We need your help now
Support from readers like you keeps The Journal open.
You are visiting us because we have something you value. Independent, unbiased news that tells the truth. Advertising revenue goes some way to support our mission, but this year it has not been enough.
If you've seen value in our reporting, please contribute what you can, so we can continue to produce accurate and meaningful journalism. For everyone who needs it.
Sign in. It’s quick, free and it’s up to you.
An account is an optional way to support the work we do. Find out more.
By continuing, you are indicating that you accept our Terms of Service and Privacy Policy.
I’VE ALWAYS THOUGHT of my condition as making me the world’s worst super hero.
Not that it gives me any special powers or anything but because it often forces me to assume a secret identity.
For the most part, I’m a mild mannered reporter with The42.ie but there are occasions where I use that persona to hide what is really going on, quite literally, beneath the skin.
Up until relatively recently — one or two blips aside — I feel like I’ve been very good at hiding it but the problem with masks is they invariably slip. Over the past week, mine did spectacularly.
The truth of the matter is that I suffer from chronic pain. I have done for over a year. Specifically I suffer from trigeminal neuralgia. If you’re wondering what the hell trigeminal neuralgia (TN) is I don’t blame you. I’ve had it this long and I still have to google the spelling of it to make sure I get it right.
I’ve previously written about how I developed TN (and got to grow a beard so it’s not all bad I guess) but this is more about me explaining why I might not always be the nicest person to be around.
Here comes the science bit.
The trigeminal nerve is the fifth cranial nerve and its primary function is to send pain messages to your brain. It usually works perfectly normally and you’re never even aware of its existence.
Neurosurgeons aren’t exactly in agreement as to why it sometimes stops working the way it should but more and more research is pointing towards it being damage to the protective coating around the nerve. For me, it was a bout of shingles on the face that did the business.
The trigeminal nerve has three branches on either side of your face — one that runs through your temple, above your eye and around your forehead, one that runs through your cheek, upper jaw, gums and teeth and one that runs through your lower jaw, teeth and gums. Actually, here’s a handy map:
Now most sufferers have pain in one branch, usually the middle or lower. My attacks come in the top two but, often, the signals are so muddled the pain feels like it’s impacting my whole face.
And I don’t mean to boast here but, according to the Trigeminal Neuralgia Association UK, TN is regarded as “the most painful condition that is known in the medical world” and while I don’t know if that’s actually true or not, I can tell you it’s very, very sore.
Imagine the most painful thing that’s ever happened to you, now multiply it by about 10, and then live with the risk of it happening Every. Single. Day.
When it hits, it’s like somebody has stabbed me in the face. Sometimes that lasts for seconds, sometimes it’s minutes but the after effects can last for hours and often days.
Following an attack I don’t want to eat, drink, talk and, to be perfectly frank, just having to endure it becomes an absolute chore.
Perhaps for that reason, TN is sometimes known as the ‘suicide disease’ with the Daily Mail — I know — saying that 27% of suffers take their own life while the BBC have also used the term when reporting on the condition.
The fact is, from even just the most basic research, it’s impossible to find reliable statistics to suggest it’s a disease that causes more people to take their lives than any other so, from my point of view at least, it would be great if people stopped using the term.
HOWEVER…
That’s not to say it can’t make you feel pretty dismayed with your lot in life.
I can also tell you that while chronic pain is not easy to live with, living with someone who suffers from it must be even worse.
When the pain hits, and after, I am absolutely at my worst mentally as much as physically and though I think I’m usually good at hiding it, over the past while it has gotten on top of me.
A lot of that is my own fault, I let my medication run out and tried to deal with the pain au natural. Like a thick.
I suppose I hoped that, if I did my best to ignore it, then it would just go away.
However, I recently had two really bad attacks in a very short period of time and became impossible to live with to the extent that I thought, for the first time, that maybe it’d be easier for everyone I care about not to have to put up with the moaning, the mood swings, the snapping at my son for absolutely nothing, the finding fault in everything my wife says, the all-en-composing sense of ‘meh’ about anything because all you can think about is the pain you’re in.
