What’s Life Like for Young People with Trigeminal Neuralgia?

Trigeminal neuralgia is classed as a rare disease and is often wrongly thought to only affect people over the age of fifty. This leads some doctors to say to young people who have severe facial pain, “it can’t be trigeminal neuralgia because you’re too young.” They are often misdiagnosed or even ignored simply because of their age.

But they’re not too young.

Trigeminal neuralgia does not discriminate.

Although it does mostly affect people over the age of fifty, trigeminal neuralgia can affect people of any age, including teenagers and even young children.

What's life like for young people with trigeminal neuralgia?

Young People With Trigeminal Neuralgia Share Their Stories

Trigeminal neuralgia is extremely painful and debilitating for people of any age, but how do young people cope with the condition?

They’re at an age where they should be enjoying life, making friends, studying or starting off on new careers. Instead, they are dealing with severe pain, side effects of medication and often need to contemplate undergoing invasive brain surgeries.

Makayla, Emily, Crystal and Alexis are four lovely young women who have trigeminal neuralgia and want to share their stories to help spread awareness.

Makayla Bell – Developed Trigeminal Neuralgia at 15, Diagnosed at 19

Makayla Bell’s TN first presented at 15 years of age, but she wasn’t diagnosed until 19. Makayla is now 27.

Young people with trigeminal neuralgia. Photo of Makayla Bell who developed TN at 15.

“I was in grade 10 at School when I first felt the pain. It was a sharp pain on my left side that literally took the breath from my lungs. Assuming it was a toothache, I took some ibuprofen and booked a dental appointment. At the dentist I was assured there were no issues with my teeth.

My mum, a nurse, booked me an appointment with a General Practitioner. I was referred to another dentist, an optometrist, then an ENT.

When all came back clear the doctor formed the opinion, I was creating the pain in my head as a way of dealing with my childhood trauma. I was referred to a psychologist and began working through my issues, but the pain persisted. I didn’t talk about my pain anymore, as I was convinced, I was making it up.

When I was 19, I was working with my mum when we stopped to eat lunch. I was watching her eating a sandwich and I asked her what it felt like to eat that? She had no idea what I was talking about, so I described the pain I felt whenever I ate. Mum quickly realised I wasn’t making this up and she became my strongest advocate.

Eventually I was referred to a neurologist who diagnosed trigeminal neuralgia and prescribed the first of many medications. Unfortunately, I don’t handle medications well and I have reacted to every medication I have been prescribed. The reactions have ranged from nausea and vomiting through to suicidal thoughts. It was impossible to work while these medications were afflicting me. As I wasn’t willing to give up my job as a Disability Support Worker, I opted to try alternative treatments. These included Essential Oils, Massage, Acupuncture and Naturopathy. I had varied results with the alternative treatments and still use some today.

When I changed General Practitioners, I was over the moon to discover Dr Cole was experienced with patients with TN. She immediately understood my desperation to increase my quality of life, without having to give up my career. Dr Cole referred me to a neurologist who told me I wasn’t a candidate for Botox or MVD and suggested losing weight might be the solution.

Unhappy with this, Dr Cole got in contact with a Botox specialist and he was willing to take me on as a patient. I had my first session in May 2019 and while the Botox wears off quicker each time, it has decreased my pain to a level that has allowed me a much more active and generally happier quality of life. The botox changes the shape of my face and my smile each time I have it done, but it is worth it.

I was able to finish school, graduate Agriculture College top of my class. I am happily married, employed as a Support Worker and we foster cats.

Trigeminal Neuralgia takes a lot out of me, but it’ll never break my spirit.”

Emily Calhoun – Developed Trigeminal Neuralgia at 16

Emily Calhoun’s trigeminal neuralgia started when she was 16 years old. She’s now 20 years old (will turn 21 in June) and is a sophomore at Florida State University.

Young people with trigeminal neuralgia. Photo of Emily Calhoun who developed TN at 16.

“I began having issues with trigeminal neuralgia (TN) around September of 2015. I remember this time so vividly because the pain from the ‘headaches’ caused me to go off my diet for the weekend while me and my father were seeing the U.S. Women’s National Soccer team in Birmingham. Soccer has been a huge refuge for me and those women inspire me to keep going. I truly believe without them and a few other people in my life, I would have given up years ago.

I primarily deal with dull burning along with a severe crushing feeling in my sinus area that can get excruciating. I did however start getting small, quick shocks after my MVD. 

