That burning feeling – Trigeminal Neuralgia

UPDATE: I’m pleased to say that I was mis-diagnosed. It’s the first time I’ve ever sought a second opinion on something and I’m glad I did. For those suffering with TN, however, the battle goes on and you have my utmost sympathy. I got to know this condition a little and my cousin suffers from it. It’s not nice.

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Something other than cars for a moment……

I was diagnosed with Trigeminal Neuralgia (TN) a few weeks ago. I’m not writing this post to engender anyone’s sympathy. But if I can help spread a bit of understanding…….

I’ve been reading the postings of people on a TN support board and the one common thread I’ve noticed is frustration over a lack of understanding. It’s as crippling for some people as the condition itself that their families/friends/co-workers don’t seem to have any understanding as to what’s going on with them. Maybe this post can help some people understand that this condition isn’t psychological. Trigeminal Neuralgia is very, very real and for many people, it’s very, very painful.

The trigeminal nerve is the one coloured yellow in the image to the right. I’m kind of new to this, but what I believe happens is that some of the protective coating around the nerve wears away in places and the nerve becomes particularly sensitive. Sometimes it reacts to certain triggers. Sometimes it just misbehaves all on its own, sending pain throughout the whole nerve in various forms.

Note: you have a two of these nerves, one on either side of your face. It’s normal for people to experience TN just on one side (for me, it’s the right side). People unfortunate enough to have it on both sides have Atypical Trigeminal Neuralgia.

For me, the pain I experience takes the form of a burning sensation. It can happen any time of its own accord, but it also gets triggered by any cool breeze blowing across my skin. Just a breeze from me walking in still air is enough to trigger it if the air is cool enough. The pain generally starts around the corner of my mouth and moves back towards my ear in a wave. This happens every 10 minutes or so when I’m awake. It’s bearable in terms of intensity but the constancy gets quite annoying as the day goes on. It doesn’t bother me at all when I’m asleep.

Other people describe their pain as being like electric shocks to the jaw, or constant stabbing. One guy described it as like having a mouth full of razor blades. TN is as different as the people who have it and I’m thankful that mine seems to be quite mild compared to that experienced by others. I hope to find effective treatment before it gets any worse.

One of the hard parts about this condition is that it has no symptoms that are visible on the outside. People can’t see why you might be temporarily impaired in what you’re doing. For 70% of my waking hours I’m absolutely fine and even for the other 30%, I still look absolutely OK. The pain is, quite literally, all in my head.

Personally speaking, I still function as normal every day. The pain is not so intense that I can’t work through it, though I seem to be more prone to headaches developing throughout the day. Others aren’t so lucky.

Treatment seems to be sporadic, depending on the person. There are various medications used but no single medication is guaranteed to work for a particular person. The stuff I’m taking now doesn’t seem to be doing much, though maybe I’d be a whole lot worse if I wasn’t taking it. I don’t know. Either way, I’ll be back to my GP soon, to seek something more effective.

There are more invasive treatments as well, things that involve cutting you and poking around very close to your brain. Not something I’d prefer to contemplate.

I’m not completely sure how to conclude this post. I can’t offer advice as to what you should do if one of your friends or family members has this condition. There’s little that you can do for them and for some, a hug might be excruciating (triggers for some people include talking, eating, shaving or just moving).

But as with people undergoing any medical difficulty, your support and understanding IS important. It would mean a lot to them, I’m sure. If you’ve got friends, family or workmates who complain of severe pain to one side of the face or similar symptoms, they’re not faking it even if you can’t see anything. This thing is real.

I guess the other outcome for me – the more personal one – is that I might not be writing on here so much. I still love writing about cars and I have a post brewing about Aussie politics and the media that I’ve just got to get out of me. But things will likely be slower for a little while, until I learn to live with my new friend.

Hopefully we can find the right treatment and it won’t take too long.

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33 Comments

  1. Good luck, I hope you find a good treatment. If your own doctor is not managing to crack-it, make sure you get referral to a good pain specialist. Neuropathic pain is the most difficult to treat as I am sure you are aware, so get expert help.

    1. Thanks Doc. I’ll be seeking a referral to a neuro later this week. Getting an near-term appointment might be a bit tougher, but will try.

