School and Trigeminal Neuralgia

I received my official TN diagnosis in the summer of seventh grade. I had already been dealing with what was assumed to be migraines since I was eight years old, though we later learned that those pains were actually TN. Still, my first big attack that got me my official diagnosis started in July, and it took until the end of the month for the doctors to figure things out and to start me on an anti-seizure medication. It was not until September that I learned how the medications and new pain would affect me in school.

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School and Trigeminal Neuralgia Medications

I won’t sugarcoat it. It was hard. I took my medications at night at that time, so that I would sleep through as many of the side effects as possible. While well-intentioned, the plan did not work as well as the doctors had hoped. The side effects would linger through the day, making me extremely drowsy through my school day. It would not be until seven or eight at night that my brain would truly wake up. It was then that I could get my homework done. What would take me three hours to complete at 4pm would take me a half hour in the evening!

This started a vicious cycle though, with me often taking naps when I got home from school, getting homework done late at night, and not getting a full night’s rest. The thing is, it didn’t matter if I got 2 hours of sleep or 12 hours of sleep – if I was within a certain time frame after taking my medications, I was exhausted, dizzy, and had difficulty thinking clearly.

This combo makes school very difficult! Classes that were once easy for me became a struggle. It was common for me to fall asleep in class, despite my best efforts to focus on the lesson. It was involuntary at times!

Trigeminal Neuralgia and School
Don’t let Trigeminal Neuralgia hold you back.

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Understand the Side Effects

Back in 2008, TN advocacy was not what it is today, especially for young patients. Until I was older, my parents blamed much of my newfound exhaustion on being a teenager, not realizing how strong the medications were that I was taking. They did not realize that accommodations could be made for me in school, like being given more time on tests or when taking my SATs. They knew I was struggling, but thought it was something that I’d just have to learn to deal with.

My parents are divorced, and my mom would drop me off at my dad’s house every morning before school. Since my dad did not see me as often as my mom, I don’t think he fully realized how drugged out I felt in the mornings. He assumed my newfound exhaustion was because I stayed up too late at night. I’m sure staying up to finish homework did not help, but it was my only window of thinking somewhat clearly. I treasured that time.

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School with Trigeminal Neuralgia: Best Practices

There were some things that helped me make it through school between the pain and side effects of the medications. There are some adjustments that I made that helped me to get through school.

Talk with your teachers

I learned that teachers were more likely to be understanding and make exceptions if I was the one who explained my condition to them, rather than my mom. In hindsight, I should have had a 504-plan set up, which would have made things easier. But since I did not, every year I would email my teachers with an explanation of what TN is, how it might affect me, and links to websites that contained information about TN. When I became older and created a blog, I wrote a generic letter that I now send out to my professors, which saves me (and them) a lot of time, and I have noticed that they actually read it because it is short and quickly gets my point across.

Maybe a handwritten letter that you copy each year and hand to your teachers will work best for you. Maybe setting up a time to meet with your teachers with a parent with you is what will suit you best. And by all means parents, know what accommodations may be available to your child! But TN kids – being a self-advocate means that you get to tell your story the way YOU want it to be heard. You know your needs, and you know what you want people to understand. It is hard to speak up for yourself, but it has also helped me in so many different areas of my life!

Plan your most difficult classes around your medication schedule

The beginning of my twelfth-grade year, I had calculus first thing in the morning. As I have mentioned above, this was not a good time for me. At this point, I was taking medication at night and in the morning. It was my most sleepy time of day. My teacher didn’t understand and was frustrated that I was falling asleep in her class. She thought I didn’t care. If only she realized that I was way more frustrated than she was! At the end of the first quarter, she walked around the class and showed us our grades. I got a C-. I had never scored that low before. She told me, “If you just stayed awake in class, you would do well.” I was embarrassed, frustrated, and ashamed. I remember my cheeks burning and wanting to cry, not because of the low grade, but because she made me feel guilty for something I couldn’t control.

That day, I talked to my mom about switching my math class and study hall. Originally, I had study hall at the end of the day. Since seniors were allowed to leave school early, I could leave the school after my eight-period class. However, doing well in school was a much bigger priority! We switched around my schedule, moving study hall to the morning (where I could catch some extra sleep or go into school late without missing anything), and math to the last period of the day.

Guess what? The next quarter, my grade moved to a B! And as the year progressed, my grades only got higher and higher. Was I ever an A student in math? Absolutely not! But I did so much better! Having the flexibility to change around my schedule was so important my senior year. In my early high school years, I was in a small private school that did not have this flexibility. Since everyone in the grade needed to take the same courses, I was not able to adjust my schedule. This is something to consider if you are thinking about moving to a smaller school.

Find a safe space in school

Whether it is the nurse’s office, a classroom with a supportive teacher, or the counseling office, make sure you have a place you can go where you feel understood, safe, and free to decompress. I always found this space by getting to know my teachers and sharing my story. My safe space was the library. I knew that if I was having a bad day, I could find comfort in that quiet room. I could hide in the corner and not worry about wearing the “happy mask” that I wore around school all day, when the “pain mast” was hidden underneath.