Again, I don’t mean this in a suicidal way. Not even close. I mean it in a “it’d be great to run away and not be such a pain in the hole to everyone” way.
But, really, that’s not very likely to help.
After meeting with my doctor, I’m not only back on medication to help manage the pain but he has also changed it to something that maybe won’t feel as much like someone has turned an electric blanket on to warm my brain.
There are other things that can be done, other avenues that will be explored but, despite living with TN for some time, it’s really only now that I’m getting my head around the fact that this could be with me for the rest of my life.
That’s not a particularly pleasant thought. Nor is the idea of waking up every single day wondering not if, but when the next attack is going to be.
But, without wanting to sound PEAK DAD here, you do just have to get on with it all the same.
I mean, eating can hurt but it hasn’t stopped me. Talking can hurt and sometimes — quite a lot of the time actually — people have to tell me to shut up. Laughing can be a repeat trigger but I wouldn’t swap the pain for not knowing any of my brilliant family, friends and colleagues who make me chuckle on a regular basis.
Getting an accidental headbutt from my toddler is definitely the worst though. I wish he’d stop doing that.
1,000 or so words in and I still don’t really know why I’m writing this, other than the fact that talking about TN openly for the first time with people over the past few days has really cast my situation in a new light.
I’ve gone from possibly the lowest I’ve ever felt mentally to having some hope that, if I actually explain to people what’s going on, then they can have more of an understanding of how my behaviour or even just to help people spot the signs I’ve had an attack.
Of course, this is not a Get of Jail Free card to excuse any and all terrible behaviour. But if I’m being grumpy, or difficult, or quiet, or distant, then tell me. But just realise that, most of the time it’s probably not you.
It’s almost certainly me and the world’s worst super power.
Steve O’Rourke is a sports journalist with The42.ie.
Fair play to u for putting ur story out there. Can’t be easy. All the best.
My own mother suffered with this for years and got an incredible pain in her face along the side of her nose under her eye. She went for surgery in the late 70s and had some nerves removed and never looked back. Possibly not exactly the same thing. It was just referred to as neuralgia at the time. Hope you get sorted as it sounds painful.
My late mother in law suffered with TN. With her face buried in her pillow she would plead to commit suicide. It was extraordinary the conditions she would be in. This was 40 years ago and her meds and treatment did little to minimise her pain. We would cry tears holding her trying to give comfort. She lived to 73 before a merciful illness took her. I wish you a better life.
Must be so tiring sorry for ur pain
I got this after I had shingles in my mouth so I know the feeling. Medication and heat help plus sharing with others who have the same thing. Best of luck with it.
I can only imagine what you are going through. My sister suffers badly from this too, she also has MS.
The way she describes the pains in her eyes, face, teeth, etc is horrendous.
Hope they find some suitable solution to alleviate the pain for you. Take Care.
And we moan about a headache.I hope things improve for him.
I’ve also been diagnosed with trigeminal neuralgia, can I ask what meds you taking? I’ve been on a few that didn’t give me any relief.
Hi Emma,
I’m on Tegretol and Lyrica at the moment and they’re holding off the worst of it since I started. Apparently they work even better as they ‘build up’ in your system so fingers crossed.
Steve
Thanks Steve, the last flare up I was prescribed lyrica and neuronton but it had little effect. My doctor changed me to tegretol so hopefully that will work the next time it happens. Glad you found relief with the meds. Such an unbearable condition. Thanks for writing this article.
I too have TN. Thankfully my bouts are few and far between. I am on the same meds. I have never felt pain like it. And I’ve had 4 children! My heart goes out to you suffering daily. I’m thankful that I don’t. Though my doctor has said it can happen to me that my next attack won’t leave.
Steve, lyrics does build so if it’s working for you it may well keep improving. Obviously it’s not a drug that can just be stopped (trust me on that one so never do that!)Terrible, terrible condition I wish you relief from it. You’re very brave.
Tegretol has worked really well for me over the years, it’s actually about 6 months since my last attack. Hopefully it’ll work just as well for you
Hi Emma, not sure if you are reading this, but I have also had TN for over a decade. I carried out plenty of research in that time, as doctors were only prescribing strong pain killers/ anti-inflammatories etc..when it got bad.
