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11-17-2008, 09:14 AM
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New Member
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I don't know how you do with the Tegretol and its side effects but I get up to 1000 mgs during my attacks and I get NO relief from it. My neuro asked me last week when I asked for a refill why I take it then and I said, "at least I'm being proactive- if you tell me pulling my eyelids across the room might help I would give it a shot!" Good luck!
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11-18-2008, 01:20 PM
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My dentist diagnosed my ATN, after my MS diagnosis. My neuro didn't see anything in the MRI to cause the pain in my ear/jaw, so she sent me to a head & neck/ENT doc, who said I had TMG and sent me to the dentist.
My pain is similar to Bassetcase, any touch of the ear can send me through the roof. My ear aches, though I can tell the pain is not in the ear itself. It feels like someone has put a needle and thread through my eardrum and is pulling on the needle, then hitting my ear with an iron pan. My pain doesn't come and go in moments or hours, but is non-stop for days or weeks. Some days the pain isn't too bad, and then there are days like today, where wearing headphones to transcribe dictation is almost beyond endurance. I can also get pains in my upper jaw/teeth, though I have nothing wrong with my teeth, and wear a night guard so I know it's not TMG pain. I even get pains behind my eyes and down my neck. It is worse on my right side and getting worse, and now progressing on my left side. I have trouble sleeping, because I can't rest my head on my right side. I don't know what I'm going to do when both sides kick into high gear at the same time  I don't know how unusual it is to have TN/ATN with MS, but if someone can have atypical anything, its me. I generally break with averages: average disease courses, or respond to average treatment in the average way. I guess I'm just above average  Still working on meditation with this pain. It works for migraine, but so far, not for this.
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Relax--It only hurts until you die . I'm still walking upright and six feet above ground. . |
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| "Thanks for this!" says: | dmplaura (11-25-2008) |
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11-25-2008, 04:33 AM
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Magnate
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There's a fair percentage of MS'ers with TN or ATN.. now granted, ATN is less common than TN in itself.
I had my first manifestation of TN in the form of type 1 (classic TN?) attack me 5 years back (approx). It was short lived. I then within the past 2-3 years have experiened the ATN variety off and on. It was a dentist in my case that diagnosed my TN (non specific) following EMG. I can recall them trying me on Carbamazepine back then, and wouldn't you know it, I'm one of the 'lucky' ones that experienced a very rare side effect, pitch perception (with music). Go figure! I also can't take Neurontin (Gabapentin) due to the side effects it caused me. I'm at a loss as to what I can take now, besides Clonazepam that I need to wean off, because while my doctor prescribed "As needed", it's not a good thing when 9/10 days pain relief is "As needed" is it?  Clonazepam is the ONLY drug that bites through the burning pain I get however. So I don't know where we'll go next. Additionally, there is surgery as an option, but it's less likely to be successful I read in cases of ATN versus type 1 TN. In any event, it is nice to know we're not alone. I've met folks too in other places outside of NT who also have TN. I think TN is one of those underreported conditions to be fair, and mis/undiagnosed as well.
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2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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11-25-2008, 10:45 AM
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Fabulous Belizean Member
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Laura, the only thing that works for me is Butalbital (generic name for Fioricet), which dulls the exquisite pain, and puts me to sleep.
but because it's a barbiturate (with caffeine and Tylenol) it cannot be mixed with alcohol. like you, I cannot take Neurontin (rare side effect, made me extremely loopy, I'll spare you the graphic description after only two doses), Pharmacist and Neuro both said "Make SURE you never take it again!" I was recently diagnosed with ATN, and have had MS for nearly 21 years. mine was said to be "Atypical" because it's bilateral, an equal side-of-the-head striker. TN can affect some or all of these areas usually on one side of the face although more rarely (in about 5% of cases) it is bilateral. http://www.mult-sclerosis.org/trigeminalneuralgia.html I get quick icepick stabs, mostly in my right ear, sometimes behind my right ear, sometimes in my upper cheekbone area, and sometimes elsewhere on my head. more rarely, the TN zings my lower jaw, and less frequently, inside the left ear. least frequently, is a low, dull throbbing pain that sticks around for hours, it's bearable, if I lay down, rest, and darken the room. and nobody better TALK to me while it's going on, as my usual self-control goes out the window. TN is my *least* favorite symptom of MS.   more info here, on research and treatment: http://www.mult-sclerosis.org/news/A...Neuralgia.html
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And the trouble is... if you don't risk anything, you risk even more. - Erica Jong |
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| "Thanks for this!" says: | dmplaura (11-27-2008) |
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11-27-2008, 02:19 AM
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Magnate
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I'm really curious for my neuro to MRI me again, more closely. They only MRI'ed my brain. I'm not even sure if the brain stem was MRI'ed during it, but it would be interesting to see what's happening there.