Ellie performing.  Trigeminal Neuralgia and School
Doing what she loves – performing!

Confide in a friend

I was always very secretive about my TN, until I met a friend who had a difficult medical struggle. He had attended the other high school in our district and was bullied because he had Tourette’s syndrome. His symptoms were very severe, so much so that he had a brain surgery that was experimental for his condition, and therefore wasn’t covered by insurance. The community helped to raise funds to help pay for the surgery, and he was even featured on Good Morning America because the surgery was successful! I was part of the community service club at my school, who raised funds to donate to his surgery. He ended up coming to our high school for his senior year, and we had a little celebration meet-and-greet at the beginning of the year, where we became friends.

When I was out of school for days and weeks at a time, he was the only friend I was completely open with. I told my other friends that I had “jaw pain,” but he could say (and spell) trigeminal neuralgia. When I told him about my meds, he understood the side effects because he lived them. We would joke that we were always told at school to “say no to drugs,” but both of our medicine cabinets were full of them! When he had a seizure at school one day, I remember texting him all night, reassuring him that the bullying that had happened in his last school would not happen at this one. When I would miss school, he would send me daily texts letting me know what I missed and cheering me up.

I know that I was lucky to have found a friend who really, truly understood. But looking back, I should have been more open with all of my friends. I should have told them ways that they could be there for me. I wouldn’t have had to hide my pain or sneak my medications because I was embarrassed and didn’t want to go into the details. Not every friend is going to be great. Some people just don’t know how to be there for you in a difficult situation. But there are some that can and will. You just have to give them the chance.

Join a club

This may not be an option for everyone, but knowing that I could help out in drama club or volunteer with “Interact” on the weekends gave me something to look forward to when school was a struggle. It is also where I made some great friends. Doing theatre was hard, because when I would miss school, rehearsals would still continue. I remember my mom sneaking me in through a side door, since you weren’t supposed to go to afterschool activities if you didn’t make it to school (my mom is totally cool, and realized that my circumstances were not the same as kids just trying to get out of class). Find something that interests you and go for it!

Never be embarrassed to go for extra help

I went to extra help whenever it was available and I was well enough to go. Was it fun? No. But it did more than helping me prepare for a test. It showed my teachers that I cared, and when it came time for grading, and even leniency for homework assignments, they excused a lot because they knew that I was truly giving it my best effort. Extra help also gives you the opportunity to have a conversation about your learning. The teacher will explain a topic in four different ways, instead of the two she will explain in class. If you’re meeting with a tutor, that person will break things down into steps you can understand and remember. Never be afraid to go to extra help – it will only help you in the end.

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Ellie graduating Summa Cum Laude.  Trigeminal Neuralgia and School.
Graduation Day

The Good Side of Trigeminal Neuralgia?

Being a TN kid is not easy. Everyone has to work hard in school to do well, and TN kids have to work even harder. But there is a good side. I’m not kidding!

It made me a hard worker

My brothers had an easy time in high school, and I struggled. When we went to college, my brothers couldn’t slide by like in high school. I was already used to working hard, so the transition to college was much easier! And guess what? I graduated college with a 3.94 GPA! You can go to college with TN and do well! In fact, I think that having TN made me a better student in college.

You will have an amazing college application essay

Your experience is so unique, and it will be sure to help you stand out in the crowd of college hopefuls.

You can speak up for yourself

When my friends all struggled to speak up for themselves in college, I had no problems because I had experienced it in middle school in high school. The nice thing was, as I was learning those skills, I had my parents to guide me, which made the situations easier. My friends did not have this luxury. Be proud that you can speak up for yourself!

You can apply to a wide range of scholarships

Form scholarships about chronic pain to those about overcoming a challenge, it is not difficult to find a way to relate your TN experience to a scholarship prompt. Apply away! You never know what you may receive!

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So, fellow TN kid, as someone who has gone through it and has come out the other side, I am here to tell you that you CAN do this! You only get to be a kid once, so do your best to enjoy as much as you can. Remember that everyone is dealing with something difficult in their lives, and while TN is so difficult to deal with, everyone is struggling for one reason or another to get through school. Just do the best you can and remember that you are not in this alone. I’m rooting for you, and so are the other TN kids, and TN kid-turned adults! You got this!

❤ Ellie

Trigeminal Neuralgia, the Dentist, and Kids: Best Practices

I am embarrassed to say how long we went with our daughter NOT going to the dentist once TN set in.  She had been to the dentist only 3 weeks prior to her first attack, which was one of the things that helped us rule out dental problems from nearly Day 1.  Clear, healthy x-rays had just been taken on a child who had never had a cavity, so our dentist told us she didn’t know what was going on with our girl, but she knew it wasn’t dental.

Mugging for Mom after her first dental appointment in over 2 years.

As anyone with TN or Facial Pain will tell you, the mouth and teeth can be a terrible trigger for the pain.  The idea of brushing teeth became filled with trepidation and tears, and going to the dentist was simply too much for us to think about.  I’m not saying we were right in that.  Not at all.  But that’s where we were.

