I don't seem to be able to find a trigger point.I read that many people don't find one.
When I say my face hurts,it seems to be within my face.Touching my face does not leed to a painful responce.(Unless I am having an attack)
Breathing in cold air leads to pain but cold wind on my face when my mouth is shut does not.
Am I just lucky or does anyone else understand what I mean?
When I read this it sound like I'm looking for an excuse to exit TN.I'm always looking for an excuse.Thats why I say I'm in denial.It just doesn't seem possible that I have this horrible thing.I do feel alone sometimes.
I've started to set myself challenges every year now incase at some point I am unable.I don't wish to be feel "I wish I had done this or that."
My constant aching started about a year ago.But I have had what is adicribed as attacks for many years.But about a year ago I first started taking meds.My logical head is telling me that as my constant pain started when i started meds during an attack a year ago,If I stop the med,the pain will go away.
As of yet I have not tried to stop the meds.Is this madness???
No, it's not madness at all. I think we each have our own ways of coping and dealing with this condition, Jacksharky. Just wanted to let you know that you're not alone in how you're feeling. I have similar thoughts and get really scared when I worry about what the future might hold.
Wouldn't it be great if they come up with a cure or at least a miracle medication that wipes out the pain? Hang in there. We're all in this together.
I'm sure my pain is no where near what others are feeling.I'm not sure if I'm just lucky or it's not TN.But I will say on the odd occasion that it gets BAD,yeh! I do just wish it would all end.But thats rare.For got my meds yesterday.I'm so tempted to see what happens if I stay off them for a few days.I just want to be sure I'm taking them for a reason.
I was going to go to docs at the end of this course as I have a hip pain and a toe pain that I'm praying are not stress fractures.Not run in 6 weeks and hip pain is not easing.I want to be able to discuss face.She keeps wanting to put me on tegratol.But the side effects were awful.So much so that I can't remember if it helped at all.I remember I was off work for a whole month! I've just started a new role so I don't want to do it again.I'm also at the start of raising £10,000 for the RBLR by doing a tandem parachute jump.
Those drugs,the anti convulsants really do my head in.I'm not running for a while so the loss of balance isn't to much of a prob but the loss of words and short term memory loss is a killer.
I'm just not sure what to do for the best.
Do you find that the right meds take the pain away or do they just keep it under control? i seem to have days when I'm not bothered to much by my face and like resently It just seems to be under control.Maybe the meds arn't working as well.I guess I'll only answer my own questions by seeing what happens if I stop taking the nortriptyline.
Don't I ramble on a lot. Sorry.
On alighter note.Got my summer stuff out of the loft.And am not on a diet so I can get into it all.(no running you see!) :-P
I think you are my mirror image. I have few actual "triggers" - none of which are the "standard" as described in all medical literature. I have ATN with some hints of type 1 TN. I am on Lyrica and the side effects are almost non-existant for me. I learned on an FDA site that taking a B6 supplement with my morning Lyrica each day, greatly lessens the side effects and so far, that is working for me. However, stopping your meds to see if your pain increases (or decreases), is not a good idea. Unfortunately, one doctor stopped my Lyrica cold turkey about a month ago and I went into the most severe pain I had ever experienced. It really convinced me that I needed to be on my meds - even if I felt out of pain. Luckily, a knowledgeable and caring doctor titrated me back to the Lyrica and all was well within a few days. I know exactly what you are talking about regarding whether you have this horrible disorder or not, and the constant worry about the future. I feel like I have to do as much as I can on my "good" days because I have felt the terrible pain of the "bad" days and there are no guarantees for the future. Will I build a resistance to my Lyrica - probably, but since I am still considered to be on a low dose, I have room to increase it. I worry more about "old age". Should I live that long, will I forget to take the meds, will a caregiver forget to give them to me or worse yet, what if I am in a home for the elderly and totally out of control over my care? I pray for remission, but doubt that will happen so I will pray for a better drug and possibly a cure at some point. Just know that we are all here for you and many of us feel the exact way that you do.
What puzzles me and fills me with doubt is that my constant achy pain didn't start till i was given the meds.Up untill that point i had attacks and then nothing for many months at a time.
