17 2 mins 13 yrs

Trigeminal Neuralgia.

After several years remission, the pain is back. Just like the old days. This artwork, done by a sufferer of TN, is a pretty good representation of what the pain is like for me:

My pain is on the right side only, and mainly affects the lower jaw, upper teeth – occasionally the side of my nose. My lower jaw has been taking a beating with pain over the last week. At its worst, it feels like someone is taking my jaw bone and breaking it in half, while at the same time ripping out every tooth. Lightning bolt pain doesn’t even begin to describe it. Sometimes my right ear feels like it’s on fire.

The pains have been lasting several minutes up to one half hour and then, poof! – it disappears completely. I never know when it will return and that is a part of the hell of this affliction. The fear of the pain is a factor even when you’re not experiencing any pain. When the pain is minimal, the fear of the pain becoming more intense will really screw with you.

I have an appointment to see my Neurologist after the Christmas break. My medication doesn’t seem to be helping very much. Wrapping my head in a scarf to cover the right side of my face helps a little. Seven times out of ten, if my nose is completely covered by the scarf the pain will magically disappear. I look ridiculous though, and explaining it can feel awkward.

Wind, even the slightest breeze, triggers pain. Chewing will sometimes bring pain on and sometimes relieve it. Brushing my teeth or washing my face has no effect.

For more Trigeminal Pain artwork click here. It is a hellish affliction.

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17 thoughts on “It’s Back

  1. Monica –

    Very sorry to hear that. Having never heard of the condition away I went:


    Trigeminal neuralgia is a neuropathic disorder of one or both of the trigeminal nerves. Its nickname is "the suicide disease" because it causes one of the most severe pains that a human being can experience, and is not easily controlled or cured. It causes episodes of intense pain in any or all of the following: the ear, eye, lips, nose, scalp, forehead, teeth or jaw on one side of the face […]

    TN brings about stabbing, mind-numbing, electric shock-like pain from just a finger’s glance of the cheek or spontaneously without any stimulation by the patient. Cold wind, high pitched sounds, loud noise such as concerts or crowds, chewing, talking, can aggravate the condition, and for the worst cases, even smiling, a scarf, the wind or hair on the side of the face is too much to bear.

    Strewth, that’s the kind of thing that would have me on the booze for days. Clearly it’s a dreadful thing to experience.

    Are you getting any treatment?

  2. Monica

    I hope you can find some relief with any treatments you are prescribed in the future. It sounds like a horrific condition. You must feel so helpless sometimes.

    Best wishes that you will hopefully manage to rid yourself of this ailment.

  3. Monica,

    Sorry to hear of this. I do remember you discussing it with me some years ago. I hope it will go away again.

  4. I have something similar, albeit less pronounced. It seems to be related to the upper salivary glands in conjunction with the middle ear structure. Have you tried lying down with your head lolling lower off the side of the sofa? No, really, it will help if the sinus/gland/ear thingy is involved.

    Cheers, HNY

  5. Monica

    You have my deepest sympathies.

    I have Post Herpatic Neuralgia which i contracted after having a dose of Shingles and i know that the two conditions are fairly similar.
    I’ve never known pain like it. Dreadfull.
    Like yourself it is only down the one side (right) and when it’s in ‘full flow’ it’s the most debilatating thing.
    I am taking medication called Gabapentin which is a anti viral and anti spasmodic and it seems to work well.

  6. Monica

    How dreadful and even more rotten to have this arround holiday time. I am sure that you have tried loads of things but would just add another to any suggestions you may have had. This is not specific to your condition but the Release Technique and The Sedona Method (more or less the same thing), have had a lot of sucess in general healing and/or dealing with any symptoms.

    I really hope that something will work for you and soon.