We didn’t return to the dentist for 2 years.  I know, I KNOW this was not good.  I also know, we are not at all alone in this.

Complete avoidance is not a healthy or realistic strategy, long term, for our kids. However, we do need to approach dental work differently than the average dental patient.  So, this past weekend when seven of us TN Mamas attended the national FPA conference, three of us sought out Dr. Donald Nixdorf, DDS, Associate Professor at the University of Minnesota in the Division of TMD & Orofacial Pain, Adjunct and Assistant Professor in the Department of Neurology, and a member of the TNA Medical Advisory Board (wow, that’s a mouthful).

Trigeminal Neuralgia and the Dentist: Ask the Expert

We asked a fairly straight-forward question: How do we best approach dental appointments for our TNKids, to make it the best possible experience.  Following is an outline of Dr. Nixdorf’s response to our lunchtime question.  On our Resource Documents Page is also an article, Ways to Help Reduce Pain Associated with Dental Treatment, that he wrote with Thiago Nascimento for the Facial Pain Association outlining these recommendations.  This will give you something a little more authoritative than our blog posting to print and take to your dentist!

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Trigeminal Neuralgia and the Dentist: Best Practices

1. Before the Appointment:

  • Minimize Anxiety and Stress beforehand – anxiety and stress heighten our sensitivity to pain, so just doing some talking about what you are doing to minimize any problems may help your child. Also (my words) giving them some control and input over how this happens and how to keep their anxiety low is good.  We’ve taken a favorite stuffed animal, pillow and blanket to doctor appointments with no shame.
  • While we do not want to put our kids on high levels of their meds unnecessarily, it may be helpful to do a higher than usual dosage for a period of time prior to a planned procedure so you are starting from a point of well-controlled pain.  Discuss this with your doctor to work out dosage and time period.
  • Work with your dentist to schedule procedures at times of well-controlled pain.
  • Ask: Does this work really need to be done? We are not suggesting that you accuse your dentist of trying to do unneeded procedures here.  What we are suggesting is that while this procedure may be the best course of treatment for a normal patient, something less invasive and traumatizing to the nerve and tissue may be a perfectly fine substitute, and actually better for your child given his/her pain struggles. Don’t be afraid to ask your dentist to take that into consideration.
  • Do pre-emptive pain reduction including a local anesthetic such as topical lidocaine. Don’t be afraid to be generous with this stuff, you can even swallow a LOT of it (I believe his phrasing was ‘buckets’) without adverse reactions – breathing it is not good, and that is the risk, so gel topical is best.

2. Before, During the Procedure, and Through Healing

  • Anti-inflammatories such as NSAIDs (e.g. Ibuprofen) may be taken with your doctor’s supervision to keep down inflammation, which can be a trigger for facial pain. These should be started **at least a day before** the procedure in order to be effective in the system for the procedure. These should be taken at the anti-inflammatory dosage (not pain relief dosage), which for an adult is 3x200MG, 4x/day for Ibuprofen – ASK YOUR DOCTOR for the pediatric dosage for your child. These NSAIDs should be continued through the day of the procedure and the full healing period! For example, for a simple filling this may be about 5 days after the procedure, for something like a root canal you are talking more like 7-10 days after. IMPORTANT NOTE: anti-inflammatories inhibit bone healing, so if you are doing something that will require bone healing, talk to the doctor.
  • Long Acting Opiods – I know, we all worry, a lot, about opioids for our kids, Me too.  But when used properly, and for dental work ONLY for a short period of time from just before (to be effective in the system), day of procedure, through the healing period, it is exactly what they are good for.  This should be done under the supervision of the doctor, and ONLY for the period just before the procedure through the healing of the procedure to prevent the inflammation and irritation of the nerve.  The idea is to reduce dental procedure-related pain because this pain is thought to worsen the TN pain.  Therefore, used properly they can really help.

3. Consider Conscious Sedation

**along with pain prevention and anti-inflammatory** to reduce anxiety.  Nitrous oxide gas is great for this because it has good anxiety reducing properties, mild pain relieving properties, and it can be titrated, meaning turned on and off.

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Kids with Trigeminal Neuralgia: Braces?

I had to ask this since our dentist is always encouraging us to take KatieRose to the orthodontist for a consult and I am SOOO hesitant.  I know at least one of our TNKids had to have braces removed in the Emergency Room during very bad pain flare that led to an MRI.

So, from that discussion, comes this:

First, if you child’s pain is not diagnosed and well-controlled, his short answer was “DON’T DO IT” You have too many unknowns and pain issues already, and getting braces will not make any of it better.  Your first order of business is to make sure you have a firm diagnosis and your child’s facial pain managed.

Second, if your child’s pain is diagnosed and well-controlled, then he still is very hesitant to proceed with braces in a child with TN.  His belief is that there is a very high incidence of braces being cosmetic, and cosmetic is not worth the irritation to the nerve and possible complications.

