Just over fifteen years ago Trigeminal Neuralgia knocked on my door and unlike the Big, Bad Wolf nothing stopped it from blowing my world apart. Today, October 7th, 2014, is the second annual International Trigeminal Neuralgia Awareness Day. This day is set aside to not only spread awareness of this horrible disease, but to remember and honor those it has taken and those who still fight this battle.
When I wrote about Trigeminal Neuralgia (TN) last fall in this post entitled “The Suicide Disease”, little did I know just how soon we would be reacquainted. I would have been happy to never hear those two words again, but fate had a different plan.
Earlier this year, while on a mini getaway with the family, my daughter Emily told me her face hurt. Anyone privy to our conversation might have thought she had a toothache, or maybe just a headache from too many water slides and late bedtimes. But they wouldn’t have seen the way Emily cradled her jaw in her left hand. They would not have seen the fear in her eyes when another pain hit. They would not have seen the panic in mine as the realization swept in. My eleven year old daughter was displaying classic symptoms of my old arch enemy, Trigeminal Neuralgia.
The pain of TN can hit in one or more of the branches..
I thought we had more time. I had hoped that maybe the doctors were right fifteen years ago when they told me Trigeminal Neuralgia was not hereditary, even though I knew, deep down, that they were wrong. I prayed this day would never come. Not for my children. At the very least I thought we had more time before my child would start to experience “the worst pain known to man.”
After enduring doctors’ appointments, blood work and finally an MRI during the last week of school, a diagnosis of Trigeminal Neuralgia was confirmed. My eleven year old daughter had it. Years ago a very talented and well respected neurologist insisted to my mom and I that TN was not hereditary, despite the fact that I was the FOURTH generation on my mom’s side to get it. We were now proving him wrong once again, yet that little victory was a bitter pill.
The funny thing about Trigeminal Neuralgia is that it is supposed to be “an old person’s disease.” So when, at age 27 I was diagnosed my doctor couldn’t believe that was what I really had. So how could I get them to see that an eleven year old had it? From the very first appointment I had to fight with our doctor to make the MRI referral. Emily still had to wait two months. Nothing helped with her pain and the TN continued to get worse.
Not only is Trigeminal Neuralgia only supposed to affect those over fifty, it is also extremely rare. Rare as in no one has ever heard of it. Children diagnosed with TN are few and far between. This means that not too many doctors know how to treat it. We were fortunate that Emily did not have to wait long to see the Pediatric Neurologist, and better still in his five year career since medical school he had already dealt with one other patient who had TN. That’s right, ONE other patient in five years.
Emily on her way to school this morning..
Emily has continued to surprise me at every turn. She has handled the constant blood work like a trooper and even walked into her MRI, rather than use the wheelchair. We have shared many tears, but she always rallies back. I had hoped that Emily could start her drug therapy during the summer, before school started, so that she could adjust to the new medicine, but that plan was ambushed. The drug of choice to treat Trigeminal Neuralgia is called Tegretol. Even fifteen years ago it was the go to medicine. Fifteen years ago Tegretol almost killed me with a massive allergic reaction. When we told the neurologist this more tests were ordered and Emily’s blood was examined at the Mayo Clinic in the United States. Thank the heavens she was not allergic.
Emily has now been on Tegretol for six weeks. The side affects, if any, seem to be keeping their distance, which is a miracle in itself. Emily has been on a very low dose because of the slight chance of an allergic reaction, but this will change soon. An increase is imminent and it can’t come soon enough because of something called “breakthrough pain.” The attacks of TN pain are becoming sharper and lasting longer. They are starting to affect Emily’s ability to concentrate. This is why I hoped and prayed we had more time. Time for her to grow and not know what this horrible disease felt like. Time to have a normal childhood, free of a drug regime. Time for maybe a cure to be discovered..
In honor of my daughter Emily I will be wearing teal today. Please help spread awareness of Trigeminal Neuralgia and help #TurnTheWorldTeal.
FT&PD
Suz
You have one brave daughter Suzanne. Our thoughts are with you both. Is the medical community anywhere close to finding another treatment or cure?
