Hi, I am new here and new to this diagnosis but not new to facial pain. I started having pain/burning sensations in the right side of my mouth and jaw about three years ago. The oral surgeon that I have seen gave me a cortisone mouthwash and viscous lidocaine. He told me he thought I had lichen planus but the symptoms I was having were not like that really at all. I don't have insurance so I stopped pursuing it and figured that since it won't kill me that I just have to live with it. It lasted quite a long time and then it went away. I probably was pain free for close to a year and then this spring it came back and is so much worse. I live with a constant burning in my gums and an ache in my jaw and teeth but now I get these episodes where not only do the places that are always irritated hurt like crazy but the pain moves into my ear, cheekbone and temple areas. I wanted to go to the ER a few weeks ago but not having insurance makes that seem like a crazy thing to do. The pain gets so bad at times that I want to chop the right side of my face off. I went back to my family doc in April of this year for multiple issues (I have G.I. and back problems as well as insomnia) and told her about this pain in my face. She felt that if we could get me on a proper sleep schedule that all of my health problems would improve. We got the sleep under control but my face kept getting worse. I went back to her in July and she finally looked at my face as a separate issue and that's when she diagnosed the TN. She gave me Gabapentin only 200mg per day to start but when I started reading about Gabapentin it scared me not to mention that it could take up to 3 weeks to work and I would have to take it daily. I was hoping that this could be treated as needed rather than daily. I told my doctor about my concerns and she basically told me that I can take Gabapentin, Carbamezapine or go see someone else. And I felt like I did something wrong by asking to try pain meds (she flat out told me that was not an option for managing this). That was pretty discouraging. I have type 2 so most days the burning and aching is something that wears me out emotionally and it can prohibit me from functioning normally but doesn't debilitate me physically. I do have debilitating episodes where I want something that works fast, I'd even take the Gabapentin if that was how it worked. As depressing as knowing that this might be there for years without any letup is, I don't want to cause my body more health problems by taking these meds long term. I guess what I'm saying is that I'd rather live with the relentless irritation daily than ruin my organs or mind but it is interfering with my life so I need some relief when it's really bad just to have a break to reboot. Am I crazy or have any of you avoided the anti-seizure meds and figured out how to treat the pain just when it's really bad? I'm so scared of the whole daily ingestion on my organs and dependency/withdrawal stuff but would take just about anything when it's flaring up. I've tried icing the outside of my face (that seemed to make it worse) I've tried clove oil, anbesol, sensodyne and Advil to try to deal with the burning and tooth pain but none of those help. I'm not sure if I should pursue this with other doctors or if they would treat me the same as my current doc. I'm not sure if all of what I wrote even makes sense but if you have any words of wisdom about what I'm feeling please let me know. There are some other issues and info but in an effort to not make this any longer I can discuss those in future posts. Thanks for reading all of this.
Hi Bells! Glad you found the site! It helped me so much when I was diagnosed a few months ago.
I know everyone is different so my story and yours may not have the same outcome--but I have had all or nearly all my pain taken away with a very low dose of epitol (generic tegretol) an antiseizure med and it only costs me forty cents a month from walmart. I take 100 mg. morning and night. It started working in three days. I felt a little weird at first --dizzy, tired, etc. But it went away. It does help with insomnia--I am sleeping better than ever. They sometimes give it as a mood stabilizer so I do even notice i feel better emotionally-- going through menopause emotional stuff... so I can only say good things about it!! I don't know if/when I will have to increase the dose-- I know some people take 10 times my dose and the side effects bother them...
Good luck! I hope you can get a treatment you feel comfortable with soon!!
My way of thinking is meds are not good,but they beat the heck out of pain.I take carbamezapine 800mg. a day.I dont like the side effects,but it does keep my pain at bay.I've recently had gamma knife and am slowly cutting it back.It does help you sleep.My advice is try the meds.You may have no side effects.Good luck! Don
Here is list of over 30 things to take for this!
