Trigeminal Neuralgia - any experiences please?

[Flightattendant12]

Hi,

Apologies in advance for being a hypochondriac. I may have something totally different but have been reading up and this sounds like what is happening at the moment, so I'd be really grateful if anyone has any knowledge they can share.

About 5 weeks ago I started having jaw pain. It started off like a sensitive tooth, but the tooth in question had been crowned so the dentist didn't know what to suggest. It went on, on and off, just a sudden pain or a dull ache - other times it was fine.

I put it down to stress or sore gums perhaps, started using medicated mouthwash etc but it came back.

The other night I woke up dreaming about pain, and found it was really sore - went back to sleep after a few minutes as it had gone again. It happened again a few times over the next few days, each time a sudden onset, not caused by anything I could pinpoint, really really hurting for a few minutes, then fading (a bit like a contraction) and I wouldn't feel anything much for hours - and then it would happen again.

I went to the dentist and told him it had changed and he had a good look round - tapped all my teeth, but none really hurt noticeably more than the rest. I was having an attack during the appointment and it was making me cry in pain, I think he felt he ought to do something, so he took a lot of x rays, said he could see a leaky filling which he filled - that was yesterday, I came home, had another attack, was told to come back today if it got worse. I took apinkillers and didn't have any trouble until 7.30 this morning when it hit with a vengeance.
I went in again and it happened while I was there, again - this time for longer, maybe 10 minutes, until he injected my jaw with anaesthetic. He decided to drill a different tooth and put in a dressing, has given me antibiotics and booked me for an RCT in April.

The problem is that it isn't like tooth pain I've had before. Since this morning, I have only had two further attacks, in between it has not been hurting.

When it happens it is not related to a specific tooth, it is the entire jaw which aches - and now, today, I am having pain right over my face (only on that side). It feels like lightning, with little electric shocks on my cheek, by my eye, behind my ear, and underneath my jaw where there is a little gland which throbs.

It happened a while ago, an hour after taking two ibuprofen. They don't seem to help or prevent an attack.
It's so weird the way it comes on suddenl;y, is bad enough to stop me in my tracks, I'm crying, have to go and lie down, want someone to amputate my head, it's awful.

Then it will gradually disappear and I'll be fine for a few hours.

Please can anyone help me - I was googling referred pain and it came up with this. I just want to stop it, it's hellish.

This happened to me last summer. The dentist quickly decided my teeth were okay, recommended some strong painkillers and said it might settle down after about a couple of weeks. I diagnosed it as trigeminal from what I read on the web and my GP agreed and prescribed some heavy duty tablets to deal with it. I read the side-effects of these and decided I was only going to take them if absolutely necessary - if this became a chronic situation.

Long story short, after a couple of weeks it did disappear, though I carry the strong painkillers everywhere in case of a relapse because the pain was incredibly awful. Strangely I had a sensitive tooth that really flared up toward the end of the two weeks and now is no longer sensitive - puzzling the dentist.

I really sympathise. Perhaps get a GP diagnosis? There are vario different types of treatment. I prayed really hard for it to go because as a chronic condition it's really pants.

Wish you well.

Thankyou Fishperson, that is encouraging - I'm sorry you have been through it and really hope it doesn't come back again.

I'm hoping the dentist is on the right track although he didn't sound very sure what was going on, as TN sounds like something of a nightmare. I've had a lot of tooth problems in the past and often been in pain but not like this - and usually it would be more constant rather than in short burts and then going quiet again

Really weird.

Thankyou for sharing your story x

That is funny about the sensitive tooth thing btw, I wonder if there is a link somehow. I kept saying that was where the pain seemed to centre earlier, but he said it can't be that one as it has no nerve.

I don't think I can handle this if it continues, it's disabling isn't it, when it happens.

I have made a GP appt for Monday so will see if it lessens over the weekend. I'm quite scared about the weekend tbh, as Dr and dentist are both shut. But will keep taking antibiotics and see what happens, just in case it is a tooth thing.

I experienced trigeminal neuralgia about 7 years ago after having headache that wouldn't shift, electric shock sensations on being touched on one side of face and head. Didn't have any tooth issues with it though. Take it easy this weekend and your gp will make sure s/he investigates fully. May well be something totally unrelated -beware self diagnosis from t'internet!

Ok, will wait and see what they say. When i'm in the middle of it I get so panicky, and start thinking 'what if I have something really dangerous'

My dentist is a complete darling but he doesn;t always inspire confidence, as he is so shy and doesn't say much.

The achey jaw might be due to temporomandibular joint dysfunction.

Do you grind or clench your teeth at night?

This info might be helpful It mentions trigemminal neuralgia.

Mmm thanks Jalopy, I have read it but not sure enough of a match to the type of pain I'm having - someone else suggested TMJ a few weeks ago and I thought it might be at first as I have been stressed lately.

But it seems to have moved on from that to really electric-shock type pains, so I don't know if it is likely any more.

