My TN has hit a whole new level after placement of a new permanent crown 3 weeks ago. I had a relatively mild case of TN up until that point but within 24 hours of that crown going on I was having painful shocks many times a day and general achiness and pain. I went back to my dentist 2 weeks later and everything seemed fine with the crown. She numbed me up with novocaine which made the shocks stop for 2 whole hours. I then went to my endodontist and she could find nothing wrong with the tooth under the crown. And she advised me to stay far away from dentists and go back to my neuro. Two days ago I started getting shocks anytime I tried to talk (eating and brushing teeth are also torture). It makes parenting my children and functioning in general very challenging when you get shocked everytime you try to speak. I teach an after school class once a week and I have no idea how I will manage next week. I can’t get into my neurologist until Wednesday. Currently on Gabapentin and up to 1200 mg a day with little impact on number of shocks (may reduce the pain a bit). I’ve probably had 200+ shocks a day for the last 2 days. I am so over this nightmare disorder. I am a healthy adult. I just want it to go away!
Hi Katherine
I am so sorry.Wednesday will be soon-but it feels like forever-just try not talking.Have a bunch of signs made up for your kids-STOP THAT,COME HERE,or a little bell so they can come and you can whisper.
1200 mg of gabapentin is a fairly low dose.Your neurologist might want to put you on tegretol or trileptal for a while until it calms down.Someone on this board said to take gatorade if I felt nauseous on those drugs.
I really hope it gets sorted out on Wednesday.
And for nightschool-it would be the same if you had laryngitis .You are a smart lady.
I hate this crap-my back finally popped in and I have this.
WHY???
Hugs
Thank you. The signs are a good idea. Still suffering with this today. Interesting that 1200 mg of gabapentin is considered a low dose. I feel like a zombie on that much. I was only taking 300 mg at night before this episode which was working well. Sorry for all of us who have to suffer with this damn disorder!
Hi Katherine
I was taking gabapentin for hot flashes.Sometimes 900 mg at night.I find if I take more than 200 mg at a time I might fall asleep.Someone said there is a long acting version that might be better for you.Me-I don’t really care anymore.
I am not working so I can bump it up during the day sometimes
It so sucks.I hate this.
And being treated like a child by doctors is the worst. Please,good wishes and good luck to you tomorrow.
Please let us know
Saw my neurologist on Wednesday and he put me on Keppra in addition to the Gabapentin at 1200 mg a day. If this combo doesn’t work in a week he is putting me on Tegretol. Had one of the worst bouts of shocks ever today. Screamed out in pain. I am a zombie from the meds. At least I get breaks in the pain. He said those are refractory periods where the nerve cells are depleted and literally can’t fire as much. I live for those periods every day. Usually I get a couple 2 hour shock free chunks. Fingers crossed the Keppra does the trick for me.
Fingers,toes and everything crossed that it works.
Keppra is definitely making a big difference after a few days. Going to play with dose as I can tell when it wears off. Hope this does the trick and I can eventually wean off the meds. Hard to function when I am out of it though. Slept for 2 hours straight today. Have to return to regular programming tomorrow (spouse back at work and kid school schlepping, teaching, etc starts back up). Hopefully my shocks will stay at a tolerable level so a I can function.
Hugs Katherine. I’ve been following along with your posts. I pray today is a gentle day and your Ned’s are going to give you the relief you need.
Kristi
I have same problem and wish blessings upon all of you. barbiedollstars
Well Keppra is helping some but my memory is bad and I’m very tired. I also had my worst attack ever a couple days ago. Screaming and writhing in pain in public while I struggled through it. I was sitting near a woman who probably thought I was a drug addict in withdrawal. The side eye she gave me was intense. That attack started as a “gentle” pulse of pain, almost like a whisper and then suddenly I was hit with agonizing pulses of shooting pain that went on for a while. The nerve must’ve run out of juice because it finally stopped. I was sweating, crying and apologizing to those around me. I am so glad my kids did not see it and that I was not driving a car. For the rest of that day I was so exhausted I barely could function. I think the adrenaline rush must’ve wiped me out. The last two days have been ok. Back to the usual shocks here and there. Taking 250 mg of Keppra and 300 mg of Gabapentin 4x a day and CBD tinctures when my jaw and teeth ache (that helps better than anything for the achiness). I am
Now on edge though and alert for the next awful attack like what I experienced. To all of you who have to deal with that level of agony on a more frequent basis, I am so very sorry. Brutal.
Oh my gracious sakes sweet Katherine.
People we are around when attacks happen are usually freaked out. I’ve apologized profusely which really we don’t need to. I will say if my face gets weird looking please just keep talking to me I’m listening I have a rare disease. When we cry out in pain caring people will usually ask is there something I can do to help. Those are true friends. I now say I have … write it down and please google it and just keep going. I hope that helps some. I’m so truely sad we all have to go through this and others wonder why we don’t get out of bed or go in public. I understand and that word is the best comfort at times. Hugs through tears. Kristi
Thank you! So nice to have a place where people understand. It’s such a weird disorder. I am just fine most of the time (thank god). So I think it’s hard for people to understand. I just hope somehow I don’t start getting more of the bad attacks. I am going off processed sugar and if I can handle that possibly trying a modified ketogenic diet to see if that helps . I have gone off sugar before and gone for 9 months without a shock. Might’ve just been a coincidence but worth a try. Not easy when i have a Girl Scout and it’s Girl Scout cookie season though, lol.
I wish eternal blessings upon you to help you with this terrible syndrome. I have no will to go on and now my lips are on fire and the skin in my mouth is sloughing off. I can barely eat and lost my appetite. I feel for you and I certainly understand how terrible the pain is. I am now getting terrible headaches and shooting pains through one of my eyes. I wish I could wave a magic wand and make all of the pain go away. More blessings and you are in my prayers, barbiedollstar:sob: