Tegratol…a blessing… A curse…I was on it for 18 months…no liver damage. After my mvd… And withdrawal from tegretol…I noticed… I couldn’t hold my pee…the way I use to…took a few months to get back to normal. I was on 1200 milligrams a day…and when I went for my ore surgery screening the nurses…everyone who read my chart…was very HAPPY… I was getting off the drugs! It was more what they didn’t sA that told the story to me… I loved, appreciated it for the pain free days…but I was a walking zombie!!! And through my fog…I knew surgery and a chance at normal…was better than the drugs for me. I have time gaps…2 years my life…just gone from my head…lol…I remember the pain!
Rick Bruce said:
Dear All,
This thread , with all the responses, pretty much hits on all the bases. So I just have to ask everyone, the downsides of taking Tegretol/Carmamazepine 100mg X4 and Gabapenten/Neurontin 300mg X4 daily as I have since early 2009? This combo has kept me from having # 8-10 Face Taser attacks for the duration. However, my memory has gotten terrible (probably the Tegretol)…
I love you all and would appreciate any input re: these two medications ; particularly potential liver damage issues. Please advise. Thanks.
My first episode lasted 5 months…remission 9 months…well mild pain that eased slowly over several months…then… Bang…full on worse than the first, was put tegretol and Dosage increased over 6 weeks…zombie land until surgey 6 months later. Everyone is different…mine was type 1 affecting v1 and v2. I was diagnosed with tn…at first and 2 other diagnosis, and then back to tn…“typical”…or text book case…is something I think the medical profession should take out of the vocabulary…
hlt069 said:
I have had this since June 2011 and have not had a remission. How long was it before some of you had a remission?
hlt069 look back up the discussion to my remarks on my remission. I just recently went into remission and it is sure great to not have the pain.
I am really curious if anyone has tried cannabido (CBD oil) that is now available in some states. It is suppose to be very beneficial to pain and I am really curious if anyone has had experience with it.
tkal - Is that an ex-racing greyhound on your profile pic? Reminds me of my girl who is almost 6 years old. She was terrible at racing so were lucky to get her at a fairly young age. I think they literally raced her about 5 times before retiring her.
Sorry - I meant for this message to go to tkal and not on this forum topic.
I thought I was the only one!! this is why I love this board even if I can't get here like I need to. I get conformation I am not alone!
Elivandersys said:
I have Type II, and I find myself rubbing my scalp or my ear. Then it just sort of dawns on me that it's back. It's always a bummer because when I'm in remission, I get lazy about my meds, and then I wonder if I made the whole thing up. But then it returns, and I'm faced with reality. I'm sorry you're experiencing pain again, Catwoman.
Yes it is. I sent you a friend request so I can send a message to you.
KiwiTN said:
tkal - Is that an ex-racing greyhound on your profile pic? Reminds me of my girl who is almost 6 years old. She was terrible at racing so were lucky to get her at a fairly young age. I think they literally raced her about 5 times before retiring her.
Sorry - I meant for this message to go to tkal and not on this forum topic.
Mine, I start to feel the twinges in my cheek/jaw, happened a month ago and my meds would not last long enough to help. I was having to take them more often during the day Never felt pain like that. After a couple weeks my meds can help again so I can function. Never know when it will happen. I just savor the time in between.
Kind of a bit of both really...every time is different...sometimes it can start with small "tweaks" building up to major attacks but other times it can just come outta nowhere, without warning. Trying to find a pattern is sometimes useful but not always easy or even possible. It's simply the nature of the beast!! :-)
I'm also in New England (RI), and I too only get pain inside my mouth. The shooting pain is only in one tooth actually. When I get the level 10 pain shooting pain it's sometimes followed by an excellent burning pain. My triggers are eating and talking. Any exaggerated mouth/tongue movements really. Yesterday I got nailed by attempting to turn from face up to face down (at the chiropractor's office). I'm still new to this too though and things seem to be changing over time. Who knows what this might bring in the future.
sunflower said:
I am in New England as well (Maine) and it has been one long, rough winter. I have a question about triggers though. I'm pretty new to all of this and cannot locate external triggers. For instance, I'm a skier and the wind/cold on my face doesn't bother me (yet) but talking or eating will. Does anyone have only inside the mouth triggers and only get pain in the teeth? Is this because it's just the start of things? I'm on a BIG learning curve. :)
I am wondering, you mentioned you only have shooting pain in one tooth, does that tooth ever get numb as well? I have one tooth, that is 75% numb all the time , but also hurts a lot many times too. It scares me because I hope a neuroma is not forming.. My nerve injury happened almost one yr ago, and I have jaw pain, teeth pain, gum burning and a general some one socked me in the cheek pain , general type pain...oh, and on/off mild electric shock sensations. So yes, I think it starts with teeth pain and goes from there... where it goes, I don't even want to think about....
