Hi, my name is Andy, I came across this site after being diagnosed with trgeminal neuragia. A quick little background, I first started having headaches when I was 26 on the right side of my head around the temple area(just below the hairline to right above the jaw line, and it went back a little bit towards the ear). I also had pain just under my jaw on the right side; I guess right where the jaw meets the neck). It started pretty dull, but never went away. It lasted for over 2 weeks...Most of the time it was dull, achey and verry annoying. But whenever I yawned, sneezed, coughed or raised my voice...it would go from dull achey and annoying to Hoy ****!!! it felt like my brain wanted to shoot out of my temple like cheese wiz and like sombody cut the cord from my lamp and stuck the raged end of the cord to my temple and kept the other end plugged in. Well of course being a 26 year old guy...I was like its nothing.

After about 2 and a hlaf to 3 weeks later it kinda just stopped, the dull ache was gone...but a couple times a week I would get this jolt or shock right in my temple...and if i happend to be in mid sentence while it happend, or walking or to be more accurate no matter what i was doing it would cause me to stop dead in my tracks and alomost convulse I guess, like twinge. About 2 months later it came back, and begruginley I wen to the doctors(I was pretty much forced by my girlfriend and family). I was sent for an MRI and all that good stuff...everything was normal, and I was finally able to prove to everyone that I did have a brain. But the diagnosis, was most likely a tension headache.

Well to make an already long story a little shorter. It has been back about 5 times a year, so 15 episodes(thats what I call them), 3 years and 4 doctors later, the urgent care doctor found out about my past history and I told him everything (didnt leave anything out-I tend to do that sometimes), said you have Trigerminal Neuralgia, explained it to me briefly. Administered a shot of kenalog 60mg and prescribed carbamazepine 200mg to take 1 tab 3 times a day. It's been about 12 hours since I started the meds, and for the first time somthing I've been prescribed seems to be helping

Sorry for such the long post, as I know how annoying long winded posts could be. But I do have a question, I didnt ask any questions while I was there...I tend to believe in magic pills and immediate cures, so normally what ever they give me I take and thats the end of it. But anyway; he never brought up the fact that I should follow up with anyone unless it happens when the meds are gone...so should I follow up with someone, or just wait and see? Also should I take the meds till i exhaust my refills or stop, and continue the pills if and when it comes back? I guess the reason im asking is my job requires federally mandated drug tests, as i control train traffic and requires me to be on my toes and make crucial desicions throughout the day. I could potentially put my train crews in danger if I'm impaired in anyway. I did get the doctor to write me a note to take off the rest of the week, but with the railroad ill be back fri night, so 2 days off.

Hi there, not sure why there is such an absence of activity on the forum this week. They are usually very forthcoming and quick to respond especially to the newbies, We know how terrifying it is to receive this diagnosis. There must be a lot of members on vacation this month. I'm sure they will be along soon. Have you read the "stickies" at the top of the postings? There is lots of information in there.

I'm at work, so I will have to be brief, I just hate to see anyone left hanging waiting for a response. Find my other posts and see if anything sounds familiar. As for the meds you are taking, I take them too, but only when I have an episode (that's what I call them too). Mine are so sporadic maybe every 3 months or so that I won't take anything on a daily basis. This drug tends to wipe you out and it certainly has that effect on me. May not be a good idea with your line of work. Heat applied to my ear helps more than anything.

Hang in there, some one will come along soon with more knowledge than I can provide.

Good luck, hope you get relief soon.

Rhonda

I was diagnosed with TG 5 years ago. I was very fortunate in that my doctor diagnosed it immediately and he put me on amitrypline (sp?). It seemed to dull the pain, so I thought that was the best I would ever get. I had a couple of episodes a year until 2007 - the medication wasn't working and I was getting multiple pain at once - to the point where I couldn't talk.

I went to my new doctor and asked to be put on carbomazapine. I had to go on it gradually, but it worked - thank goodness. The thing with this medication is it made me sleepy and groggy - I felt as if I was a bit tipsy... I couldn't go on feeling this way every day (I had TG almost every day in the year) so I asked to be referred to a neurosurgeon.

