What time is it?

Hi Greg,

Yes pain is worse around 5pm till I fall asleep and that's usually between 2am to 6am. I had to quit my executive job a year ago because of this monster. I had 2 failed MVD's and was very suicidal for 4 months because no drugs could help with the 24/7 severe burning pain. It feels like I have a metal coil in my mouth spinning like a tornando that goes from my mouth to my entire right face and sometimes I can feel it in my scalp and head. This is all due to complications after both failed MVD's. I have been living with this involuntary movements since Sept 2014. I finally learned to cope because I have 2 choices. Live in hell and let it beat me down to the point that death sounds better than living, which was the scariest feeling I have ever encountered. The only reason I didn't try anything stupid was because I am blessed to have a great husband and two wonderful children who need me. The other choice was to beat this monster by living the way I used to live. It is very difficult when we are in pain, especially 24/7, but I advise all TN'ers to keep busy as much as possible. Although, I don't work, but I try to keep busy as much as I can. My current meds are Gralise (my pain management doc switched me from Neurontin to Gralise) and oxymorphone, which is narcotic, for break thru pain. Currently I still have pain 24/7 but now instead of living with the severe level 10 daily, I'm at a 5 or 6. At night it can go up to 8. I also put on a compound cream, lidocain and prilocaine, on my face and lips. This help numb the areas that are painful so I can go to sleep.

Good luck to all and I pray for painfree days for us all.

Nina

Hi Greg, I do find that the monster strikes me mostly in the PM although not exclusively. Having suffered off, and with age increasingly on, with it for the past 15 years I am only just taking it further, with a recent MRI scan to help with finding the cause! I really don't have any answers...I'm just trying to stay sane. As I'm typing this I am having to stop frequently because of the pain...I hope others may be more helpful than myself.

Take care

Lynn

Hi Greg,

My take on this:  we are soooo screwed!  I did the Radiofrequency procedure where they burn the nerve into dysfunction which is low stress, in and out of the hospital as an outpatient and works great for a year or two more or less. It got me off all those awful drugs. My jaw is numb where the nerve was so I can't eat well. I have to hide my face in restaurants behind a napkin. Hahaha!  

Overall, for me, this is a good option, far from perfect but a quick recovery and no drugs! And no TN pain for a while and a neuro surgeons office that responds quickly when it comes back. 

Problems..eating in front of people sometimes, the muscles on the opposite side get pulled out of shape and become soar, I never know when it will return so hard to make big plans like going out of the country, or long trips and lastly, the numbness, etc. are a constant reminder of how screwed Ii am which is a challenge in staying upbeat and positive, but I do my best.

best part...NO electric shocks like a live wire was pushed into my jaw. And yEs, night was bad, once I ended up screaming on the floor, well several times, had to take a tranquilizer so I wouldn't freak out and could get some sleep in between pain shocks.

but after surgery, it was all gone

and I await as peacefully as possible until the next time!

good luck!

Hi Greg and fellow TNers

I've only had the beast for about 3 years. Mine is maxillary on the left hand side and it's really localised closely to my upper left lip; and is often triggered by moving skin on upper forehead (eg washing hair, yes still got some). Recent MRIs and my clinical symptoms confirmed I had the regular, rock-n-roll TN and my nerve was constricted by about 50% by the pesky artery that had probably been doing this for some decades. I only tell you all of this because perhaps my shock pain scenarios might be a bit different from others with other complications.

I can go for a month with nothing and then get the full stabbing event which nearly makes me drop to my knees. It occurs anytime of day or night. If I'm having a bit of a bad time, I crank up my Carbamaz to about 1800mg per day but even then I get breakthroughs. My sessions last more or less continuously for about a week (I mean severe stabbing sessions whenever I eat or drink or try to speak clearly on the phone). Once I get to sleep I'm fine but if I turn over onto left side then I wake up pretty damn quickly.

Had enough of this and going for MVD as soon as I can.

Hope I haven't taken up too much of your time

This is a great site and very good contributors, thanks to all of you for the valuable help and encouragement you've provided.

Keep safe

Cheers

Big D

What can I say I had less than one year

Any time but less when walking 12,000 steps a day, did get a few times when walking n talking on cell.

First procedure so far shocks r gone but a bit of ache in gum is pressent but a bit milder do far.

God bless

us and keep us and give up peace

What can I say I had less than one year

Any time but less when walking 12,000 steps a day, did get a few times when walking n talking on cell.

First procedure so far shocks r gone but a bit of ache in gum is pressent but a bit milder do far.

God bless

us and keep us and give up peace

Hi,

Any time of day for the shocks and stabs across the head/scalp and over my face on a daily basis (I'm one of the lucky few who has it bilaterally and in all three branches, Yay!!), BUT, the left eye stabs more often than not wake me up at some ungodly hour and keep me busy being incapacitated for anywhere between 6 to 18 hours, which is sooo much better than the 4 - 7 DAYS before I started medication. The shocks and stabs everywhere else would, thankfully, be just one or two at a time, but the left eye gets special treatment, hundreds of stabs again and again and as I say for hours at a time. I have also had bouts late pm, though, around 11pm.

Not had any procedures yet.

Best wishes.