Why Trigeminal Neuralgia Is Considered The “Suicide Disease”

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Why Trigeminal Neuralgia Is Considered The “Suicide Disease”

Of all of the pain conditions that chronic pain patients experience, there are arguably none worse than the pain of trigeminal neuralgia. Often called the “suicide disease” because 25% of sufferers commit suicide, trigeminal neuralgia is pain that spreads over the face and down the neck, triggered by even the slightest breath of wind across the face. This condition is commonly misdiagnosed. It’s important to understand what it is, common symptoms, how it’s diagnosed, and trigeminal neuralgia treatment that may work.

What is trigeminal neuralgia?

Trigeminal neuralgia is the general term for pain caused by the trigeminal nerve. It is also called TN pain or  The trigeminal nerve begins just behind the ear on either side of the face and spreads across the cheeks, jaw, lips, and nose. There are three branches of this nerve – the upper, medial, and lower branches. Where the pain is located depends largely on which branch is affected. Rarely,  sufferers experience pain on both sides of the face (this is called bilateral trigeminal neuralgia).

Trigeminal neuralgia may be diagnosed as migraine, which affects approximately 16% of people in the U.S.

The American Association of Neurological Surgeons goes on to note that:

“It is reported that 150,000 people are diagnosed with trigeminal neuralgia every year. While the disorder can occur at any age, it is most common in people over the age of 50.”

Trigeminal neuralgia symptoms

According to some people, the pain of this condition is the worst pain that can be felt, worse even than limb amputation or childbirth.  The Facial Pain Association reports that:

“People with TN avoid social contact and daily activities such as eating and talking because they fear an attack. Many have been known to lose their jobs because of the debilitating nature of the pain. Marriages have dissolved due to the difficulty of providing care and support to persons with TN.”

Trigeminal neuralgia symptoms vary and can include:

  • T1 or TN1 pain: Short, sporadic, and extreme pain that may only last a few seconds or a few minutes, and that may also include a burning feeling
  • T2 or TN2 pain: Constant pain that is similar to T1 pain but is ongoing with no relief
  • Sensitivity to light and sound
  • Nausea and vomiting

Trigeminal neuralgia symptoms may disappear for a period of time and then reappear. As the condition progresses, periods of remission may shorten, and medication may become less effective.

Pain can be triggered by applying makeup, washing the face, brushing the teeth, or even the slightest touch. While not considered a fatal disease, many who suffer from this condition attempt or complete suicide, with a suicide completion rate of approximately 25% (double that of the general population).

However, Mayo Clinic notes the following. We’ll be discussing these specific trigeminal neuralgia treatments later in this post:

“Because of the variety of treatment options available, having trigeminal neuralgia doesn’t necessarily mean you’re doomed to a life of pain. Doctors usually can effectively manage trigeminal neuralgia with medications, injections or surgery.”

What are trigeminal neuralgia causes?

The main cause of this condition is damage along the trigeminal nerve. This could be caused by a facial injury or deep in the brain at the trigeminal nucleus. Other conditions that can damage the trigeminal nerve include:

  • Multiple sclerosis
  • Scleroderma
  • Herpes zoster (shingles)
  • Lupus

Some researchers hypothesize that deterioration of the myelin sheath surrounding the nerves may also cause trigeminal neuralgia. If there are no other trigeminal neuralgia causes that can be identified, this may be the most likely explanation.

How is trigeminal neuralgia diagnosed?

As with many similar conditions, much of the diagnosis of trigeminal neuralgia is based on eliminating all other conditions first. MedlinePlus reports that:

“There is no single test to diagnose TN. It can be hard to diagnose, since many other conditions can cause facial pain.”

Doctors will conduct a thorough physical and neurological exam. Patient history will include location and incidence of symptoms and any potential underlying conditions that may have caused the condition. Post-herpetic neuralgia (nerve pain caused by shingles), cluster headaches, and temporomandibular joint disorder (TMJ) have similar symptoms and patterns and will be eliminated as possibilities first.

Magnetic resonance imaging is used to look for a tumor compressing the trigeminal nerve. Other diagnostic tools include a short course of anti-seizure medication or tricyclic antidepressants, a positive response to which may indicate trigeminal neuralgia.

Overlapping symptoms of disorders that cause facial pain make designing treatment challenging, so it is imperative that a proper cause of pain be identified first.

Trigeminal neuralgia treatment

Pain management of this condition is imperative, as pain can be debilitating and deadly. There are many different approaches to trigeminal neuralgia treatment.

Anticonvulsant medication

These medications prevent the nerves from firing and are most effective for TN1. Carbamazepine, oxcarbazepine, topiramate, gabapentin, pregabalin, and clonazepam are a few examples of this type of medication.