Thank you for the responses. I know that at some point soon I have to weigh the positive effects of possibly living with less or even no pain against the side effects of the medications. Believe me I've pulled out the Gabapentin several times and I end up putting it away because of the anxiety. I have felt like my own worst enemy going through this because I can't bring myself to feel comfortable enough to just try them. The only time I feel like I would take them without over thinking it is when I'm really suffering and I know they don't work like that. I wish my doctor would have been more open to discussing other non-daily options. I know on the list that I looked over from Kc Dancer there are several meds that I would feel more comfortable with because I know I would not need to take them everyday. I had no idea there were so many because my doctor said it's these two choices or nothing. I guess now I just need to find the right doctor that will be willing to go over all of the options with me. My doctor was so short with me I actually just felt rejected. Thanks again for your information, it may be what I need to get myself to the point where I can at least try what I've got. Oh a couple more questions I have about the Gabapentin is that the pharmacist told me to wait for a weekend to take them. I know Carbamezapine is similar. That seems fine for nighttime for someone with insomnia (in fact I'd welcome good sleep) but how have these meds affected how you function during the day? Do you still feel like yourself? Do you have to have CMP's done on a regular basis to make sure they're not doing any damage? Thanks again, I really appreciate the information!
Hi! I am absolutely the same way! I do NOT like taking medications of any kind! I was very open with my doctor and told him so. He agreed with me since I’m only 36 that I would have to be on these meds for so many years and suggested MVD. I agreed to the surgery, but he still wrote me a prescription in case I needed relief while I was waiting for surgery. He wrote my prescription for trileptal and said it has very few side effects. I did end up taking it and at first I was VERY tired. However, now that I’m used to it, I don’t even notice it. It does help with the pain. I had MVD on Aug. 21st. I have type 2 TN and I still have some pains. I’m still taking the trileptal. 
Hopefully, my nerve is just healing.
Hi there.
Your doctor is right about pain meds, they really won't help for this type of pain. I am also on Gabapentin. I was on Depakote cream for about 6 months but had a nasty 3 week episode so my neurologist upped the prescription to this which is 3x's stronger.
I recently had some dental issues that also increased this problem, once the tooth that was causing the pain was gone, the pain decreased immensely. If your pain is centered around your jaw and tooth area it might be a good idea to look into an infected tooth. My tooth that I just had pulled on Sat was infected inside and looked fine outside.
I understand the no insurance thing. We cannot afford it through my husbands work and the state cut us off. But I recently got a medical credit card that can only be used at place like ... Dentists, medical doctors, pharmacies, and vets even. I would look into getting it. I applied Saturday morning and by noon they approved me for a few thousand dollars for treatment. This allowed me to get that tooth out that same day. Its called Carecredit. And yeah, its credit, which is hard for some people, but its better than paying out of pocket in emergencies. I know we are busted all the time and had not money for this, the credit helps pay for my meds too. Even though they are pretty cheap. Anyhow just a thought.
Good luck with your pain. I hope you find something that works good for you!
With the Gabapentin, the side effects are minimal. I have been taking it for a month, 3 times a day and there is some loopy-ness and hyperness, and you might feel really hungry at first too, but after about a week I noticed I was adjusting to them. It's a little like being drunk and high.... But I do recommend taking them on the weekends to start, especially if you work or drive a lot during the week. I think they are working good for me, I still have some smaller shooting pains occasionally, but nothing like before. Now I just need to kill these migraines.
