photo courtesy of tnnme.com
I have given some thought to writing a post like this, but never really made the effort to do it. The reason? My experience with Trigeminal Neuralgia, also called TN, was one of the most difficult times in my life and not just because of the physical pain it caused. I wanted to write about it; writing is therapeutic, but it is like recounting a really scary dream to someone. It helps to share it, but inevitably brings the fear back. For me the fear is the re-occurrence of TN. They say it never really goes away..
Trigeminal Neuralgia, while it will always be a part of what makes me the person I am today, has been quietly sleeping in the back corner of my brain for over ten years now. Quite literally the back corner too. TN was rudely awakened this week by a news story on my favorite radio station, 680 News. ( Yes, I am a bit of a geek, but I like listening to the news.) The report was on this past Monday, October 7th and I heard it while driving home from a long day of work. I wasn’t really listening to the news. My mind was full from the incredible weekend I had just spent at BlissDom Canada, my first, but most definitely not my last, Social Media conference.
As is typical when I am listening to the news, but thinking of other things, I missed the introduction, but by now, TN and I need no introduction. We are like Frenemies. But it still shocked me to hear that old familiar description of “stabbing pain” and the far worse characterization, “the suicide disease.” The reason TN had a place on the airwaves that day was because it turns out that October 7th was the first “International Trigeminal Neuralgia Awareness Day.” Wow, really? This extremely rare disease was finally being outed to the rest of the world with it’s own day of recognition. I have to say my first reaction was to cry. Thankfully I was already off the highway, so I pulled over and just cried. Even now I need to reach for a tissue.
So, I am going to take this opportunity to share with you what Trigeminal Neuralgia is and what it can do to a person, a family. I promise not to get all technical and sound like an actor on Grey’s Anatomy. I use to do that, years ago, but truthfully, it just wears me out. I have been down that road and while I think there is a story very worth sharing, it is not coming from me. I do encourage, actually really want you to check out the site on the first International TN Awareness Day. I just don’t want to rent out a soapbox again. I have bigger fish to fry on the ole advocacy train. Maybe someday…
photo courtesy of pinterest.com
Trigeminal Neuralgia came into my life the year after Doug and I were married. When the first little pain hit me in the mouth I was immediately ticked right off. I thought I was getting a cavity and if you knew me then you would understand my displeasure. I was the gal known for carrying around all sorts of dental hygiene supplies, even leaving floss in my desk, the car, my purse, the kitchen drawer and even my lunch bag. Well, it turned out I did not have a cavity. I had Trigeminal Neuralgia. From that very first pain it took about six weeks to be diagnosed, all the while the pain getting worse. I was given medication for various things, but it was my mom who told me what it was. We cried together one afternoon, over the phone, because the pain was so unbearable I could not eat. My mom told me I had the same problem her aunt had many years ago. Back then it was called Tic Douloureux, but the signs and symptoms were the same.
When the diagnosis was made I was scared, but grateful. At least now I could get some relief. Well, that happiness was short lived. For the next month my doctor would prescribe ever increasing doses of Tegretol, the drug of choice for Trigeminal Neuralgia, as my pain levels increased. I started to have double vision, get migraines and even had trouble hearing. It wasn’t until I passed out in a store that my doctor decided to do blood work. I was admitted to the hospital before she received the results. The conclusion: I was allergic to Tegretol and the ever increasing doses were slowly killing me. I was lucky it was caught in time, but it took four months to recover from that and during the whole time the TN was becoming more painful.
Keeping my promise to not get too technical you should know that Trigeminal Neuralgia is a disorder of the fifth cranial nerve, one of the largest nerves in the head. It causes episodes of intense, stabbing, electric shock like pain, distributed in one or all three branches of the nerve – lips, eyes, nose, scalp, forehead, cheek, upper and lower jaw. Any movement that involves those areas is felt as pain, so even a kiss from your new husband was painful. There is no cure for TN, only medications and surgeries. Eventually, I opted for surgery.
photo courtesy of facebook.com
The decision to have Microvascular Decompression, or brain surgery, did not come fast or easy. I lived with TN for almost two years, went through over ten medications and convinced myself I would never have children. The drugs used to to treat TN come with a high risk of causing birth defects, most commonly Spina Bifida. Despite our desire to have several children, how could I knowingly sentence my child to this disease? On the good side I lost a lot of weight because of TN. Eating was difficult at times and to this day I am resentful of how my meticulously cared for teeth were practically destroyed. My decision to have the surgery came after a short remission ended. I had been pain free for about a month and my family was at a restaurant to celebrate my mom’s birthday. One bite of my meal and I knew it was back, only this time it resurfaced in two branch’s of the trigeminal nerve. My first bout with TN was in the third branch, but when it returned it effected the second branch as well.
