I have recently been diagnosed with TN after being unsuccessfully treated by my dentist and taking OTC pain relief and antibiotics that didnt touch the pain. My pain started in the top upper left hand side of my back teeth and at times goes to all my teeth (both top and bottom) in my left side, I also get pain in my ear and jaw. The issue and why I am questionning my diagnosis is that I dont have electric shocks of pain but I have an almost consistent throbing pain that comes and goes in bouts and can last anywhere from 10 minutes to hours. My Dr has put me on 500mg of carbamezepine which I can increase to 800mg but I don't feel right on 500mg and my balance is all off, BUT I still have pain, not as intense and its still there. The main triggers for me are eating and when I come in from a cold to warm environment. I can touch my face without setting of the pain but if I touch my head (above my ears) it is tender and hurts but not as bad as my teeth do. This all started 3 weeks ago and I have had pain every day since, please can someone respond if they have had similar symptoms or come across other sufferes of TN or any other condition that are similar to mine.
My pain is exactly the same as yours....I could swear its my teeth..but it moves all around...upper teeth,them lower teeth...then in the jaw....I also have just started having pain on my right side as well.I am now only on 500mgs on tegretol and I also take ibprofren..(not sure why that helps) I also find my pain is worse at night and is triggered easier then as well. There are MANY days that I think the same as you..."is this even TN?? Or something else" I am pretty fed up with it all I need to increase my meds soon as they are no longer as effective as they once were. Good luck and know that you are never alone in this!
My pain sounds just as yours. However, along with the constant pain in my teeth and jaw, I get the jabbing/shocking pain. Normally at night. It literally wakes me from a dead sleep and drops me to my knees. Some nights I don't have any pain and some nights it is every hour on the hour. I am on 200 MG of Carbamapezine 2x a day. The dr tells me I can increase to 1200 mg per day. It makes me dizzy/ unsturdy/ can't be productive throughout the day. I thought mine was an ear infection to begin with. That is how they treated me for a month. I was diagnoses last Tuesday and since then I have been to the doctor 2x and the ER 1x and I go back tomorrow to my doctor. I have a constant numb/tight feeling in my cheek w/ tnederness in the back of my head. I am so sorry you are going through this and I pray you get relief soon.
Its sounds like you may have more of the aching pain that I had in the beginning which is type II symptoms. You may benefit from the tricyclic anti-drepresant class drugs known to help with type II symptoms. Amitriptylene, & nortriptyline. You may want to ask your doctor about these. They can be helpful in combination with muscle relaxers as well such as baclofen to name one. Effexor was helpful for me and still is. I hope it gets better. :) Min
Thank you so much for your responses, although I am sorry that you guys all have this dreadful condition from a selfish perspective it is reasuring that someone at least can understand my symptoms. Min this is probably a question for you, do you know if I can take Amitriptylene and Carbamezepine together as I am scared to stop the Carbamezepine just in case I go back to having the horrific continuious pain I had last week but do have Amitripylene as this was the first drug my GP administered which my second GP changed to carbamezepine?
This sounds very similar to what I have, out of interest what type of TN have you been diagnosed with type I or type II, as like me you seem to have a combination of both and how long does each bout last for?
I have also had a small bit of pain in my right side of my teeth which I get when the pain is extreme, but have also had what feels like extreme sensitivity to the front inside of my teeth - do these symptoms sound familar?
I am interested to get the right diganosis for which type of TN I have, which I am starting to think is type I and type II which apparently is possible as the medication can differ.
All the best and I too wish you relief soon!
JLT said:
My pain sounds just as yours. However, along with the constant pain in my teeth and jaw, I get the jabbing/shocking pain. Normally at night. It literally wakes me from a dead sleep and drops me to my knees. Some nights I don't have any pain and some nights it is every hour on the hour. I am on 200 MG of Carbamapezine 2x a day. The dr tells me I can increase to 1200 mg per day. It makes me dizzy/ unsturdy/ can't be productive throughout the day. I thought mine was an ear infection to begin with. That is how they treated me for a month. I was diagnoses last Tuesday and since then I have been to the doctor 2x and the ER 1x and I go back tomorrow to my doctor. I have a constant numb/tight feeling in my cheek w/ tnederness in the back of my head. I am so sorry you are going through this and I pray you get relief soon.
Hello! My symptoms sound very much like yours. I too was diagnosed w/ TN after unsuccessful dental treatments. My main neurologist doesn't seem to differentiate between Type 1 or Type 2, but both a 2nd opinion neurologist and neurosurgeon said that my symptoms were definitely an atypical presentation of TN. I don't have the typical severe electric shock pains that are often present with Type 1 TN. My pain is a dull boring, pinching, aching feeling that is present 24/7 in my upper right teeth, temple, and head. I also have a sore feeling in my scalp on the right side of my head. It feels so much like my teeth that it's almost still hard for me to believe that it isn't (in fact I just went to yet another dentist yesterday in hopes that he would discover something that the others had missed, but of course that was a waste of time and money). I've tried a few different medications, but my current cocktail consists of gabapentin, nortriptyline, and hydrocodone as needed (along w/ some sinus meds, sertraline, & clonazepam for other conditions). All of these meds can be a real challenge to function on when it comes to working and dealing with normal day-to-day activities but hopefully in time we can find combinations that work for us. :)
I don't know if you can take Tegretol and Amitriptylene together, but I was on; Trileptal, Topamax, Effexor, Amitriptylene & Oxycodone. You would have to check with your doctor.
