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 of the intense pain, higher rates of suicidal ideation in patients with severe migraines, and links to higher rates of depression, anxiety, and sleep disorders, 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.

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. 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.

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 causes a 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. 

Note: This post originally quoted suicide rates as high as 25% for this condition, which was based on outdated research. We have since updated the information in this post. 

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2018-08-13T12:53:47+00:00September 26th, 2016|Tags: |45 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?”

45 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

    • Arizona Pain
      Arizona Pain June 12, 2017 at 1:15 pm - Reply

      We are so glad to hear that Douglas!

    • Grace November 15, 2018 at 11:40 pm - Reply

      OH DOUGLAS … THANKS FOR SHARING YOUR STORY. I WAS JUST DIAGNOSED 2 MONTHS AGO AFTER REMOVING ONE TOOTH AFTER ANOTHER …. THEN FINDING OUT IT WAS THIS ISSUE. BEFORE SOMEONE FINALLY FOUND OUT WHAT IT WAS … I LITERALLY HAD A SIT DOWN WITH MY MOM & SISTER TO LET THEM KNOW I WAS QUITE SUICIDAL & WHAT I WANTED DONE WITH MY THINGS BUT MORE SO, MY BELOVED DOG. HE WAS THE ONLY REASON I DIDN’T FOLLOW-THRU. THANK GOD A SPECIALIST FINALLY DIAGNOSED THIS …. NO ONE (UNLESS THEY HAVE HAD IT) CAN UNDERSTAND THE PAIN & HOPELESSNESS …. ESPECIALLY WHEN IT HAD NOT BE DIAGNOSED. GOD BLESS YOU!!! HOPE YOUR LIFE IS AWESOME!!!!

  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/. […]

  13. Deborah Bailey December 23, 2017 at 1:15 am - Reply

    I had surgery for TN in November 2017. The oneset started August 2016, l woke up around 1:00am in the morning with the worst pain. My bottom right tooth was pounding.I had stabbing pain, unable to sleep. I yelled and cried throughout the night. The next morning I went to my dentist. X-rays were taken, but nothing indicated that I had dental problems. During the next year the pain escalated, there were times I did not think I would live to see the next day.
    Refusing to give up I scheduled an appointment to see my primary doctor. We discussed the pain and he thought it could have possibly been related to a Neuro health concern however he recommended me to see my neurologist. At this point the pain was a beast! Thank God my family and close friends surrounded me with love and support. I begin to loose a lot of weight. After many months The pain increased and I needed higher dosage of meds. Often I felt like a zombie, having no control of my life. After almost a year of medical treatment, MRI , CT scans my neurologist said I was suferring from a disorder call trigeminal neuralgia..and referred me to a nerosegeon.
    I scheduled a consultation and the Neuro surgeron reviewed my images and notes. He confirmed my trigeminal neuralgia and explained the different options available to address the pain. He said I was a good candidate for the surgery which would correct my disorder. I decided to step out on Faith- and I had the surgery.

  14. Hannah McCurdy December 23, 2017 at 4:41 pm - Reply

    I have been living with nerve pain in my right arm for over 10 years now. Lack of resources, funds, and health insurance has prevented me from getting it fixed. I was a blackjack dealer for 17 yrs. Work comp denied because it wasn’t accute. After losing everything and pushing all friends and family away, I am at my end. All tests come back normal. I am trying thoratic outlet now. My doc does not seem hopeful. He has they lack the equipment and experience in Las Cruces,NM to evaluate this properly. He said Dallas TX is the closest place to diagnose my condition. I have been misdiagnosed incorrectly for years. Nerve pain meds, narcotics, alcohol, yoga exercise, acupuncture, stretches, rest, heat, cold, tinge units….you name it. I have stuck bandaids on my symptoms for years. It’s not getting better….the mental anxiety of these sensations over the years has caused my blood pressure to rise to stroke levels. I am going insane. I can’t think, function, work, or even wash dishes. Typing this letter is causing major irritation. It crawls, tingles, numbs, weakens, runs, pins, needles, constantly. It’s consumes my every thought. I constantly think of ramming a rod down into my shoulder and going to the ER and saying “now you have to fix it.” I am losing hope. The thought of one more day feeling this sensation is unbearable.

    • Arizona Pain
      Arizona Pain January 2, 2018 at 2:02 pm - Reply

      Hi Hannah — 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.

  15. Jason March 19, 2018 at 9:50 pm - Reply

    How well can a CT scan help with the diagnose of this disease?

  16. Victoria April 10, 2018 at 6:04 pm - Reply

    i had a terrible pain on my left side of the face , the pain i felt was like sharp needles and i felt like a lighting bolt hitting my left side of the head,the pain was strong that i had to twiicth my shoulder . i took a medicine that is used for people who has trigeminal neuralgia, however i was able to touch my left side of the face, talk and eat. i went to a surgeon neurolgy and told me i didn’t need surgery however he said : he was confused cause the medicine carba…. (that people who suffered tN worked for me, sorry i don’t remember the name ). I had the pain for 2 days and then went away. Im so thankful God the pain went away, at the time i was taking the carba… medicine i felt like a zombie and i was having stomach upset.
    Im very sad reading at the comments from people who suffer this disease and i understand your pain. I believe in God and i would pray for all people who has this disease. I don’t have words to comfort people who is suffering. all i can say is that i will have you in my everyday prayers. God bless you all!! lets have faith in god , he is the only one who can help us.
    Love you and blessings

    • Arizona Pain
      Arizona Pain April 16, 2018 at 9:21 am - Reply

      Thank you for your kind comments Victoria and for sharing your story!

