Hello
I had an MVD in March of 2019. It helped a little bit because my front tooth rarely hurts, just the other ones on the left side intermittently. What is still there (the neurosurgeon told me it’s a 50% chance of a 50% recovery from my type 2 TN-still trying to do that math. All I know is that there has been some improvement. What continuing to happen is a constant burning in the left half of my top and bottom lip and the space between the bottom of my nose and the top of the lip, left side. It’s like a gas burner that someone (cruel) turns up and down, but the pilot light is always on. When the burning is flaring (several times a day lasting from 30 min to hours, it’s really difficult to contemplate doing much else. I’m unable to take any medications due to hypersensitivity to side effects as I increase the dose. I don’t think there’s an answer, but I haven’t posted in a long time, and thought I’d do it now. It can be an isolating illness. Glad to have this site.
Camia
I agree this site is a God send . Plenty of great information. I hope you find some relief soon . Praying for a cure for those who suffer from this cruel condition. Sending love and light to all.
I have had the MVD surgery back in 2009 and my pain started in 2002 after the surgery I’m still having that burning pain with what feels like a knife jabbed and twisted or my face just feels like it’s swollen and like I’ve been beaten on the whole right side of my face I didn’t have pain after surgery for 6 to 8 weeks I did lose my hearing on the right side then the pain came back My pain level is always at a 3 I take OxyContin 20 mg twice a day and oxycodone 20 mg as needed usually with a heating pad on my face when the pain level goes above 5 or beyond which is at least 2 to 3 times a day and sometimes 5 times in a day when I take 3 pill with the heating pad within 1 1/2 hours and it doesn’t help I do go to my doctor or the urgent care to get an injection of Torado 60 mg IM or 30mg IV that usually takes the pain back down to a 3 this only happens about 3 X a year I am hypersensitive to most of the anti seizure medication that is why I’m on opiates I hate being on this medication but I’ve had 6 or 7 different injection Gamma knife to the back side of my head and the right side of my face then the surgery and I’ve had electric stents put into my face trying to help stop the pain I’ve also tried acupuncture the only thing that I know of that I have left to try is cutting the nerves but I’ve been told that it’s a 50-50 chance that it work and a 50-50 chance that my face will droop and be partially paralyzed like I had a stroke on the right side of my face I’m 67 years old and I think I may cut the nerves when I’m 75 or 80 I may be a little vain because I don’t want to go around with a paralyzed face like I’ve had a stroke but I feel I’ve had enough of the pain that I don’t need to be reminded when I smile or laugh and people may stare or look at me and feel sorry for me because the right side of my face doesn’t move I know this is a long story but the only thing I can think of is if you can take small dose of opiates if the pain is severe and/or heat that may help ease that pain I just wanted you to know that there are other people out there that understand your pain that are in but just keep in mind they are other people out there even worse than we are they may not have any legs or paralyzed they my be blind deaf or worse so I guess we are somewhat lucky because our pain only bother us every three or four times a day and I know mine is controllable even though it takes a lot out of me when it happens several times a day most the time people wouldn’t know I am in pain always I hope the best for you in finding more comfort
Hi Camia !
Is the lip area in pain the external lip area or the softer interior area?
If it’s the exterior portion a compounded 5% Lidocaine ointment may help decrease the pain .
There are many compounding pharmacies around —some will ship to you .Cost varies widely —-$ 30 to 60 for the same amount so shop around.
Have you had genetic testing for pain meds ?
Several companies offer this and insurance may pay for it .It was very helpful for me.
It can help guide medication choices and may give some insight as to why you have the side-effects that you do .
HI Medica
I’ve not had genetic testing for pain meds. The pain is on the soft lip, top and bottom and the area between the base of the left nostril and the top of the left lip. The rest of the left side, including the left side of the tongue, gums, and cheek are numb, yet feel sensation. I’ve tried most pain meds and they have made me nonfunctional or very sick. The lips are numb as well, but burn. Go figure…I’ll try the lidocaine. Thank you
Camia
I use a compound cream since I am very sensitive to medications like antiseizure drugs. I use a compound cream which give me a lot less side effects than the pill does. It is 6% gabapentin and I use it twice a day. When my left ear burns, I will apply at the back of neck. When my teeth hurt I will apply on face. My insurance will not cover any compound cream. So I pay $60 a month for it. It is worth it to me. I have done this for the last 5 year. I did have a MVD last February with Excellant results for severe stabbing and burning pain on the right side. My Artery had fallen on the trigeminal nerve after I fell and hit my head. I had to take pills when that happen.
Some times I use salon pas,heat, ice, and occasionally capsicum cream.
That’s good info, Linda
I wasn’t able to titrate up with Gabapentin because of the severe anxiety it caused. I’ll see if my medicare/supplement will cover it.
Take care
Camia
Hi Camia !
The compounded Lidocaine that I use is put in a vehicle called “ Lipoderm actimax” .
I do not think all Compounding pharmacies use that mix because another pharmacy I price checked at had not heard of “Lipoderm actimax”. .”
Here is why I think that is important :
Recticare is an over the counter treatment for rectal pain .
It’s 5%Lidocaine in s base that is meant to be absorbed by mucosal tissue …… so being a frugal person I thought I would give it a try over the more expensive compounded Lidocaine cream .
Recticare was not nearly as effective although both contain the same percent Lidocaine .
So it seems to matter how what material they mix the Lidocaine into …just FYI.