This neurosurgeon literally saved my life. I ended up having a Balloon Compression. It flattens the nerve - but there is a 40% chance of it coming back. I had it done in March 2008 and so far so good... If I do get the pain back, I will get the procedure done again.

One thing with carbomazapine is that when you do go off them you must wean yourself off - you cannot quit cold turkey. It is too much of a shock to your body.

With your job, it sounds as if you have to be on your toes at every moment. You may want to be careful on how many of the meds you have to go on.

For me, the surgery was the best thing I ever did. I was in and out of the hospital in 1/2 day. I had to spend 5 days resting, but that was it!

Good luck to you!

Hello Andy,

I would take the med only when needed or what is recommended by the doc that prescribed it. If he /she told you take it 3 times a day every day then do as instructed if they told you take it when you have a flare up then just take it when it hurts. what dose your doc think? ask them the best way for you to treat this issue and keep you job at same time!
If you have problems or if the issues you have get bigger I would follow up with getting referred to neuro or pain doc.
Usualy a new med takes a week or 2 to start helping as it take body a bit to build up the med and feel it helping.

Basset thanks for being here and responding... things just keeping me tied up lately but try to come here when i can .
Hope you are doing well.
PEACE
BMW

Yes, I knew there was a good reason - nice to see you back.

thanks for the replys. The medical dept at work wont let me come back to work until the doc oks the meds. I have an appointment with the doc on the 15th, to ask him all the questions i have and to get him to sign off on the meds. Sorry it took so long to get back to you guys, my pc broke after I posted, and have only been able to check once in a while at a relatives house. Hopefully Ill get my pc fixed friday, of buy a new one...its payday. BTW my pain has reduced significantly (i spelt that wrong) been on carbazine for a week now... I will be back, but thanks again.

Andy219. I know it seems like a circus at first, This med or that med? This Doc or that Doc? whew.........
I was taking a drink of something when I felt that first jolt across The L side of my face. It scared me so bad I didn't want to even move. Anyway, after being diagnosed with T.N. I was put on 30mg. of amitriptyline and 100mg of Dilantin Both at
bedtime. That was it, no more jolts. I figured that I could take my little meds.
and that was that. Life seemed beautiful again.
Life stayed beautiful for TEN years. I got married, went on vacation, went to my job etc. I had no idea my life was about to take a very different turn.
After TEN years it came back. So I can certainly see that it can return.
You're going to get this all under control and be sure and read as much as you can. Knowledge is a very big tool.
Blessings, Doodle bug7

Welcome Andy,
I'm also fairly new to this site and to Trigeminal Neuralgia. Well, I guess I've had it for about 1½ years, but didn't have it diagnosed correctly till January of this year. My pain radiates out from the left cheek area and by early January it had become excruciating all the time. I was first put on carbamazepine 200mg by my family doctor, but after just a few days we knew it wasn't gonna work....very dizzy, drowziness, headaches, nausea. He then put me on Trileptal (oxcarbazepine 150mg...2x/day), but it had no effect at that time. We then went to Neurontin....same side effects as the carbamazepine. So about 6 weeks ago, we went back to the Trileptal and gradually it began to have an effect on the pain without any noticeable side effects. In fact, Easter morning was the first day in about 18 months that I've had no face pain. I even tried to make it hurt by being very aggressive in brushing my teeth....still no pain! And today I'm still pain-free. (Of course that's gonna change on Friday when I have my hernia surgery, but at least the pain won't be in my face...lol.)

I eventually did see a neurologist about my present TG about 4 weeks ago and he advised sticking with the Trileptal. I also just had a brain MRI this past Friday, but haven't heard anything on that.

I remember back in the early 90's I would get real sharp pains in my right temple area. It would literally drive me to my knees. They didn't last long and eventually went away, but I wonder if that may have also been TG.

Anyway, I hope you have good success with the carbamazepine and yes, I would definitely follow up with a doctor. I think they have to do periodic blood tests while you're on these meds to make sure they're not doing any damage to liver, etc... as I understand it.

P.S. Andy........ I lived in NW Indiana for 12 years ....Crown Point, Cedar Lake, Dyer, Hammond area. There are certain things I miss, like being able to visit all the places of interest in Chicago.....and I miss White Castle!