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. 

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

  1. I found that having an answer made getting through the pain easier. I don’t know how that works, but it does. Being able to put my finger on a reason for the pain meant I wan’t mad. Keep looking for that answer…it’s there.

    Liked by 1 person

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