Trigeminal neuralgia or something else?

[chubbylover78]

I have had several bouts of pain along my upper and lower teeth over the past 10 years. The pain is intermittent and lasts in total about 3 weeks then goes as suddenly as it arrived. I have had 2 teeth removed so far but I still get the pain where the teeth should be. The last time it happened was in August this year and after 4 trips to the doctor and 1 to the dentist I was referred to the hospital. The Dr at the hospital said I had tooth decay in 7 teeth and that's what's causing it even though my dentist can't find anything wrong.

The pain is excruciating when it happens and painkillers don't work, it lasts for a few minutes and then it goes, it happens at any time and not just when eating or drinking and it doesn't wake me up during the night. The latest bout was the worst yet and my gp put me on antibiotics as he said my ear was red but not swollen so it was probably the start of an ear infection. I compleated the whole course but it was getting worse so I went back and was prescribed an antibiotic spray and codeine. These didn't work either so I went to the out of hours gp and was told it is more than likely trigeminal neuralgia and to see my dentist to rule out my teeth.

I have a broken tooth with no pain or discomfort (been broken for 3 years) and my dentist said the pain I was getting wasn't consistent with tooth pain. I'm at a loss as to what to do, I know that there's a chance it can be my teeth but the pain is too irregular, the dentist has never found anything when I have gone, pain killers and antibiotics don't work and the Dr at the hospital was useless and wouldn't listen to what I had to say.

I'm angry and upset that this isn't being investigated enough and it's just easy to be told it's my teeth. The pain in the side of my head and along my jaw (upper and lower) as only ever been relieved a little by pressing a hot water bottle on my face and head and I will sleep on one at night when the pain flares.

Advice from you lovely people is my only option now, other than having 7 teeth removed that never cause me problems.

[Spud7]

I'm no expert but it sounds like TN to me. Have you mentioned to your GP what the out of hours GP said? Just keep going back and ask for a referral to maxfax clinic and then when you get there make sure they book you in for an MRI. It's not fair that they keep fobbing you off. I've been pain free (touch wood) for over a year now but I'll never forget that pain. Also ask GP to prescribe tegretol- if that works its likely it is TN. Side effects can be bad at first but to get shut of that pain it's worth it! Good luck, let me know how you get on.

[chubbylover78 in reply to Spud7]

Thanks for replying, when my appointment came through I was expecting to have an mri but they just took an x-ray of my jaw and decided it was tooth decay without even considering anything else. I even told her the pain was like a hot ice pick in my head that sent shooting pain along my face and not from my teeth but she dismissed it. I know it's a hard thing to diagnose but surely if my teeth are as bad as she says I would have other problems too.

[Hidden]

I had this last year, it was the most awful pain I've ever experienced so you have my sympathy! Hot water bottles helped me bear it. I'd had bouts of pain for 4 years with dentist telling me teeth were fine. X ray after X ray of teeth came back clear. Then I had the really awful bout and went to GP who said it was textbook TGN and put me on amitriptyline. I'd started immune suppressing drugs 4 months before and I'm guessing that they allowed the real problem to surface. It was my tooth: it was cracked top to bottom on 2 sides which didn't show on x-ray, basically the filling was what was holding it together. I had it taken out and although there are twinges now and then no repeat of that awful pain - and the tooth that was cracked was not where I expected it to be! I thought the problem was 2 teeth forward, but when the gum started to swell it was obvious it was the very back tooth. A friend of mine in Australia (where dentists seem to be much more accommodating!) was plagued by toothache. An X ray revealed the roots went right up into her sinus cavities and she actually had sinusitis. You definitely need further investigation to find out exactly what it is and get the correct treatment, good luck!

[chubbylover78 in reply to Hidden]

My dentist couldn't find a problem with my teeth that would cause the pain I was feeling. I have a broken tooth and the filling came out and have never had pain from it. Two teeth were removed but the pain was still present, the Dr at the hospital said the pain was due to tooth decay but I can understand why? If my teeth are as bad as she said, then why has the pain only happened a few times in 8 years with no tooth abscess present and antibiotics and painkillers not working. The last bout of pain was coming from my right side temple and just above and clearly radiating to my face but the Dr wasn't interested in hearing what I had to say, just blamed my teeth.

