ultimately in many patients, the symptoms again reappear and we either have to add medication or seek other treatment options including surgery or radiation. To be more specific, the common medications for this condition are Tegretol or Carbamazepine. Another medication that’s commonly used is Gabapentin or Neurontin. Baclifin is another medication, but if you look at the classes of these medications, they are anti-seizure medications. That’s what we are typically using to treat this condition because we feel that the underlying problem here is some sort of short circuiting and anticonvulsant or antiseizure medications help calm or stabilize the signal and therefore symptoms get better with the use of these drugs.

Trigeminal neuralgia type 1 is characterized by these sharp episodes of pain on the face. One of the treatment options for this is rhizotomy, where we’re actually trying to section parts of the nerve in order to prevent those painful episodes from occurring. In this case, a rhizotomy is typically done through a needle. There are a variety of ways which can then be done to actually sever or stop those painful episodes from conducting through the nerve. What’s commonly used is a radio-frequency rhizotomy. It’s a big technical word for using heat at the tip of the needle to deaden part of the nerve and it stops the electrical impulse from conducting and the patient’s face then gets numb and people get better. There are other forms of rhizotomy as well. One is a glycerol rhizotomy where we’re actually injecting a special type of liquid to injure the nerve and stop it from conducting the electrical impulse. Yet another type of rhizotomy-like procedure is again done through a needle, except this time instead of heat or a liquid, we’re actually blowing up a balloon and applying pressure to the nerve and thereby partially stopping that conduction of the electrical impulse. Fundamentally, in the end, it’s a needle being put through the cheek all the way up through the skull base into the nerve, and then (in one fashion or another, as we’ve just described) stopping that electrical impulse from getting from the face back to the brain. For reasons that aren’t 100% clear, the pain stops, part of the face gets numb, and the patient feels much, much better and can usually stop a lot of their medications. It’s usually a temporary procedure. In some patients it’s permanent, but in most patients the pain will return a few years later.

The stereotactic radiosurgery treatment for trigeminal neuralgia type 1 is a single treatment, so the patient gets the treatment typically in 60 minutes to 90 minutes and that is it. They are done. You can drive into the clinic, get your treatment, drive back home, enjoy dinner and wine if you want. It’s not an ongoing treatment, but rather a single treatment.

Stereotactic radiosurgery is another treatment modality that can be used to treat trigeminal neuralgia type 1. In this treatment, what we’re doing is we’re delivering a very, very high dose of radiation to the trigeminal nerve, but we’re delivering all of that radiation to a very, very tiny spot. That gives this controlled injury to the nerve which, again, interrupts the conduction and stops the painful episodes on the patient’s face. In fact, the machine that I’m standing in front of is a radiosurgical unit. This is the couch that the patient would sit on and the machine behind me would precisely deliver that radiation just to that area of the nerve. You don’t lose your hair during this. The other parts of the brain don’t get radiation and all of the radiation is delivered to that nerve – the trigeminal nerve. In most patients, pain relief is felt not immediately, but a few months later and in many patients for years to come.

Stereotactic radiosurgery used for the treatment of trigeminal neuralgia automatically brings up in most patients a lot of concerns about radiation. “Is it going to make me sick? Am I going to lose my hair? What are the side effects of radiation to my brain or body?” Those are a lot of misconceptions about radiation harking back to decades before. Modern radiation is completely different. Patients don’t lose their hair. The amount of radiation seen by the brain or the rest of the body is very, very small – almost negligible. All of the radiation is really controlled and focused with use of very, very expensive and powerful computers to just a small sphere (about four millimeters in size.) A lot of the fears and concerns that people have surrounding radiation really aren’t true for this kind of treatment. It’s a very, very different treatment than radiation say for cancer or radiation for other types of disorders like tumors.

