It all started this year with shocking pain in a tooth I got a root canal that seemed to go bad next thing i know it was one tooth after another I had 4 teeth removed so far not knowing what was going on and very confused and in pain I went to my oral surgeon who suggested TN i was very much in denial..but coming to my senses it can't be anything else after reading alot of your stories and the excrutiating pain i continue to have every morning i wake up til I got to sleep...I tried both tegretol and gaba they both seem to intentisify my issues anyone else experience this or do I just have to work past it?? I'm really scared I so need a break from the pain advil seems to help a little but I have to take 4 pills
Hi Amanda ~ I can relate to your story somewhat. I haven't had any teeth removed yet, but that is only because I haven't been able to find a dentist who would do it. I have had a root canal, which gave me no improvement and may have actually made my pain worse. I can't really tell for sure anymore. I tried Tegretol at first and it did help a little, but it gave me a rash so my neurologist made me stop taking it. Then I tried Trileptal, which definitely made my pain much worse. Now I'm on gabapentin, which seemed to help a little bit at first but as time passes it feels like its effectiveness could be fading. I'm also on nortriptyline, but the only change I can feel from it is worsening depression and irritability. I find a little relief from Lortab, but not nearly enough. So far I've yet to find anything that completely relieves the pain. I wish I had some helpful advice to offer, but at least I can and do understand your frustration and pain.
thanks for replying ginny yeah i guess my I just got unfortunate with the dentist i had luckily they arent any upfront really. I'm sure glad i saw my oral surgeon and he was smart enough to know something wasn't right! I'm off the meds right now. I got a MRI yesterday..did you ever have one done?
Yes, a few. I had the last 2 done this on Monday and just got the report faxed over today. This time they did one with contrast and one without contrast with a thin cut over the trigeminal nerve area at the pons. My report bascially says that the exam is unremarkable, except for a single punctate hyperintense focus in the left frontal white matter which has been seen on prior studies and appears to be stable. The trigeminal ganglia are normal. I have no idea what my neurologist will say about this. Maybe he'll say that I don't have TN afterall and I've spent months enduring the terrible side effects of these meds for no reason (other than minimal pain relief). Ugh ... It's just been one of those days. :(
Of course I would gladly accept that news from the doctor, as it would be better to have dealt with temporary medication side effects than have a life sentence of TN. I'm just frustrated and I believe that my neurologist has become frustrated with me (because I went elsewhere for a second opinion) so I'm nervous about what he'll say and how he'll act during my next follow-up. I hope he doesn't just dismiss my symptoms altogether because of a normal thin-cut MRI. Sadly, I feel dependent upon him for prescriptions to find any sort of relief at all. He isn't very educated on TN and there aren't many neuros in my area who are. Hope you're feeling okay today. Please keep us posted on what you find out from your MRI. I better try to get back to work. ;)
Hi, and I think I am having the same situation with meds. My neuorologist first prescribed Trileptal but I was still having to take Ibuprofen to help knock the edge off of the pain. I noticed also that I was beginning to get really dizzy and disoriented every time my neuro would increase the dosage. Last week it got so bad that I ended being really sick. My neurologist is now switching me from Trileptal to Gapabentin. I don't know what to expect but my neurologist began treating me as if I am bothering her with questions.... So I am trying to locate another who may be a bit more compassionate to what is happening to me. I am really sorry that you had teeth removed because the first person I went to for pain was my dentist but she sent me to the oral surgeon, first who suggested a CAT scan... I have had an MRI which was normal and that is pretty frustrating when no one can answer why the pain is there... I am not going to tell you to work through the pain because I know too well it is real. I will advise you to really find a doctor who is willing to work with you through this because if you are like me- you still have a lot of questions and most importantly a lifestyle, including a job, in which you wish to maintain.
maybe try other kind of med (or in combination) - i use now CYMBALTA - it does not take the pain away.. .but it helps a bit to cope with it. i still get pain for hours - but i can cope with it more a bit. even "a bit" is something.
@ginny thats pretty messed up if ur neuro is mad you went to another one i had the same situation with my dentists cause i wanted another opinion we are paying them to do a job and for them to not understand we are the ones suffering we have the right! I'm in the process of finding a neuro doc I hope I can find a good one seems like they are all egotistical.
@daydreamer-yah evrytime i go back to work i end up in alot of pain i think the more stressed I am the worse it gets I'm a server so there isn't a day there without stress ..its impossible. i've been there for 10 yrs they have been pretty understanding so far I may have to take a actual medical leave, i had to move back in with my parents at 30 yrs old because of this as if wasn't stressful enough! And I would def. try to find a better neuro doc. like i said your paying them If they studied this disease they should know we are already in a fragile state that just shows ignorance to me.
