I was curious who all has had a change in the type and/or location of pain. I was dx with ATN branching along regions V1 and V3, with no identifiable triggers last August. Recently my pain is now deep in the ear, pulsating and sharp episode along branch V2 with some numbness and facial muscle issues. Also, I found out the hard recently that wind is now a trigger as is cold touch to my cheek.
Thanks for any input. I am usually positive about my other health issues, but I am finding it harder to find TN patients to talk with, just not as common.
Hi Emily,
Since the start of this evil journey of TN I have notice the location of the pain has moved some what but mostly intensified since the start. With triggers there times I wonder if just having huge bubble around my head would help, as everything seems to be a trigger for me. Then I think about what a dork I would be and give up that idea. I have read some where (not that I can remember now) that the pain can change or increase over time. I hope you get some relief from pain soon.
Yes Emily, mine has changed and moved about and the type of pain has been different at times too.one side of my face is quite numb now , when you tap that side of the face it feels hollow if you know what I mean? The wind plays havoc with tha side too. I just returned from a vacation on a vey windy island, I had to be very careful!
I started with pain on third branch. Lower jaw and numb lower right side of lip. Then went to upper jaw right side.
Last year travelled to my right eye and forehead. I can touch different points on my right side and get zapped inches away. Amazing. Like electricity sparking everywhere. Weird.
This week the noise in my right ear was driving me nuts. So googled and found this great site. Thought I was going crazy having ear problems but from messages on here tells me others have same pain.
Also this week having pins and needles along the side of my tongue. Think now it can't go any further. Worried to see if it crosses over to left side. Be my worst nightmare.
I have read heaps of topics in this site and going to try some of their great suggestions. Chemist here I come Monday morning. Do anything for sleep. Sleep is where I dont have pain. Unless it wakes me up. Once a wake here I go again.
Google Trigeminal Nerve. Will show you where and what the cranial nerve does.
OMG! That is exactly what has happened to me! It was ice pick down my head, now it's ice pick in my ear! I live in a windy high dessert now. How much higher can my meds go? Is this the rest of my life? Bummer...
my symptoms switch around b/w jaw , teeth & checks- and it constantly moves to difft teeth… has been frustrating for some doc offices b/c when they ask where it hurts, I tell them it moves. they’re confused & i understand, but don’t know what else to say!
Mine started behind my eye and was like that for almost a year before moving to my cheek and teeth/jaw. It feels like somebody is pulling my face down and when I look in the mirror I expect to see that side drooping. Half my tongue also goes numb which scares me when it happens. Nowadays it's a constant surprise as to where and when and how bad the pain will be :(
I haven't been on in a while, and was getting on to ask about this very thing. My first appointment with the neurologist isn't until the end of September. I've had the typical stabbing pain in my face on and off for about two years. It goes through periods of nothing and bam, right back again. During the really bad episodes, the lingering pain settles in my eye and I feel like I could gouge my eyeball out. Just recently, it has also gone to my ear. I have a deep earache and I know it's associated with TN. I do not have pain when I'm sleeping. I don't know what to do. My hope is that it will stop and give me a break, but I don't know. If this keeps up, I'll have to go to my regular doc and I know he won't be able to help me.
Hey Emily, Yes I have recently realized that pain has started to migrate to my left side as well as my right. I am impressed with your precise knowledge as to the branch locations and all. My pain is often in my ear but can often in my eye. Wind is a big trigger as is cold. Lets face it TN is a bummer. AB
i have always had changes....from jaw to cheek to eye to ear to mastoid .....all over the map. that is what makes for beginners to struggle w/ what is wrong w/ me to diagnosis....yrs later....and too late. out of control pain. so sorry to hear this ....i jumps from neck to back of head to nose all over. teeth....unbelievable, i know. robin
sounds like me yrs ago. a journey into the center of the earth. i tell ya. mine is an unbelievable story w/ diagnosis they would have missed.
Kari said:
Hi Emily, Since the start of this evil journey of TN I have notice the location of the pain has moved some what but mostly intensified since the start. With triggers there times I wonder if just having huge bubble around my head would help, as everything seems to be a trigger for me. Then I think about what a dork I would be and give up that idea. I have read some where (not that I can remember now) that the pain can change or increase over time. I hope you get some relief from pain soon.
OMG, THAT IS EXACTLY ME, THE EAR AND ICE PICK WHEN ALL THIS STARTED...........TOOK A YR OR LONGER TILL THEY SAW A HERPATIC LESION IN EAR.......ALL ENDED UP INTO THIS 15 YRS LATER.......SHINGLES UNSEEN INTO FACIAL AND CRANIAL NERVE DAMAGE=TN...OMG EXACTLY ME YRS AGO.
Tia said:
OMG! That is exactly what has happened to me! It was ice pick down my head, now it's ice pick in my ear! I live in a windy high dessert now. How much higher can my meds go? Is this the rest of my life? Bummer...
Thanks for all the replies! I am glad I am not alone, though I wish none of us were hurting with this horiible condition. The ice pick in ear issue seems to also cause numbness in there which I think I am mistakign for deafness at times. Tonight, my ear/back of throat tingles so bad that it has flared my gagging reflex. I can handle the migraines, fibro, connective tissue disorder pretty well, but goodness this TN beast is ridiculous.
Emily; I acquired my ATN from a dental surgery when doctor was implanting a medical device on my jaw.
