Hi everyone, I'm new here.
I've been lurking since I suspected I had TN last summer and didn't know what to do (originally diagnosed with TMJ by my GP and I just knew something wasn't right with that) and I decided to finally join now. And I guess I should start out with my story.
I guess I have TN1 and TN2 since I get the stabs/shocks and the chronic throbbing vice-like pain. I thought it was originally a tooth problem but once it started to move around, I knew it couldn't be that. It started on the left side, and I did fall off a step stool as a child and broke my fall with my face and since then I do get the rare feeling that someone is drilling into my left eyebrow, so I figured the two were related. I told my GP about that, she did confirm that my eyebrow issue is definitely a nerve damage issue, but thought the rest of it was TMJ and gave me flexeril. Literally two days into flexeril, all the pain went over on the right side around my jaw and cheekbone and I gave it two weeks to do anything. It didn't, so I called the doctor and she told me all she could really do is recommend that I go to a dentist for a night guard.
In the meantime, I have a friend who has had TMJ almost her entire life and is kind of an expert on it and how to live with it. I kept asking her questions that made her curious, like "how do you wash your face when you get pain when you touch your face?" and "what do you do when it's windy and it feels like someone took a sledgehammer to your face?" She's in nursing school and found a description of the pain someone with TN would experience and she showed it to me and asked if it sounded familiar. I could have written that, no joke. So I set up an appointment with a neurologist (I work in retail and we all know that talking is so not fun, so my shifts were awful) and literally in 10 minutes he had me diagnosed with TN, right maxillary and mandibular nerve involvement.
Great, I get a diagnosis, it makes sense and here's some carbamazepine. I knew it had the potential for side effects (I really love pharmacology and medicine in general) but I just wanted confirmation, so I took it. And it worked like a dream. Until the second dose and then all the horrible side effects kicked in, complete with hallucinations. Called the neuro, they told me to go off it immediately. Recommended gabapentin, but after my experience with carbamazepine, I wasn't exactly excited. He wasn't really willing to prescribe anything else, frankly, so I just left it at that and decided to manage as best I could without risking another side effect filled few days so close to Christmas.
Fast forward to earlier this month and I go see my GP for my yearly refill appointment and I wanted to ask her about gabapentin and other options since she knows my penchant to get weird side effects (fun fact, when making my appointment, they were originally going to put me down for fibromyalgia because they'd never heard of TN at the front desk, I just told them to put it down as nerve pain). Apparently my neuro never told my GP that I really had TN, so I gave her that update and asked her about Baclofen instead of gabapentin. She told me it probably wouldn't work as well since it doesn't directly impact nerves (already knew that, but it's safer) but it was up to me and she understood my concerns and prescribed it. I did ask about Marinol since the pain destroys my appetite and she's concerned I'm losing weight, and she didn't balk at the idea, but also didn't prescribe it. I've been on Baclofen for about two or three weeks now. Still getting some pain, but even at the worst on Baclofen, it's still better than it was when I had to break down and go to the neuro.
Complicating this fun journey... I don't have insurance. I can't afford it. So the Gabitril I decided I'd be okay with trying is out of my budget at a whopping $186 a month for one a day at the cheapest pharmacy near me. And no one at my job knows I have this disorder. I did mention taking a muscle relaxant the night before work once, but said it was "because I worked out kind of hard." I don't think they'd fire me for having it since as far as they know nothing is wrong, so they think I can still do my job, but I don't want to be babied and I don't want them to think I can't do my job if I tell them about this, even if I'm in horrible pain after a shift. I won't even tell friends I don't trust because I'm scared they'll come in and be like, "hey Meerkat, how's your facial nerve thing today?" and then I have to explain.
So that's where I am now, and I promise my future posts won't be an essay. I took an Ativan in hopes it helps me out tomorrow and helps the sleep (yay Baclofen aggravating my insomnia) and it tends to make me very talkative... no more posting under the influence of benzos, I promise.