Hello all,
I am an Atypical Type II Trigeminal Neuralgia sufferer.
Sometimes, I have bad flair-ups without a trigger. However, whenever it is triggered, it is typically chewing, talking, or smiling.
Rarely it would be wind or cold, as with Type I patients.
So, again, what triggers your pain, and would you describe them as flair-ups, or attacks?
Your friend,
Stef
Hi Stef,
Waking up triggers my pain and going to sleep turns it off again :) probably not what your looking for, lol. Just had to be a smart ass . . . Okay, I have no triggers, just constant burning and sporatic "attacks" for no real reason.
Tracy
I too am a an ATN sufferer but I don't seem to have a "trigger" as such, I have though noticed that during an attack, stress can make it feel worse.
Hi Stef and all...
I'm glad I found this group and question. I feel a bit confused right now as to my diagnosis; the physiological cause, how my pain presents and more...
My triggers are: wind, cold and extreme hot, talking on the phone, washing my face (only occassionally), working on the computer (if I limit my time then I can prevent a pain attack). When I am already having a pain attack: washing my face, touching my face with my hair or anything really, opening or closing my eyes all of the way (I have horrid pain in my eye and often where sunglasses in the house so my eyes don't have to work very hard), sometimes chewing will make it worse.
I call my pain incidences attacks as I don't know what else to call them. While I sometimes have pain for only 10-15 minutes it more often it lasts for 1-2 hours and I have also had excruciating pain all day long. According to what I have read on the TN Type 1 pages I don't think I have ever had the electric shock like pain that they describe. My pain is more of a stabbing, screw driver being twisted into my eye and cheek, vice being clamped down inside my face and most often a slow and persistent burning sensation. I sometimes have what feels like a numb sensation around the right side of my eye. The numb sensation around my eye is, what I have discovered to be, a precursor of pain to come. While I am not actually numb at all that's how it feels. All of the above occurs at varying degrees & durations of time.
I have been given a diagnosis of TN with atypical features. However, I was then further given the ATN diagnosis. That said, I seem to maybe be a minority in the ATN group as I do have a compressed nerve and I do respond to anti-seizure medications. This has me confused a little bit.
That's my two cents today. I hope some of that helped Stef. Take care all. Johanna
waking up like Tracy, cold, high temp, high humidity. how are you both feeling recently.
anyone else scatterbrained or nodding off.
A definite trigger is sleeping on my right side, or keeping my head turned right at night. Also, if I were to lean forward or to the right, what happens is it feels like pressure building in the usual spot (right of nose on right side) and then comes the breakthrough pain, though its not instant, but when it hits it lasts all day.
Note that this is different than the daily all day regular pain, (this breakthrough pain primarily impacts the forehead part of the trigeminal nerve). Also if I am talking for a long time, or chewing a lot it can lead to similar results. But the main thing is sleeping on my right side or with my head to the right.
BTW this pain is more ATN-ish, i.e. no stabbing or electric shocks. Just pressure, throbbing pain which also has a burning sensation (but only on the forehead) for the side of nose "regular" pain its just the deep pressure, throbbing pain.
i have several compressed nerves with scar tissue and fluid accumulates they are triggers. how do they know there is a compressed nerve? is it also a trigger point. having the meds work is great. what are you taking?
Johanna Smith said:
Hi Stef and all...
I'm glad I found this group and question. I feel a bit confused right now as to my diagnosis; the physiological cause, how my pain presents and more...
My triggers are: wind, cold and extreme hot, talking on the phone, washing my face (only occassionally), working on the computer (if I limit my time then I can prevent a pain attack). When I am already having a pain attack: washing my face, touching my face with my hair or anything really, opening or closing my eyes all of the way (I have horrid pain in my eye and often where sunglasses in the house so my eyes don't have to work very hard), sometimes chewing will make it worse.
I call my pain incidences attacks as I don't know what else to call them. While I sometimes have pain for only 10-15 minutes it more often it lasts for 1-2 hours and I have also had excruciating pain all day long. According to what I have read on the TN Type 1 pages I don't think I have ever had the electric shock like pain that they describe. My pain is more of a stabbing, screw driver being twisted into my eye and cheek, vice being clamped down inside my face and most often a slow and persistent burning sensation. I sometimes have what feels like a numb sensation around the right side of my eye. The numb sensation around my eye is, what I have discovered to be, a precursor of pain to come. While I am not actually numb at all that's how it feels. All of the above occurs at varying degrees & durations of time.
I have been given a diagnosis of TN with atypical features. However, I was then further given the ATN diagnosis. That said, I seem to maybe be a minority in the ATN group as I do have a compressed nerve and I do respond to anti-seizure medications. This has me confused a little bit.