Burning mouth and TN/ATN. I'm betting it's a hotbed of activity. So there are a few of us MS'ers here that have the dreaded TN or ATN.  Definitely the worst symptom, BY FAR! Do you find that your TN is aggravated by weather or pressure changes? I find this can set mine off.
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2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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11-28-2008, 08:57 AM
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Junior Member
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Well, I do not have the MS, but flying is out of the question. For years, I was holding my head writhing with pain while everyone else was joyously celebrating the vacation, family reunion or whatever event we were going to attend. Every one kept asking me, "Well, why don't you just chew some gum, or hold your nose and blow lightly to clear your ears ?" They thought I was being a wimp, and I certainly could not understand why I had such a time with it. Until I was diagnosed with the TN - also, if my sinuses get stopped up or I have a cold, it is likely to set off an episode. I would assume that anytime there is more pressure in your head everything is compressed and increases the pressure on the affected nerve.
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| "Thanks for this!" says: | dmplaura (11-28-2008) |
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11-28-2008, 12:16 PM
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Grand Magnate
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Dm and Basset.
Sorry for the pains your are both living with. All of us have diffrent triggers. Weather and pressure change is a huge one . I get triggered by wind and brezzes, chewing sometimes , brushing teeth on left side. And cold weather my steel plates get cold and then I am a mess We Are Not Wimps ! We have an invisible monster chewing on us ! Far from wimps lol.  Write down things that you find trigger your pain to flare or eppisode to come and try to accomadate , avoid or learn new way to "deal" . Low pain wishes for you both PEACE BMW |
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| "Thanks for this!" says: | dmplaura (11-28-2008) |
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04-21-2009, 05:11 PM
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#8 | ||
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New Member
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My TN started with pain in my teeth. I would go to the dentist complaining of pain on the right side. Eventually, I had a root canal on every tooth on the right side of my mouth trying to battle the pain. It was useless. When that didn't work I was sent to the Endodontist, who after an unsuccessful root end resection, decided to send me to the neurologist. Kudos to the Endodontist that recognized the TN.
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06-06-2009, 04:26 PM
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Junior Member
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Resurrecting this thread as one of the diagnoses I have from my neurologist (I am fairly new to the board) is "atypical facial pain"/"atypical trigeminal neurgalgia". Mine sometimes is pain, sometimes is a tingling/electircal/ticklish [but not pleasent ticklish] feeling, or a tingling like when your foot goes to sleep sorta feeling, and sometimes is more like a pressure feeling, too...Even maybe a "shooting" pressure feeling, if that makes *any* sense (it is a hard feeling to describe, 'shooting pressure' or 'stabbing pressure' is the best I can come up with, I think...). Sometimes there is a numbness component to it, or a numbness-and-yet-increased sensitivity component to it. Or sometimes it's a very hard feeling to describe at all, except that, despite not being pain *per se* at that point, it is a distracting/annoying enough just *sensation* to make me wanna tear my face off to get rid of the ticklish/tingly/pressure/shooting pressure.increased sensation.whatever. Anyone else had anything similar?
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02-07-2011, 06:02 PM
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#10 | ||
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New Member
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I was looking at various postings and saw yours describing bilateral facial pain that was very much like mine (numbness, tingling, deep pain on both sides). I was diagnoses several months ago. Anyway, I was wondering if you got better (I hope the answer is yes!) and if not what medications you are taking or how you are coping. A little about me: I am a 43 year old lawyer and mom living in NYC. This is no fun! All the best, Marnie
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Tegretol
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