I have been suffering non stop with pain that is in my gum tissue. It is a pinchy electrical feeling, but not necessarilly pain. It never stops except when sleeping. Have been taking Gabapentin and now Nortriptyline. Was wondering if anyone know if there is an oral capascacin that worked for anyone, or if there is any kind of numbing gel that will last for hours instead of minutes. I have been to two pain clinics and they had no idea what to do and the nearest orofacal doctor is 8 hours away.
I use orajel and ambesol in liquid using cotton swabs leaving it on my gums. Also oddly enough also some of the sore throat lozenges and sprays has bought me some time as well. I even carry some around if it starts up again. I just keep swabbing the gum area and usually get temporary relief from that symptom. Be careful one time I was exhausted and used cotton balls with the swabs soaked in the ambesol in my mouth then fell asleep. Good luck I hope something works.
Thanks Abby, I will try that. Just wondering, what type do feeling do you have in your gums? Is it pain or a pinching/tingling? How long have you had this and are any medications working for you?
Weary.... The gum pain goes from achy, mild burn, some pinching/tingling and then like gasoline poured on the gum then a match put to them. It can go from no pain to any of the above type pain never know what's going to happen. Then it goes from bad to worse the entire inside of my cheek is on fire. Then there's couple of teeth that will ache like a serious toothache. So I can some, all or none of the above. At it's worse it's a 24/7 marathon with drugs and a screaming hot towel pressed over the entire side of my face.
So I've had this for almost 10 years with the usual story. I have had an MVD, and Gamma Knife that both failed. This site has been a BIG help, because my symptoms were always TN2. I've been through many meds, but again between this site and watching Dr. Casey's talk I headed in a new direction. I'm on gabapentin 600mg, 3X day, amitriptyline 50mgs at bedtime and percoset. Now with a new Doc making the change over to Lyrica instead of the gabapentin and the amitriptyline just added about a month ago.
I'm really hoping this new brew works, but some tweaking might be needed. So far so good, but it takes time. It seems to me the key is determining what type of TN you have and go from there. I figured out the over the counter stuff a few years back, but orajel, ambesol and the others numbing agents help. For me those work and can stop working then work again. I don't know why, but each TN attack is different. The hot towels for me were a lucky break and got me through many attacks too.
What's your TN story? I hope some of those tips help, but others have found combinations that work for them. It's all such an individual thing....
Abby, I am sad to hear the suffering you have been through all these years. I will pray for you to have better days. I am currently trying to get a diagnosis. It is nearly impossible for any of these doctors to tell you what is wrong, by that I mean, if there is nerve damage then which nerve? I am not 100% convinced that I have nerve damage, although I may be in denial. It is just that I do not have pain, and I am grateful for that. I just have a non stop crackling feeling but it is only when I touch it with my tongue. It is in one area of my gums where the two teeth were pulled. When I wear a night guard or retainer and it is covered I feel fine. I am taking all of this medicine and nothing helps. One doctor I consulted thru All Experts .com thinks I may not have nerve damage, but that the doctor damaged the bone in my jaw during the first extraction, which I remember the the doctor puttin all of her weight against my face for a half hour trying to extract in three seperate pieces. I don’t know. I do know my hair is falling out from the medicine. I am not sure if it is the gabapentin that I have taken for 4 months now at 1200mg a day or the Nortriptyline 50 mg at bedtime that I just started three weeks ago. Have you ever had your hair fall out from the meds? I also find that if I take an anxiety med before bed and I sleep well, I have better days. If I don’t sleep well the next day I am a mess and I do nothing but cry uncontrolably for hours. On a brighter note, my older son he is 23, got engaged tonight , so it was a joyous day. I also have a 13 year old boy that keeps me going! Hope you have a great holiday…take care. Thanks for answering my post…
Thank you and I will pray for you as well. Ok, here is how the diagnosis for me went down. My neurologist was pretty sure I had TN so she sent me to an excellent neurosurgeon here in Houston. He felt pretty sure I did have TN, but he used tegretol as a diagnostic tool. So filled the prescription and waited until the next big pain spell. I took it and it worked within 30 minutes the pain was gone. It was 11pm that night and almost called everyone I knew that's how excited I was. It worked like that a couple more times, then stopped working. That's a whole other chapter in this mess for me. I have read on this site or somewhere that's how other folks have been diagnosed as well. So that might be one idea to either rule in or out TN. The one thing I've learned is that there is no 100% for sure about anything with TN except for pain! Some people find that tegretol works for them and they can stay on it. So that might be an idea to present to your Docs.
You might also want to get a copy of Striking Back - The Trigeminal Neuralgia and Face Pain Handbook. It covers the majority of treatment options and descriptions of types of TN and/or facial pain. I have it and have re-read it as things changed with my pain situation. Use this site and under the face pain info tab there is plenty of information. Just hitting that tab has a entire outline that is very useful. When I first got on this site I missed it, but they have covered plenty. Try not to get overwhelmed I know easier said then done. You might want to start a journal or a word document describing what's going on in particular how the pain feels. Your own reference materials will be helpful if you have to go to another Doctor's appointment. I have them just because my anxiety level is so high I either forget things or just start talking.
As far as my hair falling out not really. I thought it was, but sometimes it feels like I am just looking for things. You might want to ask your pharmacists if that could be the case. They can be more help than calling the doctors office. Ok, I have gone on too long. Let me know how you are doing and if I can help. I've been at this for a while so just ask, no problem. Have a merry Christmas!!! Take care... One more question, why did you have the teeth pulled? Sounds like all was ok until that point.