I asked to try an low dose amitriptyline, which as older type trycyclic antidepressant, but has found to be great for off the label complaints too.
It is routinely prescribed, I learned, for people with neurological problems. Since going on it over a year ago, I have had ZERO pain. This is first year out of 15 that I have been pain free!!!
The other thing jaw specialists tell you is not to be biting hard objects, pencil ends, finger nails, and such, as that can cause the jaw swell putting pressure on the nerve as the years go in. The jaw muscle can pull your jaw out of alignment, thus leading to the nerve pain.
Sadly, once bad habits/jaw misalignment have been ruled out, there seems little else that you can do other than medication.
[This was my experience/research. im not here to provide medical advice in lieu of you seeing a consultant] :D
Lyrica takes a while alright – I loved being on it. It was like having calming elevator music playing in my head all the time. I still yearn for it when I hear ‘The girl from Ipanema’
I’d advise you to keep a drug diary and pain score – I kept a spreadsheet and pain went from 9 to 4 over 2 months.
I was wondering dowhich you think, Lyrica or tegretol work better? I dont have TN but have a nerve condition and was treated with Lyrica and amitriptyline in the past. I get flares ups and the pain is very bad. Can you tell me what dose of Lyrica you are on? and also tegretol ( i’m more curious about this as lyrica is so expensive). Do you think its successful on its own to treat the pain?
Cymbalta has worked well for 6 yrs. I also have a supply of emergency drugs to relax the muscles when getting a flare up. On lyrica for inflam arthritis and helped as well
Great to see an article about Trigeminal Neuralgia. I’ve had it since I was in my teens but it only became a big problem in my thirties when I was on so many drugs to manage the attacks, I was like a walking zombie for months not functioning. There’s a great support group on Facebook ‘Trigeminal Neuralgia Ireland’ which meets up a few times a year in Dublin. People come from all over to learn about the latest treatments and share info. Great to feel your not alone in this, you have several hundred people in Ireland with this rare condition and it’s been of great benefit to connect with them. Best of luck.
You’re very brave.
And we moan about a headache.hope he gets better
Came across a documentary a few years back where they showed promising results from psilocybin mushrooms in some cases giving almost instant relief.Now I’m not suggesting running out and eating random toadstools but with a bit of research and some help from a seasoned mushroom picker it might be worth a look. Psilocybin mushrooms by the way are only illegal if they’re dried or otherwise processed.
LDN is a powerful pain reliever and I prescribe it regularly for severe chronic pain, mainly in fibromyalgia. It cannot be used with opiates as it is an opiate antagonist..I have never prescribed it for trigeminal neuralgia but I am aware of good reports in some but not all cases. LDN (lowdosenaltrexone) is an old cheap drug but few of my colleagues have heard of it. It is also available on the GMS and some pharmacies such as Rafftertys in Stillorgan make it up in liquid form too. Note that it takes a few weeks to work.
Thank you so much for sharing the info about LDN. I have fibromyalgia and I’ve never found any relief during a flare. I currently take Amitriptyline and Cymbalta. I’m going to ask my GP about LDN.
steve has a distinct medical condition, described perfectly above, that has a prescribed relief plan. unprescribed anti-depressants, such as naltrexone, should never be advised, even in their quack homeopathy format. this article has nothing to do with fybromyalgia, so stay on track – good luck, steve, btw.
I’m perfectly aware that this article has nothing to do with fibromyalgia! But thanks for pointing that out just in case I’m thick ;)
I responded to a comment that was made by a well known GP because he happened to mention fibro.
and I’m just pointing out that the version of the drug mentioned has no medical approval, is dangerous for patients who are on opiate based programme (like TN sufferers) and is explicitly not recommended by relevant organisations like MS Ireland. Both your comment and your well known GPs comments are not evidence based are are known as snake oil solutions for a reason.
Here’s what I should have said to you in my last response:
I was replying to a comment made by somebody. I was not talking to you so please mind your own!!
that’s fine, keep your replies private then – this is public and if an alternative therapy advocate is pushing his natural complimentary remedies, and you are advocating them, then it is right that this is called out. if you want a private discussion, then fro.