Thank you for the info. I did go to the dentist about a month ago just to be sure that this was not a problem with my teeth because the tooth pain is new this time. All of the teeth on my right side hurt, even the front one but I thought it would be smart to rule out any bad teeth or gum problems. Everything looked great in my mouth, the dentist even told me he thought it was trigeminal neuralgia. So fortunately my teeth and gums are fine but unfortunately I have nothing to remove to make it feel better...The whole insurance thing really prohibits me from going to any type of specialist. The oral surgeon that I used to see is very expensive (even with his generous discount) so I just feel like I don't know what my next move is. I had carecredit in the past and it was nice but I wouldn't qualify now and the last thing my family needs is another bill, I've already spent so much. I appreciate that suggestion though and it will be something I can look into if our financial situation changes. I worry about the drunk and high feeling you mentioned because I can get pretty bad anxiety when I don't feel normal so that kinda adds to my hesitation,15 years ago that would have sounded like fun :). I do think that if I had type 1 which sounds like what you have I would be more eager to take it but because mine is more of a constant dull burning/ache most of the time I feel like I should be able to manage this some other way. It mostly just drives me crazy because it never doesn't hurt and I have to be careful how I chew or talk because that can aggravate it. I can't pull my hair up and wearing my sunglasses hurts. I can get really emotional about that but the really bad flare ups that make me want to go to the hospital only happen on average (so far) about 2-3 times a month so I don't know if that is severe enough to risk the side effects. What a crazy experience this has been, sometimes I can't even believe it's real. Every morning I wake up and it's there I think how could this still be happening. And here I am, uninsured, too paranoid to help myself with the prescription I was given and not rich enough to seek out other options. Good luck to you, I feel thankful that I don't get the migraines so I really hope you can get rid of those. Thanks again, I think the more I hear about peoples experiences with these medications the more educated and comfortable I can be if/when I decide it's time to take them. One question though, do you still use a topical medication and how do you feel about those? I'm assuming the Depakote cream was topical...
Ha, reading over this makes me feel crazy, this whole thing has me very confused. Sorry
Kate1978 said:
Hi there.
Your doctor is right about pain meds, they really won't help for this type of pain. I am also on Gabapentin. I was on Depakote cream for about 6 months but had a nasty 3 week episode so my neurologist upped the prescription to this which is 3x's stronger.
I recently had some dental issues that also increased this problem, once the tooth that was causing the pain was gone, the pain decreased immensely. If your pain is centered around your jaw and tooth area it might be a good idea to look into an infected tooth. My tooth that I just had pulled on Sat was infected inside and looked fine outside.
I understand the no insurance thing. We cannot afford it through my husbands work and the state cut us off. But I recently got a medical credit card that can only be used at place like ... Dentists, medical doctors, pharmacies, and vets even. I would look into getting it. I applied Saturday morning and by noon they approved me for a few thousand dollars for treatment. This allowed me to get that tooth out that same day. Its called Carecredit. And yeah, its credit, which is hard for some people, but its better than paying out of pocket in emergencies. I know we are busted all the time and had not money for this, the credit helps pay for my meds too. Even though they are pretty cheap. Anyhow just a thought.
Good luck with your pain. I hope you find something that works good for you!
Thank you, I looked up the trileptal and at least there were not a whole bunch of warnings that popped up right away like with the others. I have type 2 as well so that might be something I could call my doctor about. My doctor seemed very frustrated with my lack of willingness to take what she gave me but I'm 34 and the thought of potentially being on something like this for several years if not the rest of my life seems just plain scary but at the same time thinking that this might never go away is quite depressing in itself. Thanks again for the info and good luck with your recovery, I hope you get to be pain free. If you think of it please let me know if the pain is resolved by the procedure you had.
jc76 said:
Hi! I am absolutely the same way! I do NOT like taking medications of any kind! I was very open with my doctor and told him so. He agreed with me since I'm only 36 that I would have to be on these meds for so many years and suggested MVD. I agreed to the surgery, but he still wrote me a prescription in case I needed relief while I was waiting for surgery. He wrote my prescription for trileptal and said it has very few side effects. I did end up taking it and at first I was VERY tired. However, now that I'm used to it, I don't even notice it. It does help with the pain. I had MVD on Aug. 21st. I have type 2 TN and I still have some pains. I'm still taking the trileptal. :( Hopefully, my nerve is just healing.
hey bells-- FYI-- I am pretty sure trileptal is the same med as tegretol which is the same med as epitol... I think trileptal is the time release which was way more expensive than the generic epitol i got. The key with the cheaper stuff is to take your doses at the exact same time every day to keep the blood level even. They are all the drug oxcarbazepine as far i can tell...
Those warnings will scare the crap out of you.I throw that stuff in the garbage immediately.Basically they are there to cover the ass of the manufacturing company.Can really bad things happen?Yes..Is it likely?Heck no.Is it likely they will help you greatly.I would say in my own experience the answer is yes.An occasional blood test will check blood levels and head off any possible damage in almost all cases.