  2. Hey matey, that is not good news. In a way perhaps, as it now has a name, but still. I do hope there is a cure or indeed something for this that sort of makes life more manageable, without some serious effects. Hope it stays at a level you can handle.

    As you know (you met the lady) I spent a long time living with someone battling with an enemy inside. The sheer lack of understanding from the outside world was harsh to say the least.

    Let us all stop and think for a moment, if you know someone who has a certain condition, be supportive, even if it seems there is nothing wrong on the outside….

    Nic

  3. Sorry to hear mate, hoping you find appropriate medication etc. maybe a move to warmer climates would help, I know of a great littlemot in WA although the wind may be an issue for you.

  4. Sorry to hear about this mate, I know you will get thru this and come out victorious either way. I hope the pains from my recent run in with the walls start going away my self. Take care and you have a whole community out there who can offer encouragement (All of us Saabers) most do not! 🙂

  5. Hopefully they will find a suitable treatment soon. I would point out that regrafting is improving tremendously at the moment, so although there might not be a solution at the moment, there could be one a few years down the line. Some of the latest stem cell research is quite remarkable.

  6. Hope you can get this under control. My wife contracted it about a year ago and nearly had a death wish. First MD over prescribed and made it worse. Specialist got it right and now has it completely taken care of with two pills a day. She dare not miss one or it returns. Never cured but can be managed. Take care. Don’t leave.
    Cheers,
    Gene

  7. Sorry to hear this. I hope it’s of a temporary nature. I know it can be disabling because my wife was diagnosed with this when shooting pains would just completely disable her. Fortunately though, her’s disappeared after awhile. Hope you’s does too.

  8. Swade, sorry to hear about this. Lets pray that they find something to control the pain or eliminate it. I wish you the best.

    How is that old truck of yours doing? The Brumby……running well? My Saabs and old ’73 running well.

    the best to you.
    Dick

  9. Sorry to hear this. It is always a problem with these “invisible” diseases.
    Hope you find the cure.

    Keep on keeping on
    Hans H

  10. Steven,
    I was diagnosed with the bastard cousin of your malady, Migrainous Neuralgia (Cluster Headaches), so I’ve done quite a research on the subject, and have talked to a lot of people with either Trigeminal, Migraines, or Clusters. I do not envy your situation, but I can only hope that the people around you at least try to understand that you are in excruciating pain. I’ve heard comments from cohorts like “Oh, just pop a few pills and you’d be fine” to “It’s just a headache, right?”… It’s a miracle that I’m not in prison for killing someone.
    I’ve found some relief in recent years, but I don’t think I can ever completely divorce myself from this – it’s a nerve thing. If you want to hear about the relief (may sound hoaky to some), ping me, and I’ll be happy to share – but I can’t guarantee success.
    I know that there are no “cures” per se, but I hope you find relief, soon.

  11. First there was carbamazepine which was released in the 1970’s for trigeminal neuralgia. Gabapentin came next in the 1990’s. Now there is Pregabalin. As far as drug treatment is concerned at least you have multiple options. The limiting factor for every drug treatment is side effects. Any drug which can be used as a seizure medication like all of these medications can sedate you if you get enough of it. Then the question is: are you a happy drunk or an unhappy drunk? And, oh by the way watch out for allergic drug rashes with carbamazepine.

    My advise: treat for benefit without significant side effects and for an improving trend. And, remember when you run out of options, I can probably come up with another potential treatment.

    The last person I saw with TN responded nicely to Gabapentin. You might be considered a little old for me, but then the way you like cars maybe I should consider you an Adolescent. Good luck and you never know when a Professor of Child Neurology might come in handy.

  12. I hope you find the Doctor and the treatment that makes your live as normal as possible. You can’t see pain, and even in the XXI century, people only believe what they see . 🙁

    God luck mate.

  13. What a pain in the face.

    Have you looked into the Wikipedia article? it provides interesting information. The German article tends to be a bit more into the direction of a direct nerve/ vascular contact (70-100% of all cases), and is also a bit more positive towards surgical intervention than the English one.

    In any case, it is a complicated situation, and extensive diagnosis into the pathogenesis should imho be done before surgery.

    Don’t give up!

  14. Really sorry to read this Swade. I hope for the best and for you to be able to find a solution that works for you.

    Don’t give up, find the right doctor for you who you “click” with. And use your internet skills to pinpoint your options, seems to be many options out there.