I'll bear it in mind though and it's useful as my jaw does click on the other side - he noticed that today. Thankyou x

I totally understand how worried you must feel but certanly if it IS trigeminal neuralgia, then it can be dealt with easily anyway - I forgot to say that I was given a low dose of antidepressants to block the nerve sensations and numb the pain and it did work and I was only on them for the course they gave me - no lasting medication.
As I said in my last post, though, it's best not to try and self-diagnose, not least because you could get very worried about what it might or might not be! I can imagine that being stressed about it won't help matters so if you can possibly hold out until your gp appt on Monday that's the best thing to do - and you can always offload on here if you're anxious!!

Thanks Peachface,

you are very reassuring. I have to keep remembering that it isn't my responsibility to diagnose - I always get very het up that if I don't give them enough info i'll end up in trouble, when in fact it's their job isn't it.

Thankyou - will try and survive weekend and then take it from there.

I'm quite similar to be honest - always like to think I have some idea of what it might be before I visit gp - probably partly because I don't like to waste their time unless I have a pretty good idea I actually need to be there!! Let us know how things go....

Yes, I've had/have this. At first I thought I was suffering from toothache. Had very sore jaw but only on the left side of my face. Went to dentist after dentist who checked my teeth/took x-rays etc and confirmed there was nothing wrong with my teeth. I even had one tooth refilled incase that was the problem, it wasn't. It got to the point where the pain took over my life. The whole left side of my jaw was in agony and it felt like I had earache too (this is a sign of neuralgia). I spent lots of time at my doctors too, getting them to check there wasn't a problem with my ear (there wasn't!). After months of suffering I saw an ENT doctor who confirmed there was nothing wrong with me and finally a maxillofacial surgeon who specialise in problems with the mouth/face/jaw etc. He finally gave me my diagnosis of atypical neuralgia which basically meant I had severe neuralgia in my face of no known cause. Interestingly, it turned out that a really bad cold I'd had may have triggered the neuralgia off...
The consultant said he normally treated neuralgia with anti depressants, something to do with the the drugs helping the nerve pain but to be honest I didnt want to start taking anti depressants and found other ways to cope with the pain. I found a hot flannel resting on my jaw helped a lot. However, the thing that helped me enormously was a sauna, something to do with the heat helping the nerves in the jaw... I still suffer occasionally with this but it's not as bad as before.
I recommend asking your gp for a referral to a maxmillofacial surgeon as they're the only people who can really diagnose neuralgia.
How are you feeling now flightattendant? I do hope you're feeling better.

Flight - I've had this too although it didn't affect my face so low down, or my teeth it was more around my temple to my nose, across the cheekbone. I had it really badly around 10 years ago when I was very stressed and run down but it seems to be triggered by the cold too. I was prescribed an anticonvulsant I think it was Carbamazapine (?) but I didn't take it due the side affects. It settled with pretty big doses of Ibuprofen - these days I can predict an attack because I tend to get a bit of a numb but burning (oddly) area before it flares so I hit the anti-inflammatories and can generally fend it off.

Thankyou, Peach, Saggars and 3ofus. I didn't know it was something anyone would have heard of, you have reassured me that it isn't a dreadful outcome every time though your experiences do sound horrid

It has turned into more of a constant ache now - the familiar version of toothache. I'm not sure what it was up to before, maybe being a canine tooth it was pressing on the nerves in a different way - I think they have longer roots or something? (so my mother says, she is fount of all knowledge of course...?!)

Am just holding out till I've finished the a/b's and see what happens, have got that appt tomorrow anyway in case but I am thinking it's probably more tooth related now, it's stopped making me cry and is now just making me an irritable cow .

Thankyou ever so much for helping me out with your replies, I as so freaked out and it really helped. xx

Hi,
Just been diagnosed with trigeminal Neuralgia
Have only had it about two weeks. bloody awful.
Was going the dental root, but ex chiro person suggested that I needed to see a doctor. Dr. confirmed trigeminal neuralgia and prescribed carbamazepine. Find it reacts positively to warmth (not heat!) and badly to cold and tooth brushing. Any handy tips? What anti inflamatories are working with others if any????

Hi
My DH gets this. When he has an attack he takes carbamazepine - starting off low and then increasing the dose and in reverse to come off it. He only takes this when it becomes unbearable.

When it is not so bad he takes paracetamol and ibuprofen together and avoids anything too hot or cold. Warm compresses can help and he brushes his teeth with warm water with a soft toothbrush.

I had this several years ago - I'd get attack after attack and nothing relieved the (intense - worse than childbirth) pain. I was prescribed amitryptilene which didn't touch the pain at all. Eventually, a locum GP reckoned I did have trigeminal neuralgia (my regular GP was convinced it was sinus pain despite having been sent for sinus x-rays) and I was prescibed tegretol, an anti-seizure drug. BINGO! That night I was pain free for the first time in many days and actually managed to sleep for the first time in 3 days or so because the pain had been that bad.

I eventually had to come off the tegretol after just over a year because I found myself unexpectedly pregnant and was terrified that the pain would return - that was 6 years ago and (touch wood) no significant pain since, just the odd day or two here and there.