I was officially diagnosed at 17 in 2016 by a trigeminal nerve block. From there, we got in touch with Dr. Mark Linskey, confirmed with a Fiesta MRI, and did the microvascular decompression surgery, or MVD, in the summer of 2017. It unfortunately did not help me. In December of 2018, I did Gamma Knife, which was unsuccessful as well. I also might have a CSF leak, so we are going to fix that. Then, we will try a neurostimulator or radiofrequency ablation.

My pain has been such a handicap for me. I had been 1st in my graduating class since the 8th grade until I had to start doing Hospital Homebound from being in the hospital so much. This caused me to get a grade I was not accustomed to making. I fought as hard as I could to get my spot back, but unfortunately I ended up being 1/100th of a point behind her and was Salutatorian of my class. This is still an amazing achievement, especially while having been dealing with chronic illness during the second half of my high school career, and I ended up getting a standing ovation at my Salutatorian speech at Graduation when I literally ‘dropped the mic.’ 

I started at FSU as a Psychology major in 2018 (I graduated high school in 2017 but had to do a gap year due to the TN). Going to school with chronic pain is excruciatingly difficult. I have to have special accommodations for absences and make up work just to get through it.

Sometimes, (okay, a lot of times) I just want to give up, but I keep going because I want to be something despite TN. I want to have a career and help people who are struggling with depression and anxiety from chronic illness, something I’ve developed over the years from the deep isolation that comes with chronic illness. I know that ultimately, if it’s just too much, that I have a family who will take care of me, and I am so very grateful for them. 

I won’t need it though. I’m going to do this, and I’m going to make the TN/Chronic Illness community proud of me.”

What Does Trigeminal Neuralgia Feel Like?

Read this post and watch this video to learn what TN feels like.

Crystal Campbell – Developed Trigeminal Neuralgia at 21

Crystal Campbell is 23 and was diagnosed with trigeminal neuralgia in May, 2017, four days after her 21st birthday.

Young people with trigeminal neuralgia. Photo of Crystal Campbell who developed TN at 21.

“I woke up and the right side of my face was numb. Immediately I thought I was having a stroke. I ran to the bathroom, to look in the mirror and my face looked fine. I went on with my day. While working, I went into a walk-in cooler and got a bolt of stabbing pain through my face. The stabbing pain threw me to my knees, because of how powerful it was. I’ll never forget the feeling.

I went to the doctor that same day. It took a month and 5 different doctors to get a diagnosis. I started out with medications to help treat it, but it did nothing except give me awful side effects. One side effect landed me in the hospital, because it caused neutropenic fever.

After 7 failed medications and poor experiences with neurologist and neurosurgeons who were inexperienced with treating trigeminal neuralgia, specifically in young patients, I switched hospitals. In August of 2017 I switched to Mayo Clinic health system.

Switching hospitals pretty much meant starting over. I had to find a new neurologist, and eventually a neurosurgeon. At that point, my work was severally effected. I went from over 40 hours a week to under 20. I couldn’t eat, smile or talk without excruciating pain. Brushing my teeth was one of the worst things to do.

I continued to try different medications. They continued to give me severe side effects. I went on to try nerve blocks. They were a temporary fix, which only lasted 3 to 4 days at a time. I was then referred to a trigeminal neuralgia specialist, at Mayo Clinic in Rochester, Mn. They referred me to a neurosurgeon, who specializes in microvascular decompressions.

I had my microvascular decompression in February of 2018. At that point, I had lost 45 pounds in 9 months. I was only eating once or twice a week and relying on Ensure for the rest of my meals. I woke up from my brain surgery completely free of pain from my Trigeminal Neuralgia.

As time went on, I noticed the area around my incision was very painful. It took another 18 months, 3 diagnosis, and another brain surgery to fix it. I’m now 3 months out from my last surgery, and I’m mostly pain free, and feeling great.

Trigeminal neuralgia has definitely changed my life. Through it all, martial arts was a big motivator for me. I’m a life long martial artist. That was the main thing that kept me going during my worst. At 90 pounds, and with pain in my face, over a 10, I accomplished receiving my 3rd degree black belt.

Even though trigeminal neuralgia is one of the worse things I have experienced, and will probably ever experience in my life, I wouldn’t want to change it. Over the past 2 and a half years, it has taught me so much, and showed me how strong I could really be.”

Alexis Mayle – Developed Trigeminal Neuralgia at 23

Alexis Mayle is 23 and developed trigeminal neuralgia just before her birthday last year.