That's my two cents today. I hope some of that helped Stef. Take care all. Johanna
My TN has not been classified by my dr. as typical or atypical. It started 2002 lower right, came back upper right and now is painful both places. before this last flareup I did feel tingling on right side of face and thought something was up. Triggers for me are stress, zealous hair dresser, applying make up. this last one I was suspicious that something was coming. I went to a very fun wedding reception, danced and smiled and had to talk very loud all night long and paid for it big time the next day. Still hurting and the wedding was October 15.
Some of your symptoms are similar to mine, but my cervical spine is involved causing neuropathy. as long as your meds work, that is great. your in pain since oct.. yikes. i am so sorry. have things improved.
Hey everyone...My name is Cris and I have been diagnosed since Sept of this year. Thought I was having something wrong with my left ear; hurt all the time, then the pain (stabbing, burning, knawing discomfort and numbness) started to progress to my left lower jawline. A spot under one of my teeth was extremely sore. My doc said it was TN but did not specify if ATN or else. Since then I have been on Tegratol and have had one 'mini' flare up, but this weekend has been a BIG one. That was when I started looking for some help from others that understand what this is like. It is so hard to convey it to people...I don't 'look' like I have anything wrong...IT JUST HURTS... I have no idea what my triggers are; I am a school teacher (I am a chef that teaches culinary arts) so my job is extremely stressful at times and I have to talk ALOT with constant changes in environment. We are having weather changes right now (mid south) that are just plain weird too. It seems that hot beverages really help calm the episode...? This is still new and after reading some of the other's experiences; I am NOT looking forward to the progression of this. I have a medical background as well (was a nurse for 12 years before life change to the food industry) so alot of the discussions of invasive interventions REALLY freaks me out. My doc has not mentioned any of this to me; probably cause just getting started. Well, talked your ear off, so I'll give another person a chance now... :)
My triggers were always extreme temperature changes. As I am a cook by trade. I have to enter freezers, use steamers and ovens of an institutional size. So it was nothing for me to see sharp changes in a 60* range at any given moment. If I got stressed or angry it always made it worse. After months went by it became the slightest change or breeze. Now it's on a whim. I do make a point to protect the affected side's ear to limit exposure to temps. But usually sparks the cheeks to pain then spreads across my face from nose to ear on the left anyway. I feel like some one has taken a tazer to my face on those days. And yes I have been hit with a tazer before.
Jennifer - thanks for your comments! I will try making sure to protect my ear also since I can't really limit my interaction with all areas of the kitchen...how long have you been diagnosed?? I appreciate your discussion and understanding what it is that I am feeling!!! Yah! ...still flaring even tonite...hoping it will 'settle down' before work/school tomorrow!!
I was diagnosed Oct 5, 2011. After 14 months and 10 doctors/specialists. It was the last ENT who recommended protecting the ears with a sweet oil or mineral oil on cotton balls or ear plugs to get through the day. He told me most patients have irritation before the audio branch of the nerve. Since the membranes of the ear sense temparatures first, it would be best to protect them. It's worked for the last few months. But if I try to unload a shipment into the freezer then I am in trouble just from my cheeks being exposed. So I try to limit how often do that task. My employer is understanding because I am not asking to be reassigned or have others do my work. My co workers like me better now I am not grumpy and hurting all day so they work with me to limit my changes. I am luck for them. He also told me that because I like to run outdoors to make sure I wear cotton or plugs even with ear muffs or head bands to keep ears safe. I am on Trileptal right now. And it's kept most of the pain at bay. If I push my threshold, my body responds in kind. Glad I could help.
okay...triggers unknown; BUT this episode is lingering and I CANNOT GET RELIEF... it is like spasming all day long for periods of time with times of numbness...how do you guys cope at work??? I have over 140 students (I teach high school culinary arts) and if I am not on my "A" game, they know it and are 'little heathun's'... don't think I need that kind of stress with this flare up being SOOO pronounced and difficult to deal with. ...calling doc ASAP this morning to get help; but don't want to wait on him all the time...suggestions???
I’m not sure if I have type I or II, but it’s definitely TN! Now that I have lived with it for just about three years, and have had the MVD surgery, medications Almost handle it for me-hah! Actually, it’s like a plague that won’t go away no matter how “good” I am. Pain, although not at all like the death defying challenge it once was, comes every day. Sometimes it is brought on by wind, cold or sun; or, if I become emotional, or laugh-even smile for too long. Unfortunately, my mom’s gene pool produced a down turned mouth on my body, so when I don’t show emotion on my face, I look pitiful; however, when I was young it was considered a cute “pout”. Okkkkkayyyy, okey-dokie-moving on…the pain I have every day is like Chinese torture, but I am very thankful for my strong faith, and almost never ending hope. I just want to reach out and hug those of you who suffer with unbearably intense pain, except of course that would hurt you more… Suffice it to say, type I-ers, or type II-ers, keep up your hope for relief. Remissions usually come, even if it is only partial, and drug therapy or surgery can be helpful.