  15. Nerve pain is nasty as I have my own issues and is why I am so sympathetic. Are there any alternative like Acupuncture or Yoga. I know this may sound off the wall but some of these alternative can be beneficial.

  16. Thanks all for your kind thoughts and occasional advice. I’m heading back to the Doc on Friday and will seek an appointment with a Neurologist after that. I’m still in the early days and it’s being quite cooperative so far, but hopefully we can find some reasons, maybe even something that can be treated.

    This condition and it’s causes are a mystery for so many people who have it. I consider myself fortunate in that mine’s not so painful that I can’t function, which gives me time and opportunity to seek some treatment with a fairly clear mind, rather than a desperate mind.

  17. You’re in my thoughts and prayers Steven! Although your case may be relatively “mild”, it must wear on you to have such constant aggravation. Regarding acupuncture, I think it may be worth a visit to a reputable practitioner. I was a skeptic until a few years ago, when acupuncture helped to ease some chronic pain for me. I recently referred a co-worker to the same acupuncture clinic for treatment of her Bells palsy, and within a few DAYS of onset, her face was restored to normal…fully functional without a trace of numbness etc. The clinic actually had a specific treatment devised for this condition. Perhaps there is one for TN?

    Mark

  18. Steven!

    You know I will Always listen and give advice from my own experience with having a chronic neurological disease. MS seldom give the painful facial sensation that TN gives but I can relate to them.

    So Please! Write to me and complain, shout out your frustration and anger towards this freggin disease. I’ll listen. And if there’s something I can forward to my Neurologist I’ll be more than happy to help out.

    Take care mate! Cheers/Tom

    Ps. Signing out from an Airport in Nyköping Sweden. Going to visit good friend Robin Morley in England Ds.

  19. Sorry to hear this Swade, but the things doctors can do with a laser and a knife these days is crazy. I have a feeling a nerve specialist can fix you up. Might take a bit of traveling though.

  20. I’ve had it for over 7 years, one MVD and still in intense pain yet highly functional due to incredible tolerance. Still hurts! I’m bilateral too. I talk for a living…ugh. At the moment it feels like someone is sticking a hot poker into my cerebellum. Yah Pain! Honestly, I do have moments/days/months when I just want to lock my self in a room and do nothing. Or even worse there are moments when I contemplate how I can end the pain permanently. Not that I would do that but I do have those thoughts…just sayin. It’s bad you know.

  21. Hey Swade, great post! I came across it through a facebook page. One thing I thought I might add in relation to advice for friends and family:

    I’ve suffered from neuralgia for six years, since I was 14 years old. One of the biggest and best ways to show support to someone who is suffering from TN (or really ANY disease or disorder!) is to spend a couple minutes researching what it is! It literally takes 5 minutes with google to get a decent understanding of the sitaution (and it can keep you from saying something stupid like “Maybe tylenol will help”). It shows that you really care about the person. And honestly, I got tired of having to explain it in detail to everyone. It’s bad enough to live with it, but talking about it ALL THE TIME can get kinda frustrating and depressing.

    Finally, the biggest thing for me in terms of being shown love and support with this disorder is being able to tell whoever I’m with “my nerve is hurting” and let that be enough for them to realize the situation and what it entails. It does NOT mean I want to go into detail about how it hurts or why tylenol will not help. It does NOT mean my head hurts and I want to keep goofing around and playing games. “My nerve hurts” is what I say when I’m in serious pain and need to just shut down for a few minutes but do not want to be rude or snobby or whinny.

    The best support my friends and family can show me when I’m in pain is me telling them “my nerve hurts” and having them quiet down and just sit through it with me, not expecting me to carry on pretending I’m okay when I’m not.

    And a huge thank you to all of you who have stuck with us sufferers. We really are so greatful to have you guys!

  22. Hi Steven…ive had TN for 12 yrs. It’s not an easy road. Love, support, & a good doc is what will help you get through this awful disease. I agree w what Kylie said, let ppl know that ur hurting. Because there are times (& a lot of those times last minute) we have to change plans bc an attack, the fatigue that comes w TN, or just in pain, plans have to cancelled. Be open to ur friends & family about what ur going through. It’s makes it easier on us as well as them. Hang in there, my TN friend!!

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