My own note on braces:

At this point we were being ushered out of lunch by those who run the schedule so we couldn’t continue. However, my 2 cents (not from Dr. Nixdorf) as a final thought on braces is if you and your child really want to or need to proceed with some sort of braces, consider a removable retainer or something such as Invisalign. Then if your child has a flare, or needs to have something done medically, you will be able to just remove it temporarily.

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I have done my best to honestly represent Dr. Nixdorf’s input here, and I hope it is helpful to you all.

It’s Not Just Kids Being Kids… Recreational Drug and Alcohol Use

This may be a little jarring to those of you with younger TNKids, but we are in contact with families of kids up to age 20, and not so out of the realm of possibility at all for older teens.  It may also seem inconceivable given how poorly your child is doing and the fact that you are with them all the time.  However, if your child’s pain is managed with medications for periods of time, this may come up.

DISCLAIMER:  First, we are not here to tell you how to parent.  That’s not our place, or the purpose of this site, and we aren’t trying to do so.  By posting this, we are not making a statement either way in regard to allowing or not allowing your child to use alcohol and recreational drugs.  We may or may not have strong feelings on this individually, and as the 4 of us TNMamas together.  HOWEVER, it doesn’t matter one way or the other for the purpose of this post.  Any comments degrading other parents will not be approved for post.

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Especially those of you with older teen TNKids may have kids who have experimented with alcohol and drugs.  This may be with or without your knowledge and/or permission.  If you have a child who is not wrestling with the TN beast, and all the medical issues that come along with that, this leads to family discussions, rules, policies, maybe punishments, whatever.  However, if your child is a TNKid, there are more issues involved that need to be considered, and that is what we are going to discuss here.

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Greater Risks with Recreational Drug & Alcohol Use for TNKids

Drug interactions:

First, you and your child need to understand the very real and extremely serious dangers of combining the medication they are on for Trigeminal Neuralgia with alcohol and recreational drugs.  What seems like an evening of ‘teenage fun’ or ‘rebellion’ can lead to reactions with long term consequences and even death.  Did you read that?  This is NOT something to be messed with.

According to drugs.com here one of the most common TN drugs, Carbemazepine/Tegretol, when combined with alcohol leads to “increase nervous system side effects such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with carbamazepine.”

It says basically the same thing for many, if not all of the medications prescribed for Trigeminal Neuralgia.  Ingesting alcohol while on these medications worsens the side effects of the medications, including:  dizziness, confusion, insomnia, headache, visual disturbance, loss of motor coordination, etc.  This also includes the rare but serious side effects such as: chest pain, difficulty breathing and seizure.

This is true and even more unpredictable with recreational drug use.

According to the National Institutes of Health, as much at 25% of ER visits have drug/alcohol interaction as a contributing factor.  Linked here.

One evening of poor judgment can be very, very bad when combined with these medications.  Talk to your child about this.  Impress on them the seriousness of the consequences of this decision.

Another note:  Depending on what prescription meds your child is taking, these interactions can be true of things as innocuous as cough syrup.  So you need to be considering side effects and interactions with even the simplest of other medications.  We recommend asking your prescribing physician about safe over-the-counter options for any needs you may have.

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Greater Likelihood of Hospital Screening

When your child is wrestling with Trigeminal Neuralgia, the truth is that they will be seeing doctors and having tests, including blood tests, more than the average young person.  Much more.  And it will at times be very unpredictable.

That means that if your child thinks they can sneak one night and no one will know?  The odds are much higher for your child that someone will find out.  If you find yourself in the ER or at the doctor’s office the next day  – or even for some things (such as cannabis) up to 30 days later – they may wind up with a positive drug screen.

This can wind up being a very big mess.

First, pain patients often run into problems with being suspected of being drug seekers.  This can cause them to be turned away from ERs, pain management offices, or doctors who are in fear of feeding an addiction instead of treating a patient.  (Agree with it or not, it happens.)  If your child shows up positive for recreational drugs in their system, or with the morning after evidence of underage drinking and partying last night, this will wave red flags in front of medical professionals.   Some systems have very strict rules about this, and even if they still want to help you, medical professionals will face problems with doing so.  You don’t want to find yourself in a position where hospital systems refuse to give your child the help they need, or delay it substantially.

Second, with repeated visits to the ER with a minor on multiple medications, social services have been called on at least a couple of our families even without any drug or alcohol use.  Because these families were doing nothing wrong and were following proscribed usage of their medications – and nothing else – these situations were resolved as well you could hope for (though it is infuriating and a subject for another post!).  HOWEVER, if you show up in the ER for help and your child is shown to be “self-medicating” this could be an entirely different battle with a much worse outcome.

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Pain Patients have Greater Likelihood of Addiction Struggles

The last thing I’m going to mention is the longer term risks of recreational drug and alcohol use for our fighters.  See one study here.

The sad truth is, as chronic pain patients, our kids have a greater likelihood of struggling with addiction.   When I watched my daughter in the excruciating pain of TN, I could easily see how this could happen.  Who wouldn’t want an escape from that?  But what may just seem like a momentary escape can lead to a long term battle that snowballs the issues listed above.  As parents, we need to be aware of this risk, and fighting this battle for and with them.  We should also be talking to our kids about the long term ramifications of a momentary decision.