There are two main categories of surgical interventions that get done for trigeminal neuralgia type 1. The one that people mostly read about or hear about is a procedure called microvascular decompression. That involves a craniotomy and a craniotomy is making an actual opening in the skull. An opening is made in the skull. The surgeon then actually inspects the nerve with the use of a microscope. Typically what’s found there is a blood vessel resting on the nerve itself. The neurosurgeon will then place a piece of teflon or some other inert material between the nerve and the blood vessel and the result of that (in most cases) is that the patient then wakes up free of their trigeminal neuralgia pain and in a majority of patients, they are cured of their affliction for years, decades to come. The other category of surgical intervention is where we are actually putting a needle through the cheek, up into the nerve, and then in some fashion making a controlled injury to the nerve. Some surgeons make that controlled injury with heat. Some surgeons use a balloon. Some surgeons use another type of liquid, which will actually injure the nerve in a very controlled way. That’s the other kind of intervention that gets done. The advantage of that is that you don’t have to have a craniotomy. The disadvantage is that the cure rate is far, far less – perhaps more on the order of 50% treatment rates at 2-3 years, rather than surgery, which offers a 70% treatment or cure rate at 10 years.

Although there are a number of treatments for trigeminal neuralgia (medication, rhizotomy – which is a procedure where we put a needle into the nerve, radiation, and surgery – those are a list of possible treatment options) there’s only one treatment that offers an opportunity for a long-term cure and that is surgery. Surgery offers an opportunity to cure this disorder, but it is not a 100% cure rate. So we’re looking at cure rates somewhere in that 60-70% range, which may not sound high, but it’s remarkably higher than any of the other treatment options which either offer no opportunity for a cure or a much, much lower percentage cure rate.

There’s no specific screening process for Trigeminal Neuralgia type 1. It’s really a clinical diagnosis, so if somebody presents to their doctor or dentist or orthodontist with these jolts of pain on one half of their face, then they should be referred to either a neurologist or neurosurgeon who’s comfortable and confident treating this disorder.

Trigeminal neuralgia (and it’s also known by an acronym: TN) is a rare affliction characterized by pain on the face. It’s usually one half of the face or the other half of the face. Usually these episodes of pain are shock-like, they’re intense, people don’t know why they’re experiencing this pain. They will seek medical attention and it’s rare enough of a disorder that many times we don’t get the diagnosis until weeks or months later. But it’s an important diagnosis to make because there is good treatment for it once you identify the diagnosis correctly.

Trigeminal neuralgia type 1 is a treatable disorder and in some cases a curable disorder. The cure usually involves some sort of intervention like surgery or radiation. The treatment is usually medication-related. The biggest hurdle in all of this is getting the diagnosis because so many patients don’t get diagnosed until many, many years into the condition. Once the diagnosis is made, we have an excellent set of options for treatment and some options for cure.

Once the symptoms of trigeminal neuralgia are suspected, usually the most important test to get is a brain MRI scan. The reason for that is that we want to be looking and seeing if there’s an actual mass that’s pushing on the trigeminal nerve. That’s uncommon. Most of the time we’re getting the MRI scan to sort of say, “look, you don’t have a brain tumor as the underlying cause of this.” Sometimes the brain MRI scan will show a blood vessel that’s pushing up against the nerve, which is what we think in most people may be the irritative cause on the nerve producing the symptoms of trigeminal neuralgia.

Although we don’t fully understand why people get trigeminal neuralgia, we do have some clues. There is a theory called the microvascular compression theory, which really had a lot of support – probably a little bit less support now – but at one time, that was the best theory that explained so much of this disorder. In a nutshell what it was was that there’s a nerve and we know that there’s some sort of short circuiting going on in the nerve that leads to these episodes of pain. One of the things that we found at the time of surgery is that there’s a blood vessel that seems to be lying over the nerve. We found that by separating the blood vessel from the underlying nerve, that trigeminal neuralgia (in most cases) we could cure it. This theory came about called the microvascular compression theory of trigeminal neuralgia where we felt that a pulsating vessel up against the nerve led to loss of insulation on the nerve and then therefore the short circuiting and therefore then the pain syndrome. That was commonly held for years – if not decades. The problem we find in this theory is that there are some times when we will do surgery and we won’t find any blood vessel at all. Yet we do the same maneuver where we stroke the nerve or we touch the nerve and people still get cured of their trigeminal neuralgia and so some elements of that theory are being put into question. My own personal opinion is that there’s probably some genetic aberration or genetic abnormality in these patients where the insulation isn’t being formed correctly and that’s probably at the heart of it. But it’s important to know this theory because that’s the underpinning of the surgery that we do to treat this disorder.