I feel the same as you, even though doctors keep telling be that this is a "nerve thing" I can't help but be in denial. my biggist issue is just accepting this. I don't think thats possible, I am sometimes afraid that I will drive my self crazy trying to figure out the way to stop this. yesterday I had what you called an "attack" I was in a severe amount of pain all day, I woke up this morning in some pain but more manageable. I keep asking myself what is diffrent from to yesterday to today? maybe its something I ate? maybe its my stress? Maybe its my sinuses (even though I was told its not) maybe I am allergic to somthing? I just can't accept it because it does not seem logical to me. I know what you mean by feeling alone, and thats how I felt yesterday until I read this. So thank you for letting me know I am not the one person who feels this way. The only diffrence for me is that I feel like the medicine is helping and before the meds I don't know how I managed to live life day to day...
Well no meds today.Thats two days without.Teeth still fizzing.I get ice pick headaches as well.Oh! Yippee!!!
I want to know what I'm talking about when I see Doctors.I'm sure that nothing will happen.It's been soooo long since I had an attack.Up till now I've always persuaded the dentist to give me antibiotics just incase there was an abcess.An attack can last couple secs to few mins all day long on a day to day basis.But every now and again i get one that lasts 10 to 15 days 24/7 on a pain scale of 10/10.Lets see what happens without the meds.Might be interesting.It could be that it is so unpredictable that nothing happens!!!
If I get an attack It has to be casualty.Had face x-rayed a couple of times.Nothing found.They say MRIs are inconclustive as you can have pinched nerve with no pain and no pinched nerve with pain.I give up.
I know it is covered by disability act but I don't know what the disability act covers!! Anyone else know.Just incase I'm off work again.I'm only allowed 3 sicknesses over 12 rolling months. Your due disiplinarys then and then you get the sack!!
When I first started having unexplained facial pain back in 2003, TN was in the differential diagnosis. As I researched the condition, my heart went out to everyone who was sticken with it and all I could was hope that my doctors were barking up the wrong tree. When the pain spontaneously resolved, I was so relieved. Even when it reared its ugly head a year later, I was able to reassure myself that this could not be TN (because there was a broken tooth on the side where the pain was). After the pain kept reappearing, though, I had to admit that there was something unusual going on and more research led to the discovery that TN sometimes goes into remission, which is likely what was happening to me. This also made my situation challenging to diganose. Once all other causes for my pain (sinusitis, fractured teeth, ect) had been ruled out, I was referred to a specialist. Up until that point, none of my doctors had ever seen anyone with my symptoms. When I saw the orofacial pain specialist, I asked him if he had ever seen anyone like me, and he said, “all the time”. Being treated at the orofacial pain clinic has drastically changed my life for the better. I now have a brilliant team on my side and this has made all of the difference. Even though I still have pain, I know they are doing all they can for me.
When you say that your pain seems to be within your face, do you mean the soft tissues and musculature of your facial structures rather than the outer skin itself? Or do you mean the teeth, gums or deep in the mouth?
In terms of my own situation, there are activities that aggravate my pain levels such as chewing, talking, raising my voice, smiling, and long car rides, to name a few. However, when I get the huge horrible stabbing attacks, they come out of the blue without any provocation. This is one of the most bizarre, unpredictable things I have ever had to deal with, which I am sure is the same for everyone here.
I get no pain on the surface of my skin. The only thing I can say is definatly muscular is the twitching I get around my eye and top lip.These do not seem to be visible.My teeth get dull elec shock type pains all over,all day long.I have a couple teeth that have,for as long as I can remember,always been sensative to even gentle presure,like an abcess was about to flare up.But this is not painfull enough to stop me eating and the gum is not sore or sensative.
I get dull elec shock/throb pains in various parts of my face,temple and jaw.Every now and again I get one that hurts enough to make me frown or pull a face and sometimes express out load the there is pain.I do not really record every throb as it almost a way of life.
The more constant pain that started about a year ago is in my seinus and eye socket area are and in the corner of my right eye socket.The ache that raidiats around my eye sockets feels like it goes behind my eyes!! Like a bad head ache but raidiating from the bridge of the nose area!!!
All this goes on at the same time!!!It has been x-rayed and the sinus is completely clear.
But it is not often bad enough to stop me doing physical stuff.I like to run,long distance,swim,cycle.Compation too. I will be doing my first tandum parachute jump in july,some places left if you fancy it?
I have a physical job.But I recently had to admit to finding it hard.But not just becouse of my face.But due to age,I guess.Feeling worn out.