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It may seem like ‘no big deal’ or ‘normal teen rebellion’ to many, but for our kids (and even in some ways adults in this battle) it carries a much greater risk.  Talk to your kids.  Talk to them even if – and maybe best if – it can’t possibly be an issue at this point. Teach them about the dangers, risks and consequences they face beyond what most kids face.

Hugs to you families.  Fight on.

The Power of Not Being Alone

We have had an amazing experience this week.  We have a secret little corner of Facebook for parents of TN patients.  We share info, ask questions, and sometimes vent at the basic wrong-ness of having a child fighting this beast.

A couple of weeks ago, one of the families posted that they would be in CA for a doctor’s appointment with one of the doctors a number of us have traveled to see, would anyone else happen to be there at the same time?  Astonishingly, 7 families would be there about the same time, with ~40 hours of overlap.

So coordinating went into overdrive, and literal spreadsheets of schedules were made.  We unfortunately were unable to get all 7 kids together at the same time. But we did get 6 at one time, and then swap one child out and another in, and have 6 another time.

If you are a parent of a TN Kid, you need to talk to other parents of TN kids.  I can not tell you how beneficial this can be.  The first night when we got 6 families together, we were in an Italian cafe, and we toasted not being alone, and we shut the place down together that night.  It is powerful to not be alone.  To say “the pain” to someone, have them reply “I know.”  And they really do.  Really.  They’re not comparing it to that bad headache they had last week.  To meet others who are tearing up – Moms and Dads – because they have been fighting the same battle with their children.

You are not alone.

And you know what?  Your child needs to connect with other children with TN.  Because THEY ARE NOT ALONE.  They are not the only one.  They are not weird.  (Well, ok, they may be weird.  We have plenty of the best kinds of weird running around.  But it’s not because of the TN!)

It can be awkward: texting, skyping, whatever, with far flung other kids your child doesn’t know.  All of the kids who have done so have been hesitant at first.  Most of the actual “texting nights” have been precipitated by one of the kids being in a particularly bad place, motivating the other kids to throw caution to the wind and jump in.  And every one of them have said it was really awesome, and not nearly as awkward as they were worried it would be by the end.

They are not alone.

Don’t be alone in your fight.  If you want to get more connected with other TN families, you can email us at TNKidsRock@gmail.com.

The Pain Journal

I’m so sorry to be making this post.  I’ve stopped several times and had to walk away.  It’s hard to talk about the reality of the pain your child is going through.  At times you develop a clinical distance from the emotional part of it, because you have to in order to get through the conversations you have to get through.  But other times, well, that’s just impossible.  This is a very, very hard topic.  Yet it is also very important.  So we will discuss it.

One of the things we recommend is keeping a pain journal. If your child is younger, this will be you, asking questions and writing things down. If your child is older – or as your child gets older – this changes to them tracking this information.

The information in your journal is an extremely helpful diagnostic tool. When your child has pain like this, you think you will never forget, and in a way that is true. But after months of dealing with TN, things do start to run together.  Details get lost in the pile of details you are having to stay on top of every day.  So it is truly important to write details of the pain down.

The pain journal will allow you to go back and analyze things like: How did she react to that medication? or Is this action becoming a consistent trigger? How long has this new pain been involved in attacks? How often does she get attacks in the middle of the night? Is his pain more stabbing or throbbing or boring? Are these attacks getting longer? Or more frequent?

This information is very valuable to your doctors, and the more detail you are able to give a good doctor, the better diagnosis you will get. For several of us, our (or our child’s) ability to specifically describe the pain expanded the exploration during brain surgery, and caught compressions on other nerves that may not have been caught without that information.

Your doctor may or may not want to actually review your pain journal. However, I strongly recommend not only taking it to the appointment and referring to it, but reviewing it before your appointment and marking significant changes and/or anything that sparks questions for you.

So – what should be included in the pain journal?

The basics should always be included:

  • The date
  • What time did pain start and end?
  • What type of pain is it? (stabbing, throbbing, etc.)
  • Where was the pain located? (The more specific the better.  Does “ear” mean in front of the ear?  Or inside the ear?)
  • Is the pain constant? Or are there breaks?  Or are there both components?
  • Where was it on a scale of 1-10? (You will get this question A LOT.)
  • Was there any action immediately prior to onset that could be a trigger?

It’s also good to include information such as:

  • The current regular medication dosage. I would always note the day that we changed dosages and highlight it.  That would make it easier to find later.
  • Any medication taken for breakthrough pain, and dosage.
  • Whether breakthrough medication helped or not.
  • Things that may help you narrow down triggers: location, weather, eating/drinking, etc.

As far as what you should use, it can be as simple as a pocket –sized notebook, that’s all I used.  It fits in the purse, it goes everywhere with us.  Or as sophisticated as it helps you to make it.  The biggest thing is for it to be something you will have with you, and you (or your child) will use.