Tricyclic antidepressants

Amitriptyline or nortriptyline are often successful at treating the pain of this condition, although how they work is not clear.

Opiates and common analgesics

Trigeminal neuralgia 1 does not usually respond to opioids and other analgesics, but TN2 sufferers may find relief. In general, opioids are not regarded as effective or safe in the treatment of chronic pain

Trigeminal neuralgia surgery

There are many different surgical options available to trigeminal neuralgia patients. The success of these depends on the overall health of the patient and any underlying conditions.

  • Balloon compression: Balloon compression injures the nerves in the face that can pick up light touch. This makes a patient less likely to feel pain. Results from this procedure can last up to two years.
  • Glycerol injection: This injection is delivered directly into the trigeminal nerve center in the brain, damaging the protective insulation of the trigeminal nerve fibers. This procedure can be repeated every one or two years as needed.
  • Radiofrequency ablation: This procedure damages the nerve that is causing the pain using an electrical signal. Half of people who have this procedure experience pain again in three or four years.
  • Stereotactic radiosurgery: This procedure uses a laser to damage the area where the trigeminal nerve leaves the brain. This cause la lesion to form, blocking pain signals.
  • Neurectomy: This procedure cuts superficial branches of the trigeminal nerve so that they cannot transmit pain to the face. Over time these branches may heal causing pain to return.

Another experimental option for trigeminal neuralgia surgery includes opening the skull and wrapping the trigeminal nerve in Teflon. There is significant risk to this procedure, but for some patients it can be life-saving.

Mayfield Brain and Spine has more in-depth information about trigeminal neuralgia surgery options, including current clinical trial research.

Complementary approaches

Complementary treatment approaches to this condition are usually focused on treating chronic pain and other symptoms. They may include meditation, acupuncture, and biofeedback.

For more information on trigeminal neuralgia and its complicated diagnosis and treatment, visit the National Institute of Neurological Disorders and Stroke’s webpage on this condition. Likewise, Memorial Hermann offers an hour long webinar that discusses trigeminal neuralgia symptoms and treatments. 

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2016-10-24T14:01:37+00:00 September 26th, 2016|Tags: |23 Comments

About the Author:

Arizona Pain
Arizona Pain was founded on a single premise–provide world class care that we would want for our own mom or dad. We use a team approach with cutting edge treatment plans as we ask one simple question with every patient.“Is this the treatment I would want for my own mom or dad?”

23 Comments

  1. Evie Binder April 26, 2017 at 6:42 pm - Reply

    Do you treat atypical facial pain, other than with pain medications? I’ve been suffering for 18 years. My pain was caused by many root canal treatments. Currently after passing into menopause my migraines have become much more severe, excruciating pain. Any help you may have would be greatly appreciated

  2. Douglas J Rucker June 9, 2017 at 4:41 pm - Reply

    Lived with severe t2 for 7 or 8 years was ready to end it. It had gotten unbearable, dr. Tew at mayfield clinic performed micro decompression surgery. He said it was good for life, 4 years pain free and no problems, don’t know why i resisted for so long. I have my life back

  3. […] Thinking that I might save a little money by facing up to the issue immediately, I rearranged my schedule and came back the very next day, only to have the nerves in my face damaged  by the procedure to such an extent that I ended up with a four-month case of trigeminal neuralgia, also known as “the suicide disease,” because 25 percent of sufferers commit suicide. […]

  4. Linda Hill June 18, 2017 at 3:43 am - Reply

    I was diagnosed 3 yrs ago and have been taking Carbamazepine since, it has been a Godsend! I had three bottom molars pulled and was ready to have every tooth in my head pulled to get relief from this pain. It is unbelievably unexplainable and debilitating. I don’t think it’s anything you can understand unless you have unfortunately suffered from this yourself.

    • Arizona Pain
      Arizona Pain June 26, 2017 at 11:30 am - Reply

      Hi Linda — Thank you so much for leaving this comment and sharing your experience with this condition. We’re glad you’re finding some relief!

