I agree that the name is misleading. Less than 1% of TN patients commit suicide. Compare that to 15-20% of bipolar disease patients, and you can see that TN really does not deserve the name. TN actually responds to drug and surgical treatment better than many other types of neuropathic pain. A lot of researchers may use the name as a way to draw sympathy to the patients’ plight and get more funding, which is a good thing for us. On the other hand, patients may get a nocebo response and it may encourage the idea that suicide may be the only way to get relief, which is definitely not true.
I’m a right to die supporter and believe suicide is a valid choice in any free society, but you make a compelling argument not to associate the two.
I think it’s fair to not label trigeminal neuralgia the suicide disease out of respect for sufferers who don’t feel that way. It’s fair to say some who don’t believe treatment is adequate would consider the option, but that could be true for many diseases.
There shouldn’t be any stigma in my view, but I agree there is. People can and do create similar pain of suicide by shunning friends and family and moving to distant places with no intention of letting them know if they are alive or dead. For all intents and purposes might as well be dead without the closure and ability to grieve and without the potential positive of a life of suffering peacefully ending.
It sounds like two antiquated ideas dove tailing and causing more suffering than necessary all around.
Hi everyone I do understand why the name "suicide disease " is used in relation to TN. I have had a really hard time dealing with the pain and finding the right medication for pain management and even getting a correct diagnosis. I am not suicidal but have begged to die during my worse attacks. Its not only called the suicide disease because of patients becoming depressed, so many people have overdosed from taking too much medicine try to find relief. Many of the suicides should be labeled accidental death because death may not be the plan only pain relief. I remember a few years back my face was hurting so bad for weeks and I was finally able to find a dentist. The night before I went to the appointment I was in so much pain it was unbearable and I was taking medicine all different kinds because nothing was helping I went to the emergency room multiple times and nothing helped but my mom took me to the dentist office and I passed out before my name was even called. I had taken too much medicine and I had a bad reaction to it. I was rushed to the emergency room and I can barely remember what happened. I do know that I wasn’t planning to kill myself and if I didn’t have to be at the appointment I would’ve been home alone and I probably could’ve died that day but luckily I was around people… I don’t like the name suicide disease either but I do feel like it’s a name that will keep family members and friends of patients aware of the severity of the disease and also enlighten them to keep the mental well being of us in mind.
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I really get scared and resentful that TN is called the suicide disease as I have fleeting thoughts of “how am I going to live with this the rest of my life”? I am 57. It is a very dangerous labeling. I believe that their was a very thorough treatise regarding the origin of this moniker however reading is too painful for me so I do apologize that I did not process it. I can only read in small increments, another adjustment.
Thank you for letting me sharing.
Christine
I have Atypical trigenimal Nueralga from lower jaw surgery and it’s a constant horrendous sting in my bottom lip. I often think why I survived surgery due to the pain. I’d never hurt myself but I do have those thoughts
I gave up reading when you got to “Smoking kills”. I have and will continue to use the term. Yes, you suffer with pain, welcome to the club. We all do!
Yes I have considered suicide, seriously. I suppose many do, and we’re all cowards. But we know what pain is.
So if I roll around on the floor in agony, with all the drugs under the NHS in me and it doesn’t help, then hell I will consider suicide. If I don’t do it, then maybe I’m thinking of my 7 year old daughter. So, what ever you wrote after my quote, I don’t care.
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Let’s not take this too seriously, it’s an older term that, in my opinion, crystallizes the level of pain being experienced for those who have not experienced it into two words. You really don’t have to struggle to explain how terrible something is when the alternative name for it is “suicide disease.” I’m okay with that.
My primary condition is migraine. It’s thought 30 years of migraine damaged the nerve creating TN2. The easiest way I have found to explain migraine is the following quote: “A headache so terrible you’re afraid you’re going to die that keeps getting worse until you’re afraid you won’t die.”
Dramatic? Only if you’ve never had a migraine. So is Suicide Disease dramatic? Only if you’ve never laid in bed with your face on fire for the third month in a row thinking “I can’t do this.” But you do it. We all do it. Collectively that’s who we are.
I think the term Suicide Disease is nothing more than a way to explain it to those who have never gone through it.
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when I heard the term, I felt validated. this pain is beyond description
Many people with TN think it is the perfect name, and happily use it. Sprinkling it around like sugar on cornflakes…might sound slightly condescending …just sayin