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I'm 45 years old and I've had TN or TMJ since 2nd grade. My mother remembers me waking up crying in the middle of the night saying my face was hurting. I had an mri done to rule out a tumor and/or cancer which was negative

As an adult more then one dentist/oral surgeon called it TMJ but i call BS. what happens is it 100% happens at night, usually it happens in my dreams first then it literally shocks me awake. at that point i become hysterical and start crying for 2 reasons, first the pain is bright and sharp just like a jolt of electricity shockong me on either side of my jaw, and the knowledge that the next 48 hours will be pure hell.. it bursts from my jaw into my temple .it shocks me every 5-10 seconds and lasts 48 hours. if the u.s government needed a new torture program they'd design a way to inflict this type of pain upon prisoners. it's debilitating to the point when my skin starts to crawl I know it's coming. i have to stop what i'm doing whether it be talking,eating, moving, whatever. swallowing seems to bring it on as well as being touched especially on my face but touching me elsewhere makes it hurt as well.. i can even at times be shocked by feeling a breeze on my face or arms. i actually will flinch away when someone comes close enough to touch me. If i'm talking I have to hold my head to one side and wait for that wave to pass before talking again. I know I must look like I a mentally handicapped cause i'll flinch away when someone comes close enough to touch me to stop them and will suddenly stop all of a sudden, waiting for a wave to pass. So I walk a few steps, stop, wait for the spike then do it all over again.

my burning questions are these.

Why, if I wake up AFTER it comes to me in my sleep but BEFORE I feel it awake it won't occure Again till I fall asleep. I've stayed awake up for 48 hours straight before in order to beat it.i'm literally a walking zombie after that. I literally have to be knocked unconscious to have the pain stop but thats only cause i'm knocked out. Over the years i've had every drug known to man to try and stop it but I never have. Nothings ever made it stop. I have gastriparesis and narcotics wreak havok on my intestinal tract. I'd love to try marijuana but I don't want the stigma associated with it.

Thank god it only occurs every several months, i've been noticing the spikes are getting worse/sharper but lasting shorter like 36 hours instead of 48 hours

In the course of 48 hours i'll have been shocked over 28,000 times. I would not inflict this pain on my worst enemy.

I was breached before being born, I was born with meconium stain and was flaccid upon birth my mother noted that a pediatrition had to come work on me., no one knows how long I was in the womb like that. I was supposed to have been born breached as I mentioned but I flipped round and was born correctly, could this have in some way affected me neurologically? She does mention I was slower a

Funnily enough I also have ideopathic peripheral neuropathy which, again, i've had all my life on the outside of my calves, the only way i've gotten that to stop when I have episodes is to make a shower as hot as I can stand and lay in the bottom so the hot water almost burns my legs. its almost like making my legs hotter then the sharp burning pain i've felt. Thatss how i've dealt with sleeping. I've taking upwards of 14 showers a day to try n get enough sleep, yes, instead of a bed I slept in the shower, now that pain lasts for months, thank the gods its not happened in quit a number of years which I am thankful for as I am now disabled and cannot get on the ground and if somehow I slipped and fell down i'd have no way of getting up


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  • Posted


    Are you under neurologist care ? Has neurologist tried Tegretol ?


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    • Posted

      no neurologist (yet) have an upcoming apt with a maxiofacial specialist later this month on the 25th;

      Never tried tegretol,thats for seizures, right? I am currently taking 600mg of gabapentin 3x a day and thats because of my leg pain, been on it for years......

      no, it's not helped sad

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    • Posted

      No Neurologist yet?! Wow, unbeleivable that you could endure all this an no-one has sent you to see a neurologist. Yes, when you see one, ask to try Tegretol. Usual starting point is 200mg twice a day I beleive. If they give it to you, be aware it will make you dopey until you get used to it. Please keep in touch with what your neurologist says. Yes, Tegretol is for seizures but also used for Tn because it stops/lessens nerve impulses. There are other drugs to try also but Tegretol is the one that usually allows a doc to think it's Tn.
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  • Posted