We don’t really know what causes trigeminal neuralgia type 1. We have some clues about it, though. We know that nerves sort of transmit these signals and we know that nerves have this lining around them that insulates them so they don’t cross-talk. We know that there’s some sort of probable defect in that insulation and essentially these nerves short circuit and that’s what produces the pain on somebodies face. It is really literally a short circuiting somewhere along the nervous pathway between the nerve as it leaves the brain and then goes to the face. The reason we have those clues is we know that somebody with a condition called multiple sclerosis where the insulation surrounding the nerve is lost, they have a much, much higher rate of trigeminal neuralgia type 1 than the general population. We also know that patients with some tumors that push up against this nerve (the trigeminal nerve) where we think the installation wears down, they also have a higher rate of this painful condition.Wwhile we don’t know exactly what the heart of this, we do know that it’s some sort of defect in the way the nerves transmit their electrical signal.

One of the hallmarks of trigeminal neuralgia type 1 is that it can be triggered by something. So patients very, very quickly learn that these episodes of shock-like pain that they’re experiencing on their face are sometimes randomly occurring, but there are a certain number of things that they can often do that reliably will cause the pain to occur. They very, very quickly learn what those are. Some of the more common ones are: touching the face, showering, chewing, for some patients talking. One of the peculiar ones is cold air. Cold air on the face is a very common trigger, so these sorts of triggers are one of the important things that a physician will look for when listening to some patient with presumed trigeminal neuralgia because the doctor is going to want to hear that there are triggers that set this off. If there are no triggers whatsoever, it doesn’t mean that you can’t have trigeminal neuralgia, but it does put the diagnosis not into doubt, but it does put a little bit of a question mark and the doctor’s going to want to explore more things and get more history.

The common symptoms of trigeminal neuralgia type 1: the pain is described by most patients as this sharp pain. Some patients describe it like an ice pick behind the eye or a lightning bolt or a flash of pain. It usually affects the forehead, the cheek, or the jaw with the most common area being either the cheek region or the jaw region or something in between. It truly is like a flash of pain which lasts either seconds, maybe a few minutes, but rarely longer than that.

Trigeminal neuralgia type 1 is a rare disorder and we see about 5-10 new cases every 100,000 people. If you take a city like Tucson that has got about a million people, you’re looking at 50-100 new cases each year. That may seem like a lot, but when you put that in perspective, that means any given primary care physician may go years without ever seeing a case, and so its rarity makes it sometimes very difficult to diagnose because people on the front lines don’t see it that often.

We split trigeminal neuralgia into two types. There’s TN type 1 and there’s TN type 2. They’re vastly different. In TN type 1, patients experience this shock-like pain, but in between the episodes of pain, they are pain-free. The shock-like pain might last for seconds, maybe a few minutes – rarely longer than that, but the important thing is: in between the pain episodes, the patient is completely free of pain. In trigeminal neuralgia type 2, the situation is completely different. The pain on the face is more like a dull aching pain and the other thing is: it doesn’t seem to go away. Maybe it gets better at times, maybe it gets worse at times, but it doesn’t go away. That’s how you can tell the difference clinically between trigeminal neuralgia type 1 and type 2. The reason it’s so important is the treatments are so vastly different between the two types of trigeminal neuralgia.

Trigeminal neuralgia type 1 is a rare disorder, but it’s a very, very important disorder for both patients and doctors to recognize because without treatment it’s a horrible affliction, but with treatment the pain can either be made to go away or we can in some cases cure people of this disorder. The main things about trigeminal neuralgia type 1 are these episodes of sharp or shock-like pain in either one half of the face or the other. In between the pain, there’s no pain and these painful episodes can usually be triggered by touching the face or talking or swallowing. If you have any of these symptoms, the right answer really is to find a practitioner who’s comfortable and confident in treating this disorder, and those practitioners are usually neurologists or neurosurgeons. The treatment for this typically is either medication at the onset and later (if the problem becomes poorly managed with medication) there are surgical options or radiation options that can treat this effectively.