On the Resource Documents page is a downloadable spreadsheet called Jen’s Pain Journal, which one of our dear TN Mama friends developed for her teen daughter to use.  With it, she need only fill in blanks, and circle the correct information.  During pain, the quicker and simpler, the better.

When they are experiencing pain, it is sometimes very hard to impossible for our kids to communicate details clearly.  There were times I would just have to wait and cry through it with her, then once it was finished – or at least less – she would go through and answer questions for me.  Sometimes I would make notes of body language, and ask her about it later.  When she was actively trying to claw through her mattress and sobbing, I didn’t have to ask where she was on the scale.

It became a weird kind of sixth sense, to be able to look at her body language and mentally guess pretty close what level her pain was at.  For my daughter (and yours may be different, so don’t necessarily go by this) talking, school work, and life as normal could continue up through a “3” pretty easily.  Quiet and eyes closed happened at about “4”.  Fidgeting started around “6”.  Tears around “7”.  And I don’t like talking about the top of the scale, which seems to me to shoot past “10”.  Her scale also changed over time as she developed a high tolerance for pain.  I guarantee you that her “2” is not my “2”.

This can be a hard thing to do.  Who watches their kid in pain and takes notes for goodness sake?!  I know. Really.  At the same time, a good neurologist and neurosurgeon are going to be really helped by the details.  That part will be entirely worth it.  Once we started going to doctor after doctor, and they would ask so many questions about the pain, my girl became very cooperative in making the notes.  If I didn’t ask the right question, she would tell me about some new piece needed to be noted.

Again, if you are reading this, I’m sorry.  You’re probably doing so because you or someone you love needs this information.  It’s not an easy place to be.  We wish you all the best in your journey.

My Child has Trigeminal Neuralgia, Now What?

Let’s talk about the first steps you need to take now that you believe your child may have Trigeminal Neuralgia.   Thank you to Stacie for developing the initial list on this!  I’ve added and augmented to create this post.

  1. Start keeping a Pain Journal

There is an entire post dedicated to this, so I won’t go into a whole lot of detail here.  However, it is important to get started on this.  The details of how and when the pain starts, the details of how it feels during, whether it’s constant or your child gets “attacks”, if the pain is over the eye, in the eye, in front of the ear or in the ear, etc. will be very important to a good diagnostician.  Grab any notebook, or the downloadable pain journal sheets we have posted, and start tracking the details of your child’s pain.

  1. See a Pediatric Neurologist

This is very possibly who diagnosed your child, but if not, this is where to start.  A neurologist is the one who should really go through your child’s symptoms and determine that it is in fact Trigeminal Neuralgia.  S/he should also do a full neurological evaluation to be sure there are not other symptoms that should be discussed.  These tests are, for the most part, noninvasive and include a lot of “does this feel the same as this” and “walk this way” and “stand on one foot” kinds of things.

Your Pediatric Neurologist can be your best friend.  If you can successfully partner together and maintain regular, clear communication the two of you can determine the best medication(s) to manage your child’s pain.

That being said… Pediatric Neurologists are not trained the same as Adult Neurologists.  I don’t mean this s a criticism, it’s just a reality that needs to be recognized when you are dealing with an “adult” condition.  They have almost never had the need to be well versed in conditions that are rare in the first place, and also considered by text books to be an “over age 50” affliction.  If you think about it, it wouldn’t make a whole lot of sense logically for them to spend all their time keeping up on conditions they will encounter so rarely, if at all.

You may think it would be better to just go to a regular adult neurologist, and you may be right.  However, in our experience it is very, very difficult, if not impossible, to find an adult neurologist who is willing to take on a pediatric patient.  So, in reality, we find the best situations are where parent and pediatric neurologist are working together to actively understand their child/patient’s situation, and find the best options for treatment.

  1. Get the right MRI.

It is very likely that one of the first things your Peds Neuro is going to want to do once they determine your child’s pain seems like Trigeminal Neuralgia is an MRI.  This will look at the overall brain health and rule out certain possible causes of TN, such as tumor pressing on the nerve.  Trigeminal Neuralgia is also a symptom, and sometimes an early symptom of Multiple Sclerosis.   An MRI cannot definitively determine MS, but can give an indication of whether further investigation in this direction is warranted.

However, we have run into a number of cases – including among us! – where the wrong, or at least not the best, MRI is ordered.  Following is a quote from our neurosurgeon in the MRI to get:

Every center calls it a different name. It also varies according to machine manufacturer. At UCI we call it a ‘with & without contrast cranial nerve protocol MR’. It includes general FLAIR & T2 non contrast scans to rule out Multiple Sclerosis. It includes SPGR contrast tri-planar thin cut (1mm) and magnified posterior fossa images. Most importantly it included T2 volumetric acquisitions with 0.8mm slice thickness in all three planes. Depending on the machine manufacturer, these latter series can go by the name of CISS or FIESTA. This last series in my opinion is the most important and informative for identifying vascular contact.

We will have another post on MRI results and the complicated discussion that can be.  For now, let’s leave it here.

