I'm looking for ways people deal with their atypical tn on a daily basis, any info would be greatly appreciated
I'm actually looking forward to replies to this as well. From what I can gather, we're all so very different in the way this horrible thing affects us! How I cope depends entirely at the moment in how much numbness I have and whether or not I've got aching or pressure going along with it. Today it's the pressure, which feels like someone is leaning on my jaw. Yesterday it was all about the headaches which came and went all day. Tomorrow it could be that my front tooth is going to snap in two. But always the numbness. Quite sick of it really.
Its kind of nice to have contact with someone going through similar things, like I'm not going through it alone.
I haven't been getting the numbness just pain all day that moves from one part of my face to the other, I used to sit around 3\10 pain wise with the odd spike up to 7-8\10 lasting a couple hours, but last weekend I had a 10\10 spike that lasted 12 hours, ever since then its been at around a 5-6\10 all day.
When I had the 12 hr 10\10 spike I went to the hospital for pain relief, all I was given was one codine which was ineffective and a warm cloth put on my face. They then gave me a prescription for codine and sent me on my way. I just felt kind of humiliated, or tortured, I just don't know what to do
Owwwww!!! Poor you. :-( . I feel kind of guilty because the numbness pretty much replaces the pain for me at the moment. Having said that, I also wander into type one territory every few months so I know all about the pain!! I had two years when it was all type 1 but luckily I had a few blissful weeks here and there of remission. The numbness has now been several months and doesn't seem inclined to pack it's little bags and move on. Damn it!!
I was hanging out for other people's responses too! Come on people, chat to us please.
I saw this and thought I ought to answer as I'm going through a much better patch, which has made me ask myself how I got through the bad bits.
Looking back now I can't really believe I did all the things I did while I was in pain. Now it has let up a bit I'm even more aware of how bad it was. I avoided the triggers I was aware of as far as possible, mitigated the effects of triggers I couldn't avoid and accepted it was going to affect my life and change what I could do. I also visited my doctor regularly to discuss medication options and try different thing - this gave me some hope that I might find something that would improve the situation and that helped me keep going.
The things that helped me most were gentle steam on my face and some mindfulness/relaxation exercises that helped me to relax my body and mind and avoid making the pain worse. Working as a contractor meant I had to focus on finding and keeping jobs and although a stress it was also a good distraction, and I definitely got through one day/hour/minute at a time rather than planning ahead.
I'm not sure if this is any help at all, but I got through 3-4 years of it and I'm now feeling a lot better so it does happen.
Thank you for your response, I've only had this for almost 2 months, some days are better than others but I decided today if I'm going to always have this pain I might as well get on with it and get back to work.
It felt great being back at work, keeping my mind busy trying to ignore the pain and working on the farm.
I'm working out medications with my doctor to find something that suits me, I'm now trying out gabapentine.
I don't have any triggers as such (just constant pain all day) but lately any bright light pierces straight through my eye and causes more pain behind my eye, so I am now wearing sun glasses all the time now.
Going in for an MRI in 2 to 4 weeks time, kind of nervous about it all
Everyone on here has had an MRI pretty much. So far I think I'm the only wuss who needed a General Anaesthetic. I have to work through mine as well, I'm not exactly rolling in money, if you know what I mean. :-)
Yea I hear ya, I'm more worried or anxious about the results.
I discovered a technique today (by random chance) that seemed to take a large edge off the pain whilst doing it, would definitely not work for everybody and its certainly not a cure.
My pain is all over my right side of my face (from behind the eye to the lower jaw to inside the ear) I placed my left hand on the right side of my forehead, and pulled my hand to the left while turning my head to the right simultaneously with the palm of your hand and your fingers gripping your forehead.
Your head shouldn't move so you are equalling the force of your head and your arm with as much force that is comfortable.
Does that make sense? Haha
I was having a spell of about 7\10 at work and I tried that and it dropped to about a 3\10, if anybody reads this try it out and tell me your results as I am intrigued with this, maybe it won't work for anyone, maybe it will, maybe I could start a tn facial yoga class haha
Also tilting your head to the left while doing it, I don't know but it seems to help me when I need it.