Sorry to hear you are living with this also, Steve. I wish I could give you a cure but sadly I can’t. It’s hard living with TN, especially because you can’t laugh (well, I can’t), eat hard things, sit next to cold windows, touch my face, stress out etc otherwise it feels as if knives are being stabbed in my ear, temple and the top of my cheek. If it’s not this, it’s dull, nagging pain for days. Totally get it so what you write about being grumpy or quiet. Sometimes society doesn’t really understand but at least you’re raising awareness and living life as best as you can. Praise to you so!
Like you, I write about it also and my top two are also the ones causing me grief. Feel free to check my articles on it, these are just two but there are more on the website: https://irelandms.com/2016/07/14/one-life/ and https://irelandms.com/2016/05/14/tnbackground/
Steve, I’ve never heard of TN before. Judging from your post your so so brave to share your experiences with us. My thoughts and prayers are with you Tommy
definetly the worst pain u can experience. I was treated in UCHG by Mr. Kelly who worked wonders. A 15min dose of oxygen relieved the pain by 50% followed by a month of medication, lyrica and tegrenol cleared the cause with a cocktail of other drugs. cant thank mr. kelly enough. good luck. i hope that you have the same good fortune that i had.
Thank you for writing this article. I also have TN. The pain is terrible. I had a stroke a couple of years ago so not sure if it is related in some way. Lyrica is very good to keep the pain at bay and I am having acupuncture which is helping greatly.
A year in and on and off attacks? You’re one of the lucky ones.
I’ve had some form of neuralgia now for over 10 years. It’s constant, 24/7. The pain never ends and it’s extremely depressing. I agree that this is the worst pain in the world.
I’m on a cocktail of medication that brings some relief: Difene, Trileptal, Amitriptyline & Solpadol. The problem here is that the medication will probably end up killing me, before I ever find a real solution. The tablets just mask the situation a bit, rather than cure it.
I decided to go off the tablets for a few weeks to see if I could live with the pain, suffice to say, it was a terrible idea to try this. If I had a gun, I would have killed myself. The pain was horrific. Absolute agony.
This condition literally ruins your life. I have two kids and barley get the opportunity to do things with them, due to the many triggers that make my pain even worse, and negate the partial relief that the medicine offers.
I don’t feel enough is being done to investigate this horrible condition.
Great read Steven. Hopefully your pain eases soon!
I know somebody whom ties ice cubes into a light rubber glove and places it on the back of her neck just at the 1st vertebrae in the groove and lies on it for 20 mins.I wish you were pain free
Cannabis would help. Whatever about the current legality, it genuinely sounds like it would help manage the pain of your condition.
I can empathise with you Steve . I was diagnosed with tg after I had some dental work done. It is how you describe it like a bolt of lightning. I am lucky though , I have only had a couple of bouts but live in fear that I will get another attack . It’s a life sentence until there is a cure . Elizabeth
A very interesting article Steve. The old saying “health is wealth” is one a lot of people don’t appreciate. Best of luck and thanks for sharing your story.
My heart goes out to you! What an open and informative article. Thank you.
Well done Steve on highlighting this condition.Stay positive.With the way medicine and technology is advancing,a cure might be in the very near future.
Steven contact me at Chris.e.millar@ hotmail.com if you want to know about my brothers t d are even how I handled my Steven Jonson syndrome my brothers is terrible tardive dyskanisea
Thank you for your article. I also suffer from TN. The pain is terrible. I had a stroke a couple of years ago so don’t know if it is related in some way. Lyrica is very good to keep the pain at bay and I also find that acupuncture gives me good relief.
Hi Steve, well done on writing the article and making people aware ofTn. I too am a chronic pain sufferer ( different condition ). Have you checked out ‘Chronic Pain Ireland’. They don’t cure but they do help. Take care
I wrote a piece above mentioning a very useful treatment for TN called LDN. I suggest that one should put the words LDN Trigeminal Neuralgia in Google for lots more more information. Three years ago I took part in a film for TV2 in Norway. There were 300 people on LDN there. Six months later 15,000 people were on it for numerous conditions. Other conditions are mentioned in http://www.lowdosenaltrexone.org and http://www.ldnscience.org. There was an article recently about LDN in the British Medical Journal about severe pain.