Oh thank you Kelly, that means a lot to me <3 In the fifteen years since I had brain surgery (Microvascular Decompression is the official name) for Trigeminal Neuralgia there have been no advances whatsoever. The same drug is still the best and there really is no other alternatives that work. We just have to keep trying and bringing more awareness. Thanks for the support Kelly, Judy and Lori
Love my Disney family <3
I can really sympathize and empathize. Most people do not like a physician cutting in on their conversations but this is actually part of my job and my mission. To educate those who need help with pain. I also field answers and give questions on top rated website HealthTap (not an ad).
So excuse me for cutting in. Like I said, I am a family doctor, I have TN too, I treat TN in my office with alternatives treatments with acupuncture, dry/wet needling and massage and I know what works on a consistent basis and what does not seem to work at all.
I must say the TN is not completely what is written in the textbooks, it is much more complex but at the same time much more manageable or treatable. How do I know? I’ve spent a lot of time hunting down tid-bits or “bread crumbs” left my many of old doctors and trying and applying what they discovered. What a wealth of info and experiences they have to offer.
The modern Textbooks and web pages describe TN as a fixed disease and want to fit everyone into the set patterns. Then these books and webpages just offer up the modern treatments; medications, nerve blocks, nerve burning and open surgery. This leaves many folks suffering with no idea of complementary options that could make a huge difference.
These old-school doctors, IMO, had many many ideas that were just as novel 50 yrs ago with better success. Yes! They also had effective treatments for acute and chronic pain. IMO, They had time to individualized and personalized care better. Which turns out to be good because pain is unique to each person. They used every available option all together in a mix. I remember as a student in the ‘80 with weird cases, we would “punt” them off to the physical med and rehab department. How that I know better, that was the best place for long-term pain patients! Those Phys Therapist would work on these pain syndromes and ignite natural healing which is the purest and truest type of pain medicine.
Remember there are NO new pain diseases, every pain disease has been a part of the human misery from the beginning. Today we see and treat them differently with high-tech science and technology. This is not good for many long-term pain problems.
Thank you Stephen, I appreciate your comments. And no I do not think you are cutting in. We can all learn from others, no matter how much we have experienced. Your patients are definitely in good hands! It’s not great that you have TN, but you would certainly be better able to feel what your patients are. I think with TN that is key. So many assume it is nothing because they can not see it.
Thank you for sharing your interesting outlook Stephen. It makes sense that there are “no new pain diseases” when you think about it. It would be interesting to see if the medical community would embrace going old school to treat many illnesses, even to just run trials for awhile. From what you say the results could be amazing for many people! Thank you for sharing this Stephen, I appreciate it..
Oh my goodness. I had never heard of Trigeminal Neuralgia before until I read your post. My heart breaks that you’ve had to go through this 15 years ago, and now again, with your young daughter. But I’m glad you were able to get her seen and push them to test her for this. I hope her treatment does well for her. It sounds like she has a great support system and comfort in knowing that you understand what she’s going through. Hugs to all of you! <3
Thank you so much Brandi
As scary as this whole thing is I am glad I went through it before Emily so I can anticipate her needs at every turn <3
OMG! I’m so sorry that you have to face it and now your daughter! I’m extremely worried as I have celiac and i don’t wish it on my enemy nevermind my kids. I can relate your fears! I’m so glad you DD is getting the help that she needs! Way to go Super MAMA!
Thank you Jennifer
It is the worst thing ever to think of your kids dealing with the crap we deal with as adults. All we can do is pray..
Thank you for sharing. I have never heard of this before. I am glad to hear that you daughter is getting the help that she needs.
Thank you Ann. I am happy to spread awareness of this rare disease..
Thank you for sharing this post. I’m so sorry you and your daughter had to experience this. I had never heard about Trigeminal Neuralgia before. I am glad that your daughter is getting the help she needs and hope her road to relief is brisk.
Thank you Fariha, your good wishes are appreciated
Very well written article, Suzanne. You and Emily both know that we are here for you at any time and that we prayer to GOD that Emily does not get any worse and maybe one day we will have a cure..