Well, actually even with my meds I still have a dull achey pain in my face but its tolerable to the point where I can manage it, or just deal. I get sharp lightning pains in my left cheek, I can't wear my hair up much either and I wear glasses so that irritates my nerve. I can't remember which type my doc said I have but I get it in both sides occasionally, bit constantly on the left. At first it was just a day here or there but recently is a daily thing. I can't be in the wind or around loud sounds, light can even bother it. I think its just progressively getting more intense.
We've had care credit before too, and not really something we can afford either, but with my tooth issue it helped.
The side effects of the gabapentin isn't so bad, it goes away relatively fast. It doesn't take all my pain away, I don't think anything does, but it helps take the edge off...
bells said:
Thank you for the info. I did go to the dentist about a month ago just to be sure that this was not a problem with my teeth because the tooth pain is new this time. All of the teeth on my right side hurt, even the front one but I thought it would be smart to rule out any bad teeth or gum problems. Everything looked great in my mouth, the dentist even told me he thought it was trigeminal neuralgia. So fortunately my teeth and gums are fine but unfortunately I have nothing to remove to make it feel better...The whole insurance thing really prohibits me from going to any type of specialist. The oral surgeon that I used to see is very expensive (even with his generous discount) so I just feel like I don't know what my next move is. I had carecredit in the past and it was nice but I wouldn't qualify now and the last thing my family needs is another bill, I've already spent so much. I appreciate that suggestion though and it will be something I can look into if our financial situation changes. I worry about the drunk and high feeling you mentioned because I can get pretty bad anxiety when I don't feel normal so that kinda adds to my hesitation,15 years ago that would have sounded like fun :). I do think that if I had type 1 which sounds like what you have I would be more eager to take it but because mine is more of a constant dull burning/ache most of the time I feel like I should be able to manage this some other way. It mostly just drives me crazy because it never doesn't hurt and I have to be careful how I chew or talk because that can aggravate it. I can't pull my hair up and wearing my sunglasses hurts. I can get really emotional about that but the really bad flare ups that make me want to go to the hospital only happen on average (so far) about 2-3 times a month so I don't know if that is severe enough to risk the side effects. What a crazy experience this has been, sometimes I can't even believe it's real. Every morning I wake up and it's there I think how could this still be happening. And here I am, uninsured, too paranoid to help myself with the prescription I was given and not rich enough to seek out other options. Good luck to you, I feel thankful that I don't get the migraines so I really hope you can get rid of those. Thanks again, I think the more I hear about peoples experiences with these medications the more educated and comfortable I can be if/when I decide it's time to take them. One question though, do you still use a topical medication and how do you feel about those? I'm assuming the Depakote cream was topical...
Ha, reading over this makes me feel crazy, this whole thing has me very confused. Sorry
Kate1978 said:Hi there.
Your doctor is right about pain meds, they really won't help for this type of pain. I am also on Gabapentin. I was on Depakote cream for about 6 months but had a nasty 3 week episode so my neurologist upped the prescription to this which is 3x's stronger.
I recently had some dental issues that also increased this problem, once the tooth that was causing the pain was gone, the pain decreased immensely. If your pain is centered around your jaw and tooth area it might be a good idea to look into an infected tooth. My tooth that I just had pulled on Sat was infected inside and looked fine outside.
I understand the no insurance thing. We cannot afford it through my husbands work and the state cut us off. But I recently got a medical credit card that can only be used at place like ... Dentists, medical doctors, pharmacies, and vets even. I would look into getting it. I applied Saturday morning and by noon they approved me for a few thousand dollars for treatment. This allowed me to get that tooth out that same day. Its called Carecredit. And yeah, its credit, which is hard for some people, but its better than paying out of pocket in emergencies. I know we are busted all the time and had not money for this, the credit helps pay for my meds too. Even though they are pretty cheap. Anyhow just a thought.
Good luck with your pain. I hope you find something that works good for you!