lucky13 said:
Hi Sunflower,
I'm also in New England (RI), and I too only get pain inside my mouth. The shooting pain is only in one tooth actually. When I get the level 10 pain shooting pain it's sometimes followed by an excellent burning pain. My triggers are eating and talking. Any exaggerated mouth/tongue movements really. Yesterday I got nailed by attempting to turn from face up to face down (at the chiropractor's office). I'm still new to this too though and things seem to be changing over time. Who knows what this might bring in the future.
sunflower said:
I am in New England as well (Maine) and it has been one long, rough winter. I have a question about triggers though. I'm pretty new to all of this and cannot locate external triggers. For instance, I'm a skier and the wind/cold on my face doesn't bother me (yet) but talking or eating will. Does anyone have only inside the mouth triggers and only get pain in the teeth? Is this because it's just the start of things? I'm on a BIG learning curve. :)
Nope. Never numb in that tooth. It never really had an injury either. Root canal just over 10 years ago with no pain at the time. Strange the TN would choose this tooth to terrorize. The one tooth in my mouth with no nerves that should never hurt at all. It should be able to rot right out of my head with no pain. Who knows. What kind of injury did you have? Why would you think you're developing a neuroma? X-ray should show that. My latest idea is that maybe it's early stage osteomyelitis. I just desperately want it to be something curable!
Scared & Angry gal said:
Hi Lucky13
I am wondering, you mentioned you only have shooting pain in one tooth, does that tooth ever get numb as well? I have one tooth, that is 75% numb all the time , but also hurts a lot many times too. It scares me because I hope a neuroma is not forming.. My nerve injury happened almost one yr ago, and I have jaw pain, teeth pain, gum burning and a general some one socked me in the cheek pain , general type pain...oh, and on/off mild electric shock sensations. So yes, I think it starts with teeth pain and goes from there... where it goes, I don't even want to think about....
lucky13 said:
Hi Sunflower,
I'm also in New England (RI), and I too only get pain inside my mouth. The shooting pain is only in one tooth actually. When I get the level 10 pain shooting pain it's sometimes followed by an excellent burning pain. My triggers are eating and talking. Any exaggerated mouth/tongue movements really. Yesterday I got nailed by attempting to turn from face up to face down (at the chiropractor's office). I'm still new to this too though and things seem to be changing over time. Who knows what this might bring in the future.
sunflower said:
I am in New England as well (Maine) and it has been one long, rough winter. I have a question about triggers though. I'm pretty new to all of this and cannot locate external triggers. For instance, I'm a skier and the wind/cold on my face doesn't bother me (yet) but talking or eating will. Does anyone have only inside the mouth triggers and only get pain in the teeth? Is this because it's just the start of things? I'm on a BIG learning curve. :)
Maybe the root canal on that tooth was done poorly, and he overfilled it and that stuff they fill the pulp with went out of the tooth area and into the trigeminal nerve branch area... then that tooth would hurt from neuropathic pain...My injury is from an upper molar extraction, immediately had numbness in the gum area near extraction site and as time passed the numbness increased from the gum area to the near by tooth of the extraction site... now this tooth is about 75percent numb and on/off pain. I worry that is could turn into a neuroma because it is never a good thing to have the weird sensation of numbness and pain in the exact same location. I know the feeling of just wanting it to be anything that can be fixed.
Actually the root canal doesn't even reach the bottom of the tooth. Definitely not overfilled. That bottom of that tooth does lie very close to the nerve canal. I was hoping for an abscess. I've never wanted an abscess so bad in my life! X-ray of the tooth shows nothing. CT scan shows a little something which may or may not be contributing to my pain. However I want SOLID evidence before I go pulling teeth! I'm afraid that pulling the tooth could make it worse. I'm on my second round of antibiotics to see if it makes a difference (so far it has not). Heading to Tufts myofascial pain center next week to see what they have to say about it. My symptoms are weird now though. I used to be able to touch the tooth to get pain. Now I get pain from chewing (either side), swallowing, talking, swishing mouthwash or spitting after brushing (brushing seems fine). Makes no sense. If it was something under the tooth, wouldn't it hurt every time I touched the tooth? Would talking make it hurt? I don't know.