Young people with trigeminal neuralgia. Photo of Alexis Mayle who developed TN at 23.

“Honestly I’m not sure what I expected my 23rd year on earth to bring, other than being able to relate to the beloved blink 182 song, BUT I can assure you developing a condition like TN wasn’t it.

In July of 2019 (just before my 23rd birthday) I started experiencing bouts of pain in my teeth that several dental specialist couldn’t explain until I started having episodes of purely unbearable facial pain that put me in the hands of a young er doctor who “blessed” me with my diagnosis.

Since I am only 23 the doctors worried I actually had MS so I underwent several MRIs to rule out MS,Compressions/Tumors. Five months, three neurologist, a migraine specialist and two neurosurgeons later I was told there was a vein making contact with my nerve and I had a 70% rate of success as an MVD candidate.

On December 3rd 2019 my amazing surgeon performed a 4 hour Microvascular Decompression surgery at The University Of Cincinnati Hospital which has been mostly successful.

TN is not what I expected my 23rd year to bring BUT I can assure you all while chewing me up/spitting me out, it humbled me to my core. Good mental and physical health are never promised, no matter your age.

If you’re a young adult dealing with TN durning the peak of your life I want you to know this is an amazing opportunity to be your own advocate and to fight like hell for the life you deserve.”

International Rare Disease Day

Rare Disease Day last day of February to bring awareness to rare diseases.

According to the Facial Pain Association, Trigeminal neuralgia affects approximately 108,000 people in the USA, therefore it falls under the category of being rare.

Awareness

Please share this post to help bring awareness.

Trigeminal neuralgia is a very painful condition which is rare in over fifties, but as you’ve seen, it also affects young people.

We need awareness. We need more understanding. We need medical personnel to have more knowledge.

We need a solution.

Useful Links

If you are under forty and have trigeminal neuralgia, please take a look at the Young Patient’s Committee which is a branch of the Facial Pain Association, specifically for young people.

If your pain is out of control, there are treatments which might help. Please read this post: Treating TN in an emergency situation

My main trigeminal neuralgia page has more links and information about trigeminal neuralgia.

Thank you to Makayla, Emily, Crystal and Alexis for sharing your stories.

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16 thoughts on “What’s Life Like for Young People with Trigeminal Neuralgia?

  1. Joanna

    My TN started when I was 33. I was told I was too young by several doctors. It took three years to get a confirmed diagnosis. I feel sad for anyone with tN especially young people. I pray they find relief.

  2. Angela

    These are amazing young women. I was 31 when I received my diagnosis of bilateral Trigeminal Neuralgia. Thankfully I had already had my three beautiful children. It has changed my life so much. The strength and endurance it takes to push along is almost unbelievable. My heart goes out to all that suffer with this. My sister was diagnosed with the same thing at 31 as well. We could hardly believe that both of us ended up with this rare disease.

  3. Kelly Martin

    I didn’t know that trigeminal neuralgia affected young people as well. I really feel for all of these strong young people battling with the condition.

  4. Lyosha Varezhkina

    Reading your blog I knew so much about trigeminal neuralgia and it is scary. I don’t think developing it in young age is so much worse than being older, after all we do all want to live a full life. but those stories of such young people struggling feels harder, they have so much to do, like education and family and it will be considerably harder with pain

  5. This is such a difficult condition, made worse by people not believing in your condition! My heart goes out to Makayla who had to live for years without being diagnosed. So much awareness is needed for Trigeminal Neuralgia.

  6. It is disheartening to hear about the experiences of these four adults and I appreciate the way they have coped up with Trigeminal Neuralgia. You are doing a wonderful work by creating so much awareness so that no one lands up with wrong treatment when they are at a young age.

  7. Luna S

    I’ve never heard much about this, so it is interesting to read and learn more about it. It seems a lot of these conditions and diseases not longer have a set “Age” limit.

  8. Britt K

    While I understand the importance of recognizing high-risk age groups, any time that an age is specifically associated with a disease or condition like this, it always ends up causing difficulties for those who are affected outside of that specified age. I know that I experienced it first hand when it came to my cancer testing/diagnosis – there was no way I could be showing those signs because I was too young. Ya, okay, my body apparently missed that memo… lol

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  10. Beth

    Thank you for raising our awareness. I just learned of it when a young lady (21) in our community was impacted. This site has helped tremendously: understanding and knowing she is not alone in her experience. Your collective strength and self-advocacy is inspiring! Thank you for sharing.

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