hi all. I was just sitting here reading and thinking as you do ,and wondered if you just wake up one day and the pain is no longer there,or does it ease day by day,then go away into remission or because it just 'goes away'. I had quite an awful day yesterday,pain on both sides,which im getting more and more,however i have cut my 'soft palette' on a friggin crisp,now that hurts when you have facial pain.So am keeping area clean with corsydl,and it seems better today.Nothing worked for me yesterday.And my freakin teeth drive me bonkers,does that icy,slight shock feeling ever go away.For peeps that have issues with their teeth and gums with this pyschotic 'illness',what meds do you think are the best ones for the teeth issue,along with burning gums,burning mouth.I am still on nortriptyline,and am on 75 mg again..i do try to take less from time to time to 'test the water'.
Hmm just noticed the time says 3.10 pm. Its 21.10 here in the UK.
can have remission - but it is progressive --- have you joined the UK group here??
There is lidocaine mouthwash and lidocaine face patches/cream
I'm kind of curious about this one as well. Do you mind if I piggy back your discussion and see what others say?
From what I understand, like KC said, TN is medically characterized as being progressive with periods of remission.
Interestingly enough, following my MVD, my surgeon's nurse told me there was a 92% chance of me having about 7 years of relief or a lifetime. I like those odds! I had TN 8.5 years before the surgery and it had definitely become increasingly worse over the years. My hope is that damage to the nerve was minimal and/or that it will repair itself now. I am taking B-12, fish oil, eating more salmon, etc. to help rebuild the myelin. (See the Striking Back book for good info on this.)
Hi,
I have bilateral ATN. I first had TN when I was 29. I went on Amitriptyline and was pain free. I went off the medication two years later because I wanted to get pregnant and the TN was gone. 100% gone. When I was 37 it started to come back in my teeth. I went the dental route and ended up having a root canal praying it was the tooth. It wasn't. I went on Amitriptyline again and, honestly, it has been a roller coaster since then. Almost two years later I am now bilateral in all three branches. I switched to Nortriptyline almost two months ago and that has been better overall for me than Amitriptyline with side effects.
I am not pain free but I can go two weeks with no pain. The flip side of that is that I can also have pain every day for up to a couple of weeks constant. I tend to have breakthrough pain and flair ups. Sometimes I have full blown attacks and they send me right back into panic mode. I am just coming out of a very bad few days and it takes a lot out of me. There are some differences in how I handle my pain two years later though. I know what it is (I have had all of the tests, DR visits and dental anxiety) so I try not to play out health anxiety scenarios in my head. I know that it will leave again or at least move somewhere different. It is a very exhausting thing to live with though.
I have gotten to know my ATN very well. It patterns, locations, symptoms and sensations. I now know what triggers it for me--my cycle, the weather, stress, lack of sleep and cold weather (so afraid of winter that is coming). Sometimes there is no reason for it though.
Over the past two years it seems that I have had to slowly increase my med dosage to stay on top of things. The progressiveness of this frightens me. It started in one tooth and now it is all over my face. Every two or three months I get a brand new location and brand new symptoms thrown into the mix. If things would just stay the same it might be easier to control and stay on top of.
As for MVD I am learning that for people that have ATN this may not be a very good option. There are lower success rates all together and many people believe that we should just stay away from all invasive procedures. I agree with this for now. I have chatted with too many people that ended up in more pain. And as long as medication is effective for me I will not consider any surgery. Maybe down the road, if things keep progressing and I run out of options my opinion could change. Being in that desperate, constant pain with no help is not a place I wish to visit ever again.
Sorry this is probably not the good news you want to hear. Remission does happen and for some people it can last a long time. My mom has TN 1 and she has been in remission for five years. She has MS too though so that may be a bit different. For me, even though I am dealing with this beast, I do consider myself lucky at this point. I have a medication that is fairly effective. I am living my life and functioning very well. I am happy, I have a beautiful daughter, a great boyfriend, I work hard and take care of my home. I consider myself blessed every day that I can do these things. I never take it for granted. I have been on the downside of this monster and it is not pretty. I also hear so many people's stories and all of the pain they endure. This is a terrible disease. Take it seriously, learn as much as you possibly can, have an MRI, find a good neurologist and take care of yourself.
