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I would like to know more on trigeminal neuralgia

Nov 22, 2016 8:07 PM

Hi everyone I've been searching on this topic and would like more info and sources. I've been having this stabbing electrifying pain in my right ear and right side of my face for a few years now, the doctors don't seem to find it important but it's been getting worst lately. I sometimes have the impression my head in on fire especially on my right side. And that someone just stabbed me in the ear. Would like to know more and get some advice. Tks 😊

Nov 22, 2016 9:53 PM

Hi Juliacat and welcome to the community. I'm soo sorry that you're suffering from this as I know it's not an easy condition to live with (no chronic condition is easy to live with).
I have left sided trigeminal neuralgia in all three branches of my left face. I get it in and behind my left ear, along the whole left side of my jaw and cheek and in, behind, above and beside my left eye.
I feel like I have someone constantly punching all three areas and I could quite happily most of the time pull every single tooth out along the top and bottom of the left side of my jaw.
Last year I was admitted to hospital twice for it.
Basically the trigeminal nerve has three branches on each side of the face and the pain can be caused by something like a vein pressing on the actual nerve on the side you have the neuralgia pain. Triggers for trigeminal neuralgia could be anything from stress, brushing your teeth, eating something that's too hot or cold etc....
Mine was triggered by stress (long story) and I have the pain constantly on the left but now I'm starting to feel the pain in my right ear and occasionally along my right jaw and/or eye.
There is info if you ask Google, when I researched it it said that the pain is intermittent and normally older women get it (after menopause I think but will need to check and I'll try to post some links for it in a bit).
I'm in my mid 30's and I have constant pain not intermittently and the pain can be very debilitating. I also have depression and anxiety (GP thinks I have Post Traumatic Stress disorder but not officially dx yet, waiting to see pysc for that) and I've found if one is high they're all high, all mine seem to be very interlinked.
You need to keep going back to the doctors and push them to do something about it....give you pain meds for it or refer you to the pain clinic.
Trying to find the right medications that will help manage the pain can be a very frustrating and slow process, everyone is different and react differently to different medications. It took a long time with 2 admissions to hospital last year before the right combination was found for me.
There are many different websites that can give you info on it.
Just on a side note....have you been to the dentist recently? Did they make sure all your teeth are healthy? Do you grind and/or clench your teeth? Has TMJ been ruled out? (Altho mine started out as TMJ). It's best to get everything checked over first then you can go back to the doctor to push them to take you seriously, keep a pain log/diary and bring it into show the doctor as well.

I hope you have a light pain day/night xx

Nov 23, 2016 8:04 AM

Thank you Sezzy for your kind words.
I went on the internet to for some info it did help but am still searching. I seem to have most of the discribed symptoms. Have been suffering from chronic pain for most of my life but didn't know until last year when I was finally admitted to the pain clinic. I also have a acoustic neurinoma ( a non cancerous brain tumor on my right ear nerve) I think this is probably the source of my face pain. The doctors don't really know what to do about it except make me passe à annual MRI. They say that I shouldn't be having so much pain on that spot. Have been noting my symptoms every day for the past three month. When I brought my diary at the doctor ( my personnal doc not the pain clinic one) he didn't even want to see it. But am keeping faith and being positive. 😊

Reading on this forum is quite helful i really appreciate all the info.

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