Trigeminal Neuralgia – Officially an Underlying Diagnosis for MBHM

It has taken me a while to gather my thoughts enough to sit down and write this. I feel I should dive in and just say it, and then ramble about after. I also feel that just saying it here makes it final and real, and perhaps that is why I have been putting it off.

On November 3rd, my neurologist declared that given my pain history and my response to Oxcarbazepine, that Atypical Trigeminal Neuralgia (TN2) is an underlying cause for my Monster Migraine. The TN2 continually triggers migraine symptoms, and everything keeps cycling, and this is why nothing has been successful.

This diagnosis means a few things. First, it means that I have a reason for my pain. Second, it means that I have a community of sufferers to join and learn from. Third, it means that I have a disease that currently has no cure. Fourth, it means that there are new treatment options open to me that, if successful, may lead to a better quality of life than I am currently living.

And, lastly, it means that I have gone from hoping that my pain will one day end to realizing that my pain is something I will have to manage for the rest of my life.

That last thing has been difficult to process. I have cried. I have been angry. I have acted rashly, or hyper-rationally… or something. I have turned to treatment options I have previously refused because I saw them as too painful or too pointless. I began acupuncture this past Friday and am going to see my acupuncturist twice a week until I see some results. I am going to turn to outside-the-box pain medications.

I have launched my own, personal war on Trigeminal Neuralgia.

I have curled into a ball and hidden under blankets.

I have talked to friends.

I have avoided friends.

I have felt relief.

I started a secret self care group on Facebook for when I have feelings and I need some kind of support. I started writing in a journal. I started falling apart. I started getting my shit together.

I definitely started forgiving myself for some things.

I have a disease, and that makes my head hurt all of the time and fires up ye aulde migraine making machine constantly. Fuels it. Makes it glow red hot.

Cool. So there is that.

Oxcarbazepine, Botox, & The Cefaly- Which is Working?

My pain levels are wonky to be sure. One day I’m a 5 out of 10 on the pain scale, the next three days I’m a solid 9. Then I’ll have a few 6-7 days. What I do know is that this is a vast improvement in the quality of my life over the period between September, 2014 an August 6th, 2015. I am in no way complaining.

However, I would like to know what is making the magic happen. I’ve been using the Cefaly device for a while now. I’ve been on a larger dose of Oxcarbazepine (or Trileptal, used to treat Trigeminal Neuralgia) for several weeks. And I’m right in the sweet spot of my most recent Botox treatment where the Botox flu and droopy-eyes are gone, and it has not yet worn off.

This is the problem with chronic condition. We’re so eager to try everything that we just want to do it all at once, which makes it hard to determine what is actually working. That leads to being on tons of medications and afraid to stop even just one.

ALL OF THE PILLS! ALL OF THE WEIRD TREATMENTS! GIMME!

Really, I’ll do anything to feel less pain, but it sucks not knowing which thing to credit for better days!

Trigeminal Neuralgia & a Better Day

I woke at 5:30 this morning. As always, I stayed very still as consciousness slipped into my body. As always, I waited for the pain to wake up and spread through my head like a hot poker. The pain wakes up 1-2 minutes after I do. Some miracle of body chemistry keeps me from feeling anything for a moment or so. This moment is both my favourite and most hated time of day. For a moment I am pain free. For a moment I am terrified that the pain will start and be worse than it has been before. For a moment… I am frozen.

This morning, as I waited for the pain to burn through me, I thought about how my pain has aged me. I thought about the bags under my eyes. I thought about my skin and my hair that falls out in clumps. I thought about the weight all of the stress and medication have caused me to gain. Then the pain hit, starting from my left eye and radiating outward, across my forehead and scalp, down my neck, into my shoulders. It’s an evil feeling. It’s like being afraid of the bogeyman, arm hairs on end, knowing he’s real but also knowing no one can see him.

But this morning my bogeyman was less frightening.

It has been approximately 10 months since I experienced anything close to a decent pain-level day. It has been exactly one month since I began taking medication intended to rule out Trigeminal Neuralgia (TN). Today, my pain level is a 6. This past Thursday, I experienced a level 5 pain day.

I can’t express how amazing this is.

My neurologist was not able to rule out type 2 TN at our consultation last month. Her only solution was to put me on the medication most commonly used to treat TN, Oxcarbazepine (OXC) and  wait for improvement. OXC, also known as Trileptal, is an anti-seizure medication. My dosage started at 300 mg per day and was then increased to 600 mg per day two weeks later.

Granted, I received a Botox treatment the same day I began taking the medication. It is highly possible that the Botox is the reason for my random better pain level days. Two good days out of an 8-10 month period is not a trend. It is an anomaly.

A very welcome anomaly.

Having a better day, not a good day, but a better day makes me want to accomplish things. Unfortunately, the best way for me to keep my Monster Migraine tamed is to rest and avoid over-exerting myself. A better day merely means a more restful day.

A very welcome anomaly.