Surgery, while being the scariest decision I have ever made, was my salvation. I am not sure how long it took, but to this day I have a lovely seven inch scar running down the back of my head that I wear like a medal. I beat Trigeminal Neuralgia! You can still feel the hole, under my scalp, where they had to go in and when I get a headache it usually settles in there, but the TN pain is gone. Some of the people in my support group were not so lucky. Even brain surgery is no guarantee that you will beat TN. I have to laugh when I say my support group. Even back just ten to fifteen years ago this disease was extremely rare, but we had the internet. My support group consisted of five people who chatted on line and were from all over the world.
I am definitely one of the lucky ones, but nothing is for sure in this life. I was warned when I had the surgery that, at the time, there was no one on record whose recovery lasted for longer then ten years. I think I am at thirteen now and still counting. 🙂 So, while I still get very emotional when I recall those years and there are several numb patches in my head and face from the surgery, I can smile without pain. I can kiss my two beautiful children. I can wear my turquoise ribbon and know that, at least for some, there is a light at the end of the oh so dark tunnel called Trigeminal Neuralgia.
Maybe, after this, the next person I wish a “Happy International TN Awareness Day” to will be able to smile back.
FT&PD
Suz
Oh Suz you poor thing, this sounds like it was such a traumatic time for you. I’m so glad that the surgery worked and you are now pain free.
Sam xx
Thank you Sam.. it was a very difficult time, but thank heavens it is over!
Suz
Wow! Many tears here too! When I told my dentist about TN and the family history of it having occurred at least three generations back, I still couldn’t talk about it without tears as I told him about you and what you went through, Suzanne. And yes, I should say, what we all went through! We felt for you and still do. Just yesterday I got my new cap and veneer on my two front teeth. A total of four hours in the dentist’s chair over two appointments, and no freezing! I couldn’t take a chance on the needle triggering the TN in me if I am one of the family members who may get it. Fortunately, my doctor has a patient with TN and he knows all about it. I lucked out there, and also with the fact that I never felt a thing when he did the work in my mouth. Now that is a gentle and good dentist! Thanks for sharing the information about the TN Awareness Day! And you know that our prayers of thanks for you continue always. ((hugs))
I guess it runs in the family Gemma. As soon as I realized what the news was about the memories came flooding back. I can’t help think of Emily and William and what the future might hold. I pray it is not TN.
Love you guys, Suz
One of my BFs has just been diagnosed with TN and met with a Neurosurgeon in Toronto last Friday. I have to admit I had never heard of this before and I sent her your Blog to read. She will find out later this month if surgery is an option. Thank goodness you were able to have surgery and can now see the light at the end of the tunnel. What pain you must have lived through!!
Thank you Mary Beth… This type of thing never leaves your memory, even though you try. I will pray for your friend. If surgery is an option, please tell her to take the opportunity. There are always risks, but the long term gain is worth it. If she would like to chat with someone who has been down that road, please let me know. I had lots of love and support during my stretch with TN, but did not know anyone personally. I can answer any questions she may have..
Hugs to you and your friend Mary Beth <3
suz
God bless you my Darling. Oh how I remember. Love you, Dad
Blessings right back Dad <3 I love you and Mom too <3
suz
I am fighting back the tears here too Suz (I should have read this at home and not work 😉 I remember that time, and realized it was a brutal journey you were on, but reading it …well it brings your experience with TN to a whole new reality for me. I can only imagine how felt when you heard that news report, I will continue to pray that your days with TN are a distant memory, and that William and Emily are never afflicted with this. Hugs cuz, xo Stef
Hey Stef, thanks so much for writing, I appreciate it. Yes, that time was a crazy one for sure and I am so glad I can look back at it now and not forward. I still harbour that fear to though, that the kids might get it. It is supposedly a lot rarer for kids to get it, but I know it happens. It is so not fair 🙁 My prayers are for all of us with Nicholson blood running through us ♥
Hugs right back Stef and thank you ♥
Suz
I couldn’t imagine smiling and always being in pain. I’m so happy you are pain free still 🙂
Thank you Randa, it was a rough go then. I thank God everyday it is gone. Thanks for stopping in!
Suz
Wow! That is all I can say. I can’t even begin to imagine the trauma you have gone through. Amazing!! You sound like a very strong woman and I have my fingers crossed for you that you continue to beat the odds. Thank you for bringing this horrible disease to our attention!
Thank you Kelly, I appreciate your kind words. I realized it was time for me to get it out there. Even when you tell people you are sick, if you can not see it, well it is hard to understand. Thanks for stopping in!
Suz
Hi Darling, as Gemma said the tears are flowing, they do come easily, , but remembering when it was not an easy time God Bless you darling , it took courage to write your story . You know that the prayers are on going and will continue. Love you Mom
Thanks Mom, I love you too ♥♥♥
Suz
Oh my goodness, I feel for you! That is awful – thank you for sharing your story with us though! Many of us, I’m sure, have never heard of this disease – it is always good to be aware and educated.