    Hey there,

    interesting.. whilst the pain and pattern of pain is very TN-intense typical, other things are very much not typical. And I'm not saying ATN, yours is TN caused by an unusual mechanism. From such an early age, something else is wired in here. Happening in sleep, dreams, feeling it a possible oncoming moment, auras perhaps.. this sounds reminiscent of a 'temporal lobe epilepsy', or more associated with sleep, somewhere more frontal. It's a complete guess. Associated  perhaps with clenching or grinding teeth in the sleep could potentially lead that way - all the way from childhood without being noticed by someone else in your sleep. 

    That is comes on at periods of time.. so many allergies can cause a minor swelling or pressure in the brain, perhaps it relates to seasons of mold/fungus or pollen in the summer? It could be an aspect you might have noticed already. 

    I wonder what you think, 

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    • Posted

      hi there proxy, yea, never had anyone notice it in my sleep cause i've always slept alone. never married n no kids. see what you're thinking i'm thinking too it can't just be a reg of of TN or TMJ for that matter. i've always dealt with it the best i can. its so infrequent (every 3 months or so) that i've never bothered to really push n see whats happening because for one what dr's open at 3am? the other is even if i get an appt my episode would be over. i agree  that its "something else"

      this time tho  its different, the past two weeks i've felt my jaws feel funny, the best i can describe it as its what you call an aura i guess. it feels like at anytime if someone or something touches me it will turn it into a full fledged attack. i don't know whats keeping it from happening because nothings changed but i'm very glad for it. but its keeping me walking on eggshells scared to sleep or have someone touch me...

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    • Posted

      for what it's worth i've had a small goose egg bump on my forehead right below my hairline on my left side about ann inch from being directly in the middle. its always been there never bothered to have it looked at cause it's never hurt....

      dont know what it is just throwing that out there

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  • Posted

    Hi Andraste, i'm sure the bump is fine.. the circumstances of your birth cannot be unrelated (only my view) to the development of issues of which you describe. 

    People can suffer from non-convulsive epilepsy, many do. In fact many, if not all people will recognise sleep paralysis, premonition, deja-vu; these are all facets of this part of the brain. Getting a gentle breeze on the arm is quite a typical aura for temporal lobe epilepsy, and yet the TN sufferer would more typically be set off by a breeze on the face. 

    Trigeminal nerve comes together under the temporal lobe, so one can easily see how the sense of crawling on your arm is TN warning since it is a lil electronic overload occuring right where those nerves join. 

    Another thing that seems notable is that you say its changed. The amplitude and duration, and your jaw. Hormones are always a first consideration for something that has changed. A changing balance where estrogen is gradually declining is associated with jawbone changes, although historically it will be estrogen peaks that might underpin the timing of the painful episodes. 

    I couldn't quite precisely be sure of what you meant: 

    Why, if I wake up AFTER it comes to me in my sleep but BEFORE I feel it awake it won't occure Again till I fall asleep.

    but this is the key.

    But before reaching at the tegretol or topamax, or anything, there are some things to try first. It seems ideal for tegretol, here am I saying a form of seizure is causing TN both of which are treated by Tegretol. I think you are right to be wary for you, probably something said in the way you wonder of Marijuana, and that you've dealt with this thoughout your life. There may be a far more hollistic approach that works on getting the balance right in metabolism, hormone balance, cell nutrient/detox immune system boosts, so that you can feel better the sense something coming and become better at taking measures. 


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  • Posted

    I thought my TN was the worst possible pain but you are in a very bad place with yours, I don't know if among your medications you have tried a combination of Lamotridgene, Gabapentine and Carbamazepine.  Quite a powerful mixture but discuss it with your consultant he might think that this could be worth trying or maybe you have tried these.  If you are in the U.S. Try contacting the TN association.  The TN Association UK  are very good and the majority of people are T N sufferas or care for  them so they understand what we go through.   
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