Jane
Hi Barbara,
I'm a fellow ATNer and I have a lot of similar symptoms to yours. Burning pain is a big one. Mine started out of nowhere in March 2012. First year was just confined to right side of my face, but over time it's progressed and now it's spread to much bigger area. Wish I could say it goes away, so far no luck with that. I have cycles, weeks of low level and manageable pain (but always there) and then weeks of intense horrible pain. Weather for me is a big trigger, also stress, certain foods, lack of sleep. I try to avoid the things I have control over but it still has a mind of it's own. I also have the burning gums and shocks in teeth - sometimes swishing warm water helps a bit. Heating pad for the face. Sleeping - only peace I get really. This is an exhausting way to live:( Sorry this is so short, just wanted you to know I'm right there with ya ...
Obsidian xx
hi obsidian. I am still very much in the learning what my triggers are. I do know alot of them,tiredness,stress,windy weather,cold weather,stormy weather,flying (that came several hours after a flight).I cant eat many nuts now,or anything thats a strain to the jaw. How i miss eating brazils and the like. I use a heat pad too,sometimes i come in from work and go to bed if im that bad. I always think my teeth are falling out as they have 'weird' sensations ,sometimes clicking,and like they move if that makes sense,but to the touch they dont move.It is currently in my 2 front teeth and gum above,so its travelling again.Im not on such a bad day today. It is very tiring,my other half sometimes gets fed up with me being 'tired',i said would you like this issue for a week,he then understands.I get fed up with talking to outsiders who know nothing about us selected ones,they dont understand. I wouldnt of a yr ago. Next month its a yr,it kind of upsets me cos a yr ago i was fine,i never knew what world i was about to enter in. but we all know dont we. I see a proffessor at a teaching hospital ,shes a dentist,and had a special interest in trigeminal neuralgia,so she knows her stuff. She comes under oral facial pain or something,so is a specialist in TN and the other variations. Does that count as a neurologist
hi catowoman. lol,feel free to piggyback. You know what interests me a bit,do you notice when you are in pain,your face where the pain is,loses colour,mine looks blotchy,its something ive noticed.
catwoman said:
I'm kind of curious about this one as well. Do you mind if I piggy back your discussion and see what others say?
the uk group. Im not sure what group im on. i blame the meds,the mind is cloudy. lol
Kc Dancer Kc said:
can have remission - but it is progressive --- have you joined the UK group here??
There is lidocaine mouthwash and lidocaine face patches/cream
Hi Barbara,
You asked about the dentist you see being the same thing as a neurologist - no it's not the same. But you said she specializes in orafacial pain and knows a lot about TN, so the main thing is whether or not she's helping you. I went the neurologist route here, after seeing several dentists and an oral surgeon to start with thinking the problem was in my teeth. Anyway, as I later found out it was ATN. Have you had an MRI at the teaching hospital? Has the dentist you see suggested you see a neurologist?
I'm sorry you're feeling down about coming up to the first year mark and I understand how you feel, believe me. The emotional toll this can take on a person is very tough. I see my life as divided now, before and after ATN. It took my husband a long time to get it, I think after I'd been seen by the neurologist was when he began to accept it. I don't talk about it much anymore, no point. You can't go on about something like this to people that haven't experienced it. Feel free to write to me anytime.
I was just diagnosed a week ago. The pain started about 6 months ago. And my pain and burning are constant, then I get jolts of pain at random. One of my biggest problems is burning in my mouth (mostly gums although tonight the side of my tongue as well.) My neurologist gave me something called Lidocaine Viscous. I have seen a lot of praise for it but honestly, for me personally, it doesn't last long enough. I basically just sit here and suck down little tubes of oragel...
i have tried the mouth was with limited success. perhaps contact mimi as she just had a procedure done which gave her instant pain relief from an intense pain crisis. not sure how long she was pain free for though
hi obsidian. I have only seen her once,im back in December. I think shes also given her review on striking back.Am hoping that she can help me get the relief i need (like we all need it). I had an mri back in april,what they found was sclerosing osteitis,they didnt see any compression or issues with the trigeminal nerve or any of its major divsions.However since being on here,i have learnt that quite a few of us got a clear MRI. Can an issue eventually be seen.It is difficult,probably most of us have felt that 1 year thing,i sort of expected to get better.I always hope to get better,and i try and never rule it out. Winter time though last yr was hell,but that was before meds,i am hoping for a better winter...........
Obsidian said:
Hi Barbara,
You asked about the dentist you see being the same thing as a neurologist - no it's not the same. But you said she specializes in orafacial pain and knows a lot about TN, so the main thing is whether or not she's helping you. I went the neurologist route here, after seeing several dentists and an oral surgeon to start with thinking the problem was in my teeth. Anyway, as I later found out it was ATN. Have you had an MRI at the teaching hospital? Has the dentist you see suggested you see a neurologist?