AbbyI had my first tooth pulled due to a botched filling that ended in a root canal and crown prep that was do painful. From there I had this feeling like something was jammed between the two teeth next to the extraction. Then in desperation I begged to have the other one pulled and have been like this ever since. Had a very bad day today. Although I got An appt at the end of Jan at Case Western in Cleveland with a specialist. I also seen my primary today who increased the nortriptyline to75 then 100 mg if I need too go that high. I find that taking a nerve pill really helps but not sure if I want to start depending on them. I had a major crying pity party for myself and for my family that also endures this disease today. I wore myself out going to sleep now. Keep in touch!!
Sorry Weary! I don't know what to tell you. I'm so sorry.... Usually like my case all the dental work proceeds the diagnosis. No telling what happened with you, but I hope you get to the bottom of this quickly. It's perfectly normal to have a pity party and crying your eyes out. The pain will just wear you out. Have they given you any pain meds? I hope so... whatever to keep you from suffering. I feel bad for you - been there. Let me know how things are going.
Thanks Abby… I feel a little better today. Btw… I do not have any pain medicine but I have started noticing that if I take an anxiety med (I have a prescription from months ago) it really lessens the “feeling intensity” I guess that makes sense since it is a nerve medication. It makes me wonder though if anxiety could make all of this occur. Have you ever taken an anxiety med? Did it help? ThAnks for the help!
Weary…aka Linda
Happy to hear you are feeling better. I already take Xanax for an unrelated anxiety issues, but yes if an anxiety drug helps you that's great. Sounds like it takes the edge off the pain. I understand and the pain brings on more anxiety sometimes for me. Just be sure that you run the drugs and quantities by someone say a pharmacist to stay safe. If it helps you get sleep I think that's great. For me sleep is very important, because if my pain is really bad I cannot sleep. Does any over the counter pain meds help out? Your next appointment is the end of January? That's a long wait, but been there too. Take care! If you have any questions I'll be happy to answer from my experience with the mess!
Specislist had a cancellation today so i drove 3 hours to see him. He said not sure if nerve problem but. Def have tmj/ tmd And prescribed muscle relaxers and a compound of meds ( lidocaine amitriptyline and a anti inflammatory) that will go on my gums directly. Also soft diet and ice and heat.
My jaw wasn’t popping but my trigger points especially the masseter muscle hurt like hell. He wanted to inject a nerve block into the side of my face to release the spasm but I was too afraid to do it. Going back at end of month might try then if still this bad. Have you ever had an injection like that and did it help? Anyway… Not sure if sll this will help but he said even with a nerve damaged he would still treat like this and told me to stop touching it with my tongue. I did like the doctor. He is an orafacial pain specialist that teaches at a university dental school. Board certified with aaop.
Sorry I rambled on and on. How are you feeling? I hope you are doing good! I appreciate your messages as I feel like you know what I feel like. My back tooth still aches and he wasn’t sure about what is causing that. But hey I’ll take that over this nerve pain any day!
Glad to hear you got in early to see the specialist. By now you have had a chance to try the new meds, so are they working? Did he rule out or rule in TN? What's TMD? Sorry for all the questions. I've stayed away from nerve blocks so far, but that's because of my circumstances. The nerve block might be what works for you. If you feel comfortable with what this Doctor recommends that's great. If you want you can get a second opinion and see what they say. The thing is as you will see on this site each person's treatment plan can vary and I'm guessing that's why it's so hard to treat. All you can do or any of us is to keep trying until we find the combination that works. This treatment plan maybe the trick and that would be great. I hope you are feeling better. I'm feeling ok. I'm moving from gabapentin to Lyrica and the transitions are hard. Only time will tell with my case, but I know the drill! Take care and let me know how it's going.
http://en.m.wikipedia.org/wiki/Temporomandibular_joint_dysfunction
Abby I have attached a link to a page that explains what the Dr. Feels I have.
I believe he has ruled out TN but said that my trigeminal nerve is most likely inflamed as a result of the tmj/tmd. He pushed on several trigger points in my face and mouth that sent me out of the chair with pain. He is prescribing a compound to put right on my gums and muscle relaxer at bedtime because I clinch all night ( all day too ). I now have to make a conscious effort to not move my jaw around or feel for the pain with my tongue as that aggravates the masseter muscle in my face and send pain to my teeth and gums. Heat and ice all day too. It’s only been two days but so far less pain! The injection is not a nerve block it is some kind of local/steroid to calm the muscle…but still wary of it! Going back at the end of the month to make a new splint . I guess only time will tell. Let me know if you want me to ask him anything for you because he has several credentials and is a certified oral facial pain specialist. Talk to you soon!!! Hope your doing well on your new medicine !
Thanks Cleo…I really felt like I found someone who knows about orofacial pain. Long road ahead but thankful that he is helping me go down it! Glad to hear they helped you too!
Weary.... In your note you sound better, really you do! I looked at the link and it all sounds like it makes sense and glad to hear the meds are giving you some relief. Also the muscle pain with the trigeminal nerve be irritated has created a big problem! The Doctor recommending a block might not be such a bad idea for you. I have different reasons for avoiding blocks, because it could irritated or damage my Trigeminal nerve further. That's due to all the other procedures failing, but hey that's my situation. Now if you are still unsure about the block I wonder if a steroid pack might work? I have no medical training, but I have been on several packs of steroids. They have worked for the most part and not so much on other occasions.
Maybe you get the office to point you in the direction to research the block? What are your concerns with having a block? I guess what I'm trying to say is this sounds hopeful and He/she is trying. Ok, have gone on too long already. Glad you are feeling better and Cleo's a fan of where you are going! I'm feeling pretty well and almost done with the medication transition. The good news is the last couple of mornings I've not had the screaming head aches. That is a good thing! Take care and look to hear from you soon.
going to sleep now. Keep in touch!!