  1. Start on anti-seizure medications.

The first line of attack as far as medication goes for Trigeminal Neuralgia are anti-seizure medications, the same meds that are given to epilepsy patients.  These have been found to be most effective for those suffering from classic Trigeminal Neuralgia.  These medications include:

  • Tegretol (Carbemazepine)
  • Trileptal (Oxcarbazepine)– a “brother” of Tegretol shown to have fewer side effects for many
  • Aptiom/Zebinix/Exalief (Eslicarbazepine) – the most recent derivation of Tegretol, hopefully even better than Trileptal when it comes to side effects.
  • Gabapentin (Neurontin) – while the above work to stop the Trigeminal Nerve from being triggered in the first place, Gabapentin works to shut down a trigger if it does occur. For this reason, Gabapentin is often used in combination with one of the above, if the pain is not as well managed with just the one medication.

One of these medications may be prescribed on the first visit to the neurologist, even before the MRI is ordered.  (However, we would recommend asking for both the prescription and the order for the MRI as soon as “Trigeminal Neuralgia” is on the table.)  Having the pain respond well to these medications is often used a s diagnostic indicator for TN: if several days after beginning the medication your child’s pain is measurably reduced, it is further proof you really are dealing with Trigeminal Neuralgia.  However, there is a lot of variation in response to medications, so not responding doesn’t necessarily mean you are not dealing with Trigeminal Neuralgia.

An important note on these medications:  These medications are made to work when being consistently taken, and take 3 to 5 days to build up in the body and effective at the dosage.  Therefore, you need to take them on a regular schedule, and not expect for them to start helping for several days.  This also means that taking a dose at the onset of pain will not help that pain.  (There is a fast-acting Tegretol pill, and that is a different situation.)  It also means if the pain goes away, the medication is working and you should stay on it, unless your doctor is in agreement on attempting to wean off or to a lower dosage.  Weaning off should be done carefully, and under a doctor’s supervision as the sudden stopping of them can actually cause seizures and other nasty effects.

Also, again just from our experience and WE ARE NOT MEDICAL PROFESSIONALS, we have found that not throwing a number of different medications at this at one time is very helpful in determining what is actually working and not.  Plus, the drug interactions start stacking up and it can quickly get very complicated when you just need an over the counter cough medicine one day.  Over time these kids may wind up needing drug cocktails of multiple medications, but the slower the progression of that, the easier your life will be.

Note on Steroids:  It is not unusual for a short dose steroid pack to be recommended.  Trigeminal Neuralgia, while not at its root caused by inflammation, can be aggravated by inflammation of the nerve due to some other health issue.  Some kids find that an “increased flare time” can be helped somewhat by a short-term steroid, if some form of inflammation of the nerve is causing their pain to spike or occur more frequently.  Even post-surgery several of our kids had their TN pain kick up, only to find later they were fighting a cold, bronchitis, or ear infection that also happened to inflame their damaged/healing nerve.  The steroids may be worth a shot.

We will say more about life on these meds in another post.

  1. Keep your child’s overall health and immunity functioning well.

As our neurosurgeon has explained to us, damaged nerves can be affected by Sickness, Stress, and Sleepiness.  Therefore, it is our goal to minimize those things in our children to avoid making a tough situation even worse.  This means doing those “healthy lifestyle” things that were always good suggestions before, but maybe allowed to let slide more than you want to now.  So keep in mind things like:

A solid 8 hours of sleep a night.  Or more.  Pain, medications, and the upheaval your child is going through right now take a toll, so 8 hours is a guideline.  In our (Megs) house, we made sure our girl got to sleep at a reasonable hour, and let her naturally wake up in the morning.  I realize not everyone’s life allows for that, but seriously look at your schedule and make sure enough sleep is gotten at night.  Also, the medications, especially at first, tend to really cause exhaustion.  So don’t be surprised if LONG nights sleep and naps are needed.

Nutrition is important.  On high pain days we would often allow treats and not be strict at meal time.  And that’s totally understandable.  When your child just spent hours in intense pain, how do you say no to chocolate dessert?  However, overall, really try to keep them on a balanced diet with good vitamin-rich foods, and add a multi-vitamin if they are not on one already.  Their bodies are carrying them through a lot and need the strength to do so.

Avoid exposure to communicable sickness.  A bit of a cold can really amp up their pain because of the aforementioned inflammation issues, and complicate their TN in ways you won’t anticipate.  Our girl had the worst time with a congested cold because breathing over her teeth was triggering her pain, but she couldn’t breathe through her nose.  While your child still has to have a life, and still has to see friends and enjoy themselves whenever they can (that’s a topic for another post!), be conscious of the ramifications of those decisions and use wisdom.

Avoid excessive stress.  I hate even listing this one, because we all know if you are wrestling TN, stress has moved right into your house and camped out in the living room.  However, just keep this is mind.  An overload of stress can cause damaged nerves to fire up, causing pain.  So whatever helps your child with stress relief, try to build it in to life.  A little exercise if s/he is up to it?  Curling up on the couch and watching a movie with you?  A good back rub some time?  Listening to their favorite music?  If you notice a higher level of stress coming from them, try to learn their stress relief needs and suggest it.

