The vertigo began when I cut one of my medications in half. It worsened yesterday when I stopped taking it altogether. Now I’m feeling listless, though I’m still able to concentrate enough to write. There are strange swishing noises in my head that come and go. A friend of mine who has been through the same experience described it as “a horse’s tail whipping back and forth, over and over.” My body vibrates when this happens and it pulses from my head to my toes.
I knew what I was up against, but I also knew what I was cutting out of my life, and I’m glad to see it go. As I washed my hair yesterday, hoping the shower would take it all away, I thought about why I started taking this medication in the first place.
There’s no way the withdrawal symptoms could possibly be worse than the reason I started taking this stuff.
I stick by that even as I write this.
This disorder is too painful for words, and few people know about. So I feel it’s important to tell all, because there are others out there suffering much worse than I have, so much they’ve had to leave their jobs and can barely step out of the house. It makes me want to cry; in part because of my current state, and also because my heart hurts for people who are in chronic pain every day of their lives.
On August 22, almost a year ago, I was diagnosed with trigeminal neuralgia, which I’ve had almost my whole life and always assumed was nothing more than “bad sinuses”. Until my diagnosis, I’d been taking every over-the-counter medication for sinuses you could possibly think of. I like to joke, you wouldn’t believe the stuff I’ve stuck up my nose. Pain makes you do crazy things.
I’ve had ex-boyfriends, friends, and teachers tell me I was over-exaggerating or just coming up with something to get out of doing school work.
“You can’t possibly be in that much pain.”
“You’re making it up.”
“You just want attention.”
As early as elementary school, I was leaving class to be picked up by my mother, who couldn’t understand what was wrong with me and didn’t have the money to figure it out.
All this led up to August 22, my diagnosis, and the following day when I began taking Effexor as a treatment for chronic nerve pain. Effexor is mainly prescribed as an anti-depressant, but I’ve read it’s prescribed for other things as well. Every time I read about it, chronic pain conditions are always at the bottom of the list. The very day I began taking Effexor, I sensed it wasn’t going to help me, and in subsequent days, I didn’t think it was helping at all, but I didn’t know for certain. I couldn’t be sure. And the reason was because I had nothing to compare it to.
“Better? All cured?” My neurologist asked a month after I’d begun taking it.
I thought this was a very silly question, but I didn’t say as much. Instead, I told him exactly what he told me every time I asked him a question: “I don’t know.”
Up until that point, my TN had been a yearly visitor. I expected it would stay for a full month once a year, but I never knew which month it would be. When the pain began to approach, I knew I had fifteen minutes to get to a safe place before all hell broke loose inside my face. No matter where I was–work, school, out shopping–I had fifteen minutes to get somewhere I’d be able to safely break down. Completely. Because I had no control. And let me tell you, the worst time for this to happen is when you’re behind the wheel of a car. Every year, for an entire month, I was in severe, unimaginable pain at least every other day, and I treated that pain by sobbing uncontrollably, punching my pillow, and vomiting, which provided relief during the mere seconds it took to void my breakfast. Disturbing, I know—but worth mentioning.
This time, things were different. The subtle twinges and pressure began in June. I remember it distinctly. I was standing behind the circulation counter at the North Palm Beach Library, talking to my coworker Julie, when all of a sudden the pressure began. I leaned my head forward and gently rubbed my cheek—which I later learned makes it worse—then told her, “Ugh, I think I’m getting sinus pain.”
Instead of one month, this time it lasted three excruciating months, overflowing into September.
How is someone who has gone through something their entire life supposed to know if it’s getting better? I had nothing to compare it to because I couldn’t remember a time when I was okay. Therefore, I had no way of knowing whether Effexor was an effective treatment.
This is what can make entering the world of medications and neurology so difficult for someone in my position. If you’ve gone through something for as long as you can remember, and only now sought help, then you have nothing to base your findings on. So I kept taking Effexor, even after being prescribed Neurontin, which is commonly given for chronic nerve pain.
Neurontin helps me. I knew it as soon as I began taking it. I could feel the difference. And if I forget to take a pill, or I take it too late in the day, I feel the effects of that too. A close friend of mine who is a pharmacist told me, “Neurontin is a very safe drug.” However, do not take that as gospel. Some people have extremely horrible experiences with it. Everyone is different.
I learned more, I read more, and one day I decided I was sick of Effexor. I don’t like what it has done to me.
Four days ago, I decided to go against all logical advice and quit. Cold turkey.
Or, as we vegetarians like to say, cold tofu.
NEXT: Part 2: Trippy visions at the hands of Effexor
Disclaimer: I am writing a short series of blog articles based on my own experience. Really, really don’t try this at home. I just want to make it very clear that I am only sharing my experiences to inform people about Trigeminal Neuralgia, and to let other TN patients know they aren’t alone. I am not advising anyone. Stay tuned.