The relief only lasts as long as you are doing it, but just a minute can be heaven
Forget the yoga class, I'm picturing a book deal! You could be famous! You'd still hurt but at least you'd be rich.
Kiwi and catwoman, I hear you both.I have a childhood girlfriend that moved in with me about 3 mo.'s ago and said she didn’t realize just how bizarre this disease truly was and depending on the weather and the air blowing at all hot or cold in the honse, whether I wash my hair and when and how, just like brushing teeth, and I have to make sure NOTHING touches my chin or it will set off like being in a patch of thistles then it spreads into burning all along my jawline. Had to learn a new way to put pillow cases on. (lol) by the way kiwi, what you said did make sense so I tried it this morning, my head felt like a b-ball ready to explode along with all the other junk and althouh we probably look like goof balls.doing. it. (lol) I know longer care what I look like.ha! It did relieve some pressure as long as I continued holding my head like that. My friend and I both laughed. This disease will make you do most anything to make the pain stop.I started this post last night and had another good night, now today is another story. My keyboard messed up and today my face and head are messed up.Even with pain meds. I still hurt pretty bad.I am still very thankful because I know it could be so much worse.I just pray for a cure or better meds.for this HORRIBLE disease.I have not a clue at this point where this post was headed, I know we all need to just vent or in my case this time just babble.So will wish all the best for today.Dawn
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do you actually feel like your tooth is gonna snap in 2. My teeth on r/s feel odd,like they have ice on them,and different to the left side.My gums hurt,and today i have had the chest hurting as does my neck. that doesnt always happen,and i dont know why it does
catwoman said:
I'm actually looking forward to replies to this as well. From what I can gather, we're all so very different in the way this horrible thing affects us! How I cope depends entirely at the moment in how much numbness I have and whether or not I've got aching or pressure going along with it. Today it's the pressure, which feels like someone is leaning on my jaw. Yesterday it was all about the headaches which came and went all day. Tomorrow it could be that my front tooth is going to snap in two. But always the numbness. Quite sick of it really.
Back to the original question of this post (if I can hold that thought for a sec. lol) This web site has been one of the best tools I have had in fighting tn. It has helped in so many ways.The help with research is great but what amazes me is when you haven't been on this site in awhile and you will be in pain to bad to respond to someone but I come here just to read what others have wrote and I need HELP BAD I can be at a lost what to do next and I will read something that doesn't ease the pain but makes me not feel so afraid or so alone,makes me very thankful because after reading so many discussions, blogs,ect. I also realize that as bad as my tn is, it could be so much worse . I thank my Heavenly Father daily that mine is no worse then it is and that with a big change in meds. things are still looking up. looking up. I function most days, with poor to good hrs. throughout the day but nights after midnight have been mainly GOOD! Don't get me wrong I am thrilled to have good nights,that its self would make for a good discussion or blog I can't be the only one am I? That. grills out at 2:00 am, mows the grass, begs friends to stay up with me (lol) ect. The neighbors deal well with me. I'm thankful for that also.I am sure. most of them know I lived here over 30 yrs. and 20 of them I have been dealing with tn I real sure they think I'm the nut on the corner at this point especially after this past winter,some of the get ups I have been. seen in.Lol, as icthink back and even to just the other morning when it was hot and humid, and windy, i let the little dog? out to go potty quick i thought, he decided to visit neighbors and not come when i called him so I had to go after him I grab my doorag, sun glasses and scarf and out the door. Whoops! no pants! That's how you know i'm a tn patient! Ha! Ha! After saying that i will wish all a painless afternoon. The dog? is wanting my attention LOL, Dawnli. ng with tn
I don't know how I'd feel if I hadn't found this site, I feel kind of guilty to complaining about my tn as it seems all of you have been dealing with it for longer than I've been alive lol I'm only 23 and have only been having these symptoms only starting 3 months ago, the pain originally started in my front right tooth, just now and then and I just put it down to a sensitive tooth, then on a flight from Australia back to new Zealand it felt like I must have had sinus infection and the cabin pressure caused strong pain above my top teeth on the right side.(I did have a cold during the flight so it was very plausible) but i had taken meds for that and had gotten better, but the pain stayed and had moved to the lower jaw and teeth too, which is when my doc told me about tn, since then the pain has spread to everywhere on the right side, especially right behind the eye and temporal area. Which is a little worrying for as I've read with me being young and the pain spreading to different areas its more likely I have a tumour or ms, to be honest I'm kind of hoping its a tumour That can be removed. But I shall see with my upcoming MRI!