I first had this some years ago. It was horrid but responded well to amitryptilene. It went after a week or so and hadn't been seen since, until a few weeks ago when I complained of "face ache" in the morning, and spent the afternoon grabbing my head when the shocks came.

Odd though, was just a day (but I am having other neuro symptoms), but then the symptoms are that it can go for months or years at a time.

Do see your GP and try some meds proven to help nerve pain as usual painkillers get no-where near.

Update on Gin4me situation
Went to doctor. Got Tegretol. started on 2x1 per day after 1 day started to feel less intense attacks. By then I had read up about it on the internet so I knew that I wouldnot kill me, but could drive me to Suicide so that was nice. It also seems to be a thing for life! Lovely!!! However as the pain diminished I felt another pain in area (Third one!!!) Went to see my friends lovely greek dentist he xrayed and my wisdom tooth needs to be hacked out! meanwhile reactions to cold less severe and sonic toothbrush def. better than electric!!! 2x1.5 tablets of Tegretol made me feel like going to sleep and came of the extra half after 2 days. Anyway pains diminished further and now am on 2x0.5 tablet per day and it seems to have gone. Watch this space!!!! Warmth def. helped. drunk buckets of warm (not hot) tea. Took some out of date Naproxen which still seem to do the job. Paracetemol and ibuprofen did not. Loads of warm wiskey at 3am worked as well!!!

First I have to say that I am full of sympathy for you because I have trigeminal neuralgia and have had for about 7/8 years. It is a horrible condition and the pain, when it comes, is far worse than labour. They call it the worst pain known to man.

I too thought I had problems with my teeth when I started to have lightening electrical shocks in the area above my mouth. This happened when eating, drinking, washing my face, cleaning my teeth, walking, when a gust of wind blew against my face.

My Dentist could find nothing wrong with my teeth, but I kept on getting this pain. It eventually went after about a month, but sure enough about 6 months later it was back again and I was back at the dentists. He took out the nerve in the tooth that I
though was bothering me, but this didn't help. In the end he told me that there was nothing wrong with my teeth, but he thought I had something called Tri-geminal Neuralgia. I went home and did some research on the internet and all the symptoms fit.

I went to my GP with the letter from my Dentist. She gave me Tegretol as well, but it didn't seem to help much. I then moved to another area and so signed up with a new GP practice - again all I was given was tegretol and nothing was ever mentioned about referring me to see a specialist.

It wasn't until my DP (now DH) and I went to work in Belize that I got proper treatment and proper information. Because there is no Health System in Belize everything is private. I had an attack and so went straight to see a neurologist and told him about what I had. He told me that I needed to have an MRI scan which will show whether I had TN (it's caused by the nerve insulation being worn away and a blood vessel pressing on this part of the nerve and thus causing the electric shock type pain). In the meantime he have me three differet types of medication (a real cocktail of drugs) and for the first time ever the pain seemed to go though I was left pretty drowsy. I had to take the week off work.

We then moved to an island in the caribbbean and it so happened that as a work benefit we got private health insurance (big bonus). I did some more research on the internet and found Professor Hugh Coakham in Bristol whose specialises in TN. I made an appointment to see him and I had an MRI scan within a week. 4 weeks later I was booked in to have Microvascular Decompression which moves the blood vessel away from the nerve and stops the pain.

I was pain free for 2 years and then it came back again!!! I knew that the op could leave me without pain for 10 years so I was a bit surprised.

I had a particularly bad attack after my DD was born (3 years ago) and I hadn't had a recuurance until YESTERDAY!!! The pain is back so I am of to see my GP tomorrow to get tegretol. I have to take about 6 pills a day at 4 hourly intervals and that numbs the pain, but it isn't ideal. I will be going back to see Prof Coakham at the earliest opportunity as there are other treatments available and whilst I have insurance I am going to make use of it.

I would recommend that you get a referral from your GP straight away. DO NOT MESS AROUND. This is a seriously painful condition.

A couple of years back I found out that a very distant relative had TN years and years ago and finally commited suicide because nothing could be done about her pain at the beginning of the last century. Nobody knew what she had and she couldn't cope with it.

This is a great forum:
www.tna.org.uk

Here is a link to the Neurologist I saw. He is a lovely, lovely man. He really knows his stuff and has a wonderful bedside manner:
www.coakham.com

Unfortunately he only practises privately now.

Goodluck with everything and if you need anymore info please don't hesitate to contact me.

normally if its tooth related or an infection..it hurts more to lie down as there is more pressure on the nerves from the increased blood flow with your head being flat. trigeminal neuralgia effects three nerves see web page.
en.wikipedia.org/wiki/Trigeminal_neuralgia

there are lots of successful treatments if it is not tooth related

If your TN is causing long term pain, it might be worth asking about being referred for stereotactic radiosurgery - it's a very precise small dose of radiation, and is very effective with little side effect. Not many UK centres do it (maybe 7), but you only have to go once for it to be done, so worth travelling for