Oh you must somehow be able to take time off from work when you have pain. How long have you been working there? Can you take even an hour off? Supreme pain is your leader, and somehow your physicians and school staff must work with you. Can you apply for disability? Problem with this is that it doesn’t pay very much - and you may need much more. You may need to change your life to accomodate this horrorific pain.
I didn’t think I could live differently, but sure enough, it is working out. My heart goes out to you, but you sound like a warrior woman, so grab all the attention and help you can gather, get set to put yourself first, and shoot to win your war just like many, many others have won. You can do it.
You are indeed so RIGHT! I am a warrior and I didn't take it 'lying down'... I have since been refered to a neuro, was put on another med that has helped tremendously and have utilized my voice to advocate for myself when I need to...I am still teaching and pushing forward...we have such a wonderful community here on this website; I am truly blessed to have found this and I thank you for your encouraging words and 'TRUE GRIT'!
Thanks kiddo and God bless you, notafraid!!
Notafraid said:
Oh you must somehow be able to take time off from work when you have pain. How long have you been working there? Can you take even an hour off? Supreme pain is your leader, and somehow your physicians and school staff must work with you. Can you apply for disability? Problem with this is that it doesn't pay very much - and you may need much more. You may need to change your life to accomodate this horrorific pain.
I didn't think I could live differently, but sure enough, it is working out. My heart goes out to you, but you sound like a warrior woman, so grab all the attention and help you can gather, get set to put yourself first, and shoot to win your war just like many, many others have won. You can do it.
This TN thing has been a roller coaster for me and I still don't know if I'm Type I or Type II. I know definitely that my first few days of TN pain were the Type I variety but since then I've also had the burning, throbbing waves of pain that go on for quite a while.
As my pain has changed, so have my triggers but there's always been these constants.....eating, talking, washing my face, brushing my teeth and tongue, etc. Like many of you, stress either triggers the pain or intensifies it.
Back in February, our area was under tornado warnings all day long (Friday) and I'm deathly afraid of severe storms. Three times our local TV station warned us to take shelter. I had set up a shelter for me and my pets in an inner closet as I don't have a basement. When not in the closet I was glued to the TV. The pain in my left, lower jaw started out as a dull ache but as the day progressed it became a burning throb and the pain seemed to come in waves. I left a voicemail message with my neurologist's nurse but my call wasn't returned until the following Monday.
The pain lasted all weekend and that was the longest weekend ever. It wasn't the "drop you to your knees" kind of pain I started out with but I was almost to the point of not being able to tolerate it any longer when the nurse called me back. A prescription for hydrocodone was called in to my pharmacy...I took one pill and it zonked me but it also broke the pain cycle. I have five of the six hydrocodone pills left and I've been tempted to take one a time or two since then but I've been able to ride out the pain. LOL....I'm hoarding those five because I'm sure I'll need one again.
Hello Stef. Like you my attacks (because I feel attacked) are brought on by talking or eating and never by wind or cold. I'm lucky because I have responded very well to Tegretol (the 4th drug I tried).
I hope you are doing well.
Pamela
Hi, I saw this forum and found it very interesting. My TMJ doctor told me I have A1, A2 and A3 on the right side and just a mild case on the left. He said there are three types of TN and I have them all. My neurologist agreed with his assessment. I sometimes get the shocks if something barely touches certain areas of my face. I get the teeth killing me and burning sensation from the jaw down to the bottom of my chin, very painful. And sometimes I get the head hurting and found it's the worst of all. Mine starts from the time I get up in the morning until my pills for sleeping finally take effect at night. Last week I had the head pain and felt as if I had the flu because it tightens up my muscles in the neck and shoulders as well. Yesterday it finally calmed down some. I feel better today but very tired and still tight in the neck and shoulders, I think I'll call to make an osteopath appt. One time I had it two weeks solid and thought I was going to just kill myself (I'd never do that). I am taking tegretol. My TMJ doctor saw me on Friday and told me to call the neurologist and up the dose. Also since I take hydrocodone he said my doctor should also check my liver counts because those two medications don't work well together and will effect the liver. I have PKD and am already close to going on dialysis. I also have the cysts in my liver. It is difficult to type, to talk, to eat. I've had TMJ since an accident at age 10. It has gotten worse over the years. I thought it couldn't get any worse until this TN came along. I could sit here and cry WHY ME? but that's a cop out. I will do whatever I have to in order to survive!! Oh, I also use valuim, just one 5 mg ever 8 hours. It helps the muscles that go from the jaw down to the shoulders. It's doesn't make a huge difference for just anyone, it did for me because of my TMJ. I go to the osteopath far less now because of it. Massages do help some if you can stand the deep tissue ones. I have lost my great massage guy so haven't had one in years now. I'm thinking of going and checking out Upper Cervical by a chiropractor. Good luck all, hugs, Lori