Thank you Mom.. It was tough to write, but I have wanted to do it for awhile now.
Suzanne, I can only imagine how hard this must be for you to see Emily deal with this! It’s one thing for us to feel things, but it is so much worse to see our kids in pain. I have a friend here who was just diagnosed with TN last year and I’m forwarding this post to her so she can watch out for her kids. ((hugs))
Thank you MaryBeth.. I appreciate you sharing my post. I have never met another TN sufferer face to face before, with the most recent exception of Emily. It is so rare to learn of someone with it that when I do it just breaks my heart. All the best to your friend. If they ever need to talk or vent send them on over.
Wow Suzanne, what a powerful post. My heart breaks imagining what your family must be going through..It just sucks!
Thank you so much Dana, I appreciate it. It does totally suck
As poignant & eloquent as ever, Suzanne. Emily is lucky to have a Mama Bear like you who is used to fighting uphill battles & never taking no for an answe!
Just so sorry that Em has to go through all of this. But at least she isn’t allergic to the medication.
Thank you Kari, it was a tough one to write, but I have wanted to for awhile now. I will always be there for my kiddos, whatever the storm brings our way. <3 <3
Suz, thanks for writing about TN. I’m so sorry that your daughter has this disease, but lucky that her mom was keeping an eye out for her. It sounds as though the doctors don’t have proper information about TN, which is pretty scary.
Thank you Jenna..way too many doctors have no idea what to do with a TN patient. It makes the awareness campaign that much more important..
I’m with you in getting the word out. I used to study TN in my subjects about pain medicine in Pharmacology, since I am a pharmacist, and I know the pain is unbearable. Neuralgia, of any sort is unbearable. I’m praying for your daughter and your family.
Thank you Phyliciamarie, your prayers are appreciated so very much <3
You girl is very brave.. she has the courage to take this condition in her stride and move forward in this young age. Love and respect to her.
Thank you!
Thanks for sharing this information. I have never heard of this before and I am so sorry you are dealing with this.
Thank you Stephanie
Oh, I just want to hug you both! Thank you for bringing this to the attention of so many. This is going out through my SM channels to do what wee bit I can. Kudos to you both for handling it so graciously and with such courage
Thank you so much Melanie, I appreciate it <3
OMG, Suzanne, you are both brave! That was so hard even to read, let alone write, I’m sure. I have to get something “Teal” and I’ll wear it. Like the tee-shirts. Where can I buy one? And ribbons? Do we make our own? I remember my own experience with dentists who know nothing of TN….yet my present one who does and is so understanding when I tell him not to freeze my mouth before he does what has to be done. It is such a horrible condition to have in our family history. Love and prayers to both you and Emily!
Hi Suz! This is the first time that I have heard about this disease and it breaks my heart that you and your family have to suffer from it. I wish you all the best and remember, this too shall pass.
Thank you for our good wishes Chel. Awareness will help bring about a cure someday..
Thanks for sharing this piece of information. It must have hurt real bet when your daughter was ill. I’m so glad that she’s strong and positive. I believe, one day there will definitely be a cure for this illness!
thanks Tiffany, it has been hard, but she is strong..
Your daughter is really brave. I hope she gets the time you need and eventually overcome this disease. I guess young people can be more resilient.
Thanks Franc, she is very resilient..
My heart goes out, I also had trigeminal neurology I suffered with it for like seven years finally I found neurologist I did a procedure called cyber knife the only drawback is that now on my right side of my face is numb but trust me I can live with this after having the unbearable shooting pains which when this would happen I could not even talk so I know the pain of this disease and I wish Susan success in getting it taken care of it is very painful disease
Wow I have never heard of the cyber knife procedure Judy, but I understand about the numbness. The right side of mine is number from having the brain surgery, but I will take that any day. Thanks for your good wishes.
For an unhealthy child like me, I understand the pain and frustration of being ill all the time.
Like me, I am sure Emily will be a warrior and her own heroine in life.
We overcome more things than others and we live our lives full of appreciation.
