What Is Trigeminal Neuralgia?: An Easy Guide To ‘The Suicide Disease’
In July 2015, I first heard the words ‘trigeminal neuralgia’ and a couple of hours later, I first saw the term ‘the suicide disease’ staring back at me on Google search. It made a very painful situation even more frightening.
I read somewhere a long time ago that around a third of people diagnosed with TN commit suicide because of it. How someone has come about this statistic, I’m quite unsure, because last time I considered it, you couldn’t actually ask someone who had taken their own life why exactly they had done so. However, this tag seems to have stuck with the diagnosis. I don’t want that to be the first thing that people see when they Google ‘trigeminal neuralgia’. I don’t think I can change that, unfortunately, but I can write the post that I would have liked to have read when I found out I had TN and wanted to know the simple stuff that I needed to know, not the scary stuff that wasn’t all necessarily true.
Trigeminal neuralgia, or more easily ‘TN’, is when your trigeminal nerve send signals to your brain telling you that you’re in pain, when it shouldn’t be doing so. The trigeminal nerve, which transmits sensations of pain and touch from your face, teeth and mouth to your brain, can become compressed by a blood vessel, or TN can be caused by other medical conditions such as a tumour, or MS. Click here to read more about nerve pain.
There are two types of TN: type 1, which is sharp ‘shock’ like pain, which comes and goes in bursts, and type 2, which is a dull constant pain, but, as far as I understand, there is no clear cut between one or the other, so I’m going to discuss both as the one condition. It is severe facial pain, either shocking and sharp, or an ache, or throbbing sensation in the teeth, gums or jaw, or a combination of these. I can feel my TN in my temple and sometimes in my neck. These ‘attacks’ can last anything from a couple of minutes to a few hours, sometimes with a few minutes in between, sometimes months or years. In most cases, TN only affects one side of the face, but it can affect both sides, sometimes at the same time.
There are three branches of the trigeminal nerve:
- The ophthalmic branch, which affects the eye, upper eyelid and forehead
- The maxillary branch, which affects the lower eyelid, cheek, nose, upper lip and upper gums
- The mandibular branch, which affects the jaw, lower lip and lower gums
Triggers of pain can be anything from lightly brushing the face, or a breeze against the cheek, to washing, talking, brushing your teeth, kissing, the cold, or simply nothing at all.
It is extremely rare to be diagnosed with TN – less than 0.001% of people in the UK have it. It is most common in women and people over the age of 50. It is possible to go into remission, but these periods can get shorter and shorter between attacks the older we get.
It really does hurt, but there is no way of knowing how many people commit suicide because of their facial pain. It hasn’t been a death sentence for me and it won’t be for a lot of people. It can sometimes be managed by medication or, in some cases, surgery. I’m not going to deny that, at times, I’ve thought the pain was pretty unbearable, but I’m still going strong.
TN does not have to be a death sentence! Please drop me a comment or a message if you have any questions.. ♡
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Hello! I ran across your blog this evening while searching to see if there were any studies on piercings that help with TN pain. I have been on a long road with this disease. I had constant, non stop, pain for a year and was made to feel like a crazy person by multiple doctors. No one could figure out what was wrong with me. After 4 years I was finally diagnosed with TN. Having a diagnosis was a relief until reality set in that this is what my life has become. The depression, the pain, and the skepticism that others have towards this disease is tough. I have been home from work for 2 weeks and I went to the doctor on Thursday. Even this doctor, a general practitioner that I went to during this flare up, starts talking about how she doesn’t believe that I have TN. It’s hard enough living with this when no one else can relate to what you are going through. Any way, it was refreshing seeing another person that can relate to the daily struggle.
Hello! I hope you’re feeling okay as can be today! 🙂
A piercing won’t work for nerve pain, but there are medications you can try to take the edge off.. Are you currently being prescribed something from your neurologist?
Hang in there, you’re not alone ♡
I am on medication currently. It took 4 years to be diagnosed. But, once I was diagnosed I was put on an anticonvulsant, an anti-inflammatory, and a muscle relaxer. I am actually in search for another neurologist for a second opinion on medication. My current neurologist wants to take me off the meds all together. I’m not sure if that’s typical with TN treatment or not and it’s terrifying to think of stopping meds that help with my symptoms.
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I have had a-typical-trigeminal neuralgia for over 10 years. I have had 2 stimulator surgeries, then 1 surgery to fix a broken wire. Then yet another surgery to remove everything, because I was allergic to the wires – The trial surgery worked great for 3 days, but when the trial was taken off, the pain returned with a vengeance! I have had at least 3 other surgeries, but none worked and I am in constant R gum pain 24/7!!
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I’m on my new TN journey. 6 months in with TN 2 and I’m exhausted. Emotionally, physically, all of it. I’m on 1.800 mg of gabapentin daily and working full time while going to school. My husband has zero sympathy or understanding of this disease. My neurologist is months out. I will finally go this month. Same as you, my MRI had ‘no significant findings.’ I am just grateful for community and people who understand. Thank you for your blog. If anything, it’s nice not to be alone! Anyone experience eye pain? My vision issues may be to gabapentin? But my TN is currently on my chin mouth, and up to my eye painfully. I just want a repreive ❤
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