Don’t try this at home, kids: Part 2

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I was terrified to take Effexor because I was worried I would lose myself. I’d never taken anything before in my life, unless you count all the over-the-counter sinus medications I was using when I didn’t realize my “sinus pressure” was actually a disorder called Trigeminal Neuralgia.

From Wikipedia:Trigeminal neuralgia (TN, or TGN), also known as prosopalgia, or Fothergill’s disease is a neuropathic disorder characterized by episodes of intense pain in the face, originating from the trigeminal nerve. The clinical association between TN and hemifacial spasm is the so-called tic douloureux. It has been described as among the most painful conditions known to humankind.

I think my neurologist doubted my case. As a doctor with numerous TN patients, he had never dealt with anyone younger than 80 with the disorder, and he could barely wrap his mind around a 27-year-old with TN. I wish I’d had a better doctor, but he was the only one who would answer my call, or take me without health insurance.

I first took Venlafaxine (the generic name for Effexor) on August 23, 2013. My initial dose was 75 mg, upgraded a month or so later to 150. Just like my most painful attacks as a child, I will never forget the first time I took my medication. I had to work at the North Palm Beach Library that day, and the morning was spent napping because the drug fatigued me immediately. I was glad I didn’t have to work until early afternoon.

When I napped, I had a terrible nightmare; I will always recall it vividly.

Digital StillCamera

In the dream, I had a husband and a little girl who was about four years old—neither of which I have in reality. The husband was a man from my past who shall remain nameless. The girl was called Autumn. Ever since that dream, there’ve been times where I’ve drifted into a half-sleep or experienced some type of nightmare that involved this very same child. She is always four years old, with a sweet sad face and mussed up blonde hair. She calls me Mommy. In the nightmare, she cried out, “Mommy, Mommy!”

And I lifted her up as we ran from the beasts that chased us.

The beasts were at least seven feet tall, bulky men, and they wore gray clothing and gray cloaks. On each of their backs, in huge white lettering, was the word Effexor. They stalked toward us with expressionless faces, and I rushed toward a silver hatchback where my husband waited. He had already opened the doors and was ushering us in. Before climbing into the vehicle, I held Autumn tightly in my arms, and shrieked, “Get away from me! Stay away from my family!”

Then I hurried into the car, we slammed the doors and drove away.

They chased us, always chased us.

And they chased me into my waking hours, through every moment of every day. I didn’t want this drug. Deep inside, I knew I didn’t need it. It wouldn’t help me.

To understand why I continued taking it, read Part 1: How do you know if you’re better when you don’t know what better is?

When I woke up from this horrific nightmare, I wanted to cry. I held back because I had to go to work. As I drove, sweltering in a car without air conditioning because I was afraid to open the window for fear of triggering a pain attack, I gripped the steering wheel and said to myself, “What if this changes who I am? What if it takes away my connection to the divine?”

As someone who is deeply connected to the world around me, I feared losing this connection, and I desperately asked the Universe to show me a sign.

Give me a sign that things will be okay. Please.

That was when I saw a gigantic turtle crossing Donald Ross Road, and I slammed on my brake pedal, slowing to a stop and putting on my hazard lights. I jumped out of the car and made my way toward the turtle, which was already in the middle of three lanes. Thankfully, traffic was light that day.

Gopher tortoise at Jupiter Ridge preserve.

Gopher tortoise at Jupiter Ridge preserve.

The turtle weighed somewhere between twenty and twenty-five pounds. I lifted it carefully, and upon sensing my presence the beautiful creature withdrew her head and feet, tucking away into her shell. I took her to the swale at the side of the road, and turned her gently so I could see her face—bright yellows, patterned over dark brown. Gorgeous.

“Now don’t you do that again!” I warned. I placed her carefully in the grass and mud where she’d been previously; I could tell because her shell was caked with dirt.

As I drove away, I knew I’d received the sign I’d asked for. Somehow, I would retain my connection with the divine.

I did a lot of reading and joined an online support group for TN patients, learning a very important lesson: YOU are your only advocate when it comes to your health. Listen to your body, pay attention to your feelings, and be direct when you communicate with a doctor. I don’t care how many degrees that doctor has, or how much experience he’s got under his belt; he doesn’t know how you feel. Only you know how you feel.

That summer of hell was rife with discoveries.

One, there’s nowhere I’d rather be when in pain than in Florida. After an intense attack, I would spend the afternoon lounging in the pool under the palm trees. The hot sun on my face was good medicine.

