Possible Trigeminal Neuralgia

Hi, I am so sorry to read your post.

Your son may need a dental CT scan, which he would have to pay for privately. I was told there was nothing that showed up in ordinary X-rays. I had excruciating pain and felt ill all over. Occasionally my face would be swollen, but dental X-rays showed nothing. I had an MRI on my head and that showed nothing. I was prescribed repeated antibiotics and no one seemed able to help. This went on for 10 months.

Eventually I discovered there is such a thing as a dental CT scan, and when I had this it showed up that I had a weird root from a tooth that stretched up past my nose towards my eye which was out of the range of the dental X-ray. There was a bad infection at the end of this root. I had to pay for the dental CT scan by an endodontist and he also was able to do a root canal filling on this weird tooth/root.

I shall be interested to hear how your son gets on, and wish him all the very best.

My late FIL had trigeminal neuralgia.

The onset was very sudden. He was sitting in our garden on a lovely sunny day when he suddenly screamed, grasped his face and jumped out of his chair.

We thought he might have been stung by a wasp, but it was quickly diagnosed as Trigeminal Neuralgia which is acute pain in the optic nerve going up through the cheek and he was prescribed a drug called tegretol which controlled the pain.

Thanks to both of you for replying. His pain is in his lower jaw and he says it feels like a cross between dental pain and a muscle spasm. While it is happening he says he can feel what he describes as a thin tendon running along the space underneath his teeth on the tongue side. He says this seems to swell up and sometimes he can ease the pain a little by pressing on it. All very odd and distressing .

I wish I wasn’t such a worrier who automatically jumps to the worse case scenario. I have imagined a life for him where he isn’t cured or helped, can’t work, his wife leaves him and loses everything . Am my own worst enemy

Sorry, meant to add that it seemed to start when he was having an impression taker of his teeth and the dentist pressed down really hard and caused a lot of pain. Perhaps that caused the nerve damage

About a year ago I developed the worst pain I'd ever had, it was like severe toothache in every single tooth with shooting pains down my face and in my jaw. I remember sitting on the sofa with tears of pain streaming down my face wondering what on earth was up with me. I went to my dentist, who said there was nothing amiss, and I googled the symptoms and came to the awful conclusion that I had TN. I was the right age - more common in women than men apparently and more common in the over-60s - everything fitted in a horrible way. It was in the middle of lockdown of course, so I couldn't really see any specialists or even my GP. Anyway, over the course of a few weeks, the pain began to concentrate in one particular tooth, and to cut to the chase, I went back to my dentist and it turned out that that tooth needed root canal treatment. I had a root canal filling and thank God I've had no more symptoms to date. So I agree with Sparklefizz, have a really good dental examination. A simple x-ray may not be enough. I will cross everything that it's dental in your son's case too. Good luck!

I’ve had this for about 3 years. I did have a dental check first, then various scans and hospital appts, and it finally got diagnosed.

It is extremely painful, and not many painkillers help much. It does make you miserable while it lasts.

I don’t use them, but there are various support sites online, FB has one, where sufferers share tips etc.

However, I was prescribed some tablets, which took some adjustment to get the dose right, but now we have, it works ok.

I still get it a bit, but nothing like it was.

Hope he soon feels better.

So sorry to read your post and fully understand your distress . Fortunately I have don't have experience if this painful condition. It does make me wonder if the damage was done when his dentist took the impression!!!!! From my experience dental impressions may be uncomfortable but never painful. If the dentist pressed down sufficiently hard as to cause a lot of pain then it that could well be the cause. I sincerely hope your son receives the scans / treatment he needs . As for you , please don't waste your emotional energy on ' what
Iff ing' !!! I am very good at that and it has never been a productive exercise! Save your energy to support your son through this very painful time. I wish him and you good luck.

Someone close to me had this diagnosed earlier this year, she thinks it followed her second vaccination although that could be a coincidence. I’m sorry to say she has had a terrible time (please keep reading!) because the medication prescribed, while reducing/ resolving the excruciating facial pain caused side effects including dreadful photo sensitivity. Even a drive in dark glasses, or watching something bright on TV has been unbearable.
Unsurprisingly, she has been very down, quite unlike her. She was told it was a 3 year waiting list for a specialist appointment but got an early cancellation recently and her medication has now been changed. Early signs are hopeful. I do hope so.

Silly old bird - our children don’t realise how we never stop worrying, do they? I bet you catastrophise in the middle of the night, you’re not alone. He may never know the cause but medication should help and, as is often the case, he may need to try more than one remedy.

All my friend’s friends have been extremely understanding, helpful and kind. Is there any reason this wouldn’t be the case for your son, people usually are. I hope he feels better soon but you mustn’t get too stressed either.

Thanks for all your replies. It’s reassuring to know others have had similar and dental treatments have been successful or pain relief for those with TN. I hope you all stay well and happy.

Shelflife, the what-iffing is something I really struggle to control. I have gone straight from A to Z and can only ever see the worst case scenario when something worrying happens. N some ways, it’s actually worse than the thing I’m worrying about. ??

Zaseret that’s very true - I usually wake at 4 am and it’s terrible to be laying there in the dark at this time of year

He does have some very good friends and his lovely wife of course so hopefully they will help him through it. He’s quite a positive person too; he has a good job where he is able to work flexibly and from him if he needs to. He lives for his two little daughters so things aren’t all bad for him.

Focus on those positives at 4am. Why would a lovely wife leave him…..

Just a quick update and a huge thank you to you all for your kindness - which really helped.
It has turned out to be an longstanding infection under his tooth that wasn’t spotted on the previous four x-rays he has had ?.
I am very relieved but also a little angry at myself for getting so anxious to the point I could hardly function. Next steps - do whatever I need to do to deal with the anxiety problem.
Thanks again and hope you have a wonderful Christmas. Xx

Thanks for the update. It's good to hear that this nasty pain is under control. Time for you to stop worrying - till the next thing!
I know what it's like though as I'm the same.