If you do not get a good response some people in the group put Lidoderm ( Rx) or Salonpas ( OTC) patches on their face .
The cream is obviously less obvious …
( Just for background —-I use to be a M.D.before I became ill which is why I was willing to try a hemorrhoid cream on my face 
! )
I am sorry you have had such negative responses to meds given for pain .
If you feel like it sometime perhaps you could list which ones you have tried in case some other meds might be recommended ?
Take care ,
Medica
Ive had trimengal ace pain on left side for nine yrs i got on spg nerve ablated had ethmoid surgery tissue snd nerve didnt help 2 sinus surgeries findingvthen broken nose and went back to day it startef it drains different and horrible burning first nerve fixed wasblike cigarette on face now another nerve acting up i have narrowing inbthroat which seems to start with formula by peg or food and pain seems burning all over my numb face now im to see a dentist that studied face pain to discover whats wrong why wasnt i teferred way back its 500 an hr and i take too much medicine and serquel works tookbme off for that hurts esophagus i cant win i cant plan anything then they say to go on a gravity pole feeding so like in nursing home and by myself i refuse nursing for i can walk talk everything but hard to even take walks due to pain constantly any meds helps anyone with tn
I was a cop that taught over 1000 kids anti drug classes. After 14 years of suffering this sucky disease and multiple people pushing me to try THC. I started to research it and found a a couple major Neurological journals like Lancet of something showing published studies that it may actually help TN. I figured if I am going to do this I am going to not get high. I found that using only a quarter to a 1/3 of a 10mg chewie sold through a pot shop did about a 70% reduction of pain. I don’t get high was the big thing. It was very hard for me because of my past job and my religious beliefs. I finally went to the church leader and explained it all to him. He said he was happy I had finally found some relief. He said “I know everything on this earth is here for a reason and I guess that plant has a reason”. I went home overjoyed and relieved. Overall I find that the memory ebbs at times, maybe a slight lift of thoughts but that may be just life without constant attacks. It does build up in the blood so I cut back what I can now and then. I still do not have to get high and I get to take less Nortriptilyne which does make me crazy.
My neurologist was going to tell me I was full of crap. He wheeled a computer into the room to show me online I was but when he went to respected journals and pulled it up he did a double take and kinda said Hugh!? Apparently one of the few things THC has been shown to have a researched positive effect on is neurological pains like those from MS sufferers and TN patients. I will never be prescribed I imagine unless they change the laws. In any case my doctor seemed to settle down and never brings it up other than asking if I’m still taking it, how much and how often and it effectiveness. Probably going to go into another study somewhere. Just a thought for you.
Thank you for that information. I don’t like to be high. But keep thinking that there is something medicinal in cannibals. I will note the amount you wrote and will try it. Thank you. I have 3 cops in my family-my kids. Thank you for your service.
Take care
Camia
I have tried marijuana gummies and they did work. If you can get medical marijuana in your state, I would try a very low amount to start. I don’t live in a state that allows it. I took 1/2 of a 10mg medical marijuana gummy and it worked very well for pain and I did not get high from it. I was able to work without a problem.
There is a book that came out a few years ago by Facial Pain AssociatIon called “Facial Pain A 21st Century Guide” that has a chapter on medical marijuana for Trigeminal Neuralgia. They considered it to be a good option for treatment.
Also, CBD oil used under the tongue does help also. I use Charlotte Web brand.
Yes my state does allow marijuana use and purchase. Thank you for the dosing info.
I hope it keeps working for you.
I am currently experiencing a flair up under my right nostril base to my lip and well as my back upper teeth. I found the source of my pain and scheduled for surgery next week.
The source of my pain is called Eagle Syndrome which went undiagnosed for 5 years. It is when a ligament turned into a bone at the base of my skull and pressed into my trigeminal nerve. No other surgery but a styliod operation would have the ability to stop my pain but I was offered injections, MB’s and Hama knife all which would not have a possibility to work. Eagle Syndrome is diagnosed with a ct of neck without contrast asking for measurements of both styliods looking for Eagle Syndrome. Since this disease is very rare most radiologist don’t know what they are looking for but having the measurements of the styliod and if they are elongated you can find a expert in the field to help you. I kept a detail journal that help me understand my pain spikes were related to head position.
Thank you for that information, Ann. I’ve looked up Eagle Syndrome and read the characteristics. Did you have the burning pain? I’ve noticed that when I turn my head, I sometimes trigger the increase in the tingling feeling, numbness and burning pain. It could be a slight repositioning, just in everyday living. Jaw pain has occurred but been pretty rare. It’s the space between my nostril and upper lip as well as the upper and lower lip. Have you had an MVD? I wonder if that should have addressed the issue if that’s a part of it for me.
Camia
I had similar intense burning pain on small part of my left cheekbone that at times felt like someone was holding a lit match to my skin. My great neurologist suggested Cymbalta at 60 mg. Within three weeks I was pain free and have stayed that way for over two years now. There has never been a need to increase the dosage. However you do need to start at a lower dose to work your way up to 60 mg. Those few weeks left me with no appetite and fatigue. But all side effects disappeared after that initial period. It could be worth a try for you! In any case, I wish you the best.
I have to tell you - I was in a neurologist visit (PA for Dr actually) several months ago and she googled what I was talking about as a possible solution to migraines and it was all I could do to keep my mouth shut… never went back –