Can i just say thanks to everybody who has commented on this thread, it gives me hope that if you guys can deal with this twisted joke of a condition for years then I sure can too
Hi Barbara! Yes, it really does feel like my tooth will snap in half. It's like there is a pair of pliers clamped on to the tooth and trying to bend it in half. Needless to say, it's not pleasant!
catwoman, the tooth snapping fear sounds awful. I hope that goes away soon for you. I'm glad you started this thread too. I'm always surprised but not really surprised at how many different symptoms those of us with ATN have. I had to leave work early yesterday because my pain got really bad. It was different too. For the first time it felt like I had tiny needles being shoved into the roof of my mouth. I had pain behind my eye for the first time in a long time and I got shots of pain (not electrical as described by others). These shots were more like flaming arrows. That was a new one. I am on the radio. I was afraid I'd get one of those shooting pains while talking on air. Thankfully it didn't happen but I had to home after my shift because I was hurting bad and I wanted to get a jump on the pain. I went home and took 300 mg of Neurontin, which usually knocks me out. I slept for 3 1/2 hours, was still in pain but when I went to bed I took another Neurontin along with my usual Lamictal and slept well. I feel much better today. The pain has decreased significantly and I'm back at work.
When I have an attack I usually have a throbbing or pounding pain from behind my ear down along my jawline and numbness in my chin. I had an 18 day stretch of pain recently. It was the worst I've ever had and it culminated with swelling along my jaw. It was painful, big, hot and red. I went to my Doctor and the tests he took determined there was no infection there. I surmised that my face was going nuts with all the signals it was receiving and was trying to fight back any way it could, thus the swelling face. The pain stopped finally but the swelling remained for a few more days. But even now, when I touch that area it is still tender. I know when an attack is impending because the gum around my rear right bottom tooth gets inflamed and swells up, almost covering that tooth. It's that way now so I plan on taking the Neurontin again when I get home. I may add a muscle relaxant as my shoulders and neck get so tight when TN pain hits.
Sorry to rattle on so much. It just feels good to be able to share this sort of stuff with people who actually understand.
Omg ,so this ATN can effect some peoples teeth and gums more than others. So im stuck with teeth that feel like icicles,or feel 'weak'. do yours feel weak.I have felt them,they seem stable,i know i have one loose one,but only slightly,and thats the one next to extraction site. I am back at dentist tues,and am hoping he will finally get me a mouth guard as i am also hoping that some of this pain will go once i stop clenching my teeth and apparently i grind too. My friends at work are petrified of going to dentist after my 'incident'. I think it would put me off too.
catwoman said:
Hi Barbara! Yes, it really does feel like my tooth will snap in half. It's like there is a pair of pliers clamped on to the tooth and trying to bend it in half. Needless to say, it's not pleasant!
Barbara, please feel free to rattle away, Lord knows I do!! As we all know, talking to someone who doesn't "get" our weird and wonderful condition just makes their eyes glaze over.
My work friend is off to dentist on tues.She is so petrified and paranoid because of my incident.I said how many people do you know with my issue,she said she didnt,i said i dont either.I dont know anyone in my circle of friends,or their friends who have this issue.I have to say that those around me are now 'dubious' about going to dentists.
Just a thought really.When we are given various medications,in my case nortriptyline,if i didnt have ATN or atypical facial pain,or 'nerve damage',would the nortriptyline not work.I guess what im trying to say is if our pain responds to anti depressants and anti seizure pills,and makes it more bearable,then our pain 'is' ATN or TN ,Nerve damage or atypical facial pain.I sometimes think of that,and wondered what the answer is.