  7. Thanks all for your empathy.

    There are tons of treatments that I haven’t tried yet as it had seemed to stop for several years. The Neuro and I will be talking about them next week. I am definitely more open to alternative therapy treatments over surgery. I wouldn’t be averse to having some gamma rays shot into my brain either – but my Neuro doesn’t like that idea. Maybe he’s changed his tune since they have been doing Gamma Knife tx for several years now and it seems to have an 85% success rate so far. I had been neglecting my vitamin B complex supplements so I will start those again, too. I also would like to start visiting a chiropractor. I will check outthe therapies that you suggest, Aileen. thanks.

    Ed and JM, sorry to hear that you suffer from something similar. The anti seizure meds worked great for me when it was in full swing last time. I was allergic to a couple of them – but there are more that can be tried. I also have found that the placement of my head makes a difference sometimes – for example if I tilt it back and slightly to the left, all along with my face covered by the scarf – I can achieve several pain free moments! I will try hanging my head off of the couch as you suggest.

    I remember when you visited Philly several years ago, David – do you remember? We met you and your family in Center City and I believe that I had my head wrapped at the time with an Island wrap skirt thing. My SIL had bought it for me on some tropical island and I couldn’t figure out how to use the damn thing – but it worked perfectly for wrapping my head up! lol I’ll have to dig that out.. That was the tail end of my head wrapping phase last time – – the intense pain disappeared for many years.

    I am feeling very good right now – no pain at all. There is a lot of support and much more awareness of the affliction now and for that I am thankful. I have read horror stories of people having all of their teeth pulled and stuff and going for years not knowing what was wrong because their dentists/doctors were not aware of TN. The link to the artwork that I gave is one of the associations that offers support, information and money for research. They also host monthly meetings throughout the US that anyone can attend for information and support. I truly am thankful for them. I am also thankful that I got my diagnosis quickly.

    Thanks again everyone for your comments.


  8. You are welcome Monica and glad that you are feeling better.
    Before i was properly diagnosed the Doctors thought that i had a Sinus infection and were giving me antibiotics which did no good whatsoever. Then they thought it was a problem with my right ear, then my teeth etc etc.
    I was hospitalised for 3 days before a junior Doctor finally realised what was wrong and started me on anti virals.
    I’ll never forget the experience. If somebody had suggested that i could have had my head amputated i would have done it.
    It was a pain that i will never forget so i know how you feel.
    Since then i have found that the Gabapentin has worked, allthough i will be taking it for the rest of my life.
    At one point the Hospital suggested surgery to cauterise some of the nerves at the back of my head. It could have led to complications such as a permanent facial twitch or numbness so i declined.
    Heres a quick link to Gabapentin. It works..really.


  9. JM – Neurontin! I’ve heard of it and it was one of the meds being discussed when this damnable affliction went into remission. I’ll talk to my Neuro about that when I see him next week.

    At first I was put on Tegretol (Carbamazepine) – allergic – but it was the first time in over 2 months after the onset that I finally went through a day without pain. I adored that medication. Then it was Dilantin (Phenytoin), and I tolerated that for a little over 2 years and it worked pretty well before I developed an allergy to that as well. I went off of it and by then the pain was much more manageable and helped greatly with Elavil (Amitriptyline) which is an old antidepressant but now often used for chronic pain.

    Your story sounds very similar to mine – at first I was triple checked by the dentist who insisted there was nothing there. Then I was treated for sinus infection – 2 courses of antibiotics for that. An E.R. visit due to agonizing pain, and head x-ray, this was the first time that TN was brought up as a possibility. Then my docs Neuro friend who CT scanned me, ruling other possible problems out, and finally the diagnosis.

    I had another episode earlier this evening – then – poof! Gone. Always waiting and dreading for the next time that it hits.

    I am reluctant to get anything like that done to the nerve too, JM. I have heard other horror stories of people ending up with BOTH numbness AND pain at the same time after surgical procedures to help. That would just put me over the edge! People have had the trigeminal totally severed leaving them numb (which is more desirable than the pain I admit), only to have the damn thing grow back and start acting up after years.

    Best to you and I am very glad that you got a good diagnosis and found something that you can tolerate and that helps.

  10. Ben – thank you! I didn’t know that your organization existed. I am going over there now!

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