I have been struggling with a relapse of TN2. I am not able to tolerate the Tegratol or Triliptol. I can handle Gabupentin with no side effects. I take 600 3 x a day. I was taking Norco 10/325 x2 every 6-8 hours but was fighting the up and down of the med. Dr just started me on MSContin 15mg every 12 hours. Its a time release med so you aren't always chasing your pain...I've been on it a few days and it is helping a lot to have a steady stream on meds in my system since I have TN2 and the pain never stops!!!!!. The only problem is there isn't that bolster of meds that comes on quick...time release meds seem to creep up to their level and then just stay there for 8-10 hours. I'm curious of the drugs and pain meds that have/have not worked. I have a consult with my new Neurosurgeon on 7/16 and I'd like to have an idea about any new med he might suggest...
I love the 2% lidocaine gel.
Correction 10/16 appt. Thanks Sara. I've just learned of the use of the gel for TN. Deff going to give that a try...
I use the lidocaine pain pads under my jaw when I start to feel the slightest ache and it seems to head it off. Then I can use the Fiorocet and Oxy as needed. I just started Topomax. Interesting drug. I am working with an Oral Maxafacial Surgeon to figure out what meds I can use to get this facial pain under control, post MVD. For a few moments today I felt my face unlock. I was surprised and cautiously optimistic and will remain so. He stated there are a lot of drugs out there to treat facial pain and he will work with me until we find what works. We even talked about being given Meds intravenous to find the right cocktail for me at a Head pain clinic. So keep trying. My best, most hopeful wishes for a speedy path to a pain manageable life.
My insurance will not cover the patches, but will cover the 2% gel. It is a totally off market use to prescribe it for TN, but I get it through a prescription. I put the gel on the left side of my face. When it dries, it peals off. Most people think I am pealing due to a strange sunburn. I like the gel, better than the patches, as I have found the patches do not stick well. The biggest problem I have is when my face is numb, I drool, but I always carry a tissue, and force myself to remember to swallow even if it feels that I do not have to.
Rose said:
Hi this is Rose. I have not heard of the use of lidocaine gel. What do you do with it and is it prescribed by your doctor?
So after a year of trying this and that this is what I’m on to control my pain…
Neurontin 2400 mg
Noratrypline 100 mg
Lorazapam 4 mg
These are all spread out through out the day. I usually have to take an extra Lorazepam and or extra Neurontin. By 8pm I’m needing to go to bed…so tired. I’m 51 and this will be the rest of my life…
Before my MVD surgery, I was on Gabapentin and Dilantin, Can you take Dilantin? It really helped me more than the Gabapentin.
Going to try the gel. Those pads do fall off. Thanks.
Well I stopped taking the MS Contin and went back to Norco 10/325. I couldn't stand it...threw up constantly, dizzy, and just a feeling of dread when I took it. Time release pain meds sounded like a good idea. However, I think because this disease changes and is never the same day to day...having control to take more meds or less meds is a better way to go. It's taken three days to get the MS Contin out of my system. AWFUL DRUG!!!!!!!!! I hate it! Now I have to figure out how to get an appetite. I just don't eat. Norco takes way my appetite. Not to mention chewing makes my ear hurt something fierce! I've lost about 15 pounds in the last three months. Not the best weight loss program. I just want the pain to stop!