First, let me give a little background. I was diagnoised with TN by an oral surgeon this past November 2011. He referred me to a neurologist who confirmed the diagnosis.
My first episode of what I now understand is Type 1 TN pain occurred following a bad experience at the dentist's office. I was having impressions made for two upper teeth crowns. The technician allowed the impression "goop" to harden too long and could not remove the impression tray from my mouth. She tugged, pulled, wiggled and did everything short of putting her foot on my chest and yanking the thing out of my mouth. Finally, she gave up and called the dentist who did manage to remove the impression tray.
The next day out of the blue I felt a flash of pain in my lower jaw that almost dropped me to my knees. It was like an electrified ice pick had been jabbed into my jaw. As I said...it was over in a flash but I'd never experienced any pain like it before and it left me weak. My first thought was that I had an exposed nerve in a lower tooth and I guarded that side of my mouth the rest of the day. The next few days it happened several times again but not quite as intense. As I had a return visit scheduled for the crowns in a couple of days, I postponed calling the dentist.
I discussed the pain with the dentist first thing on my return visit. She seemed perplexed...looked at my x-rays...assured me there were no dental problems to account for the pain and just sort of dismissed it. Two days after that visit, the pains returned with renewed intensity and I called the dentist and insisted on an appointment that day. She physically examined all my back teeth and tried to stimulate the pain but nothing happened. She took new x-rays...nothing abnormal to indicate pain. She referred me to the oral surgeon and that's when I received the diagnosis as "classic symptoms of TN".
I was already taking 300 mg of gabapentin daily as part of my fibromyalgia regimen and the oral surgeon increased it to 900 mg daily. The pain continued and he referred me to the neurologist. The neurologist upped the dosage to 1200 mg and added 20 mg of baclofen....then to 1600 mg of the gabapentin and 30 mg of baclofen.
From the beginning of this, I experienced very unpleasant side effects.... nausea, dizziness, blurred vision, etc. Each time my dosage was increased the side effects were worse and I was unable to function at times. On Sunday, March 18th , all hell broke loose. I awoke with a horrible, all-over sick feeling and barely made it to the bathroom when the projectile vomiting began. I felt a little better after that but waited an hour before taking my morning meds and eating a small breakfast. Then the vomiting started again. Even a few sips of water triggered the vomiting...all day I experienced extreme weakness, dizziness and what I can only describe as feeling like my whole body was buzzing. I also felt electric- like shocks in my fingertips and toes. I finally called my daughter and she insisted on taking me to the ER.
The ER doctor ordered blood work and a CT scan because my speech was slurred and I was almost hostile insisting that it was my TN medication. He determined that I wasn't having a stroke but I was dehydrated had a bladder infection. He reviewed all the medications I was taking for the TN, fibromyalgia, blood pressure and degenerative joint disease. As it turned out, four of my six medications all had the same side effects...and...in his opinion, the side effects were being compounded as a result. In fact, one anti-convulsant med for restless leg syndrome that I had taken for years was totally unnecessary as gabapentin is also prescribed as a treatment for RLS.
The ER doctor recommended that I consult my primary physician and neurologist for eliminating all my medications other than the gabapentin and my blood pressure medicine. My daughter called my GP and neurologist that night and left a voicemail message relating the ER doctors's recommendation. The GP responded the next morning giving his OK re the four meds he had prescribed...staying on the lisinopril, of course. I still haven't heard from the neurologist re the baclofen and my next appointment with her isn't until the middle of June.
Whether I've been wise or foolish I don't know...but I stopped the baclofen and am taking only the 1600 mg of gabapentin for the TN and lisinopril for my blood pressure. It's been over two weeks since that horrible episode. My bladder infection has cleared and I've been functional with minimal TN pain. I still have significant problems with eating, brushing my teeth and a couple other salivary gland triggers but I've learned to cope and deal with those.
I've lived with the fibromyalgia and joint pain for years to the point it's almost normal for me. To avoid compounding the side effects with meloxicam, etc., I'm taking 800 mg of OTC ibuprofen only as needed when I'm especially uncomfortable.
I hope my respite from the horrendous side effects is not just a fluke and that I won't regret dropping the baclofen for TN. I'm wondering if I should try adding the baclofen again at the original 20 mg daily dosage.