How do they know it hurts like being hit by lightening ?
Did someone with this condition get hit by lightening one day and compare ?
It’s a quandary.
Let me assure you, it absolutely feels as bad as lightning looks. It makes you yelp while talking, or when you touch your face, eat or feel cold air. It’s called “the suicide disease” for a reason. By the way, ignorance much?
Interesting that you mock those who state it feels like lightniging when you yourself have never experienced either condition.
Trigeminal neuralgia is caused by misalignment of the upper cervical vertibrae, usually the facet joints of oxiput and C1. A force goes into the facet joint which causes the vertebrae go beyond its normal range of movement. This causes pressure on the nerves and that in turn causes many of the disorders in our heads which we suffer from. Trigeminal neuralgia is only one of them. Others include migraine, sinus, vertigo, stress, bad temper and there are many others. I use a combination of therapies to clear these misalignments and have a very good success rate of clearing up these disorders . It always requires a few visits but a client will know they are on the right track after the first one. Visit my website http://www.carlowpainclinic.ie for more information and when on the site read the Spinology page first. Generally speaking western medicine does not accept that the facet joints go out of alignment but I have been freeing them up for the past 32 years and other practitioners started doing it in the late 1800s . There must be something to it to be going on that long. Brian Moore. Spinologist.
It’s strange my brother was not on anti psychotic tablets he was on a tablet for vertigo which is used to treat vertigo and schizophrenics , it the same tablet so folks be careful what tablets we take it has ruined his life , speech gone his neck is stuck to the left all the time and constant twisting and tounge movement .
You are a strong and brave person, Steve. I suffer from chronic migraines, so I can relate, but you have to cope with so much more. Thanks for sharing and God bless you.
My brother got td four years ago I know we’re you coming from
For anyone who is dealing with chronic neuropathic face pain ( which by definition is what TN is), either as a patient or family member, I would extend an invitation to join and participate in any of the Facebook peer-to-peer support groups which focus on this type of pain. Among the 20 or so groups which I support, there is an overlapping membership of perhaps 15,000 people around the world. The message of these groups is one of great power: “You are not alone”. As a Facebook member, you can search for “trigeminal” or “TN” and find several of these groups. Most are members-only, providing a safe place where you can vent, seek advice from others, search for a doctor who knows what you’re experiencing, or lend your own support.
All are welcome.
I mentioned LDN above recently for the treatment of trigeminal neuralgia. Almost everything else is useless. I also mentioned that I had never prescribed it for that condition although I have prescribed it for dozens of different conditions and for hundreds of patients for over 10 years.
This morning a patient who is doing well on LDN (lowdosenalterexone) for MS came to see me for a new prescription. He mentioned that his trigeminal neuralgia has gone for the past 3 months and wondered if LDN worked for that. I am sure that it did. Ask your GP and give it a trial for at least 2 months. See http://www.lowdosenaltrexone.org or http://www.ldnscience.org for more information.
Contact Trigeminal Neuralgia Reduction Programme 0044772728820 or visit http://www.brainhelp.info
I used to suffer from Steven Jonson syndrome to but a tablet called dapsone cured me
I’ve had TN for 10 years and suffered all the pains and anxieties you described.The doctor who finally diagnosed it correctly said “I cannot cure it but I can control your pain & it won’t kill you” If I had to continue with the pain I would have killed myself but fortunately after trying all the alternatives and spending a fortune on medication and alternatives, I ended up with a neurosurgeon in Beamount Hospital called Daniel Rawluk.
He carried out Microvascular Decompression (MVD) on me to relieve compression on a cranial nerve which was a complete success. I only wish I had known about him earlier, and to anyone suffering TN I’d say don’t delay, there is a cause and remedy for this. Immediately afterwards I was taken off all medication & haven’t suffered the slightest pain since. That was 10 years ago and am I grateful!!
have your say