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.

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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.