The “Suicide Disease” – And Why I Hope I Have It

Last night I read this article about a woman named Amanda Young who lives with horrible, unthinkable, daily pain, and I got excited. Amanda Young has Trigeminal Neuralgia (TN) and her symptoms sound very similar to my symptoms.

According to the National Institute of Neurological Disorders and Stroke, Trigeminal Neuralgia is a rare condition that typically affects adults over 50, and in younger adults, is usually only associated with MS. It’s commonly misdiagnosed as other conditions and doesn’t show up under MRIs without certain protocols.

What is Trigeminal Neuralgia?

The trigeminal nerve is the fifth cranial nerve and it helps you do things like chew. If you follow my blog, you might recognize this nerve from my previous posts about the Cefaly migraine treatment device. It’s located in front of the ear, and branches out into three sections. One section reaches towards your eye. The other reaches towards your nose, and the last reaches into your mouth and jaw. You have two trigeminal nerves, one on each side of your face.

When this nerve becomes compressed in any way, or the myelin sheath around the nerve degenerates, it can cause a person to experience intermittent bouts of shocking, searing pain that lasts from a few seconds to a few hours. These episodes can happen hundreds of times a day. It is less common, but still very painful, that the individual will experience constant pain at lower levels. These two types of pain can occur independently or together. And that, my friends, is Trigiminal Neuralgia.

TN is also called tic douloureux,  and was unlovingly coined the “Suicide Disease” in the early 1900s by Dr. Harvey Cushing… don’t confuse this with Cushing’s disease. Same doctor, different condition.

TN is so painful that it makes you want to die.

Is Trigeminal Neuralgia Treatable?

This is where I stop discussing facts and start doling out some hope. There are treatments for TN. The problem with TN is that it’s super duper painful and that it looks like so many other conditions. Doctors aren’t looking for it, especially not in younger people. If you don’t know about TN, and your doctor isn’t ruling it out, then you won’t receive proper treatment.

However, if you know about TN and you ask your doctor about TN… and TN is not ruled out as the cause of your pain, the door to new treatments just opened up.

TN has treatment options that range from medications to surgery. Some of the medications are very similar, if not the same, as medications used to treat chronic migraine and cluster headaches.

See? I told you I would say some hopeful things! It’s not curable, but it is treatable.

Why I Hope I Have Trigeminal Neuralgia

It’s really complicated. For the past three years of my life I’ve lived in constant pain, been subjected to hundreds of treatments, thousands of needles, and countless hours of medical and psychological appointments. I’ve taken medications that tear up my body, mess with my mind, and don’t really work. I’ve spent many days over the past two years wishing I didn’t exist. My life has been ruined by what I refer to as my Monster Migraine.

In all of that time I have never had a name for my condition. I’ve never had a cause for my condition. I’ve had multiple diagnoses that surround headache/migraine conditions that don’t fully fit the array of symptoms I have. I have met people who are like me, living with this constant brain war, but I don’t have a community of people who understand my specific issue. I lump myself in with the spoonies of the world, the chronic pain sufferers of the world… but I still haven’t found that system of support and validation that people living with pain really need.

Having a name for my condition means access to treatments, foundations, and people who understand what I’m living with.

How I’ll Talk to My Doctor

It gets tricky when you’re dealing with conditions that are often misdiagnosed as other things. Doctors don’t like being wrong, or not knowing things, or being shown up by their patients. Yes, I have a negative view of the healthcare system as a whole. But in all of that negativity, I have one thing going for me… I have a doctor who cares more about helping me than about being right.

My doctor is awesome. She’s humble. She’s brilliant. She looks cute in boots. Most importantly, she knows when to say, “I don’t know.” In my vast experience, this is a rare trait in a doctor. I have found a gem.

On Thursday, I see my neurologist for another series of Botox injections. I will tell her about TN just as I have told you. I will probably cry. I will try to remain as detached from the conversation as possible, and I will ask the following question:

“Will you rule out Trigeminal Neuralgia as a cause for my pain?”

I will not ask her to diagnose me with this condition. I will not say, “I’ve read all of the facts and this fits better than anything else has and I want you to agree with me that this is what is wrong with me.”

I am not a doctor, and I choose not to self-diagnose. I believe in finding doctors who listen and make every effort to rule out conditions that I have questions about.

The way to determine if I have Trigeminal Neuralgia is to ask my doctor to prove that I don’t have Trigeminal Neuralgia. And if I don’t have it, that should’t be a hard task.

Friday marks the third anniversary of the last time I knew what it felt like to not be in pain. On the afternoon of August 7th, 2012, after a day of feeling much better, and actually feeling good… the pain that I had been battling all that summer started again and never went away.

It’s been a long three years.

A diagnosis would be a hell of a  way to celebrate my painiversary.

However, as much as I’d like to have an answer, the only answer I’ll accept is the correct one.

Thank you, Amanda Young, for talking about your pain.

Please visit Amanda’s fundraising effort, Face the Change, to learn more about TN and about how you can help.