A couple years ago a neurologist said it was some sort of "neuralgia". I suffer from extreme lower gum pain/constant aching, migraines along with it, and occassional shooting pain. It feels like severe teething! Help!! Does this sound like TN? Thank you
Yes, I experience those things to, but not every day. Mine changes a lot. I have atypical face pain, so I never know what I'm in store for. The aching teeth that feel like they're going to pop like popcorn, the earache, clenching my jaw from constant pain and tingling & numbness are some others. Sometimes it feels like the soft tissue in my mouth has been scalded with hot coffee. I get the shocks too, that go right down through a tooth.
Are you taking any meds? So far the only thing that's worked for me is 225mg of effexor/venlafaxine and additional opiates and muscle relaxants.
If yours isn't TN, I wonder if it might be late stage gum disease, which can erode your gums and cause painful infection. If it's TN, I'm very sorry to hear that. But glad you posted. I had teeth pulled hoping it was the source of the pain but of course it wasn't. I hope this info helps you. Hope you feel good as often as you can.
Hi Colleen,
Some days I wish it was gum disease. I have been to the dentist numerous times and my teeth and gums are good. I have also had teeth pulled. The soft tissue in my mouth is so raw at times. I find right around my period is the absolute worst! I am taking Gabapentine and Prozac which is not working. It's frusterating to have this! Some days I feel like I am completely loosing it. It sucks not having control of the pain.
Thanks for your message Colleen!
Hi I am sorry you are having pain I to get pain in my upper gums It does wound like TN I also take gabapentin I take 1200 mg a day how much do you take I also take prozac but it is for the the TN pain.. I do went and saw the dentist several times you should talk with your neurologist about migrane medicine and the different types of meds that they treat TN with. Also if you are not happy with your Neurologist go and get a second opinion it took 3 different Neurologist before I found a good one you might also try pain managment doctors If you have not already you should buy the book striking back it is very helpful
That's the problem. I am 4 hours away from any neurologist. :(
If you can see a neurologist once, they often do over the phone visits after that. Neuralgia is defined as nerve pain so you've already been diagnosed with that and perhaps your GP can help you get meds that help without going to a neurologist since you've already been diagnosed. Now I also get migraines but I've had those since I was a child. How long have you had migraines? If they just started with the nerve pain I would probably take a few days off and go see a neurologist to make sure it isn't more serious. It's rare but in some cases it can be a tumor that is pressing on the trigeminal nerve. If you've always had migraines it's probably just pain feeding into other pain. I get headaches when my face hurts but it's usually because I tense all my muscles when the facial pain comes.
It does sound like TN with the shooting pain and teeth part.
I have seen a neurologist and he diagnosed me with some sort of "neuralgia". That's all I got. I am waiting for an appointment at a pain clinic. I live in Canada and the wait times here are horrible. I go to my GP in a couple weeks and I'm going to ask for different meds. This is ridiculous living with this. It is so stressful!
i know.. .i feel like "losing it too".
even if it doesn't HURT level 10 or 8 or 6 it's like a feeling something's digging inside mouth... it can make you CRAZY.(and if i say that -doctors say IM CRAZY).
can't make this feeling go away...
it''s like the bone in my gums is wrong...
gypsylassie said:
Hi Colleen,
Some days I wish it was gum disease. I have been to the dentist numerous times and my teeth and gums are good. I have also had teeth pulled. The soft tissue in my mouth is so raw at times. I find right around my period is the absolute worst! I am taking Gabapentine and Prozac which is not working. It's frusterating to have this! Some days I feel like I am completely loosing it. It sucks not having control of the pain.
Thanks for your message Colleen!
I'm amazed by how many doctors don't understand or even know about TN.
It is the same for many rare illnesses. That is why Ben started all these groups. He understood the isolation and worry we all feel at times, when he was diagnosed with a rare illness himself. We often have to help our Dr's as we learn more about our condition than they know! I tasked my Dr with learning more about TN so he could help me appropriately. He calls a neuro for an expert opinion if I have severe pain that needs emergency care.I hope for good help for you when that appointment happens. I hate to think of you suffering so. Could your GP prescribe an interim booster or something?
Sorry I may be wrong about something I wrote. Here's something
4 - Tramadol can be habit-forming for some people.
Do not take more tramadol than has been prescribed for you. Taking more tramadol or taking it more often can cause dependency on it. You should also not stop taking tramadol without first consulting your doctor. You may experience withdrawal symptoms if you stopped it suddenly. You doctor will likely decrease your dose of tramadol gradually.
5 - Drug interactions are possible with tramadol.
Be aware of the following possible drug interactions:
- Carbamazepine reduces the effect of tramadol
- Quinidine increases the concentration of tramadol by 50% to 60%
- Combining tramadol with an MAO (monoamine oxidase inhibitor) inhibitor or SSRI (selective serotonin reuptake inhibitors) can lead to seizures or other serious side effects.
Gypsylassie, where are you? I’m in Edmonton, I can message you the name of my neurologist if that helps, and maybe your GP can refer you?? He’s very good and has many TN patients.
Let me know!
Mimi
I was replying to a different post here, sorry.
tkal said:
Sorry I may be wrong about something I wrote. Here's something
4 - Tramadol can be habit-forming for some people.
Do not take more tramadol than has been prescribed for you. Taking more tramadol or taking it more often can cause dependency on it. You should also not stop taking tramadol without first consulting your doctor. You may experience withdrawal symptoms if you stopped it suddenly. You doctor will likely decrease your dose of tramadol gradually.
5 - Drug interactions are possible with tramadol.