  5. […] is described in simple terms as a pinched nerve in your brain. (It is literally called the “suicide disease” because roughly 25% of the people who are diagnosed with it commit suicide. SAD!)  Again, I […]

  6. Louise August 3, 2017 at 12:02 am - Reply

    I’ve just experienced chronic pain in the right side of my face all symptoms seem to point at Trigeminal Neuralgia however I went the Maxillofacial clinic and explainEd my symptoms but said that my face was not sensitive to touch and touching it was not a trigger unlike brushing teeth, talking, eating etc. They put referred me for an MRI and put me on Gabapentin which has been very effective and although experiencing the odd
    dull ache the pain has gone. On the letter I received from the doctor I saw at the Maxillofacial clinic it says he’s temporarily diagnosed me with Atypical Neuralgia. If I’ve responded to Gabapentin would this mean it its more likely to be Trigeminal Neuralgia? I’m 43 by the way and am fit and healthy. Thanks

    • Arizona Pain
      Arizona Pain August 6, 2017 at 2:48 pm - Reply

      Hi Louise — Unfortunately we can’t answer specific medical questions online. We recommend reaching back out to your doctor or get a second opinion for your question. If you’re in Arizona, you can also contact our clinic at https://arizonapain.com/contact-us/.

  7. Steven Medeiros August 22, 2017 at 11:15 pm - Reply

    Is it possible for TN pain to return the same place after surgery or can it’s atypical symptoms appear down the road on the other side of your face . This time the electric stabbing feels like a burning pulling on other side of face and in back/base of ear rather than above left side eye

  8. dave September 4, 2017 at 5:51 pm - Reply

    my mother is 75 and has had it for 4 years. It is at the point where pain meds no longer work. MRI this week then hopefully a neurosurgeon to identify a remedy. Something needs to be done soon. Don’t know how risky any surgery is but its got to be better than what she is going through now.

    • Arizona Pain
      Arizona Pain September 10, 2017 at 7:47 pm - Reply

      Hi Dave — We are so sorry to hear about this. Wishing her the best in her treatment.

  9. Amanda September 7, 2017 at 6:21 am - Reply

    Hello Steve,

    I am not a doctor. However, in my case I had a rhizotomy. It did not work and actually made it worse. Instead of the short electric shock like bursts I have constant pain (burning, pulling) and the shocks too. It happened on the same side it was always on. My neurologist said it was damaged during surgery. I have read that you can get it on both sides of the face. Although it is extremely rare. It also never is both sides at the same time.

    I have had quite a lot of experience with this awful pain. I have had it 18 years now and had unfortunately become just a part of life. My medications have increased in dose and decreased in effectiveness. It’s difficult I know!! Perhaps one or all of these meds will help you. They do help with the burning and pulling feeling for me.

    My current meds are
    Trileptal 1200mg x3 a day
    Cymbalta 90mg a day
    Lyrica 225mg x3 a day
    Dilantin 90mg before bed.

    These are all to control my TN.

  10. Tracie Rodriguez September 14, 2017 at 8:14 pm - Reply

    How can I make people understand what this is? If they have never felt the pain, they have no idea. I get judged harshly. The first time I went through this, it lasted for a month. That was 3 years ago. I’m having another bout of it. I have missed another week of work. I have 7 new prescriptions to take. I can’t afford this!! I’m embarrassed because people don’t understand how intense the pain is. Please help!! Is this something you can get disability for? I don’t want to quit working, but can’t afford to keep missing. Someone, PLEASE HELP Me!!

    • Arizona Pain
      Arizona Pain September 18, 2017 at 6:53 pm - Reply

      Hi Tracie — We are so sorry to hear about your pain. Finding someone who understands what you’ve gone through can be difficult. We recommend reaching out to our support community so you can find support and help from people who also suffer from severe and chronic pain: https://www.facebook.com/groups/11864244228/. Wishing you the best.

    • Lianne October 7, 2017 at 2:17 pm - Reply

      Hi Tracey
      There are quite a few support groups on Facebook. I can honestly say that the TN friends I have made through them have helped more than I ever imagined. Having others who know what it feels like is a blessing, a sad One, but one nonetheless. I know of many who have gone on disability but most had to fight quite hard for it. Hope you’re able to find a way to join us online. Today, 7 Oct is our international awareness day and most of my social media is teal in support of it thanks to all those I have met in those groups.

      • Arizona Pain
        Arizona Pain October 9, 2017 at 5:47 pm - Reply

        Thanks for sharing your story about the community you’ve found Lianne!

  11. Tully October 6, 2017 at 11:17 am - Reply

    Hi! My mom has had TN for as long as I can remember. I’ve never truly understood it until I decided to write about it for a project at school. Now, I understand it and she is so happy to finally be able to talk about it fully with someone. This website has been a big help in my research so far and I just want to thank you. Thank you!

    • Arizona Pain
      Arizona Pain October 9, 2017 at 5:48 pm - Reply

      Thank you for your kind words Tully! Glad this post helped.

  12. […]  “Why Trigeminal Neuralgia Is Considered The “Suicide Disease”.” Arizona Pain Specialists – Phoenix, Scottsdale, Glendale, Chandler. October 24, 2016. https://arizonapain.com/trigeminal-neuralgia-suicide-disease/. […]

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