  17. Jaquenettemassage@gmail.com April 28, 2018 at 2:21 pm - Reply

    My maxillo facial surgeon has diagnosed my pain as related to TM muscle spasm since I grind my teeth at night. He has recommended massage for the muscles from the inside of the mouth. Massage seems to make the pain worse, pain radiates over the whole right side and I feel numbness over my nose on the right. I realise you can’t diagnose. I just wondering if this reaction to massage indicates nerve complications such as trigeminal neuralgia.

    • Arizona Pain
      Arizona Pain May 7, 2018 at 4:26 pm - Reply

      Hi there — Unfortunately we can’t answer specific medical questions online, even more general ones like this. We recommend reaching back out to a doctor. If you’re in Arizona, you can also contact our clinic at https://arizonapain.com/contact-us/.

    • Denise Clarke November 9, 2018 at 10:36 pm - Reply

      I was diagnosed with TN two years ago. the attacks were seldom the first year but about a year ago they are happening more frequently and for longer episodes.
      The massage therapy that you mentioned, Is this something insurance covers? and where would I go for this type of treatment?

  18. Tim May 26, 2018 at 4:38 am - Reply

    As having been diagnosed with Trigeminal Neuralgia it hit me suddenly and hard. I can barely even sip water. I have no insurance and no one wants to help me. Is their any help for someone with no insurance? Or should I just find a gun now cause nobody cares?

    • Arizona Pain
      Arizona Pain May 28, 2018 at 2:34 pm - Reply

      Hi Tim — We can’t answer specific medical questions on the blog, but we can send resources. Know that you are not alone in your fight against this terrible pain. First, we recommend reaching out to a crisis hotline if you’re feeling suicidal. You can find a list of free options here, as well as free therapy options: https://paindoctor.com/free-therapy-online/.

      From there, we recommend reaching out to a doctor in your area for more treatment options. Be candid about your situation and ask both the pain clinics and therapy about affordable or non-insurance treatment options they offer. You can search for pain doctors here: https://paindoctor.com/get-relief-now/ or use the tips to find one near you here: https://paindoctor.com/pain-management-doctors/.

  19. Owen lewis June 7, 2018 at 7:52 pm - Reply

    I’ve been dealing with T2 for about 5 years. (I’m 15) it was very hard to deal with at first because they did not even know what was wrong with me for 3 years until they figured out it was Trigeminal Neuralgia. I was living with constant pain and not even knowing why. Now that I do know I still have the pain but unlike before when I was very suicidal because of this, I know try not to think about suicide because I don’t want to be part of the 25%. I used to think of suicide every day. Now I only think of it sometimes but quickly get it off my mind. Because even worth the pain, I just could not leave my family with the pain of losing a loved one due to suicide. But so far that’s the only reason I’m pushing myself to stay apart from the 25%.

  20. Becky June 13, 2018 at 6:43 am - Reply

    I am 37 years old and was diagnosed with TN2 at 27. It has progressed enough in 10 years that I can feel it everyday although the pain is not intense daily. One thing that I have found that helps with the dull pain is massage therapy. It’s the only way that I can feel normal for a while. I go to one of the local colleges that has massage therapy classes and they will actually do the massages for free as a way for their students to practice. I tried daily meds as a treatment for the pain and my body reacted harshly to them, I am not a candidate for surgery due to my age. My doctor gave me a drug cocktail that will knock me out for 12-16 hours to let the pain pass when things get bad but i am a teacher and a single mother of 3 so I can rarely use this. (Only 3x in the 3 years I’ve had the meds) For anyone searching for relief, please try massage therapy! It only works for short periods of time but IT WORKS!!! I had forgotten how it felt to feel good!!

    • Arizona Pain
      Arizona Pain June 18, 2018 at 4:44 pm - Reply

      Thank you so much for sharing your recommendations here Becky!

  21. Brian Cunningham July 26, 2018 at 3:46 am - Reply

    I had a brain seizure 12/17/17, grade four glioblastoma,removed by craniotomy. Right side temporal lobe . My first two months after surgery , I could not have asked for more ! Gym,contractor work etc , much easier recovery than many other surgeries I have endured . Seven weeks of chemo , radiation followed by chemo sessions on and off until now . My TNP, in my face , head on right side is so severe and intense now , I am unable to do much of anything. Exertion only enhances and intensifies this to unbearable. Many times in the past, I have had pain level this high leaving me no choice? As to require surgery , never have I experienced nerve pain this long after or as intense. Bone grafts, spinal fusions , both shoulders etc etc . Medications , almost psychotic ? Leave me confused, fatigued , unbalanced etc . Any help or recommendations are appreciated whole heartedly . THANKYOU , for all you help and best wishes .
    BC

  22. Troy H. August 5, 2018 at 5:25 am - Reply

    I’d love to see where you came up with your statistics? In the 15+ years I’ve been studying, researching, and managing my own TN, I’ve obviously heard the 25% suicide rate urban myth, and have read through all the statics debunking from many others who have tried to figure out where this figure actually came from – best guess is that is possibly from 80+ years ago, well before we had any of today’s medications or procedures which have been around for many, many decades now. If I’m wrong please point me to the stats you reference to support your 25% claim.

    • Arizona Pain
      Arizona Pain August 13, 2018 at 12:59 pm - Reply

      Hi Troy — Thanks for your comment and your work for the community. We also dug into the sources we had found that quoted for that statistic and realized too that it was largely based on outdated research. There is some evidence of higher rates of suicidal ideation among chronic migraine patients (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2854084/) and higher rates of depression, anxiety, and sleep disorders in TN patients (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4501948/) but no clear numbers or rates to quote. We have since updated this post to account for that. Thanks again.

  23. eric September 20, 2018 at 7:02 am - Reply

    had bad pain inface for a year eye ear jaw teeth forehead scalp every day told ihad cluster headaches now been told by neurologist have trigeminal neuralgia am now on tablets not working as yet

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