Do you think it was the extraction that caused the TN or was it the novocaine shot that did it? If I do end up having this puppy yanked, I want to be put out. NO novocaine! My dentist offered to try to numb it with novocaine last week. I told him he was crazy if he thought he was going anywhere near it with a needle!
Scared & Angry gal said:
Maybe the root canal on that tooth was done poorly, and he overfilled it and that stuff they fill the pulp with went out of the tooth area and into the trigeminal nerve branch area... then that tooth would hurt from neuropathic pain...My injury is from an upper molar extraction, immediately had numbness in the gum area near extraction site and as time passed the numbness increased from the gum area to the near by tooth of the extraction site... now this tooth is about 75percent numb and on/off pain. I worry that is could turn into a neuroma because it is never a good thing to have the weird sensation of numbness and pain in the exact same location. I know the feeling of just wanting it to be anything that can be fixed.
My TN started in tooth #12. Had a root canal done... pain was still there. Ultimately had the dang thing pulled.... still had the same pain. Had an MVD and magically the pain was gone for 9 years. Then one day...WHAM...the same effin' tooth pain was back. My point is...do not get the tooth pulled unless absolutely necessary.
lucky13 said:
Hi Sunflower,
I'm also in New England (RI), and I too only get pain inside my mouth. The shooting pain is only in one tooth actually. When I get the level 10 pain shooting pain it's sometimes followed by an excellent burning pain. My triggers are eating and talking. Any exaggerated mouth/tongue movements really. Yesterday I got nailed by attempting to turn from face up to face down (at the chiropractor's office). I'm still new to this too though and things seem to be changing over time. Who knows what this might bring in the future.
sunflower said:
I am in New England as well (Maine) and it has been one long, rough winter. I have a question about triggers though. I'm pretty new to all of this and cannot locate external triggers. For instance, I'm a skier and the wind/cold on my face doesn't bother me (yet) but talking or eating will. Does anyone have only inside the mouth triggers and only get pain in the ? Is this because it's just the start of things? I'm on a BIG learning curve. :)
It's not just the one tooth that hurts for me, it tends to spread itself around! Today the roof of my mouth hurts like I've drunk something too hot. The fun never ends, people!!
I have the same thing. It moves around, so from day to day I never know what I'm going to get served up. Different teeth on different days, one or two teeth always, zaps in my gums in different places, pain - like you said - in the roof of the mouth sometimes. Also my tongue will get shocks of pain, or burning or both. Plus facial pain which changes daily, always that burning, aching and crushing feeling, but that moves around the right side. Crazy stuff. It all started in my teeth but over months crept into my face and spread. That was 2 years ago, before that, I vaguely remember having a normal life without pain. Trying to stay positive but sometimes I wish I could have back even one normal day. I didn't appreciate being able to talk, eat, laugh, breathe without pain before TN. Wish this hadn't happened to any of us.
catwoman said:
It's not just the one tooth that hurts for me, it tends to spread itself around! Today the roof of my mouth hurts like I've drunk something too hot. The fun never ends, people!!
I totally understand the people above who have wondered if it were simply something dreamed up. A nightmare that couldn’t really be true.
After being on tegretol for months, and much oral work completed and healed, I tapered off meds to see whether or not it had all just been from an impending abscess. No such luck.
Now there is just a lingering feeling. Not pain so much as an odd faint tingling.
You hear so much about others’ severe pain, I feel badly about complaining about such a mild sensation. But the psychological effect of it, that ever-present reminder of what can happen, is incredibly limiting. I bring a scarf everywhere. I still walk my son to school, but I am so much more fearful of any breeze (and it’s windy here). I am so much less tolerant of the kids yelling or being startled. Argh. Not the fun, happy mom I’d like to be.
All this talk of teeth has got me wondering... you know how they talk about phantom limb pain...have any of you ever experienced phantom tooth pain?
I spent years trying to get to the root (pardon the pun, but we TN-ers have to take the levity lightening wherever we can get it ) of my "dental" pain & have, over the years ended up having my teeth drilled so many times that they eventually have so little "body" left that they crack/break & end up having to be extracted. The end result of this is that I only have seven teeth left in my lower jaw...I just wish I had heard of TN years ago, as it might have meant that I could have saved some of those teeth from being drilled quite so deeply & eventually being extracted!
So, anyway, my query is have any of you ever experienced a toothache in the space of a tooth that had been extracted previously? And I mean, in my case, years previously! Daft I know, but I never really connected this "phantom" pain with my TN before until I joined this site. I suppose it's all basically down to the decidedly poor level of information we get from our dentists these days!! :-)