We have an additional capacity of being understanding and also stubbornness to conquer all in our way.
Don’t worry about Emily. Im sure she will lead her life her way, to the fullest and with no regrets.
My thoughts are with you.
Cheers~
Pingerrain * Priscilla
http://www.pingerrain.com
I have no doubt that Emily will do many great things Priscilla, I just hope she is pain free when she does
oh no, a mom’s worst fear right? it’s so hard to watch our babies go through something like this. There’s some comfort in knowing that you understand exactly what she is going through and can help her through it. You are her best advocate and will be an amazing support for her.
Yes, it really is our worst fear Jennifer
I will always be there for her though, always..
Thank you for telling your story and your daughters story. I have neural pain, so I can imagine at least part of the pain she’s going through. And it’s not fair for someone of her age.
Oh Joanna, I am so sorry. No one should have to deal with it..
I have never heard of this disease but now. I could not of course fathom the pain you are suffering while watching your daughter suffer in pain. I’m always told that it’s double the pain. As for Emily, she is a strong and courageous kid. I hope she gets better. She is young and has a long life ahead of her.
So sweet, thank you Enzo..
Thank you for sharing your family’s story with us, we might not be able to alleviate your or Emily’s pain but we are here for you and will always rally your cause.
I am a new mom so I’m only understanding now, as a mom, what it feels like to love unconditionally a child and how difficult it is for us moms to see our child in pain. I hope SOON there is a breakthrough medicine or treatment for TN Suzanne.
I wore teal today but did not know of your hashtag. I will definitely be hash tagging #TurnTheWorldTeal every time I wear that color.
You are so sweet Karen, thank you. Enjoy the blessing of being a mama <3
its horrible that the disease also affect your daughter, i just read the first line on wikipedia about this disease and it shocked from my heart. How that little girl bear that pain. I will definitely pray from god
Thank you so much. The power of prayer is amazing!
Two of my sisters, me, and a cousin all have either trigeminal neuralgia, trigeminal neuralgia and neuralgia of additional cranial nerves, or neuralgia of other cranial nerves. one great grandfather had some sort of head aches that kept him prisoner in the house on the days they occurred…reading his journal reminds me of reading my own.
An interesting point is that, although we all began with tegretol, it didn’t work for us for long. ultimately, the drug regime we have all ended up on includes depakote and acyclovir – an antiherpetic agent. Immunologically, our blood work looks as if we are fighting shingles, with nary an outbreak anywhere most of the time, and certainly none of the shingles lesions they show in advertisements for the shots.
I am so sorry your family has to deal with this Patricia, that must be horrible! I recall my great aunt and now that I know what she suffered from it breaks my heart that there was enough done for her.. Hugs to you all!
First time to read about Trigeminal Neuralgia. Thank you for raising awareness, this will be helpful to everybody.
Thank you Karen..
This post saddened me so much. I have also heard this disease is hereditary but mainly infects elderly people and this news is too much for me, she is just eleven years old, for Christ sake! You are right, the way we can help is by spreading awareness of the disease.
Thank you Vanessa
It’s so sad to hear this, and from your post I can see that your daughter is a very very brave person. Thanks for sharing this and raising awareness of this disease. May God bless your daughter and she’ll recover fast from this.
Thank you Rebecca
Brave daughter and mum, fighting together.. Hope you daughter will fully recover soon..
thank you so much Kylie!
I believe that all things work together for good. Just have faith on Him and He is there for you and your daughter.
We do have faith in Him for sure.. Prayer works wonders..
It is truly ok to delete my post! Godspeed you your journey!
Gosh no I would not delete it Stephen! I appreciate your comments and thoughts. thank you so much!
What a powerful and brave story! My heart goes out to you and Emily and my prayers for a cure continue. You are such a beautiful soul and I’m confident that great good will come to both of you. Sending healing love and light your way!
Hugs,
Elizabeth
Thank you Elizabeth,,
Praying for your daughter, I have a few friends who has same as this case. Glad to read your story. very inspiring
Thank you Manu, I appreciate it.