Quickie said:
Thank you so much for your responses, although I am sorry that you guys all have this dreadful condition from a selfish perspective it is reasuring that someone at least can understand my symptoms. Min this is probably a question for you, do you know if I can take Amitriptylene and Carbamezepine together as I am scared to stop the Carbamezepine just in case I go back to having the horrific continuious pain I had last week but do have Amitripylene as this was the first drug my GP administered which my second GP changed to carbamezepine?
From the feedback received (a massive thank you to everyone who responded) and from the pain I am currently in I do think I have both type I and type II, as I have bouts of pain that can last hours (typical of type II) but then have severe stabs of pain which dont last very long at all (typical of type I), I am going to book to go back to my GP as the Carbamezepine 500mg that I am on isnt touching the pain and the pain killers they have given me just turn me into a non-functioning zombie. Does anyone find that their pain is triggered from when they bend over (where your head is tipped down) and if so have you had an MRI and what was the result? I haven't had an MRI yet and my GP didnt think it was worth it as I have classical TN symptoms and the only treatment my GP would recommend is medication, but I do think I must have a blood vessel pressing on the nerve otherwise why would the pain trigger when blood flow increases to my head??? Also have any of you found any meds which means you are completely pain free that don't make your feel all dizzy? For the severe stabbing teeth pain I found Oragel works quite well as it stops the pain straight away, although its a shame you can't apply this into your ear and head as I find once one place stops hurting, pain in the other areas becomes more apparent! You are also only supposed to use it 4x a day!
Sorry for so many questions, just trying to get as much information as possible and make the best out of this condition.
GinRebekah said:
Hello! My symptoms sound very much like yours. I too was diagnosed w/ TN after unsuccessful dental treatments. My main neurologist doesn't seem to differentiate between Type 1 or Type 2, but both a 2nd opinion neurologist and neurosurgeon said that my symptoms were definitely an atypical presentation of TN. I don't have the typical severe electric shock pains that are often present with Type 1 TN. My pain is a dull boring, pinching, aching feeling that is present 24/7 in my upper right teeth, temple, and head. I also have a sore feeling in my scalp on the right side of my head. It feels so much like my teeth that it's almost still hard for me to believe that it isn't (in fact I just went to yet another dentist yesterday in hopes that he would discover something that the others had missed, but of course that was a waste of time and money). I've tried a few different medications, but my current cocktail consists of gabapentin, nortriptyline, and hydrocodone as needed (along w/ some sinus meds, sertraline, & clonazepam for other conditions). All of these meds can be a real challenge to function on when it comes to working and dealing with normal day-to-day activities but hopefully in time we can find combinations that work for us. :)
I used to get that pain when bending over and after being on Effexor for several months that subdued. I won't say it completely went away. That it did. I still can;t bend over for long periods of time because its just not a good position for me. But I don't get that throbbing horrendous pain anymore. I am still on Effexor, I take 75 mg per day. I also take 1200 mg of Trileptal and 200mg topomax recently increased. Pretty sure the Effexor is what got rid of pain tho. Because that is all I was on at the time. Also it remove the burning pain I had in my eye tooth and all along my upper right teeth. I hope it never stops working...
Sleeping in a recliner can help too. For some reason laying down makes the pain worse. I guess it's the same bending over with your head tipped forward. It's just puts too much pressure on the blood vessels, thereby causing the pain.
Thanks very much for your response, I am going to ask my GP about Effexor and see if I can be put on that, really appreciate your help on this! Best of luck you get pain free also.
Min said:
I used to get that pain when bending over and after being on Effexor for several months that subdued. I won't say it completely went away. That it did. I still can;t bend over for long periods of time because its just not a good position for me. But I don't get that throbbing horrendous pain anymore. I am still on Effexor, I take 75 mg per day. I also take 1200 mg of Trileptal and 200mg topomax recently increased. Pretty sure the Effexor is what got rid of pain tho. Because that is all I was on at the time. Also it remove the burning pain I had in my eye tooth and all along my upper right teeth. I hope it never stops working...
It sounds like classic type 2. I have both. The tenderness and aching in ear, mouth, teeth and brow area. I do better taking neurontin and cymbalta. I didn’t think cymbalta helped till I couldn’t afford it and went a few days without it. It does help. I also get flares with wind. No matter the temp. Beach breeze or bitter winter wind. They both hurt. I hope you find what works for you.
As of yesterday I am taking Amitriptylene and Carbamezepine together. I have not been told which type I have. I have just been told I have TN. I have been diagnosed by 2 different physicians. My pain is mostly at night. Each episode last about 15 minutes, keep in mind i have the constant nagging pain as well all day. I have found (this may sound crazy) eating meat brings on attacks at night. I guess the jaw movement. I also have to eat very small bites so my jaw do not have to move as much. I have pain in my bottom molar teeth. The pain has almost moves to half of my bottom lip. I have sever pain in my ear ALL day.
My physician told me to give the meds 3 weeks to start working. In 3 weeks if the pain doesn't go away, she will then send me to a neuologist. My insurance requires a referral.
Girl, I was a hot mess in the doctors office yesterday. I cried and cried and cried on her. I just told her something has to be done, I cannot live like this.
I completely sympathise, although strangely I suffer mostly all day and havent really been too troubled at night. My GP has changed my meds and taken me off Carbamezepine and has increased my dosage of Amitriptylene to 100mg which is taken at night. I have been getting through the day with using Super Strength Oragel which is a tooth get which I put on my gums (top and bottom) which numbs the area for a while. Keep thinking that there has got to be a better alternative to this!