Be aware of the following possible drug interactions:
- Carbamazepine reduces the effect of tramadol
- Quinidine increases the concentration of tramadol by 50% to 60%
- Combining tramadol with an MAO (monoamine oxidase inhibitor) inhibitor or SSRI (selective serotonin reuptake inhibitors) can lead to seizures or other serious side effects.
I'm going to ask for some sort of pain killer. NOT Tylenol with codeine either! I also have an exposed nerve on one of my molars that I am getting filled tomorrow. So Im hoping that will relieve a bit of pain too.
Jackie said:
It is the same for many rare illnesses. That is why Ben started all these groups. He understood the isolation and worry we all feel at times, when he was diagnosed with a rare illness himself. We often have to help our Dr's as we learn more about our condition than they know! I tasked my Dr with learning more about TN so he could help me appropriately. He calls a neuro for an expert opinion if I have severe pain that needs emergency care.I hope for good help for you when that appointment happens. I hate to think of you suffering so. Could your GP prescribe an interim booster or something?
I have 24/7 pain in my teeth and I have found Amitriptyline at 100mg/day to be the most effective at combating this particular problem. It is well known for its abilities to fight neuropathic pain, and it's dirt cheap. It's definitely worth talking to your doctor. Feel free to message me if you'd like to know more. Oh, it's also used to prevent migraines, so it might help that too. It's been a life saver for me. I hope you find some relief soon.
Gypsy, the symptoms you describe are common in a mixture of Type 1 and Type 2 trigeminal neuralgia. As others in this thread have noted, you need to be tried on medications until an effective combination is found. If you are four hours from the nearest neurologist, then that doctor should be considered ethically REQUIRED to seek local help for you, perhaps with a doctor trained in emergency medicine and working at a local emergency room. If the practice won't do that, then report his sorry misbehavior to any government office or board that is set up to hear such complaints. Better yet, report it to a local newspaper and get interviewed for an article to raise the visibility of disorders like yours among local citizens. Don't take "no" or "four months from now" for an answer. Neither is an appropriate response to your level of chronic pain.
The medications which are most likely to help you are described in one of the cluster of articles under our Face Pain Info tab in the menu above. Most likely you may need a combination of one of the anti-convulsant drugs (Tegretol, Trileptal, Gabapentin) and one of the TriCyclic Antidepressants which are known to have a cross-action on neuropathic pain (Amitriptyline, Nortriptyline, about 8-10 others). Other booster drugs like Baclofen and Phenoiytin are also sometimes used. And as noted, you might also be helped by powerful narcotic drugs, though not all neuralgia patients are.
Go in Peace and Power
Red Lawhern, Ph.D.
Resident Research Analyst, LwTN
Hi Richard,
Thank you for all the information. I am hoping the pain clinic that I will "eventually" going to will help. The clinic consists of a neurologist, emergency medicine doctor, etc...
This is Alberta, Canada. Fortunately we don't have to pay for healthcare here but with that comes having to wait. I am seeing my doctor beginning of October and I am going to give him a little info about Type 1&2, and a list of drugs that we need to try.
Wish me luck :)
Hi Crystal,
I was previously on Amitriptyline and I had an allergic reaction (skin). I desperately want to try another antidepressant. Can you describe the pain that you experience? I would really appreciate hearing about your journey. Thanks Crystal!
crystalv said:
I have 24/7 pain in my teeth and I have found Amitriptyline at 100mg/day to be the most effective at combating this particular problem. It is well known for its abilities to fight neuropathic pain, and it's dirt cheap. It's definitely worth talking to your doctor. Feel free to message me if you'd like to know more. Oh, it's also used to prevent migraines, so it might help that too. It's been a life saver for me. I hope you find some relief soon.
I have a 24/7 constant aching, burning pain in my right upper teeth, gums, and surrounding areas. The pain levels can get quite high, but it's still not a stabbing pain, just a constant, aching, burning pain. Sometimes it feels like a fist is inside my tooth and it's squeezing the area as hard as it can. Sometimes my teeth feel like the teeth weigh 200lbs. Sometimes they just ache. The part the drives me insane is the 24/7 part.
Before the Amitriptyline, there were days that were so bad that all I could do was sit there and cry. While I still have 24/7 pain, it's nothing like before.
If you can't take Amitriptyline, can you take Nortriptyline? They are very close chemically, so you might not be able to, but you should certainly ask. If not, have you tried Lyrica? Or if you want another anti-depressant, I know my doctor likes to prescribe Effexor, which is an SNRI and is way different than Amitriptyline.
I wrote out a super long story of "my journey", I'll send it to you via private message after you accept my friend request. :)
Hi Crystal,
Thank you for your message. I was going to mention Nortriptyline to my doctor. I need to desperately start trying things. It is so hard to describe the symptoms to someone. I remember years ago when I was getting my widom teeth in it felt like "adult teething". i just wanted to naw on something to help relieve the pressure. Well this TN is 10x worse! It is constant aching, burning pain, almost like an extreme itchiness. I feel like there is so much pressure being built up in my gums at times. My face burns and I have shooting aches/pain once in awhile. Did I mention it's CONSTANT! Some days on a pain scale....a 6, other days I want to cry and pull my teeth out...pain scale 11!!!
I used to take Excedrin and it helped with my headaches and took the "edge" off the pain for a bit. Now Canada no longer sells them. I am scared to try narcotics. I was even thinking...."hey maybe marijuana would help"! LOL
God I am to the point of wanting to try everything and anything! This is just so unbearable!
Please send me your story. I would love to read it! Thank you!