On December 16, 2017, I got my answer. I finally found out why I am in constant pain… why I scream like a demon, crying and throwing things. I found out why I can’t concentrate, why there feels like huge parasites eating their way through my brain. I found out why I am overstimulated just laying down staring at a wall. I found out so many things. And, then I found relief!
Yes, you heard that right! I have found relief. Well, more like intermittent remission… But, hey, LIFE does go on. And, it feels great!
If you’re reading this, it is my guess that you:
- Just found out you have “TN,” Trigeminal Neuralgia for short.
- Know someone, who has it, and want to find out more.
- Think you might have TN
You are so just sick of living with this disease that you are searching the web for about the millionth time, seeking a cure that simply does not exist!
If you are any of these people, please bear with me, as I share my personal journey through this living Hell and give some insight that might help you find your own relief.
Keep in mind, not everyone is “wired (literally)” the same. So, not everything on this blog will work for you. For me, it took a combination of things, all at once, to finally turn on the switch to healing. I had to learn my triggers. I had to learn a somewhat new way of life. And, I had to throw traditional medicine out the damn window to do it!
While I’m not one of those people that shun medicine, I try to avoid it at all costs. To be perfectly honest — and those who have been living this nightmare can vouch for me in the comments — there is no cure. There isn’t even a clear treatment plan. Neurologists cost a crapload of money, and many of us do not qualify for certain insurances or disability.
Those of us, who break down to get the surgeries, experience different results. Some will find relief — but, usually only for a short period of time (any relief is worth it!). I have met those that have received the surgeries and have had damaged nerves, found no relief and/or are worse off than they were to begin with. And, unfortunately, the same goes for the medicines that they will give you.
Because there are no medicines specifically designed for Trigeminal Neuralgia, many are prescribed seizure medicines with a disclaimer that they aren’t meant for this specific disease. What usually happens is when pain pills don’t work, we give in to the hope that anything is better than nothing. And, sometimes it is. But, this is almost always for the short-term.
I have met others with TN, mostly in Facebook support groups (shoutout to “Trigeminal Neuralgia Support Group” and “Trigeminal Neuralgia Support“), who will bluntly tell you that the medications they were prescribed made them “fat,” “lazy,” “unable to concentrate” and more! Some will tell you that they have had to double their dosages every few months before they have to give it up, because they simply do not work anymore. And, work! Do you know that this disease has cost so many people their jobs, livelihoods, families, independence and overall sense of pride that it is just devastating?
We have a rare disease. Some of us have more than one. Some of us even have rare strains of the rare forms of TN. I know I do. And, thanks to groups like Facebook… thanks to the amazing people in my life… thanks to ongoing research… I have taken back control of my life. While I may have a bad few days or weeks, once in a while, it’s only minor compared to the Hell I endured before knowing what it was that I even had.
I love to help others. I feel if we are given the tools and given the knowledge, we should share what we have learned. I hate the thought that 25-38% of us are known to commit suicide (I was almost a statistic.), thanks to this highly misunderstood, often misdiagnosed disease. I hate that many of us are told we are “making it up,” because you can’t see what we are feeling. I hate that it seems to attack the strongest individuals in society, the ones that used to live to make others smile, while now forcing a smile out, themselves.
Please stick around for a while, I have a lot to tell you. And, I hope you can put it to good use.
Jessica N. Abraham, A TN Survivor