What you describe sounds familiar with my condition same branch areas. My V1 is the major concern to me since my eye is causing extreme pain, sharp stabbing pain at all times. In addition add a burning sensation around the eye and a swelling on the Rside that causes additional pressure to the eye. I thought I would be loosing vision because all is blurry and the constant pain thought would be causing damage to the opticalnerve, but when I saw the opthalmologist and after test only was mentioned of new glasses but no damage. I would keep checking on it though just in case.
I also have the pulsating pain in the middle ear, I don't know what that is.
Question for you, by any chance do you experience a constant sound like in your head? 'cause I do and drivees me crazy. I'm trying to adapt to it because it sounds like a waterfall most of the time, then sounds louder and louder and it drrives you out of control. The thing is it never stops and I read it could be common on ATN patients.
Yes, I do experience that sound, I have since I was a teen so I am not sure if it is related to TN in my case or not since I have only technically had TN for a year... But I do know what you mean. Here recently the pain is moving into my ear so bad and down my throat, so I am either hearing a buzz at times or loosing hearing at other times. I wish it would leave my ear alone at least...
I have heard a few other talk about TN after dental work... I am fearful even more now with this TN that my already hard to numb nerves will be on fire. I have been avoiding dental surgery on my wisdom tooth on opposite side because of that. How long after the procedure did you start havign Tn like symptoms?
Iraida Lopez-King said:
Emily; I acquired my ATN from a dental surgery when doctor was implanting a medical device on my jaw.
What you describe sounds familiar with my condition same branch areas. My V1 is the major concern to me since my eye is causing extreme pain, sharp stabbing pain at all times. In addition add a burning sensation around the eye and a swelling on the Rside that causes additional pressure to the eye. I thought I would be loosing vision because all is blurry and the constant pain thought would be causing damage to the opticalnerve, but when I saw the opthalmologist and after test only was mentioned of new glasses but no damage. I would keep checking on it though just in case.
I also have the pulsating pain in the middle ear, I don't know what that is.
Question for you, by any chance do you experience a constant sound like in your head? 'cause I do and drivees me crazy. I'm trying to adapt to it because it sounds like a waterfall most of the time, then sounds louder and louder and it drrives you out of control. The thing is it never stops and I read it could be common on ATN patients.
My type of pain changed following a Rhyzotomy. Added to my electric shock pains was an intense migraine type headache on the left hand side. Following an MVD, the electric pain has eased but am left with residual pain in v2 and the same intense migraine headaches. I am undergoing treatment at Johns Hopkins to try and relieve the symptoms.
The pain was all over the place left right scalp jaw teeth.
But the MRIs showed I could have a MVD and I did in 2006. with some success
In 2010 I had a almost total loss of feeling in half of my toung and my left cheek started to droop.
They diagnosed a Tornwald Cyst that was in my synus and across a branch of the Trigeminal nerve.
Once this was removed I am back to just plain old Typical TN. left side only very predictable.
Very painful VERY TN.
I say this because everyone is different I suppose and quite often as I found the TN can be affected by other issues and this can make it very hard to pin down (aside from the normal difficulties of diagnosis)
My pain specialist did advise me that a "Great Deal" of new work is going into "new Treatment" for TN.
Great I wonder when this "Great Deal" will equal a "New Treatment" that works!!! Yes call me a sceptic.
(I am seeing the pain specailist for my back which I have stuffed as IT just seemed that I had not seen the inside of a hospital nearly enough recently)
My TN pain has come back after MVD two and half years ago. Now it is bilateral and my head itches after I have a flare up. The itch isn't painful but very very demanding and so I am constantly scratching my head when my pain is bad. Isn't this strange?
Sure! I was just curious what others are experiencing, or have experienced. I am somewhat new to this type of pain condition, though I have had other coniditions for some years now. I am still trying to get a proper read of my recent MRI regarding the anatomical label that doesn't seem right, but I am sure Mayo will go over it with me when I get there. If you don't mind me asking, what approach(es) has JH taken so far? I am not able ot tolerate most meds, so I'd like to look at any options.
Take Care :)
MDjon said:
Hi Emily,
My type of pain changed following a Rhyzotomy. Added to my electric shock pains was an intense migraine type headache on the left hand side. Following an MVD, the electric pain has eased but am left with residual pain in v2 and the same intense migraine headaches. I am undergoing treatment at Johns Hopkins to try and relieve the symptoms.
SimonL: Wow, a journey for you! I am curious too what the new treatment will be... hhmmm... Have you been in the hospital before for TN? Is that what you meant? Hugs...
Tara Cain- My cheek and eyelid itches much liek your scalp! Drives me bananas! Very rarely my hairline will also itch. Hugs
SimonL said:
I was diagnosed in 2005 with Atypical TN.
The pain was all over the place left right scalp jaw teeth.
But the MRIs showed I could have a MVD and I did in 2006. with some success
In 2010 I had a almost total loss of feeling in half of my toung and my left cheek started to droop.
They diagnosed a Tornwald Cyst that was in my synus and across a branch of the Trigeminal nerve.
Once this was removed I am back to just plain old Typical TN. left side only very predictable.
Very painful VERY TN.
I say this because everyone is different I suppose and quite often as I found the TN can be affected by other issues and this can make it very hard to pin down (aside from the normal difficulties of diagnosis)
My pain specialist did advise me that a "Great Deal" of new work is going into "new Treatment" for TN.
Great I wonder when this "Great Deal" will equal a "New Treatment" that works!!! Yes call me a sceptic.
(I am seeing the pain specailist for my back which I have stuffed as IT just seemed that I had not seen the inside of a hospital nearly enough recently)