@Nir morita- I acually had to take 2 ativan( which is anxiety medicine) yesterday to do my mri ..which i swear it helped for awhile i've had severe anxiety all my life which has intensified with the events of TN but i'm guna try it again today to see if my mood and pain improves. Ahhh I just wana rip my tooth out today
I also thought I had a problem with tooth. I was diagnosed by my ENT. I tried the same meds that you used to no avail. The only thing that helped me was Lyrica combined with Cymbalta. I had complete relief, but recently increased Cymbalta for depression after extensive back surgery and gained 10 pounds. That my not seem like a big deal to you, but I lost 60 pounds after weight loss surgery. So I stopped the Cymbalta but now I am having some pain every day. I am just not sure what do do. The pain isn’t bad, but it is annoying.
Holy cannoli that sounds exactly like what happened when I started having pain! I had a TON of dental work and it started shortly after (always on the left side where the work was done!) Taking gabapentin everyday helps but it takes a bit to build up a therapeutic level, then when an attack hits I can increase the dose. Took trileptal, guess it helps a little but I'll take what I can get. It aches every day but if I actually chew or drink something cold and it hits that left side it definitely is a zinger for awhile. My neurologist is convinced that all the dental work caused nerve damage, so I'm seeing a neurosurgeon next month to discuss MVD surgery. I did have an MRI done recently with and without contrast. It was unremarkable but it is difficult to see nerve compression on some MRI's per my doctor and as a RN I know that. And I truly do believe that my neurologist is correct about the dental work being the cause of this, I never ever had anything CLOSE to the horrible pain attacks bring on. Talk to a neurosurgeon about gabapentin doses and what he/she thinks about the dental work you had done. Good luck, I hope you feel better soon! :)
My teeth are fine, I used to think I had a toothache but it was always the TN, my xrays and my exams were always normal. I have noticed that something cold on that back tooth (my bottom left) is a MAJOR trigger for an attack, so avoid anything cold on that side. How about yours?
I do too. It drives me CrAzY! I also obsessively mess with it with my tongue because it feels like something is stuck in between it and the adjacent tooth. The more I touch it the more it hurts, yet the dentist and endodontist can find nothing wrong with it. I know how you feel. :(
jstagrl29 said:
I have a tooth.on the top.that i.want to rip out everyday
I had to laugh out loud when I read GinRebekah mention how obsessively you mess with that particular tooth using your tongue. I do that all the time and I fear at some time I may rub the enamel away...... I try to stop but like most of you it just feels as if there is something caught between the tooth or stuck down in the gums. I think the crazy part is I do this knowing how sensitive that area is and how it tends to trigger the pain.
Hey my doctor switched me from Trileptal to Gabapentin. I was beginning to get really dizzy and sick with Trileptal. Has anyone experienced any side effects with Gabapentin?
Well has your doctor tried increasing the dose or maybe trying a different medicine. My goodness. I feel for you. I hope something works soon. Maybe it's time to look for a different neurologist???? :(( I wish you luck. I am sorry things aren't going so well right now..
Thanks for your response, this particular Neurologist was beginning to treat me as if I were the problem. She mentioned that perhaps I should think about going to a psychiatrist for my issues because she felt I was experiencing the dizziness, queasiness and migraines due to stress and not the meds.
I decided that day I would try a new neurologist because being told I need a psychiatrist was a bit harsh. I feel there are many of us who before TN hit, were not taking any medications. Many of us barely took aspirin or Ibuprofen because we were "fine". I think neurologists need to be a bit more understanding that the effects of medication for us may be a bit higher because our systems aren't accustomed to medications. I was getting loopy from Ibuprofen.
Anyway, I am now on Gabapentin and my primary care physician is willing to be the go-to doctor for me and has referred me to another neurologist. :O)
Oh, and I took a copy of the information about the questions we should ask our physicians with me and my primary care physician was quite impressed and felt that the questions were worth asking and said he would use the questions to help locate me another neurologist.
Daydreamer, 10 yrs ago I was experiencing many neurological symptoms and I got sent to one doctor after another, lots of tests, different specialists etc.
I had many a doctor want to put me on Anti depressants because they couldn’t figure out what was wrong with me.
I was livid.
Finally a doctor suggested a physcologist , I said ok, I’ll go just to prove to you and all the other doctors/ specialists I’m NOT crazy.
I went for a few visits and the professional therapist said to me " you are NOT depressed, nor are you crazy!" he said I have some anxiety which was completely normal for someone going through a health crisis.
I made him fax his reports to ALL the doctors who made me feel crazy and were pushing anti depressants.
It was so validating.
The most important thing I learned from my experience is that “I KNOW” my own body, I need to trust my instincts and be my own advocate, doctors don’t always know what’s wrong.
I was lucky that my GP believed in me and treated my symptoms, I learned to live with not having a label for what was wrong with me.
All this to say, trust yourself.
I once had a popluar well respected neurologist tell me 10 yrs ago ( when I had TN for the first time) that I couldn’t possibly have bilateral TN because it was rare!
I cried all the way home, my TN responded well to Tegretol several doctors confirmed diagnosis, I felt and lived with the pain and yet here she was telling me I didn’t have it??? Because now it was on the other side??
Yup, never saw her again…
Anyways, good luck to you, it may take awhile to find a good fit with a good neuro, but it’s so worth it when you do find one.
(( hugs )) Mimi