I know bilateral TN is rare. The last two weeks I’ve been getting a couple zingers on the other side. They are exactly like my TN pain on the right side (except not nearly as painful). Then I get the same burning pain here and there before an attack.
I am not entirely convinced the TN is bilateral though. On wednesday I go to an oral surgeon for a consult to remove my upper left first molar (#14). My dentist wanted to do a root canal but god love him, after the one he gave me in August, I don’t dare let him have another whack at it (AND he won’t refer it out to an endodontist). I told him I want to the tooth out. Plus, I don’t want to go through the cost of a root canal just to have it fail and need to be extracted. It’s broken and causes pain sometimes and I think it’s responsible for the nerve pain I am experience on the left side. However, I am not an expert and have no idea if this is really the case.
I am still waiting for my new neuro to contact me for an appt. There are only 3 neuros in my city that deal with TN. So there were not many to choose from when my neuro retired in Dec. I guess the records are still transferring.
So in saying all that, does anyone here have bilateral TN?
I believe there are at least a few of us on here with bilateral TN, I am one of them. I’ve had TN over 10 years, but have been bilateral for only 2 of those. There are others who have been bilateral from the beginning of their suffering with this monster.
I really hope your pain on the left side then is not your TN going bilateral, so I hope you let us know how you go after the dental appointment. There is an article on dentist visits on the TNA website, I’ll try and find it again - something to do with local anesthetics most dentists use that contain epinephrine. This epinephrine has been known in some to trigger TN attacks, Dentists use these types of locals to provide longer pain relief during appointments, so if I or you can find this article, print it out and show it to your Dentist also (unless he already uses the short acting local injections anyway, in which case - there’s no issue
Take care Misty - hope to hear back from you soon.
Cheers ~ Kerry
I found the face pain Dental work information sheet - here is the link:
and there’s this one for good reading also:
(Quote:) Dental Issues
Kathy said there was\ a lot of coverage on dental in relation to TN. Dr. Henry Gremilllion, DDS, who
spoke at the conference, stated that if the dentists actually listened to their patients the diagnosis is there.
Many times the pain is not true TN but travels along the Trigeminal Nerve pathway, i.e., atypical TN, TMJ
and/or the need for a root canal. There is no definitive diagnostic criteria for TN. He warns beware of
having a tooth pulled, when it may not be necessary. May sure that your dentist understands TN and gives
the anesthesia that does not affect the Trigeminal nerve. Your doctor and dentist should confer before any
major dental procedure. Before a procedure see about getting and anti-anxiety medication, and work with
your neurologist to increase your meds before dental work. Your dentist should be flexible with your
schedule for when your TN is OK.
-Avoid any product with alcohol, lubricate your mouth, use a soft toothbrush (Crest is hard, Oral B is
good, infants toothbrush is good). Biotene products are good for mouth hygiene. Dr. Dennis agrees that
they are excellent products. The new generation of electric toothbrushes is good. Dr. Dennis said that if
you can’t brush at least use a washcloth to get the plaque off your teeth.
Cheers ~ Kerry
I know how you feel, I get those zingers on the other side but wondered if it was all just in my head (pardon the pun). When I mentioned it to the surgeon, he said - ahhh, not good, but I keep forgetting to tell my neuro. So I guess we will see. Good luck with your dental appointment and your new neuro. I hope you get some relief soon!
And thanks Kerry for the the info from the dentist!
Like you, I have some pain on the other side. Very slight but very much the same. I don’t have another doctors appointment until July and I can live with it. It’s not very bad. I take so much medication it would be hard to imagination that it would break through. Danni
I am a TN patient since from 1995. Initially it was on the left side only. Since a couple of years I have TN pain on the right side too. When pain started in the right side of my face, it was moderate in the beginning- only an uneasy tingling sensation here and there. But within two years it has increased greatly. Along with bilateral facial pain I have constant pain in my neck for the last two years. My neurophysician suspects that along with TN I may be having Temporomandibular Joint Disorder (TMD). However, I have not yet seen any Dentist. If anyone- from his/her own experience- can throw some light on TMD and its’ treatment I shall appreciate it greatly.
As we are all sailing in the same boat we all must wish each one of us to be at least comfortable during our pain periods.
Thank you so much everyone for your responses. I feel a little less crazy now. Yesterday I found out that I can’t get in to see my new neuro until May. My meds run out before then. They suggested I ask my general physician to do a refill…but I don’t have a GP yet because DH’s work just switched insurance and my old GP doesn’t take the new one. When it rains it pours! LOL
Ro - I go in to the dentist in about 9 hours. (noon PST). It’s just a consult to set up the extraction date. We shall see what the surgeon says.
I am very new to this website and found your quesiton on Ro’s webpage. I have recently been told i have Tn and as i have yet to see a specialist on monday, I too am having pain on both sides of my face. My bad side is on the left with pain in the cheek, nose, lips around the eyes and back to ears. however several days later i have noticed some similar pain on my right side. I have no other reason to cause this pain so I am thinking that it can be on both sides and plan to ask the doctor at my appointment. Gracie
I have bilateral TN. It started first on my right side 10 years ago and bloomed into full blown TN in 2003. My left side was begining with ATN at that time and this last August it graduated to TN. Lucky me. I have had two MVDs on my right side and the left side will be done in the next year. I hope you are able to beat the beast and get free of pain.
I am like you. I get a pain on the other side every once in awhile. I am scared to death its going to go haywire too, I guess we will wait and see. Good luck, God bless and take care. Danni
I just got pain on the left side of my face today, first time. My right side has been hurting steadily since Tuesday but not equally as intense. A few hours ago I found myself rather subconciously rubbing my face along my jaw line because that sometimes helps the pain. Only this time I was rubbing the left side. So, now I have mirror sensations of pain because even on the right side the pain has settled into my jaw line and lesser so in my cheek and temple area. That’s today, right now anyway. It can change at a moment’s notice. But again, this is the first time I’ve felt pain on both sides of my face at the same time or on my left side at all.
For those of you with bilateral pain, does it usually involve the whole side of your face on both sides or specific areas?
I know this is an old discussion but after seven years of wondering, I have now been diagnosed with bilateral TN. The opposite site would twinge here and there but then went dormant for years. It took a visit to the dentist for a crown and I have been having full blown attacks the last three months. It's like the other side of my face all over again. I am back on oxcarbazepine and the dosage of my gabapentin has been increased. We shall see if this works :( I am terrified of ending up with another MVD.
I don't know if mines bi-lateral but my whole head feels the nerves just under the skin. Plus to the right of my nose only.
And burning in the gums of my whole mouth.