Thanks, that actually makes more sense since while I was researching the Carbamezapine I read that the oxcarbazepine that is like a cousin drug seems to be fairly successful without as severe side effects. I had considered asking to try that instead. Do you have an opinion or experience with Gabapentin vs. the Carbamezapine family? I've already filled the Gabapentin but I can't overcome the anxiety enough to take it...I feel crazy for hesitating because my face has ruined many of my days but every time I get them out my heart starts pounding. I know that living like this is not healthy but this is so difficult for me to accept. I feel like there has to be a way around this. I wish the Gabapentin was something that I could just take on bad days, I think I'd feel more comfortable if I had control over the medicine. When I was younger I just took medicine if a doctor told me to, no research, no anxiety and I never had problems so this is a weird thing for me. Since I've gotten older I worry about things I probably shouldn't...
tacocat said:
hey bells-- FYI-- I am pretty sure trileptal is the same med as tegretol which is the same med as epitol... I think trileptal is the time release which was way more expensive than the generic epitol i got. The key with the cheaper stuff is to take your doses at the exact same time every day to keep the blood level even. They are all the drug oxcarbazepine as far i can tell...
Thank you, I'm trying to reason and be logical with myself. Unfortunately I really feel uncomfortable with these medications, I probably should not have read all that scary stuff but the fact that they are for epilepsy made me want to know how they could work for me. I think my biggest issue is that they need to be taken daily. I think I would be much more inclined to go for it if I could take them on bad days. One thing I've learned from reading on here is I think I'm lucky to have type 2. I really can handle the pain most days it's the days where it's feels like I want to amputate the right side of my face when I feel desperate for medication. That's when I have gone for the numbing things for my mouth and ice and Advil for my face and nothing seems to work...I know that I have had days where I would take the Gabapentin if I knew it would relieve the pain soon after. Have you ever taken something that is a take as needed option and had any relief? I'll most likely end up trying the Gabapentin I just want to make sure I know what some other options might be.
Don said:
Those warnings will scare the crap out of you.I throw that stuff in the garbage immediately.Basically they are there to cover the ass of the manufacturing company.Can really bad things happen?Yes..Is it likely?Heck no.Is it likely they will help you greatly.I would say in my own experience the answer is yes.An occasional blood test will check blood levels and head off any possible damage in almost all cases.
Do you have lidocaine patch for face…and lidocaine mouthwash… I was able to stay on low or no trilepetal … Took as needed
Get a new doc and tell them you want only
those I just said and
or try
first try
only as neeeeeeded meds on that big old list!
You don’t have to try top 2 … But you do have to run to a nice doc.!
Epileptics take those to keep away seizure
We take them to squelch our nerve that is a pain type seizure state
Mood disorder take them to stop emotional seizure
My dad takes gab. For neuropathy… He only has one choice…
We have many!
Hope this helps Sorry, had baby teeny stroke and hard to get all my words after short work day!
I do have viscous lidocaine for inside my mouth. I haven't quite perfected that though because most days it I would have to numb the whole right side of my mouth and I always end up numbing more than I meant to. It's still good to have. I talked to a pharmacist today about lidocaine patches and he wasn't sure about using them on my face but I think I will pursue them. Thank you for your reply it has helped me to feel that it is ok for me to seek other options before giving in to the Gabapentin and I do feel like the doctor that diagnosed me is not the right doctor to treat me. She is very nice but just not equipped to deal with what I'm going through.
Kc Dancer Kc said:
Do you have lidocaine patch for face....and lidocaine mouthwash..... I was able to stay on low or no trilepetal ...... Took as needed
Get a new doc and tell them you want only
those I just said and
or try
first try
only as neeeeeeded meds on that big old list!
You don't have to try top 2 ...... But you do have to run to a nice doc.!
Epileptics take those to keep away seizure
We take them to squelch our nerve that is a pain type seizure state
Mood disorder take them to stop emotional seizure
My dad takes gab. For neuropathy..... He only has one choice......
We have many!
Hope this helps
Sorry, had baby teeny stroke
and hard to get all my words after short work day!
Yes Lidoderm patches…hundreds of us here have had them on face, you cut them up to size, and keep away from eye!
Keep goin!