But when my face goes off on one,it usually starts like an abcess.Then about 2 days later it hits hard.I have had 1 , 2 and even 4 abcess at one time.Not many teeth left though! 4 nasty abcesses is the only thing that is similar.Breathing hurts,I just can't function.It is a living hell.It's been a year since an attack.So I'm due one.I'm waiting.My teeth flare up and settle down often.So I'm always wondering if this is the ache that will be the start of an attack.
My doc wants me on tegratol whick I'm not convinced works.So I have decided next time I'm going to casualty.I have stopped taking nortriptyline.It is day 3 without meds.Pain has not changed.Maybe it'll take a couple more days to get med out of system.But I need to know that they work.
Your story sounds eerily close to mine! If I have a break from pain for a couple of days, I start wondering if I ever had pain. Then it hits me! Cold air, cold breeze on my face triggers pain for me. Sometimes blowing my nose, rubbing my nose, etc. I've been in denial for nine years. :(
I see pictures of me happy with a big grin and I can't remember being in pain at the time.
But they do say(like childbirth)pain is soon forgotten.
Mind you the pain from a whopper attack IS NOT! LOL.
I said I'd go to casualty next time as my doc just wants to shove pills at me.But I'm almost to scared incase they say its a tooth.
When I went for one of the x rays the doctors tried to tell me I might had a cracked tooth.I had ot go to the dentist and have a load more x rays to have her say,no theres no crack in the tooth but by then you out of the docs office and you have to start again with the GP!!! What a polava!!
I've had a massive migrane(which I never get),think its withdrawl.But I need to feel the pain to believe it is still there.To be honest it doesn't feel that different.!!!!!???? I do not know what to make of it.
so in pain right now to write properly.the first period of time - i remever even breathing air was so painful .till today - sometimes i swallow my salive - and it hurts. i still belive it's something dental (yeah yeah all the xrays are OK). it started aftewr a dental work. (Works).
i was perfectly healthy before.
everything HAS a reason. i don't belive in ATN (sorry how it sounds - i mean - there is a scientific explanation) -.
and as i said many times in this forum - i've talk PERSONAALY with SEVERAL people here in Israel - suffered greatly . all the doctors told them NOTHING was wrong with thier teeth and wanted to declare them as ATN sufferers BUT - they did some dental work - and today they are cure.
i'm not saying every case is dental . proboaly many cases here aren't. but for the few of us that can - they must find the real reason for the pain - it a matter of saving a life . just like that.
and yes - i'm also in denial - but it sometimes can be a good thing - it can help you find the REAL cause. and sometimes "letting go" - can be your way to handle the pain. it depends.
My ATN is very much like yours! I have deep pain that feels like it's in my sinus and around and behind my eye. I have some surface burning down the side of my nose, in my nostril and down to my upper lip but the deep pain in my cheek and eye socket is by far the worst. Touch does not affect my pain -- my trigger is cold or cool moving air like a breeze. I am so sick of wearing scarves!
I was diagnosed with ATN 4 years ago, after I went to an ENT convinced it was my sinus. He found nothing wrong and sent me to a neurologist who diagnosed me and put me on medication. Medication was not working, so I was referred to a pain specialist, who I've been going to since. I have been treated with all the meds, radiofrequency ablasion, steroid injections, and a neuro stimulator that I ended up being allergic to.
Anyway, after all that I have been through, a couple of months ago I was having pain along my cheek and I became convinced that it was this one tooth that has always felt "tinny" after having a root canal 30 y ears ago. It's the second to last molar so I had it extracted since it wouldn't show much. I really thought my pain would end. It didn't at all. It wasn't the tooth. I wanted it to be that tooth sooooo bad this God-awful pain would be gone. Now I still have the pain and a gap in my mouth. :(
My dentist tx to tell me I'm due a check up.I'm almost afraid to go AGAIN incase she finds something and it's just a tooth.I'd feel such a fraud.But I've had more x-rays than i can count and I only have 16(out of 32) teeth left!! If I can keep myself really busy I don't notice it to much but the min I stop,it's jut THERE! Bit like perminant headache in my face.Some days are more painful than others.Can't remember the last day that one of my front teeth didn't feel like it had an abcess.I get,what they call,pick axe headaches,which are not dangerous but really scarey and really painful.It's not connected just unfortunate.Had then since I was a child.I'm just greatful that i don't suffer as some of the others do.