Hugs to you – you are a stronger person because of this!
Yes, you are right. Adversity, in whatever form, makes us stronger for things that are even more important in life. I am truly blessed to have had a successful surgery and can move forward because of it! Thanks for stopping by Multi Testing Mommy 🙂
Suz
Oh oh – where did my comment go??? I will type one again!
I’m so sorry to hear that you had this experience – you are definitely a stronger person for it.
Thank you for sharing your experience – it is important for us all to be educated and aware.
LOL, it did make it, but I am always happy to get another comment 🙂 Thanks again!
Suz
So glad to hear that you are doing well. I have been dealing with TN for almost 6 years now. I have had 2 small non invasive surgeries called Infra Orbital Nerve Stripping. The first one was done in 2010 and I was pain free for 2 years,( I was told it was normally 4 years but that i had a very aggressive nerve and it grew back pretty quick) I had the second one done in June 2012 and have been almost pain free….just a few little shots every once in a while. My surgeries were both done at Sunnybrook Hospital. I have just recently found a dentist who understand the pain I have gone through, and I will be setting up an appointment to see him in the next couple of weeks….but must admit I was like you and took good care of my teeth, but ever since this terrible disease came into my life….I have been afraid to get too much done at the Dentist’s as even a cleaning would set off the pain. I too am so glad that this disease is finally being outed.
Hello and welcome Pat! Thank you so much for having the courage to share your story with me. I know how difficult it can be so big hugs to you! I have heard of the nerve stripping and was offered a couple of other procedures. I took the plunge for the MVD because of the potential to give me a much longer pain free time. Being a newlywed we so wanted to have a family and I could not convince myself that the odds would be in our favor to not have any health problems with a pregnancy. I am so glad I swallowed that fear. My surgery was at Trillium Hospital in Mississauga with Dr Hart Schultz. He was an amazing surgeon, very kind and confident. Unfortunately the whole dental thing continues to haunt me. I can not even have a cleaning done without anaesthesia now, which is an expensive pain, LOL. I suppose I traded up though. The alternative was far worse.
I pray for your pain to be completed gone soon and for continued health. If you ever need to chat please feel free to contact me Pat and big hugs ♥♥
Suz
Thanks so much for writing this. You made me cry hearing about your struggle, but especially about your 13 years pain free. You see, my beautiful daughter was diagnosed with TN in Aug 2012, when she was only 11 years old. She has already had one MVD that relapsed after 8 months, and is on the path to her second MVD in the coming months. Oh how I pray she can write a blog like this in 13 years.
Oh Meg, I am so very sorry for your daughter. This is so not fair and I know you would take her pain for yourself if you could. When I was first diagnosed the doctors said it was extremely rare for children to get it, but one of the first people I “met” was a father whose nine year old had been diagnosed. Eleven is so young. I can not even imagine how she deals with the pain. Can I ask what meds she is on? How brave to face a second MVD. Your daughter is a true hero, as are you Warrior Mama. I will pray for her strength and healing. She can write a post for me anytime. If writing would help her get her thoughts out Meg I would actually be honored to have her share her story with my readers. God be with her and if you need to chat, have questions, please reach out to me. Hugs and prayers for you and thank you for sharing your story..
Suz
Thanks so much Suz for your kind words. She is right now on Trileptal and Gabapentin. We have a deep love/hate relationship with these meds. Before getting on Trileptal the first time around, and now working up the the combination of the two this time, the pain and attacks are just indescribable. It consumes Mom, Dad, our TN fighter, and her younger sister. Some attacks we are all in her room crying with her, because there is just nothing we can do (except pray constantly, which we do with all new fervency!) until the right medication combination is worked out and ramped up in her system.
There’s nothing like Pre-Algebra on that combination of meds! One of the things I find many outside the TN community don’t understand is that even if meds keep your pain fairly controlled (she still has breakthrough pain 4-ish times a week, but it’s mostly annoying, not debilitating and horrid) is how the meds affect the rest of your life. School is not fun. Years on these meds, probably increasing doses, will just become ridiculous as far as academics go.
I give our girl so much credit for her positive attitude through it all. Dad and I have both been humbled by her ability to come through the other side of a 2-3 hour attack, rest for a while, and then head to the pool with friends. She is just determined this time to not let it keep her from life. I read her your post and the first thing she said was, “Can I be her?! I want 13 years pain free!” 🙂
We will talk about her writing you a post (with Mom editing out the med glitches). It might be something really good for her to do. Thank you so much for your offer! It’s a pleasure to meet you. Just wish it was under better circumstances.
