Just stumbled across this site a few days ago. I must say I really enjoy the support, tips and information it provides. I just wanted to share a little of my story, hopefully it’s not to long and it makes sense. I’m a little “foggy”, just started up my meds again.
Roughly about 6 years ago I went to the doctor for, what I thought was a headache. Now before this time, I remember occasionally getting sharp shooting pains down the side of my face. But they wouldn’t last long, just enough to make me stop doing whatever I was doing and people would comment, “What happened?” And I would describe it and they would look at me like “oh, ok…”. But anyway, 6 years ago it hit, and it was extremely uncomfortable. I would get sudden jolts of pain that would hit a 7 followed by an annoying pain of about 3. Well this went on for a few days before I cracked and went to the doctor.
My first doctor sent me for a CT scan. And eventually diagnosed Cluster headaches. All the meds he put me on we’re headache meds, they did absolutely nothing. Finally a few days later it stopped. So I thought maybe he was right. A few weeks later, I had it again, this time on my left side of my face. Both times they were limited to the temple area. But if I touch under my jaw on the affected side, the pain shoots right to me temple. So after a few days I went back to the doctor. He was intrigued, because cluster headaches seldom affect both sides. But, he decided that cluster headache it was.
After about a week, it disappeared. I once again, forgot about it. And for a year, nothing, well as bad… I’d still get the occasional jolt, mostly on the right side but sometimes on the left. For the next year, which would be year 3, it was happening more often. I started seeing new doctors. And each time I seen a new doctor, sometimes they would agree Cluster Headaches, others would say migraines, one said get new glasses, one said I was just stressed. Finally about 3 years ago, I went to an urgent care and the doctor I seen, immediately said, Trigeminal Neuralgia. I was like what? Then he prescribed me Tegretal, once I picked up the prescription I seem it’s used for seizure patients, my first thought was “What a quack!”
Within a couple doses, it was amazing, the pain was gone. Unfortunately I had an allergic e reaction. And had to be taken off a week later. The pain came right back. I’ve been to a neurologist, and we’ve tried countless combinations of meds over a 4 to 6 month times frame, where I was unable to work. This was 2 years ago. Constant pain, shooting jolts… I mean sure there was a few good days, but they were few and far between. Then one day it just stopped.
Fast forward a year and a half, besides just the occasional jolt or bad day, I pretty much forgot about it. That is until Tuesday night at work. At 3:15 am… Bam, no warning just shock, but this time it was worse my right temple felt light a hammer trying to break out, my right jaw felt like a jab from Mike Tyson and a hot poker behind my right eye. It was so bad, my eyes teared up.
So anyway, it’s back with a vengeance. Right now I’m on Cymbalta and Lyrica. And 800 mg of ibproufren. The ibproufren seems to take the edge off. I’m still in pain but a lot more bearable.
In case I haven’t said it the nuerologist diagnosed me with bilateral atypical trigeminal neuralgia.