You may think it’s going to be really hard to get your child to go along with these things, and I’m sure there will be days it’s a real pain.  We found though, that when we framed the issue with minimizing TN attacks and pain, we had a far greater cooperation.

  1. Try a variety of pain management techniques.

There are probably as many strategies for dealing with the pain as there are TN patients, so experiment.  It is pretty common for TN patients to want darkness and quiet.  Often they can’t stand to be touched.  Other possibilities are movement, vocalizing (otherwise known as moaning/yelling), heat or cold packs, etc.  At some point we will dedicate a post to a master list of things to try.

In the meantime talk to your child some time when they are not in pain about their ideas and be prepared to try it when needed.  We slowly built a standard assortment of things she wanted with her during pain.  Her favorite stuffed animal.  Her own pillow.  Super-soft blanket.  Box of tissues.  Pain journal & pen (for mom).  Moms cell phone in case we need to text/call doctor.  We literally hauled these things wherever we went – which was mostly doctor’s appointments – during the bad times.

Hopefully this will help you get started as well as you can.

Hugs to you.

How Do I Talk to My Child about their Trigeminal Neuralgia?

It is hard to give specific advice in this area because it will vary so much, not only age group to age group, but child to child.  However, we want to do our best to give you some guidance based on what we have learned in our years on this path with our kids.

  1. They need to know you are there for them.  Always reinforce that you are in this together.

We know.  WE KNOW it is too much some days.  There are times you desperately want to pretend TN doesn’t exist, and the thought of another attack makes you want to run away from home.  But your child needs to know that you are in this fight together.  They need to know that no matter how bad it gets, you will be beside them. They are not too much of a burden.  They will never be too much of a burden.  You will always fight for them and with them.

Many of us TN Mamas have had times our child hid symptoms from us, or downplayed them.  Sometimes they just don’t want to talk about TN today.  Other times symptoms are so a part of every day life, they just forget to speak up.  Some of that is perfectly normal and ok to let them do.  But you do not want your child to start hiding symptoms because they are afraid of you not being able to cope with it.  Find yourself your own support and guidance, a safe place to fall apart sometimes, then be the place it is safe for them to hurt.

Walking the TN path on their own is too much for many adult patients.  It’s far too much to let your child start taking on.  You never want them to feel they have to shoulder this on their own.

  1. Validate their pain.

Acknowledge it is real, it is big, and you don’t doubt them.  It is tough for adults to comprehend that a child can be in that much pain.  For many there can be a tendency toward minimizing it, thinking the child is exaggerating, or being overly dramatic.

One of our neurosurgeons told us that the adult, women, TN patients he has had have told him they would rather go through natural childbirth multiple times than have another TN attack.  We would never minimize the pain of childbirth, right?  And yet women who have experienced both would take childbirth over the pain of TN.  Don’t minimize the pain.  Don’t let other adults around them do it either – even if that adult is a medical professional.

Reassure them that you believe them.  It is incredibly painful.  They are so amazingly strong for going through this pain and still being the awesome child they are.

3.  Be as honest as you can about what is going on with their condition.

This is their body that is feeling this pain, and their body that has to deal with the treatments.  Be as honest as possible about what is causing their pain, as well as treatment options.

Now, I say “as honest as you can be” because depending on the age of your child, you may need to edit for their understanding and emotional maturity.  However, my recommendation as a parent – not as a professional in any field, but as a parent – is to err on the side of thoroughly answering their questions and informing them.  Taking some of the unknown and mystery out of it will help take away some of the fear, too.

Doing this requires you to understand what is going on physically with their condition, and to be able to distill that information down for them, which I understand is no small thing.  But you know your child and should do your best to give them the information they need to understand.

Also in this category is being honest and not painting  falsely rosey picture.  No promises of TN being cured because they have a few good days.  Your child will be looking to you to help understanding all that is happening to them.  They need to trust you in those moments, so be conscious of always deserving that trust.

4. Reassure them (and yourself!) that there is HOPE.

It was a hard, hard day when my (Megs) daughter heard ‘Suicide Disease’ the first time.  It was a neurosurgeon who told her it was called that.  She was only 11 years old, actively having attacks at the time, and had to ask me what ‘suicide’ meant.  We also learned later that our girl had thought that she was dying.  She couldn’t imagine she had this much pain and wasn’t.  She thought we either didn’t know, or weren’t telling her.

It can be easy to get swept up in the bad days, focused on the pain and how hard the fight is sometimes.  We have to work to keep our kids out of that pit.  We need to practice remembering the hope.  Remember:

  • We have medications that are coming out with new generations with few side effects all the time.
  • We have surgical procedures that are getting better and better success rates as technology progresses and we learn more about TN.
  • The Facial Pain Research Foundation believes they are within a decade of a cure.
  • Some of the most awesome people I have ever met, I have met through this journey.

It is no little job before you, so please don’t take any of what is written here to say that this is easy, or that you have to be perfect in all of this.  We are sharing things we have learned along they way – we are not saying we were great at it every day.  Some days you will do better at this than others.  That’s ok.

Love, Hugs & Hope to you.