Meg, you have a very special child on your hands, God bless her. Kids always amaze me with how they handle such difficulties. They are the real examples of what a hero is. I remember those nasty drugs and the attempts to find the right cocktail. And when people question your illness because they can’t see it. I will continue to pray for your daughter and her younger sister to so that TN does not afflict her. I fear that for my kids. God be with them all.
I am happy to meet you to Meg and the offer is always open for your daughter to share her story, when or if she wants to. Or for that matter, as a Warrior Mama, maybe you would want to share your story? I would be more then happy to share one or both.
God bless and here is to a pain free weekend!
Suz
Wow Suz, I had never heard of Trigeminal Neuralgia until coming across your post. What a horrible 4 months that had to be and I’m so glad you got the surgery you needed! I love that your Dad posted a comment on here. That gave me good goosebumps 🙂
Thank you for your kind words Mike, I appreciate it. Yes, my Dad and my Mom are pretty amazing and were right by my side during this whole thing, as was my husband. I can recall when, after my surgery while I was still unconscious, I could here them all talking around by bedside. They were upset, praying, wondering if the surgery worked. I could not even open my eyes, let alone speak, but I heard them and knew I was gonna be okay. Oh, this still makes me so vaklemp. Family is everything. The four months of healing after the allergic reaction were pretty amazing when I look back on it now. It was after the surgery and in between that was the hard part, LOL. I appreciate you stopping in Mike, thank you..
Suz
Oh, wow Suz, first of all *hugs* to you, and thank you for posting this. I had never heard of TN before! What a strong woman you are to have gone through all that. I’m very glad that you don’t have that pain anymore.
Thank you so much Cass, that means a lot. I guess it was time to share it, if for no other reason then to shed some of the old skin from my TN journey.. I pray it stays away..
Suz
I have never heard of this before. Thank you for educating me and I’m so glad you are doing so much better! To me, you are brave, beyond.
Thank you for your kind words Anne…
Suz
Wow, I’ve never heard of this disease before, it’s scary stuff! I’m going to do some more reading about it, I like to learn about different diseases. I look after an elderly man who has a rare disease, too, it’s called myalgic encephalomyelitis
Thanks for stopping in Nena!
Suz
Wow, I’ve never heard of this disease before! I’m going to look up more info online, I like learning about things like this. I look after an elderly man who has myalgic encephalmyelitis, another rare disease that most doctors and pharmacists don’t even know anything about.
Wow, that sounds pretty interesting too Nena. I hope your charge is doing okay. Thanks for stopping in!
Suz
I’m so sorry to hear about this battle. Honestly, I have never even heard about Trigeminal Neuralgia. It sounds awful. What comes to mind is that saying- “God gives his toughest battles to his strongest soldiers” and you must be one strong soldier. Sending happy thoughts and prayers your way. =)
Thank you for your kind words Alexia, I appreciate it.
Suz
oh how scary! I can’t imagine. I just get severe migraines and have passed out from them. That is bad enough. This is my first time hearing about TM as well. I have to say the symptoms sound quite similar to someone I know who was in a car accident. The pain, the migraines,double vision, hearing problems= interesting and scary!!
I am so glad your surgery has worked out for you. I hope it continues~ <3
Thank you for your kind words Ashleigh, I appreciate it. Migraines are horrible to. I hope yours improve over time..
Suz
Thanks for sharing Your story , I had never heard about TN before ,I’m glad everything is working for you
Thank you Bernice, I appreciate your kind words. 🙂
Suz
Wow. An obviously emotional and personal post for you.
Thanks for having the courage to share this with everyone.
Lisa
Thank you Lisa!
Suz
Suz, Happy international TN Awareness Day 2015.
I was struck with TN & Sunct syndrome July 9th, 2013. I had no idea about the 1st TN awareness day just 3 months after my first attack. I hope you are still TN free. I’m hanging in there. Sometimes it seems like by a thread. I don’t leave the house much, see the sun, go out with friends, take my grandson on play dates or work much anymore. Today is hard.. Just reading. Viewing videos & hearing all stories I’ve cried all day…. Wait for it… EXCEPT FOR THE MASSAGE I had today. I scheduled it strategically.
Robyn
Hi Robyn, thank you for reaching out and sharing your story. I spent a good deal of time this week reading about others and their situations and it still makes me cry. Now that my poor daughter has to deal with it makes it that worse. I have been very lucky to have the MVD be not only successful, but last as long as it has (15 years!) and I pray that it never returns. I was told that if I got ten years out of it, I would be lucky, so I will take the 15 and run, LOL. I am glad that you were able to get a massage and enjoy it! I wish you all the best Robyn. <3
How incredible of a journey. How difficult. You are an inspiration, and this story will surely help others. Please share it every year on your anniversary. Hugs, my friend.
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