Tag Archives: suicide disease

The Most Excruciating Pain

This weekend I was hit by a bolt of lightning! My brain likes to surprise me with things like this. Just when I think I have made some serious progress it likes to remind me who is really in charge!

The bolt has hit me before, but it has been well under control with meds, and took about a two year hiatus. I was going about my day and had a wonderful massage. I kept telling everyone that it was probably the best massage of my life. Who knew something so amazing would open the gates of hell? That massage triggered what is often called the “Suicide Disease.” It is called this because many of those impacted have either committed, attempted, or thought of suicide. During my massage the nerves were triggered and within an hour I was feeling the shock waves. It certainly was not the fault of my massage therapist (who by the way has helped me with my issues immensely), it is just more of my damaged brain reacting.

Trigeminal Neuralgia is described as the most excruciating pain known to humanity. It is characterized by episodes of sudden, explosive severe pain along the trigeminal nerve. It is typically limited to one side of the face and impacts a few different regions. I have atypical trigeminal neuralgia that sets up camp in my right jaw, teeth, gums, and lip and is relentless. I can barely talk or eat when I am hit like this. It may sound questionable to those who have never encountered this disease because it is certainly not common. You may want to brush it off and even scoff at the claim that it is the worst pain known to humanity. I’ve had children, meningitis, two spinal surgeries, three brain surgeries, suffered many issues as a result of the latter, and I can tell you it is an accurate claim! Medical professionals made this claim – not some person randomly attaching it to TN. 

Unfortunately, this weekend was an attack like no other. I have never experienced it so profoundly. Not. One. thing could help me during this attack. I was buried under a mound of heating pads, pain meds did not make a dent in the pain, and I was left writhing and crying for two days. It would not let up so my husband, mother, and doctor said I was left with no choice but to head to the ER. 

The ER doctor took one look at me and immediately ordered morphine and a mixture of other meds. It is important for those of us who face a beast like this to be understood and to feel true compassion. I am so thankful for doctors like the one who cared for me! He knew quite a bit about TN and was fully aware of the level of pain that presents with flairs. He even laughed and said, “I’m not even going to ask you to give me your pain level because I already know what it is.” My visit to the ER was exactly what I needed to do, but I am left with some after shocks even as I type. 

I’m sharing my ordeal – my mess – for no reason other than to share a message! Here it is: If you know someone dealing with TN give them a big hug! Let them know you are there for them when they need it, and let them know you will help. Like me they may need soft foods, or soups until the beast releases its grasp. For those of you who suffer YOU ARE NOT ALONE! Do not give into the demons that tell you to give up. Find a support system who will be there to help. I know I am damn lucky to have mine! 


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