New to the forum...I have recently been diagnosed with Trigeminal Neuralgia by a neurolgist in Florida. Although, mine seems to be more atypical. I have really had this condition for the past 4 years as my GP has been treating my pain with a myriad of drugs like lyrica, flexeril and codeine. I have been taking the medication on and off, and have had pain on and off. She just has never really labeled it as TN. We also have been living in Canada for the past 4 years and it is nearly impossible to get a neurologist so you really need to rely on the GP's help. This has been my experience. Anyway,my parents live in Florida so I paid out of pocket to see a neurologist there over the Christmas holiday. Anyway, I am being treated with 400mg of lyrica a day as well as 500mg of Naprosyn as needed 3x a day for pain.
At the end of November, I was having electric/aching pain in back molars. I saw the dentist and endodontist and they could not find a problem. I started the lyrica and within a week, I was basically symptom free. Fast forward to January 10, I was feeling good and STUPIDLY, I went for a dental cleaning. I also was lowering the lyrica dose as I "thought" I was better. Anyway, no sooner as the dental hygenist finished, and she is super gentle, I felt a burning pain in my bottom front gums. That lasted for days and now I am left with a deep dull ache that seems to be in either the gums or the chin .It feels like something is poking inside the gum. Pressing on the outside of the chin, close to the lip is very sore. I have been back to the dentist and also the periodontist and endodontist and they do not feel it is related to the teeth or I guess the gums for that matter.
My question is... Is it possible to have neuralgia pain sensation (ache) deep in the gum or chin area of the bottom front teeth. It also feels like there is an aching poking pain? Is the chin area not typical for TN pain? Could this really be dental? The teeth themselves don't hurt... it feels like it's in the gum. Even still, I want to pull out my bottom front teeth! The pain is more constant than intermittent although it doesn't wake me up at night.
Also, the lyrica does not seem to be helping? Does anyone have experience with lyrica? Is tegretol a stronger medication? I will probably have to go to the Emergency Room for this? I have a new GP as we are in another area of Canada and although she is quite nice, I get the impression that she does not have experience with these medications and would rather I see a neurologist. We have a 3 to 9 month waiting list to see a neurolgist. So the ER is probably my best option.
Sorry this is so long but just looking for advice as this episode has been going on for the past 3 weeks with no relief. Thanks....
If you lowered your dose of Lyrica and other medication you may need to slowly tilter back up your dose with the help of a doctor. Dental procedures can make the tn act up and do damage. If your in pain and can not tolerate it head to the ER. I’m sorry this so short I’m at work right now. Hugs and I hope you feel better. Hopefully another members can help out more.
Hi, C/J Mom (for the sake of brevity ;-), I am so sorry you are suffering at the moment. I am on 400 mg. a day of Lyrica, too. I did what you did and lowered the dose only to get sick and end up needing to up it again. This time even higher. My neurologist said not to lower the dose until I have been symptom free for a while and with their help. He also said that the Lyrica sort of builds in the system, so playing with the dosage can be a problem. Have you ever been on Tramadol? That is a pain medication that does not seem to make me as tired as codeine can. I keep a bottle of that around, and my regular GP was able to give it to me. It is used to treat different kinds of pain. However, I keep medication with codeine, too. I have my neuro pain in my chin and in my teeth all the time. That is partly why it took me so long to get diagnosed. I didn't go in because I thought I was having teeth problems. I agree that if you are in deep pain, go to the ER and let them help you. I've had to do that before, too. A lot of us here have had to. What you are describing sounds very familiar to me, and I am terribly sorry that your cleaning tweaked your TN into acting up so badly. Can you stand to keep the area warm by putting a warm thermacare against it? Or capsacin rub/ointment (which can block pain, but make sure to wash your hands)? Don't use the two together. Hang in there. Wish I could help more.
Thank you so much for the reply. I am glad to hear from someone who can relate. I too was puzzled that this pain was in the gum/chin and I was really thinking I was having a tooth issue. I had been lowering the dose of the lyrica when I felt better and now I am worse than ever. I appreciate your advice. My plan is to go to my GP as a walk in patient on Monday and see what we can do about the medications. If she is unable to help, I will just go to the ER. At the moment, the pain is moderate. Thanks again
booklass said:
Hi, C/J Mom (for the sake of brevity ;-), I am so sorry you are suffering at the moment. I am on 400 mg. a day of Lyrica, too. I did what you did and lowered the dose only to get sick and end up needing to up it again. This time even higher. My neurologist said not to lower the dose until I have been symptom free for a while and with their help. He also said that the Lyrica sort of builds in the system, so playing with the dosage can be a problem. Have you ever been on Tramadol? That is a pain medication that does not seem to make me as tired as codeine can. I keep a bottle of that around, and my regular GP was able to give it to me. It is used to treat different kinds of pain. However, I keep medication with codeine, too. I have my neuro pain in my chin and in my teeth all the time. That is partly why it took me so long to get diagnosed. I didn't go in because I thought I was having teeth problems. I agree that if you are in deep pain, go to the ER and let them help you. I've had to do that before, too. A lot of us here have had to. What you are describing sounds very familiar to me, and I am terribly sorry that your cleaning tweaked your TN into acting up so badly. Can you stand to keep the area warm by putting a warm thermacare against it? Or capsacin rub/ointment (which can block pain, but make sure to wash your hands)? Don't use the two together. Hang in there. Wish I could help more.