I'm sorry you're feeling down about coming up to the first year mark and I understand how you feel, believe me. The emotional toll this can take on a person is very tough. I see my life as divided now, before and after ATN. It took my husband a long time to get it, I think after I'd been seen by the neurologist was when he began to accept it. I don't talk about it much anymore, no point. You can't go on about something like this to people that haven't experienced it. Feel free to write to me anytime.
Hi Barbara,
Is the sclerosing osteitis what's causing your ATN? I had to look it up, I didn't know what it was. I'm dreading winter too, last year was very difficult to get through. Lets hope for a better time this year:-)
barbara said:
hi obsidian. I have only seen her once,im back in December. I think shes also given her review on striking back.Am hoping that she can help me get the relief i need (like we all need it). I had an mri back in april,what they found was sclerosing osteitis,they didnt see any compression or issues with the trigeminal nerve or any of its major divsions.However since being on here,i have learnt that quite a few of us got a clear MRI. Can an issue eventually be seen.It is difficult,probably most of us have felt that 1 year thing,i sort of expected to get better.I always hope to get better,and i try and never rule it out. Winter time though last yr was hell,but that was before meds,i am hoping for a better winter...........
Obsidian said:Hi Barbara,
You asked about the dentist you see being the same thing as a neurologist - no it's not the same. But you said she specializes in orafacial pain and knows a lot about TN, so the main thing is whether or not she's helping you. I went the neurologist route here, after seeing several dentists and an oral surgeon to start with thinking the problem was in my teeth. Anyway, as I later found out it was ATN. Have you had an MRI at the teaching hospital? Has the dentist you see suggested you see a neurologist?
I'm sorry you're feeling down about coming up to the first year mark and I understand how you feel, believe me. The emotional toll this can take on a person is very tough. I see my life as divided now, before and after ATN. It took my husband a long time to get it, I think after I'd been seen by the neurologist was when he began to accept it. I don't talk about it much anymore, no point. You can't go on about something like this to people that haven't experienced it. Feel free to write to me anytime.
hi Obsidian. No i dont think the sclerosing osteitis causes the atn. In fact i didnt even know what it was,neither did my doctor,so he wrote back to hospital for another 'check up' if you like to clarify what was actually the issue.Apparently its bony inflammation.I do feel something has been missed,i dont know why,i just think this.As for the winter ,im hoping im better prepared,i have to buy a snood ,but have a scarf for now..............
Hi Barbara
Thanks for clarifying - so basically they found the sclerosing osteitis but nothing to relate to your ATN pain. So frustrating! This is often the case with TN, we just have to hope nothing's been missed. When my ATN started I would go to the dentist and say this tooth hurts ... or that tooth hurts ... they would take X-rays and say everything looks fine, I think they thought I"d lost my mind. I went to my dentist 4 times and finally he told me to stop coming in because he didn't know what to do with me. It all made sense later on when I got diagnosed, finally all the invisible excruciating pain was "real". I sent you a friend request, so I'm there if you need to vent anytime:)
barbara said:
hi Obsidian. No i dont think the sclerosing osteitis causes the atn. In fact i didnt even know what it was,neither did my doctor,so he wrote back to hospital for another 'check up' if you like to clarify what was actually the issue.Apparently its bony inflammation.I do feel something has been missed,i dont know why,i just think this.As for the winter ,im hoping im better prepared,i have to buy a snood ,but have a scarf for now..............
hi obsidian. I wasnt happy that i had this pain but with no known cause,i went to the teaching hospital at the advice of the pain doctor,but he said he couldnt find a cause for my pain and that sclerosing osteitis is something that occurs 3 to 4 days after an extraction,he basically called it dry socket.I had 3 bouts of dry socket 'supposedly'. When i finally saw the professor,she clarified my pain straight away as trigeminal nerve pain,no injury apparently,but due to my body not coping well to chronic infection,and it being 'slow at healing',as i also have underactive thyroid (which slows everything down). Anyway i am keeping my hopes up and am now eating more magnesium enriched foods,and have bought magnesium oil spray,which apparently alot of us dont have enough of,and can make us feel pretty awful (tired etc). Im all for trying new things,especially when my sanity is at stake.I cant remeber where i read about magnesium and 'nerve issues',and it helping,sooooooo am trying it........never know,i may well get better........
I'm thankfully pain free. I had tn1 and tregol worked for me and I weaned myself off it I was then left with tn2 which took a year to go away I took amtritylin during that time. I think mine was triggered by trauma and this is why my nerve was able to heal. I get worried that it may come back but I'm do thankfully for every day I'm without it. Please note I came off my meds with the OK of my neuro and gp.