[Rugged1]

I have had Trigeminal Neuralgia for the past 18 months in the right hand side of my face. The attacks are excrutiating! I don't have any dental issues. I originally started taking Pregabalin for this but my Neuroligist then prescribed Lamotrigine, 50mg in the morning and 50 mg at night (25mg tablets). You have to build up to this at one tablet a week until after 1 month you are taking 4 x 25mg tablets a day. The attacks stopped for 10 months so like a fool I reduced my amount to just 50mg a day. The attacks have now started again and they are much more frequent. I am now having to build back up to 100mg a day but I know that this will not be enough as the condition keeps developing over time and thus I realise that I will have to increase the dosage yet again. I have also just started a course of acupuncture for this as some Neuroligist have identified this as offering some relief for the condition. What I would really like to know is can I go straight back to 4 tablets a day or do I have to build up again at one a week? Note: When I take the two tablets during the day the attacks are greatly reduced but at night I am really suffering, one tablet at night doesnt offer any relief at all.

[Coppertel]

It sounds very much like TN to me.

After seeing my dentist, seeing gp, getting a second opinion from another dentist I really didn't know what to do. Like you I'd been given antibiotics by the dentist, and strong painkillers by gp. Nothing worked, the pain was like nothing I'd ever experienced before. I then saw a different gp at my surgery, and he diagnosed TN.

My pain came with no warning or triggers, would last for several minutes then stop as quickly as it started. Was on one side of face, back bottom jaw.

I've been pain free for well over a year now, but will never forget the pain.

My back bottom teeth (one side) are still sensitive. I make sure not to eat on that side, and use a baby toothbrush for those teeth.

For me it's a small price to pay for not getting the lightening bolt, zapping pain.

If you haven't already, go back to your surgery, and see a different gp. It took me almost five months before I was listened to and correctly diagnosed.

Good luck, and I hope you're pain free soon.

[chubbylover78]

Hi thanks for commenting.

I'm at the dentist on 22nd February and will make sure they explain to me what my xrays mean as I was seen by a doctor at the hospital and not the consultant I was given the appointment with. My teeth are also more sensitive since the boys of pain started so take care when brushing and eating too. I'm aware that tooth decay can cause pain but not several years apart and in August 2019 there was nothing wrong with my teeth according to my dentist so can't quite understand how 7 teeth can have decay over a short space of time.

[koffeekat99 in reply to chubbylover78]

Hi. Have you also asked your GP for referral to a neurologist (preferably where they specialise in head and face pain)? I had a similar story of being passed between dentist and GP with both claiming that it was the other I needed to see.

In my case it was complicated by the fact that the trigeminal pain was from damage to the trigeminal nerve caused by a dentist. So I also had a dentist trying to pretend nothing was wrong with the nerve in case I sued him!!

Symptoms are different for me as the pain is constant. So mine isn’t TN and I have a slightly different diagnosis linked to the trigeminal nerve. But I agree that trigeminal pain is awful. Intermittant pain is more consistent with TN diagnosis. I was told only a neurologist can diagnose it. So ask to see one as well as getting the dentist to investigate.

It could still be dental but perhaps get copies of your x-rays and get them to point out the problems. Is the x-ray machine at the hospital better than at your regular dentist and therefore more likely to show something? But also the x-ray only indicates a possible issue rather than it being definitive. So get them to explain the hospital x-ray and to go through all possibilities.

Good luck. The pain is no fun at all but I felt even worse for the lack of coherence from the health professionals involved. I cried all the way home from my diagnosis with the neurologist, partly because it had been such a struggle (unnecessarily too) to get to that point.

[chubbylover78]

Hi, I've been passed from doctor to dentist too and it was my dentist in the end that referred me to 2 different departments in the hospital but I only ever received an appointment to one of them. I had a full mouth xray at the hospital that shows all your teeth and jaw at the same time but the teeth still looked the same asd the dentist xray.