I have ATN in my front bottom teeth, so I would say yes - it is possible, although maybe not typical. Mine was caused by badly treated teeth infection and I had surgeries which possibly made my ATN worse. I also was on Lyrica (150mg/day); after having reacted badly to Neurontin, Lyrica seemed like a miracle drug, but after several months I one day realized it does very little/nothing to my pain. I then gradually came off the Lyrica and now I'm trying to cope with the pain using acupuncture and other "alternative" means of treatment. Best of luck with your treatment, Oldriska
Thank you for your reply. I am so sorry I went to the dentist. I got myself in such a bad situation. Thanks for the well wishes.
Kari said:
If you lowered your dose of Lyrica and other medication you may need to slowly tilter back up your dose with the help of a doctor. Dental procedures can make the tn act up and do damage. If your in pain and can not tolerate it head to the ER. I'm sorry this so short I'm at work right now. Hugs and I hope you feel better. Hopefully another members can help out more.
I have been on Toradol. I am going to look up Tramadol.
booklass said:
Hi, C/J Mom (for the sake of brevity ;-), I am so sorry you are suffering at the moment. I am on 400 mg. a day of Lyrica, too. I did what you did and lowered the dose only to get sick and end up needing to up it again. This time even higher. My neurologist said not to lower the dose until I have been symptom free for a while and with their help. He also said that the Lyrica sort of builds in the system, so playing with the dosage can be a problem. Have you ever been on Tramadol? That is a pain medication that does not seem to make me as tired as codeine can. I keep a bottle of that around, and my regular GP was able to give it to me. It is used to treat different kinds of pain. However, I keep medication with codeine, too. I have my neuro pain in my chin and in my teeth all the time. That is partly why it took me so long to get diagnosed. I didn't go in because I thought I was having teeth problems. I agree that if you are in deep pain, go to the ER and let them help you. I've had to do that before, too. A lot of us here have had to. What you are describing sounds very familiar to me, and I am terribly sorry that your cleaning tweaked your TN into acting up so badly. Can you stand to keep the area warm by putting a warm thermacare against it? Or capsacin rub/ointment (which can block pain, but make sure to wash your hands)? Don't use the two together. Hang in there. Wish I could help more.
Thanks for the reply. I was thinking of trying acupuncture. I don't know a lot about it and was afraid I would do more damage. Any advice for this or other methods that seem to work for you? Thanks Oldriska said:
Hi,
I have ATN in my front bottom teeth, so I would say yes - it is possible, although maybe not typical. Mine was caused by badly treated teeth infection and I had surgeries which possibly made my ATN worse. I also was on Lyrica (150mg/day); after having reacted badly to Neurontin, Lyrica seemed like a miracle drug, but after several months I one day realized it does very little/nothing to my pain. I then gradually came off the Lyrica and now I'm trying to cope with the pain using acupuncture and other "alternative" means of treatment. Best of luck with your treatment, Oldriska
Sorry to read of your struggles…definitely go to your GP on Monday as a walk in and request a referral for a Neuro! My experience over the last 11 yrs has been a wait of 4-8 weeks.to see a neurologist. My current Neuro I’ve been seeing for 5 yrs.
If you’d like the names of 2 great neurologists I can message you. I’ve seen a few over the years, I could save you the trouble of meeting some real jerks who don’t care.
Pain control is number one…tell your GP you suspect TN and would like to try one of the anti convulsants to see if it works… Emphasize you are in a pain crisis.
I’ve gone with horrid 10/10 TN pain to th local ERs here in town…all you’ll get is perhaps a shot of Demerol or morphine, neither of which touched my pain…it just helped me to sleep and be dopey. But by all means you can try, your experience might be different.
OMG I found someone in the Edmonton area! I brought my paperwork from the US neurologist (I have been diagnosed as Right Trigeminal Neuralgia), to my GP here in Canada and she faxed the referral to a neurologist on Jan 21. So I had no problem with the GP. According to the neurolgists office, as I phoned them, I have a 3 to 9 month wait. Yes, please message me names. But do I really have a choice? I thought they just assign you someone?? I am not sure of the system here as I am from the US and only have been in Edmonton for 6 months. We are not new to Canada as we lived in Quebec before this. Do you think the GP can prescribe something other than lyrica, she seemed like this was totally out of her realm? She wrote my lyrica prescriptions exactly like the US doctor ordered.
Liz
Mimi said:
Hi, wow, I'm in Sherwood Park!! Sorry to read of your struggles...definitely go to your GP on Monday as a walk in and request a referral for a Neuro! My experience over the last 11 yrs has been a wait of 4-8 weeks. If you'd like the names of 2 great neurologists I can message you. I've seen a few over the years, I could save you the trouble of meeting some real jerks who don't care.