Two, family doesn’t have to be blood. I don’t know what I would have done without my roommates.

Three, a diagnosis doesn’t always come from a doctor first. Just before an extreme pain attack that had me sobbing and shrieking while I drove home, a friend of mine stood with me on sunny Juno Beach and said, “Maybe you’ve got neuralgia.” Then, just before I was taken from the dentist’s office to the ER, I recall through a haze of pain the dentist saying, “It’s obvious she’s miserable. She might have trigeminal neuralgia.”

Remember, YOU are your best health advocate. Carefully note every feeling, every pain, and make sure you get what you need.

A few months after I’d begun taking Effexor, I walked into my neurologist’s office and told him I didn’t think it was helping.

“You said you thought it was the last time we talked,” he reminded me.

“Yes, I know. But it’s hard for me to figure out. I have nothing to compare it to. This has been going on for so long, I’m not sure I know what it feels like to have a normal face.” After a little bit of prodding, I got him to prescribe Neurontin, and the next time I saw him I proclaimed with a smile, “I know this is working.”

I have bad days and good days, but for the most part, I feel Neurontin has been a huge help to me, and I felt no adverse effects from it except for  fatigue when increasing my dosage.

birds flying tn picThis is day three without Effexor. It has been a shock to my system to wean myself off it. Even as I type this, whenever I move my eyes or my head, I hear something that sounds like birds flapping their wings, and then a strange pulse travels down my body. For most of today, I’ve felt drunk. I walk like I’m drunk. I have difficulty thinking clearly. Turning my head induces vertigo. The slightest things make me want to cry.

And now I know I’m still grieving for my father; every emotion I’ve pushed aside because it was too inconvenient at the time, or interrupted the work that was paying my bills, is coming forward with a vengeance. While cleaning up the house, I sorted through photos of my father, and tools that belonged to him—the last of the grimy old items I’d desperately recovered from a dusty corner of his shed after his passing. This was all that was left of him, the few items that weren’t sold or given away to people who weren’t even family. My chest ached with grief, and I wanted to scream.

I huddled up in my armchair and held my head against my legs, mumbling “this isn’t me, these aren’t my thoughts, this isn’t who I am.”

Isn’t it amazing that some of the most dangerous drugs are legal and available via your friendly neighborhood doctor?

Another nightmare assuaged me while I slept. This time, there was a door in my home that had never been there before, and it led into a cavernous empty house bereft of furniture. Here, I saw a man who looked like my friend Mike—but wasn’t. I knew right away it was a doppelganger.

I recognized the Effexor beast.

“Stop!” I lifted my arms in the darkness and thrust my hands forward, creating light where there was none. He laughed at me, beckoned me forward. “You won’t come near me!” I shrieked. “I won’t let you. I know you aren’t really him!”

I awoke from the nightmare feeling his gaze on me, the stare of a creature that was inhuman, a creature that was pretending to be someone I cared about.

But I knew better.

I was terrified to take Effexor because I was afraid I would lose myself. I cannot imagine what others go through, those who find themselves on even stronger medication, drugs that dull their senses, their creativity, their sense of self.

My body is pulsing. The wings of birds that don’t exist are beating in my head. I feel tipsy even though I’m not. But I will get through this. I will beat this.

You can’t have me, Effexor. And I will keep fighting. TN will never win, no matter how much it hurts.

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3 responses to “Don’t try this at home, kids: Part 2

  1. I was wondering if you ever tried oxcarbazepine for your TN, it is a miracle pill for many people, it gave me back my life after everything else failed for pain relief. It is so much better then the drunk feeling from Neurontin, however some people can not take it due to an allergy, if you can tolerate it, definitely give it a try.

    • Thanks for your suggestion, Kim, and for visiting my blog. Fact of the matter is, I don’t have it nearly as bad as some, and I hate pharmaceuticals. Neurontin doesn’t make me feel drunk, but coming off Effexor certainly has. Until I can barely walk from the pain, I refuse to take more than one medication. I’ve started taking a vitamin that’s supposed to reinforce the sheath around the nerve; I’ll see if that works. Thanks again!

      • I hear you some drugs are a big pain to take, either until your body gets use to it and sometimes it is worth trying other avenues instead. Take for instance B-12 mixed with B-1 injections OR sublingual B-12 and B-1 supplement is good for neuropathic facial pain and can help the sheath around the nerves relax and take the edge off.

        Have you noticed if your attacks are shorter and milder, since you started the vitamins?

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