Pain control is number one...tell your GP you suspect TN and would like to try one of the anti convulsants to see if it works... Emphasize you are in a pain crisis. I've gone with horrid 10/10 TN pain to th local ERs here in town...all you'll get is perhaps a shot of Demerol or morphine, neither of which touched my pain...it just helped me to sleep and be dopey. But by all means you can try, your experience might be different.
Let me know how you make out on Monday... (( hugs )) Mimi
Go to google images - put in "trigeminal neuralgia" and see allllll the images that you can choose from to print one off for your doctor.
Each of us has different pain paths - a visual might help them -- also refer them to this site.
I would also suggest the book "Striking Back" by Dr. Ken Casey -- it has 90% of the different meds and procedures we endure and how to make it thru this journey.
Get ANY doctor to prescribe lidocaine numbing mouthwash for your gums -- and you can get topical lidocaine for outside of face hopefully either or both! Works fast
Go to google images - put in "trigeminal neuralgia" and see allllll the images that you can choose from to print one off for your doctor.
Each of us has different pain paths - a visual might help them -- also refer them to this site.
I would also suggest the book "Striking Back" by Dr. Ken Casey -- it has 90% of the different meds and procedures we endure and how to make it thru this journey.
Get ANY doctor to prescribe lidocaine numbing mouthwash for your gums -- and you can get topical lidocaine for outside of face hopefully either or both! Works fast
I messaged you the names…yes a long as those Neurologists are accepting new patients, you can request your GP to refer you to them.
I’m from Montreal originally.
If Lyrica works for you then stay on it, but you can always ask her for Tegretol or Neurontin if the Lyrica isn’t working. Generally when first diagnosed with TN you are placed on an anticonvulsant, that being said type 1 TN and type 2 TN respond differently to meds and individually we all react differently.
Unfortunately it’s trial and error and it takes time getting to the right dose that works for you.
Many of the meds come with side effects for the first little while…but usually those go away with time…
I have TN 1 and TN2. Tegretol was the first drug I was put on after my diagnosis and it worked so well in just three days I couldn’t believe it! Unfortunately,after about three weeks, I became allergic, and had to stop taking it. I switched to neurontin, and currently take 2400 mg per day. It does not take the pain away completely, but did reduce it enough to tolerate.
I have been told that if Tegretol works on your pain, it is definitely TN.
I hope you can get your GP to prescribe one of these medicines for you ASAP!
Best of luck to you,
Christine
Thank you. I am definitely anxious to try a new medication. The lyrica just does not seem to be working.
Christine said:
I have TN 1 and TN2. Tegretol was the first drug I was put on after my diagnosis and it worked so well in just three days I couldn't believe it! Unfortunately,after about three weeks, I became allergic, and had to stop taking it. I switched to neurontin, and currently take 2400 mg per day. It does not take the pain away completely, but did reduce it enough to tolerate. I have been told that if Tegretol works on your pain, it is definitely TN. I hope you can get your GP to prescribe one of these medicines for you ASAP! Best of luck to you, Christine
Good to know, Mimi. About the side effects going away after a bit. I worry that the Lyrica will quit working since we have had to up it a few times. And, I wondered about the side effects of the other drugs, should I need them.
Chris’s mom,
I just want you to be aware that Lyrica is the newer sister drug to this drug and is more potent then it’s predasuccsor. Although some people find better releif with the ofther than with lyrica. The shock like pains are usually more successful treated with tergatol and oxycarbamzepine. It might be you need to taper off the Lyrica and try these or add a different medication along with the Lyrica. I have had heard several times the Lyrica works best when taken along with a second medication. You might want to go up to the face pain area, you see a list of medications there. Go over some of the medication there. Also have you tried any lidocaine patches or creams or gels. This usually numbs you up to get relief from the pain and the same with magic mouth was.
I hope today is better day for you.
Chris&Jack'smom said:
Thank you. I am definitely anxious to try a new medication. The lyrica just does not seem to be working.
Christine said:
I have TN 1 and TN2. Tegretol was the first drug I was put on after my diagnosis and it worked so well in just three days I couldn't believe it! Unfortunately,after about three weeks, I became allergic, and had to stop taking it. I switched to neurontin, and currently take 2400 mg per day. It does not take the pain away completely, but did reduce it enough to tolerate. I have been told that if Tegretol works on your pain, it is definitely TN. I hope you can get your GP to prescribe one of these medicines for you ASAP! Best of luck to you, Christine
It sounds like the dental procedure may have upset the nerves. I have to go soon too and I am sooooo nervous! I am going to ask my neuro about it when I go Monday. Good luck!
Donna
Go to the face pain info area there is information there about seeing a dentist with TN and what to do. It’s up at the top right of your screen. You can also do a search here on going to the dentist here using the search box right above the list of discussions.
Donna Cook Turnage said:
It sounds like the dental procedure may have upset the nerves. I have to go soon too and I am sooooo nervous! I am going to ask my neuro about it when I go Monday. Good luck!
